Saturday, November 15, 2014

Doing ok, at least today :)

I am doing semi okay with the Crohns lately.  I am still having good days and bad days but am overall feeling in better spirits. Food is still a constant battle for me. Most things still put me in pain and as a result, I eat very little.  but somehow, I've gained almost 60 pounds since my surgery which is baffling my doctors. We're going to test my thyroid to see if something is out of whack. I do wonder if it's simply all the carbs I am now forced to consume but, who knows.  Maybe all the illness, tpn, weight loss and now back to eating… maybe my body is just holding on to everything.  Who knows. Still trying to figure out what my next steps are but just putting, or trying to, it out of my mind for a while.

We have a big trip coming up next week and after all our family has been through in the last year, we need it. We are surprising our kids (well my son found out but I've confused him enough again that he is unsure) with a trip to Disney and we only have a week til we go! We're going with friends of ours and their kids and I could not be more excited about this. I am hoping the week will go well and I won't have any ostomy leaks, won't get sick from eating out constantly for a week, and no…or at least manageable pain. But I am determined not to let anything ruin this trip and am ready to make some awesome memories. Our kids are 2 and 5 so great ages for this!


Wednesday, October 22, 2014

I am allowed to grieve

Yes, of course I am happy to be alive.

Yep, someone recently told me I shouldn't complain about my surgery or stoma because I should just be happy I am alive.  All I have to say about this is this:

OF COURSE I am happy to be alive. I am thankful that I got through something that some people do not. I am grateful for that. But, and listen to the but, I am allowed to adjust to this new life. It has only been 10 months… and for 3 of those I thought this was a temporary thing… 10 months of dealing with something most people will never have to deal with.

I am allowed to grieve the loss of a major organ that I can never, NEVER, get back.

I am allowed to have days where I am down in the dumps and feel bad about myself and HATE this stoma, this ostomy, this bag of freakin poop on my stomach.  It's not easy to deal with.

I have good days…heck I have good weeks! But, as with any grieving process and any life change, you're allowed to have days where it's just not OK.

And when you think, well, it's been 10 months so get over it already I give you this to think about:

The first three months this was NOT a permanent situation. Only half of my colon was removed and the surgery was a temporary thing to let my colon have complete rest and heal. The stoma was intended to be reversed.

So, we're down to 7 months.

Then, I had my hospital stays (with infection that was almost a month) and then healing from the popped stitches and infection, on a lot of drugs, in a haze, weekly nurse coming to my home… that all lasted until sometime in June.

So, my real REALITY, has really only been about 4 months. FOUR months is not a long time.

So, please.  Before you judge me or tell me what you think is okay… just think… how would you deal with something like this in such a short amount of time? It's not JUST the bag.

  • It's the weight gain from not being able to eat healthy.  Too many fruits/veggies are just not an option for me anymore.  And while I am told that this initial weight gain is expected and normal and should go back down… it's not easy.
  • It's the leaks and the constant worrying that it'll happen somewhere you're not prepared for.  It's sometimes waking up to poop all over your stomach and leg.
  • It's realizing that this surgery, while lifesaving, did not cure all your symptoms…did not cure your disease. (which, I knew it wouldn't but I was hoping my symptoms would be gone for a while)
  • It's the self confidence… or, lack of. My own self image has never been terrific so, this…being different in this way and something that is, quite frankly kind of gross, is not a confidence booster.
  • It's just… accepting everything that happened because, while I've had the disease for a very long time, all THIS…. this feels like it happened REALLY fast.
I know with time I'll adjust and it really will be my new normal. Some days I even do kind of forget for a while. But, it's going to take time. Bear with me - I am a new work in progress here. Help me celebrate my good days and let me cry, complain and maybe get a hug from you on my bad days.

Wednesday, August 20, 2014

What can we do?

One of the sad things about being a part of so many Crohns, Colitis and IBD support groups is you see posts about people dying from the disease. Sadly, this is not something a lot of people hear about or know about. Complications from Crohns and related diseases can be fatal - and it's more common than you think.

Today I saw a post about a young woman (no age given but she appears to be in her late 20's) who passed away from complications of Crohns today. I've been seeing a lot of this lately and it makes me sad for a lot of reasons - aside from the obvious. I am sad that most people do not know how serious this disease is. A lot of people think it's like IBS (Irritable Bowel Syndrome) and it isn't. It is so much worse. There is still so much to learn about Crohns and I am still hopeful there will be a cure at some point.

I have done some research in various places and it appears as though the survival rate, after having severe Crohns/Colitis for over 12 years is only 77%. Why is this a statistic not widely known? Why are we only now just starting to really talk about this disease? Why do people still refer to it as a minor disease that only causes "cramps and lots of pooping"

I can't even begin to list the issues I have had solely based on this disease but I'll give it a go:

  • Abdominal pain ranging from minor to so severe I can not stand up straight. Most of this pain has been with me every day for nearly 30 years
  • Diarrhea - again ranging from mild to severe
  • constipation
  • weight gains/losses
  • fevers
  • nausea/vomiting
  • canker sores so bad they've been on my gums, tongue and down my throat - so bad I can't even drink water
  • easy to bruise
  • joint pain - every joint in my body can be affected
  • blockages or narrowing of my intestines causing extreme pain
  • fistulas
  • abscesses
  • rectal bleeding
  • numerous hospital stays
  • TPN nutrition (no eating only getting "food" through a tube inserted via IV)
  • surgeries (the latest resulting in no colon)
  • I now have a stoma and wear an ostomy bag
  • headaches
  • vision problems
  • memory problems
  • nutrition issues
At my worst this past year I could have been yet another post in a support group - and I know from how much the doctors were concerned that I wasn't too far off from being another sad statistic of this disease. My bloodwork was coming back so bad that it was scary. My iron levels were so low the count wouldn't even show up in the tests. At that point I honestly didn't know how bad I was (I have been told by my doctors since I've been better that they were honestly concerned about my prognosis) and I didn't really think that anything like that could happen to me. I didn't know it could and I've lived with this disease for almost 30 years. In retrospect, I am glad I got the surgery I did - it quite literally saved my life.

I wish more was known about this disease in the general population. As I have watched the Ice Bucket Challenge make it way across social media (and I even participated when I was nominated) I have wondered what kind of viral stunt could be done to promote awareness of Crohns and Colitis? What could we, as a community of people with this disease, do to start a movement and raise money for research?

There has to be something we can do - help me think of something and let's start our own social media movement. Let's make a stand and raise money for an illness that isn't just uncomfortable, it's literally taking lives.

Thursday, August 7, 2014

Fatigue

This flare is kicking my ass.

The pain I can handle for the most part. I've had a lifetime with it so unless it gets to the point where I can't function then I can deal. The fatigue however is almost debilitating. That's the part I'm having a hard time with right now and the part I know my kids don't understand. All I want to do is sleep ALL DAY LONG and if I could, Lord knows I would. I have no energy to do much or anything and the small things I wind up doing zap any energy I may have had. It takes all my strength and motivation to do much of anything.

We have barely left the house this week and a lot of the week has been spent watching TV (and I seriously pass out hard core while they watch) or my telling the kids to play quietly, leave me alone, let mommy rest. They're now stir crazy and I understand that. I wish I could force myself to not be so tired, be able to keep my eyes open… Sometimes I do think this can be one of the worst things about a Crohn's flare, especially when you're a stay at home mom, in the summer, with two small kids. Because fatigue like this makes you unable to do anything. It takes all my energy just to do the little things, never mind everything else. This fatigue feels like I haven't slept in DAYS when, in reality, I've been getting a good amount of sleep. Even my husband, who is usually really good about understanding my illness says: "just go to bed earlier tonight"

Ohhhh….if it were only that easy! Yes, I do have to get work done before bed and yes, sometimes that can keep my up later than I want but still, even with that, I am averaging 8-9 hours of sleep a night before a small person wakes me up in the morning. When fatigue like this hits…. my need for sleep is unsatisfied no matter how much I get. I am sure I'll sleep a lot this weekend and I won't feel any better than I do right now. That's the problem when fatigue hits. No matter how much sleep you get…it doesn't change how you feel when you're awake. This is what the Mayo Clinic has to say about fatigue and it sounds about right for me:
Chronic fatigue is a nearly constant state of weariness that develops over time and diminishes your energy and mental capacity. Fatigue at this level impacts your emotional and psychological well-being, too.
Fatigue isn't the same thing as sleepiness, although it's often accompanied by a desire to sleep — and a lack of motivation to do anything else.
Tomorrow I am rallying and we'll be making a day trip to the lake with some friends. I know I'll be pretty much down for the count by the time we get home and I can only hope the kids will be as well. Hopefully I don't get too tired driving as that has been an issue when I've had these flares and this particular symptom in the past.

I just keep hoping I'll wake up tomorrow and this flare will have passed. It has to at some point, right?

Monday, August 4, 2014

Bleeding

You know what's disconcerting? Feeling like you have to have a bowel movement and only seeing blood…oh and even more disconcerting when that happens when you have no colon!

As I have stated before, I still have my rectum - how much of it I honestly don't know but it's just kind of sewn up and goes nowhere. I decided to keep it in case I want to connect my small intestine up to it and get rid of the ostomy bag. My doctors saw no problem with this as I have not previously ever had any Crohns issues there.

Yesterday I found myself back in the ER due to the bleeding and pain in my abdomen. I got another CT (which showed some areas flaring in my small intestine) but obviously the CT can't show anything in my rectum as nothing I ingest goes down there. I got bloodwork and a quick rectal exam which showed some inflammation. The doctor was not comfortable scoping as he had no idea how much rectum I have left. But I was told I need to get that done. If the Crohns is active there then… it's most likely coming out and then I am stuck with my bag for life.

All the while this is going on, I keep getting a pressure feeling down there, like I have to pass a bowel movement but, obviously, nothing would be coming out. All I keep getting is blood. Still tonight… blood. I hate the blood and the pain and no real solid answers.

I do have some other issues going on that are not helping. I have new cysts on my ovaries which could be causing part of this abdominal pain. The CT showed cysts on the right and Crohns stuff going on on the left which explains the pain on both sides of my abdomen. I really can't tell the difference, both pains feel the same to me.

I also have had a headache for 4 days now. Got that checked today and found that it's possible I have a sinus infection. I am not having any stuffiness so I didn't think I did but my doctor told me the Humira could be preventing that symptom so… he is treating me as though I have a sinus infection and if I am not doing better by Thursday then he will CT my head to see what's going on. I am hoping for a sinus infection. I tend to get those so that's probably all it is. Would love this headache to go away!

A for the Crohns stuff… I am seeing my local GI on Wednesday as he wants to see me before I go off to see a new GI at GW Hospital in DC. Someone, somewhere has to help me. The Humira doesn't seem to be doing it's thing. I am so tired of daily pain… of new issues cropping up. If I have to be stuck with the bag for the rest of my life then so be it. I just want to be out of pain so I'll do whatever I have to do to achieve that. If it's even possible to do so.

Monday, July 28, 2014

Pain

This flare has been a little rough and a little reminiscent of my time before all the hospital stays and whatnot. I actually took my last pain pill yesterday because I couldn't handle it. I am now officially out and have no desire to go back to the hospital to get more. I mean really, I was treated so well my last visit to the local hospital… why wouldn't I want to return? (yeah, that's sarcasm)

I called my local GI to try to get an appointment. I know I have a flare and I know the Humira is not working like it should. His response was well, kind of appalling: "Your Crohns is really more severe than I am comfortable treating so I think you need to find a new doctor"

And until then I am supposed to do what exactly???

I'm sorry you're a GI doctor specializing in CROHNS AND UC. Perhaps…just perhaps you should rethink your medical title here? If you're perfectly happy treating me when I am doing okay and not having bad Crohns issues then you are not a Crohns/UC specialist you're a general GI.

You know… just so we're clear here.

I went most of my life avoiding hospitals and stays like what happened to me this past year. I was lucky. I never really understood the people I heard about who complained of doctors not believing them - not believing their pain…

I do now.

I know if I go back to the local hospital I will be treated like last time. I'll be treated like a drug addict (yeah I haven't had a dilaudid since early May thank you very much and the pill I took last night was just a glorified Tylenol) and like I am faking, over exaggerating or just plain not knowing how to manage my disease. You know what? I've had this disease basically my whole life. I've been LUCKY for most of that time. But… now that shit has been hitting the fan I suddenly don't know how to manage it/can't get a doctor to want to keep treating me?

There's Hopkins however, I am not going to Hopkins again for a few reasons.

  1. They're not as great as everyone thinks patient quality wise. I am sure they're still awesome with research but not worth driving over an hour for appointments.
  2. I'm sorry - you released me from my last surgery with a KNOWN staph infection. Yeah… you rock guys.
  3. While I did really like my surgeon and she basically did a good job - she does not want to even consider other options for a "reversal" of sorts. Her way or no way. My body so I say, no thanks.
  4. While this is not a major issue - the food there sucks. I mean, inedible. INOVA Loudoun has food that's about a million times better. Shame they don't have a colorectal surgical department.
I've heard some good things about the doctors over at Reston Medical Center. They have a colorectal department and they're not too far from where I currently live. Still not ideal as it's not close enough for me to go to appointments when my oldest is in school. And… I can't always get babysitting and don't want to haul two kids to all  my doctor visits. But… they're closer than Baltimore or DC so… gonna check them out I think.

Until then, I hope this flare passes. I am so tried all the time again. That's harder for me to deal with than the pain. The pain well, it's been a constant my whole life so nothing new really but fatigue… that is hard. I have two littles who depend on me, who need me present. Need me to be energetic, need me to play with them.

And when the fatigue is this bad, even coffee doesn't help. And the vicious circle begins because the pain makes it hard to sleep, no sleep equals even worse fatigue.

When will it end?

I heard they're transplanting colons in the UK. Maybe I should look into that. lol


Monday, July 21, 2014

One day at a time

Flare is subsiding a bit which is terrific. I've been eating a lot of vegetables again and that can be hard - fibrous foods are hard to digest but I just can't imagine not eating them.

I had a very high veg/high fiber dinner last night and I think that contributed to what happened this morning. I woke up to a leak - another big one. I am really confused about why this keeps happening but I suspect it's because my stoma is basically at skin level so, the output can get under the flange and then - leak. I think I need a different kind of flange that will help prevent this from happening. Will look into that next month when insurance will let me order more supplies.

I am thankful though, that my leaks seem to be happening at night, not in public. Silver lining I guess?

I am also thankful and just so happy that I have such an amazing, supportive, wonderful husband. This was the first time he's really seen a leak up close. He didn't act grossed out by it, he just helped me while I got cleaned up. I know the leaks gross me out a bit so… I can only imagine what was going through his head.

I also decided, for the first time since I received my stoma in January, to shower without the bag on. It felt so good to let that skin under the flange get cleaned and air off and just breathe. I thought I'd be grossed out by it since I have no control what comes out of the stoma or when but…. with the shower I didn't even notice it really. It wasn't as bad as I imagined it would be if you can understand that.

Baby steps… every day I feel like I am taking baby steps to this new normal for me. There's so much to handle, to take it, to deal with. And I'm now having second thoughts about even getting a reversal at all. Not because I suddenly am okay with the bag, because I am not, but because… without a colon things would not be pleasant. Your colon is what makes your stool formed and I will never have that again. While a j-pouch would allow me to not constantly be running to the bathroom - I would always have the same output I have now. Watery to a thick like peanut butter type of consistency. I remember how it felt when I would have flares with days of diarrhea - it would wind up hurting to wipe. I don't think I want to live like that.

Yes, the bag is a huge adjustment and I really do not like it but… I no longer have to run to find a bathroom. I no longer spend half a day on the toilet when I have a flare. And you know… that's kind of nice.

My original thinking had been that I could try the reversal and if I didn't like it then go back to the stoma. It appears, however, that even if insurance would pay for my reversal (and they don't all because it's not medically necessary) they most likely would not pay to have the reversal reversed.

I have time to think, to consider all my options and honestly the longer I live with the bag, the more normal it's becoming. It's not as bad as I thought it was in the beginning.

One day at a time. That's the only way to tackle all this and I am sure I'll go back and forth on what I want to do but… one day at a time. That's all anyone can do, right?

Monday, July 14, 2014

Feeling Robbed.

Yes, I kind of feel robbed right now. I had two surgeries this year - first on January 17th and second on April 21st. I feel like the surgeries should have helped more. Surgery one didn't help for the sole reason that 1/2 my badly damaged colon was still in my body causing pain. Surgery two should have helped more had the hospital not discharged me with infections which led to another week in the hospital and many weeks of home health care, infections and post surgical pain.

I feel robbed of that time, that time I should have felt well and free of Crohns pain because…. it's back.

It started a week ago last Sunday. I felt mostly okay, got to church and suddenly, without warning, felt like a knife was being ripped into my gut. I rationalized… must have been that corn I ate. Doctors said that without my colon it would be okay and clearly they were wrong. Yep, corn did it and it will pass.

Nope, not the corn.

A few days passed and I stuck to a very low fiber, even liquid diet at times. Tried to get my system calmed down. Then the joint pain started. I have peripheral arthritis caused by the Crohns. My joints started to hurt and swell… not just some joints… ALL of them.

I have spent all week back to life before my surgeries. Back to the life I thought the surgery would help fix, even if just for a few years (and yes, I thoughts years). It's calmed down some back to manageable pain but this is not what I wanted. Even worse, the drugs are not working and there is nothing new for me to try unless I maybe find some clinical trial to get in on (and yes, I am looking).

My kids are FINALLY doing well again. All my many months in the hospital and not home took a toll on them both (my son more than my daughter who is really too young to get it) but I refuse, REFUSE, to send him back into whatever funk he's finally come out of. I'll have to be in more pain than ever to go back to the hospital again. I am not leaving my family for this.

Let's be honest here. I was in bad shape from October to, at least, my first surgery. Crohns can be fatal - I see it in the news every so often. My surgeon outright told me if I had not removed my colon - the way I was headed with even TPN not helping me keep weight on - I may not be here writing this blog right now. That is a very real possibility that I don't think many people realize. I wasn't able to think about it when I was going through it but I think now and it sometimes hit me… I was not in good shape. I was in severe daily pain, lethargic, losing weight pretty much daily, my iron levels were something like a 2? I remember the doctors being extremely concerned about that one. I could barely make it through the days and would count the minutes until my friend's daughter got out of school and would come to the house and help me. I couldn't make it through the day.

Then the surgeries. And after the complications and whatnot I started feeling well…. really well for the first time in well, YEARS. I started acting goofy again, laughing and playing with my kids again. Happy again. I felt normal.

And now, this… this scares the shit out of me but I can't let it show. I can't have days where I sleep all day, where I say "No, mommy can't play right now, mommy hurts and needs to rest." That is not an option. So instead I take Tylenol by the truckload and push on - put on the happy face (don't let them in, don't let them see as Elsa would say). Want to go to Hershey Park - great, terrific, let's go! I paid for that one the next day but my son has some terrific memories of that (as do I) and I don't regret that day at all regardless of what it meant for me. That's what I want for him and my daughter. Memories of mommy doing things with them, having fun. Not of mommy in a hospital bed.

I have no idea what this flare means (where is the Crohns taking up residence now?) I have no idea how much longer it will last. How much can a body take of this? I hope mine can take a LOT more. I can only hope that this flare is some sort of fluke and it will go away. I am going to try to hide as much as I can like I did before the hospital stays and the surgeries. I do NOT want to get back to a place where I have to rely on others so I will do whatever it takes to not ask for help. I am going with the mentality that this WILL pass, things WILL be okay. Because, that's it, that's all there is, it HAS to be okay. I HAVE to be okay. I can not do this again so soon. I knew the Crohns would act up again - the surgery was not a cure and I know that but really…. I thought I would have some good YEARS here. YEARS. Not a few weeks or months, YEARS. Do you hear me universe? This is not cool - this is not okay. I've got a family who needs me to not be sick so… yeah.

I am going to go with a positive outlook and just think that this will pass any time now. How I felt even like, a week and a half ago… yeah, that's coming back. And when it does - look out world :)

Thursday, July 3, 2014

Viral can be AMAZING

An amazing thing happened this week. A model, a Crohn's Disease sufferer with an ostomy bag…. posted a selfie, bag and all, for the world to see. It didn't take long for the photo to go viral.

Can I just say I LOVE LOVE LOVE this. I love that it went viral. I've only had mine since January - I'm a baby in the world of ostomy bags and joining the ranks of the colon-less. I am still learning to deal with it, be okay with it… be okay in my new skin.

Things like this help. Makes me less embarrassed by it, less ashamed of it.

A while back I posted a photo of my stoma (while it was still healing) and my ostomy bag because I knew people were curious. It was not an easy thing for me to do but… in the online world it's easier. You don't really have to deal with looks or questions in the same way than if you let it all out in real life.

I love what this has generated. I love the media attention to a disease that is really only starting to be more talked about, more known about. Sometimes I still have to stop and really let it hit me. I had TWO major surgeries this year and have NO COLON. Holy Moly… that's HUGE. I didn't get how serious all this was, not really, while I was going through it. All I could think about while I was going through everything was the pain, the hospital, how my family was dealing. I didn't really let myself REALLY think about what was happening to ME. It all seemed to happen fast. After YEARS of dealing with this disease, YEARS of pain… all of the sudden everything was about to be very different for me. I had to get that surgery I thought I'd never ever have to get.

My journey is still not over… I still have AT LEAST one surgery to go. Hell, my journey will NEVER be over aside from some sort of divine intervention that makes this disease leave me body. I will ALWAYS have Crohn's Disease. A common misconception I have gotten since these surgeries is that I am cured. Nope. Would be nice but nope.

All I can do is add my story to the others that seem to be popping up like wildfire online. I'll also add a new selfie - since my bikini covers it up, you'll have to settle for my mismatched underwear :)

Here I am - the new version of me. I have scars everywhere and they are ALL from this disease. Stretch marks from all the many ups and downs of prednisone. My stomach scars from two surgeries and a complication - like my second belly button as I refer to it? That one on the top is where I had to get stitches popped with the complication from surgery number two. Got to pack that wound (and one much lower) for weeks and weeks after I should have been healed. I did not enjoy that - it hurt and got infected more than once. But now… it's all just part of my story and I suppose with everything else, all the other selfies and awareness blogs about my disease I shouldn't be shy about it - I should just own it.


Thursday, June 19, 2014

another leak today… however...

So today started out not the best. I woke up and all seemed OK but I didn't really look at my ostomy bag or flange. The kids were sleeping in a bit so I got back in bed and did some work on the computer before they woke up. About an hour later I got up to find… another leak - a rather big one.

For the first time with a leak (and I've had many) I didn't cry. I was aggravated but I didn't cry. I just got up, dealt with it and moved on with my day.

I also used these for the first time today:



Coloplast brand barrier strips. As you can see, the strip goes over the edges of the flange. They seem very heavy duty and are sticking REALLY well. I think this is going to change my whole outlook and life with a stoma. I am glad the person at the medical supply place suggested I try them (I believe she said people swear by them). I'll feel more confident about no leaks, swimming, etc.

I was a bit sad about random things today so I took the kids out for fun at the park for a bit and when I got back home I decided to purge. I cleaned a massive part of the main floor of our house. Since October, after every hospital stay, every home health nurse visit… all those medical supplies and whatnot landed in the dining room and never left. While I don't go in the dining room often, I could see the mound of crapola every day. It was extremely therapeutic to throw all that stuff away. All the picc line supplies, tpn supplies, gauze, medical tape, tubes, etc. It's all gone. I think that unconsciously I was seeing all that stuff and it was bringing me down. Reminding me of all the crap I've been through. All the hospital stays, constant pain, surgeries, missing my family, etc. I think now that it's gone I can really move forward.

I don't know what will happen next. I don't know if I'll ever get to ditch the stoma but whatever comes I know I can handle it because I've handled it all so far. I may have not handled it great all the time but I made it through. My 9 month pity party is coming to an end - time to move on and be happy :)

A little about Crohn's, a little off topic.

I'll start with the Crohns stuff. Some potentially good news. My home health nurse thinks that my current abdominal pain may not be Crohns related after all - but a side effect of the antibiotic I am on, Levaquin. I took my last dose tonight so all my fingers and toes are crossed that once this drug is out of my system I may become pain free. Surgery pain is completely gone and my two little holes are basically all closed up. Now… if this abdominal pain goes away then - I'll be completely pain free for the first time in a very long time.

So… I am thinking positive and hoping for the best.

So now some non Crohns stuff.

I've been a stay at home mom now for about 5 years. Actually 5 years next week as I started staying home when school ended in June of 2009. A few months before my son was born. I do love being a stay at home mom. I love that I am the one raising my children however… no one tells you how isolating it can be. How lonely it can be sometimes. Sure you make friends with the moms of the kids your kid plays with. Some of those friendships may turn into those great lifelong types of friendships but realistically many don't. While you may enjoy hanging out with these people, it's not what you thought it would be.

The ONLY part about working full time that I miss is being around other people all day. There are times when I can go days seeing no one but my kids and my husband when he gets home from work. It's the main reason why I spent so much time on Facebook - it's that adult interaction but even that's not the same.

We've moved since our son was born. A very good friend I made when he was a baby doesn't live all that close to me and it's hard for us to find the time to get together between what we have going on, what the kids have going on, etc. A good friend I made before kids lives a little over an hour away from me and she now has kids as well. She also works full time so that makes getting together with her even more difficult. When I first moved to the town we currently live in, I clicked right away with my neighbor. We are very close but she's an ocean (and time difference) away right now so that's hard too. I can not wait until she comes back but it will be a couple years. She'll be here this summer for a bit and I can't wait. I am also hoping we will get to go to Paris to visit her next year which will be awesome. I have another very close friend here in town but, as lots of friendships go through things, its a little weird right now. I'm sure it'll all be fine, all relationships go through highs and lows but the lows really suck when you seem to be smack dab in the middle of them. Even if it's not a LOW low…. know what I mean? Probably not… do I even know what I mean? Ugh.

I have a lot of friends here in town but not a lot of close ones. There are definitely relationships I would like to make better but it always seems to be a time thing. Schedules are busy or don't align. I really should be better at trying to make things stronger but I can be shockingly, quite shy. The people I have really clicked with are few but once I click with a few people I tend to kind of stop and be content with that. I feel like making friends as an adult is a million times harder than as a kid. And growing up it wasn't terrific for me either. I was teased relentlessly for a long time and then just was shy and kept to myself more than anything. I've tended to clam up a lot as an adult because it became second nature for me. While I find it very easy to spill my guts and open up totally online (overshare as people have told me I do)… I do that with VERY FEW people in real life. If I have talked to you in depth about a lot of things - you are one of a small handful of people. Small. Tiny. Miniscule. I'll touch upon things with people but really getting into it - those talks that you need to have to get stuff off your chest - yeah I don't do that much. I write it more than I talk it.

Don't know where I was going with this… just stuff on my mind I guess. But as it's now 1am… I should probably try to sleep. Yeah… trouble sleeping is another side effect of Levaquin. I tend not to read the side effect sheets because then I convince myself I have those things. So… the one time I get two side effects from the drug and I didn't even think about it as a possibility. Will be so glad when it's out of my system!

Saturday, June 14, 2014

Testing update

Yesterday I had my test. It was not pleasant but I survived.

NO FISTULA.

Everything looks good and there appears to be no fistula between my small intestine and my bladder which is good news.

However, the pain then is most likely caused by the Crohns acting up in my small intestine. Not much to do but sit and wait and see.

I was mad yesterday. Not mad about the test outcome per say but more about the fact that I left the appointment with zero definitive answers. Like most of my life with this disease really. At least when there is an answer, there is something to be fixed. You know?

And, if my Crohns is acting up in my small intestine and that keeps up well… I'll never get the stoma reversed. Which was very upsetting and disappointing news. That was something that bothered me a great deal.

I almost threw and broke a mug but went and got a spontaneous tattoo instead. Yep… that helped.

Today I woke up feeling good. NO pain. I have some now but nothing bad. Not like it's been the past week. So I guess we're back to when the pain comes and goes. Which makes my daily life interesting. But… easier as long as it's not everyday constant bad pain. If we can keep it to manageable pain like before then I'll be OK I guess.

I am trying to have faith that I am going through this for a reason. It's hard but I am really gonna work on that because maybe it'll improve my outlook. I am tired of being negative so much so I have to just let myself have a mad day (like yesterday) and then just move on and be positive.

Wish me luck :)

Thursday, June 12, 2014

Got to visit the hospital again today

Yesterday afternoon, after a night of insomnia again, I took a nap when my daughter did and woke up in horrible pain. Abdominal pain and nausea like I'd been having before surgery. After a while I developed some chest pain and a headache as well - probably due to a rise in BP.

Although my husband and friend suggested I go in and be seen I was, as my friend put it, being stubborn. I didn't want to go in AGAIN. I didn't want to be told there was nothing they could see (ER docs are not great with Crohns issues) and just sent home. I decided to try to sleep and see how I felt in the morning.

I woke up in pretty much the same pain. Minus the chest pain and headache.

So… we dropped the kids off with my friend and went to the ER. Where, I was treated like a faker.

First it took a good 30 minutes for them to bring me back despite the fact that there was no one else in the waiting room and the rooms were empty when I was taken back. Then I didn't even get assigned a doctor… just a PA.

The nurse came in to do my IV and I got a lecture about how I should really learn how to read my body and figure out when I really need to come in and when I should just grin and bear it.

I was asked by her and the PA what the problem was and was look at as if I was just there for meds.

They gave me pain meds, nausea meds, took blood and urine.

Hubs had to go pick up the kids.

While he was gone, the nurse came back, told me I didn't have a bladder infection so they were sending me home and "make sure you go to that test tomorrow"

I told her my husband went to get our kids and would be right back.

10 minutes later I was told I needed to vacate the room because they needed it for people who were sick.

YEP. Ok then. Because you know, I am big fat faker just here for dilaudid. Oh and on my walk back out the lobby… there was ONE person in the waiting room and still empty rooms back in the ER so… need the room my ass.

And that is why I didn't want to go in in the first place. It's not the first time, and won't be the last time, I wasn't believed.

And for anyone out there who may be an ER nurse….

This is not OK. I handle my pain well so it's not always clear that I am in as much pain as you think I am but if I can't stand up straight and am actually IN your ER then you can be sure I am in pain. I don't like coming there, I don't like being poked and prodded, I don't like being away from my kids… I am not there for a good time, I am there because I can't take the pain at this moment.

My test tomorrow will tell me if I have a fistula which, sadly, seems more likely since it's now been confirmed that I do not have a bladder infection. But… if it's not a fistula then, what the heck is causing this pain?! 

Have I mentioned how much I hate this disease?

Tuesday, June 10, 2014

More tests

Well… Went to my GI today and he scheduled more tests for me. wahoo.

On Friday I get to go have some horrifying sounding test where they will insert liquid and dye and I think he said some air as well, into my bladder while I am under a CT type machine and look to see if  the dye comes out anywhere. If it does… I have a fistula and I'll get the pleasure of yet another surgery.

The doctor explained this test to me and I am sure I looked completely horrified. My first question was:
"Is this going to hurt?"

His answer means hell yeah it will:
"Wellll, I'm not gonna lie to you, it's not gonna feel great."

Super super awesome fantastic, bring it on I guess.

Oh and I can apparently drive myself to and from this appointment which means that my super fun gonna hurt test is not going to involve any type of pain drugs. Yipee.

Now, I did have a urinalysis last week and there was bacteria there so there are a few possible outcomes from this test on Friday:

  1. I have a fistula from some part of my small intestine to my bladder.
  2. I have something that went wrong from surgery in April (perhaps a small part of bowel somehow didn't come out and then attached itself to my bladder or my bladder was nicked during surgery)
  3. or, I have a bladder infection.
Doctor thinks #1 is the most likely scenario because I've been having problems with fistulas since October at least. The downside to this is if I have a fistula it mans my Crohns has now decided to take up residence and be active in my small intestine which is bad. This will mean that the Humira is NOT working. We do no want this to be the issue. This will mean the surgery didn't really do what we were hoping which would be to put me into some sort of remission.

#2 is not as likely because my surgery was April 21 so… if it was a surgical complication I should have seen something before now. However, the human body can do weird things so this is a possibility. Not what I want either because this will also take surgery to fix.

#3 would be terrific. I'll take a bladder infection over anything else because that's just antibiotics. 

I am feeling very upset over this. For many reasons. One, I feel like this whole ordeal is a never ending nightmare. I want to be done for a while. seriously. Two, I don't want to leave my family and be holed up in a hospital AGAIN. No. And three… another surgery this year means that our family vacation in November, the one we all really need and I am very much looking forward to - probably won't happen. If we have more hospital bills then we can't afford Disney as well. And while I protest to my husband that we already paid the non-refundable deposit… yeah, I just don't know what will happen.

I am just so frustrated, upset, angry…. why can't this just be done? Over with? Will I ever feel better again, ever? enough is enough. My very wise friend told me "this will end" - and I know she's right but for the love of you know who… ENOUGH ALREADY. I yield, I call uncle… what? what do I need to do here. I just wish things were different. I wish I were healthy. I wish a lot of things right now.

I kinda wish I didn't have to go alone on Friday because I am more than a little nervous about this test.

Sunday, June 8, 2014

Will it ever end?

So things were looking up. Surgical wounds are FINALLY closing and not infected. I don't even need to pack them anymore. I was feeling good - no Crohns flares. Aside from a little insomnia bout, I had a good week!

And then… a few days ago I started having pain again. It was slight, barely a blip in my pain radar… a 1 or 2 for me (probably higher for others but my pain scale is way skewed) - bout nothing that gave me any cause for concern.

I ignored it as I often do. As I have learned over the past 26 years to do. It's second nature for me to ignore Crohns pain - especially when it's not that bad.

Then I started noticed something and I am fairly certain I have a fistula. How is that treated? I honestly do not know because I've only ever been hospitalized because of them. I started noticing something this morning when I went to the bathroom. At first I thought it was old blood - weird because I had my period last week. I ignored it and just figured that's all it was.

The pain throughout the day slowly got worse.

Now I am having more discharge and upon closer inspection - it's not blood. ew ew ew ew. Aside from this probable fistula this will SURELY cause a yeast infection. FABULOUS.

This has never happened to me like this before. My fistulas have always been internal from one part of my colon to another. Never small intestine to bladder or somewhere down there…

And… if I am having pain it only means one thing… Crohns is acting up in my small intestine now. I'd say pain wise right now, I am at a 5 or a 6 for me… not good. Not good at all.

I am gonna go cry. For real. ENOUGH. I've had it. I can not handle this. I am not doing this - I am DONE with doctors, hospitals, ER visits, IVs, asking friends and family to help with my kids who are so messed up already from all of this shit. I don't want to be sick. I don't want this disease, I am so so done. I really believed that the surgery would help keep me healthy. I honestly thought that all the prayer would help. I really really thought I was in for a good run here. W T F.

Tuesday, June 3, 2014

Yes, my kids ARE worth it!

I've heard it more than once from doctors and even friends and family. But yes, having my kids and taking the risk that my disease would flare up bad was worth it and I'd do it again in a second.

IN. A. SECOND.

My doctors from the get-go didn't want me having kids. Your disease is severe they said. It could get worse they said. I was advised against having children.

I ignored that. Right or wrong - I made the choice to start a family with my husband. No, my husband and I made the choice together knowing the risks.

I was lucky with my son. I found out I was pregnant about a week after New Years Eve in 2009. I went into remission with that pregnancy and stayed that way until he was about 6 -9 months old. That was a wonderful time. The only time since I was 10 that I had consistent pain free, no symptom days. And I had none. NOT ONE.

I was warned that while it was possible that would happen with a second pregnancy, it wasn't likely. But… I wasn't done. I still had my heart set on at least two children and I really REALLY wanted a daughter.

My husband and I decided to roll that dice. We had trouble getting pregnant the second time. My GI doctor told me to take that as a sign and just not have any more. Instead… we sought out fertility treatments.

I knew I was pregnant before a test told me I was because my disease flared worse than it ever had ever in my life. I lost 30 pounds during my pregnancy with my daughter. I was sick the entire time. I've lost about another 40 since she's been in the world. I am the skinniest I have ever been in my life.

She'll be two in a couple weeks and I am still recovering from that flare. If you know me then you know how it went since she's been in the world. More time in the hospital than home, two surgeries and no more colon.

But hear this, and please don't judge me:

I would do it all over again even if I knew all this would happen. I would do it again because my kids are my world. I love them and can't even fathom life without them in it. I don't regret having them. I hate how this disease has been so active and led to the stoma and the ostomy bag and being dependent on the help of others but I do NOT regret my decision to have them.

I KNOW I will get better and things will get easier. I already do feel better than I did. My life will never be the same and that's OK. I am glad I didn't listen to my GI doctors - even if you think it was a stupid, selfish decision.

I do want another child someday but if we do decide to have another one (my health permitting) - that child will not be biological. I got a tubal ligation when my daughter was born. While I don't regret for one second that I had her - there is no way I can go through another pregnancy. I am sad about that sometimes. I'll never get to feel a baby kick inside me or get that cute baby bump but I feel incredibly lucky that I got to do that twice - it was pretty cool.

No matter what I went through, I now get to raise these two bundles of awesome, and that really does make all of this OK:

Wednesday, May 28, 2014

You may have noticed...

That I changed the name of this blog. It started out as a place to vent and is turning into more about my life with Crohn's Disease so, here it is - Life with Crohn's Disease!

Good Days

Well, things are getting better. I have good days and bad days but the good seem to be outweighing the bad. Surgical scars are finally starting to close up, pain is starting to ease up and I am getting use to life with a stoma.

My stoma has changed since I posted a photo of it for everyone to see. The stitches have finally dissolved and are gone and it has returned to being an "outie" - now that it's healed I may take another photo at some point. I haven't had any more leaks with the ostomy bags which has been terrific. I am still self conscious about it but not as much as I was in the beginning.

Here is a photo of me with the bag on. Obviously it's usually tucked into my clothes :)
And please ignore the fact that I am clearly not wearing a bra… lol


As you can see, I still have to pack, cover and tape my holes from the complications with my surgery (you can't see the lower one in this photo). I still can't believe how skinny I am these days. I have stayed at a size 6 since January. I have never been a size 6 ever. My lowest in college was an 8. It also seems that no matter what I eat, I don't gain anything. My doctors are concerned about what I am not absorbing into my body these days. The iron pills I have been taking haven't done anything so it looks like I'll have to start infusions soon. I would like to stop being so tired all the time. That's my biggest complaint these days - fatigue. It seems I can't get through the day without a nap which is near impossible when you're a stay at home mom. I will also have to start injections of some other vitamins as my levels on everything are pretty poor. Malnutrition can be a huge problem in people with Crohn's Disease so that's something I'll have to keep an eye on.

I am getting better and I am very thankful for that. Still hopeful that someday I can rid myself of the ostomy bag (the current thought is February or March) and that is my little light at the end of this road for me. However, I am realizing that if it can't happen it wouldn't be as life shattering and awful as I thought in the beginning. Really no one knows I have it and not having the Crohn's pains like I had before - well, that's worth it. I still don't like having it and do really want to be "normal" again but if that doesn't happen, I'll live :)

And, I've been talking to more and more people about my disease. Spreading not only awareness but support - that's been a good thing I think.

Tuesday, May 20, 2014

Better day

Today was good. Really good in fact. For the first time in a LONG time, I felt like me again.

I had very little pain (although I did take pain meds but not the dilaudid - I took tramadol during the day and  it helped a lot), I wasn't tired at all and actually got things done around the house. The kids were super well behaved and I even had the energy to take them to the park - twice.

My home nurse came and treated my wounds. She actually thinks I should be able to stay out of the hospital. Provided things don't get worse. No fever and no redness around the infected area is a good thing and as long as it stays that way I am OK to stay home. We do need to stop the discharge from the wounds from being green but as long as the wounds stay open and continue to drain I should continue to heal. This was great news because I really do not want to go back to the hospital. I don't want to leave my family again.

I am trying to focus on the positives instead of the negatives. The low fiber diet stinks but it's not forever and I will be able to slowly introduce things back into my diet in another week. I'll never, ever be able to eat some things again but, really, it's no different than my life has been since I was a kid - the restricted foods may have changed but the reality is the same. I can try to do some things to eat some of those foods (like blanch and peel the skins off the tomatoes for example) so I really just need to focus on what I CAN do and not what I CAN'T do.

I want this to continue. I want to feel good and be in good spirits. Last week was horrible, a low for me. I know I am not better but having a good day like this was exactly what I needed. I don't want to be the kind of person I've been lately. I don't want to be sad, complain, be in a shitty mood and constantly have to rely on others. I've asked too much and I want life to get back to what it was - back before October when all this crap started. I may have a few more bad days (although I hope not) but today was encouraging.

I think I may have pushed some people away with everything that's been going on. I really hope not, I hope I am just worrying for no reason. I've asked a lot of people, dumped a lot of people and been a mess emotionally which I am sure has been hard to take. It's been hard for me as well. Who wants to be that way? I don't… honestly I don't. It can be so easy to get caught up in the bad stuff that's been going on and I've been dealing with a lot. It is so easy to get sucked into a bad feeling, a bad mood and just go into a hole. I did that last week. That is not something I want a repeat of.


Friday, May 16, 2014

Very hard week

I've had a very hard week. It's been bad physically and emotionally. I had three leaks with the ostomy equipment, been in pain because my wound is starting to get infected again and come to a food realization that I wasn't totally ready to hear.

My emotional state this week has been bad. I've been feeling more down than I have in a long time. I've been saying for a while now that I wasn't sure how much longer I could keep things together. I am trying but it's hard. Everything I've been through since October, it's just too much. The leaks have not helped my mood at all and on Thursday I spent the majority of the day crying. I am really not OK with all of this. Rationally I know things will get better and this surgery probably helped more than I think and I will learn to deal with life with an ostomy but I am just not OK with it all this week. Today was a little better than yesterday and hopefully tomorrow will be even better than today but realistically it all depends on what happens. If my ostomy stuff leaks again tonight and I wake up tomorrow to a mess then I am not going to do well. There is only so much I can take - only so much any person can take - until you hit your breaking point. I feel like crying right now just thinking about it all.

I spent some time with Kacey this morning and that was good. I didn't say much but just sitting with a friend, not at my house, helped. Weird how that works. I also got some good laughs in when her puppy was playing with my daughter. Laughing is something I hadn't done really any of all week so that was good.

I also went to home group tonight. Kacey and her husband Todd host it. This is something I am getting used to. Church in and of itself is still something I am getting used to, something that still isn't 100% in my comfort zone so this is still outside my comfort zone. I've gone twice now and I wouldn't go if I didn't want to but I am very quiet during most of it - taking everything in and trying to figure out what I think of it all. I haven't been too good about reading the bible or any of the devotionals Kacey has given me lately. I need to get back into that for sure - no, I don't need to, I want to. I've had a hard time caring about much of anything right now. She gave me a gift today, my own bible (it's very pretty and pink! Does she know me or what?) and it even has my name on it which is really nice. It was so incredibly thoughtful of her and it makes me feel guilty that I haven't been good on my reading. And feeling even more bad that I haven't talked to her about my struggle right now because I confide almost everything to her. Aside from my husband, she's my person (if you watch Grey's Anatomy you know that's where I got that term from). But… I am 99% sure she reads this so… now you know my friend. I need some help getting back on track because right now, as you know, I am not doing well. I very much want to believe that there is a reason for everything and a plan for everything but I am having a hard time believing that at the moment.

I think just this week has been bad, I've gone to a dark place and am questioning everything. And my struggle isn't even that bad on the grand scheme of things which makes me feel guilty for making a mountain out of a molehill so to speak. People are dealing with far worse things than I am so I should just be happy that I am alive, have a wonderful husband, kids family and friends. Stop bitching and get over it already. I do NOT want to be a drama queen and I am soooooo being one right now. UGH. That really makes me annoyed with myself. Gotta stop with the pity party. I really hope things improve over the next few days, weeks, whatever. I want to feel like myself again. I want to be back to the happy, silly, goofy me. Not sad, depressed, want to sleep all the time me.

I am really gonna try to work on that this week.

Wednesday, May 14, 2014

Staples were removed today

I had my staples removed today and let me tell you - it hurt getting them out. It hurt BAD. At one point the nurse went to see if she could get me some pain meds because I was crying. Those that know me know I am NOT a pain wimp. I am far from it. So… you can only imagine how bad this was. The staples had been in for a little over three weeks and the way my stomach was healing it was almost enveloping the staples. So they literally had to be DUG out in places. Never again. Next surgery I am telling then NO staples. Sew me up instead please.

Because I had staples removed in two sections early, I still have two open sections of my wound so I still have to pack my wound once a day and be careful still about lifting. I have however, been given the OK to drive again. Not being a nurse or a medical professional of any kind, I find packing the wound daunting and kind of gross. It can hurt a bit but I have to do it for 2-4 more weeks! UGH. For those who don't know, packing the wound means I have to take a very long q-tip and stuff gauze into the open sections of my wound. When I change it I pull out the gauze (which looks nasty let me tell you - kind of mucousy) and repack. This pulls out all the gross stuff and letting my insides close up without getting infected. If I don't do this I could get an infection and fluid buildup and all sorts of new issues that sound painful so… the packing I will do.

Anyway

I will say overall I am feeling a bit less pain because the staples are out but because of how they came out, today has been rough pain wise. Luckily my hubs was home today so I didn't have to do much. I did lift the little one a bit today though so my wound leaked a bit more than normal. I know I am not supposed to but if you have little ones you know it is near impossible not to lift them at all ever in a day. I just try to do it carefully and not use my abdominal muscles. Careful lifting :)

I will be happy when all this is behind me, at least until next year.

Here is MY stoma (photo included - not for the squeamish)

In my last post I explained what a stoma is and told you I would share mine. Mine is still healing from surgery and you can still see the stitches around the edge. It's also a bit raw around the edges right now - as it's still healing.

But right now… here is what it looks like. This is probably not for the squeamish. Overall I have been told it looks good and healthy. I still think it;s gross but I am getting used to it. Still.. I'll be happier when it's back inside my body where intestines belong.


Monday, May 12, 2014

So… what IS a stoma anyway?

Someone asked so… again… I'll create a post which you can read or not depending on your curiosity level.

Ok! So let's get to the 'nitty gritty' of what everything is! First an ileostomy is formed when the whole  colon is taken away and a 'stoma' is formed from the end of the 'ileum'  which is the end of the small intestine. A colostomy is formed when only part of the large colon (large intestine) is taken away and the 'stoma' can be formed from the end of the remaining colon. A stoma is the part of intestine that is taken out of your body through a small incision on your stomach, typically on the left hand side for a colostomy and the right hand side for an ileostomy.  The dictionary definition for stoma is 'a mouth like opening'. A stoma has absolutely no feeling in it, I touch mine for cleaning purposes and feel nothing. a stoma looks very pink, because it has good blood supply to it.

My first surgery left me with an ileostomy. The stoma for that had two holes in the end as it was a loop of sorts (still not totally clear on why that was - I think because the idea was to reconnect my small intestine to what was left of my colon). The stoma was (and still is) on my right side. A colostomy would have been if I was still using the part of my colon I kept but we were bypassing it to try to get it to heal up - which it did not.

The second surgery removed the rest of my colon. My surgeon did not change my stoma site but did change how it ends. It is now an end port (the end of my small intestine) instead of a loop so only has one hole.

Now, since you can not control what comes out of the stoma like you can through your rectum, you need to wear a bag all the time. The bags I use are two piece. So, there is a part that sticks to your skin called a flange. It looks like this:



Then you attach a bag to the ring, the bags look like this:


The bags have a velcro part at the bottom. You fold it a few times and seal it. The bags can be emptied as often as needed. You can also change the bag without having to change the flange if needed. I like to try to leave the flange on as long as I can as you do not get as many of those in a box as you do of the bags. The bags are on the large side and can be hard to hide when they get full so it's best to empty them often. The output from the stoma with an ileostomy is different than a normal bowel movement. Because I no longer have a colon, things to not digest the same way - some things not very well at all - and I have to be careful about some foods as I do not want to block the stoma hole. I hear that is very painful. The output varies from watery to mushy - never anything formed. 

I am still learning all the ins and outs of this stoma thing. I will have this for at least a year. I am trying not to think about this as temporary because we never know - it could be permanent. I've already had one letdown and it is currently taking it's toll on me. I think if I don't think of this as a temporary issue I won't be heartbroken yet again if I can't get surgery #3 next year. I still have my rectum which means I can possibly, get my small intestine hooked to my rectum and no longer have the stoma. I do wonder though what that will mean for me. Will I have chronic diarrhea for the rest of my life? Something to talk to the surgeon about and take into consideration. However, I do want my insides all back inside my body someday.

For the foreseeable future though, I have this: 



I have to learn to be comfortable with it and deal with it because it is now a part of my life. I do hope it helps with my pain and I do hope my Crohn's can go into remission. As we've removed the largest problem I was having with this disease, the hopes are high that my quality of life will be much improved.

A couple people have asked what the stoma looks like. You can google it if you want but you'll see some pretty nasty things. Next time I change my flange and clean my stoma I will take a photo of it and share it here - don't worry, I'll make sure there's a warning for anyone who is squeamish or doesn't want to see it.

Wednesday, April 30, 2014

Surgery and two hospital stays

The day after Easter I had the surgery, the one I didn't want but really did need. I am now a person without a colon. Weird.

I did well after surgery. The surgeon went in through the old scar from January - although it goes further up this time. Surgery was on Monday and I was released on Friday. However, Friday night I started having some bad pains and by Saturday morning it was almost unbearable and my stomach was very bloated. My dad took me to the local hospital and after spending the whole day in the ER and a few staples taken out, they admitted me. Looked like I possibly had a slight infection but they were not sure. Luckily I was admitted because after a very miserable, painful Saturday night (I had a great nurse who came every 2 hours and gave me pain medicine and just took good care of me) the doctor came Sunday morning and took a few more staples out further down the scar. At this point nothing had come out of my ostomy bag in over 24 hours. I was now getting a fever, headache, nausea and horrible horrible pain. The second he took those staples out, that ostomy bag filled up FAST.

There had been so much fluid building up in my stomach that my intestine was so compressed it was blocked. So all night long I was backing up. It was lucky I was at the hospital because that could have gotten a lot worse very fast. I wish they had popped the lower staples sooner but it appeared that the fluid was higher up so they did what they thought was best. After a couple more days of monitoring, pain medication and antibiotics I was sent home on Tuesday. And I am doing better. I feel better than I did after surgery number one which is promising. The infection was unfortunate but with colorectal surgery it's actually fairly common (at least that is what I was told)

I had a follow up with my surgeon today. She did tell us that taking my colon out was the right move. Once she got it out and could see it - well… it was bad, real bad. There was so much active Crohn's Disease there - none of it was healthy. NONE. I was in pain because that organ was still in my body. She thinks my prognosis is great and she's excited to see how I do from here on out. She was almost giddy. Her excitement about it got me a bit excited too. How different will life be now? How much better am I going to feel now? I haven't been pain free in close to 30 years… I am so excited to see what that feels like. :)

For the foreseeable future, I have an ostomy bag so I am going to have to learn how to deal with it without being so self conscious about it. I am looking forward to the surgery pain easing off so I can see if I am really pain free now. I am looking at another 4-6 week recovery and no lifting the kiddos again but I know I'll have help.

I am going to continue to try going gluten free to see if it helps keep my inflammation at bay. The doctors don't think it'll do anything but I don't see any harm in trying. Keeping my inflammation at bay is a key component here. If I can keep it under control then in 6-12 months I could have another surgery…. one that could put me back together with NO external bag. That's a surgery I desperately want. I don't want this bag forever. I want to be "normal"

Monday, April 14, 2014

A change of scenery is always good

I'm on a little mini break as we speak. It's late so my friend is in bed already but me… being the crazy night owl even though my kids still get up at the crack of dawn… I'm still awake.

Just being somewhere new and not spending so much time thinking about what's going on with me has been a relief of sorts. I wish this trip was longer but I have to get back for my next dumb-ass doctor appointment on Wednesday morning so we have to leave tomorrow.

I know there is a very large part of me that's still depressed about everything but I think I am hiding that part quite well on a daily basis. While some may think hiding it is not a good idea it works for me right now. I can't be that person. That sad, mopey, depressed person because I, on the whole, am not that way. I don't like being that way or feeling that way.

The change of scenery has been good because, for the first time since my procedures I have not cried once. Quite possibly this is because I have spent very little time alone and I try not to cry in front of anyone if I can help it at all. But quite possibly because I just needed to get out of my house and out of my daily routine.

Now I just need a weekend away without my kids. I love them dearly but that would be quite a relaxing break indeed :)

Wednesday, April 9, 2014

Friends and Faith and Prayer

I got to see my friend Tasha this week. She is one of my best friends, like a sister to me, and is away for work in Paris for a few years. She came to town for a quick visit and it was so incredibly good to see her. I miss her already but we had some good quality time together and I am just overjoyed that I got to spend time with her. We talked, laughed, were goofy together - all the things you love about a best friend. Our time together was too short but it was better than no time at all! She'll be back in August for her next visit and I am already counting down the days until she returns :-)

Tuesday she saw my posting on Facebook about how I was feeling about my doctor appointment, surgery (or lack of) and got me out for some much needed time together. We ate, drank and sang karaoke. I talked to her a bit about how I was feeling about it all, about the options and a few other things. She had some good advice and she gave me some things to think about.

My other sister-type best friend Kacey has suggested a healing service at church more than once. I am a bit apprehensive about this for a few reasons.

  1. I am still out of my comfort zone with church in general. 
  2. I don't really like attention on me when I am in a situation where I am shy.
  3. I am not quite sure I really believe that people praying for me can actually heal me.
Tasha pointed out that it couldn't hurt and that she does believe in the power of prayer. She had a good story about this as well. Which reminded me about the time Kacey said a prayer for me to help my pain go away - and it did for a few days. At the time she did not tell me how she prayed I would feel. But I felt exactly the way she prayed I would. Probably not a coincidence. A skeptic would say I told her how I felt and she just said that's what she wanted me to feel. But… I know Kacey well enough to know that she doesn't lie. And especially not about something like this. She's got this crazy awesome faith that I just don't know that I'll ever have - not in the same way she does. It's something I am kind of in awe of and admire about her. Anyway, I suppose Tasha is right. It couldn't hurt to go to the service. However I am not sure it would work if I didn't believe that it could and I am only probably halfway there. I want to believe it would and only because of that one instance do I think there is something to it. But I feel like I would be uncomfortable with attention on me like that.

I guess one way to not be so shy and uncomfortable in a situation is to just do it. I haven't been scared off from church yet. I am taking everything in but it's taking me time. I am still a bit shy at church but can feel myself getting more comfortable the more I go. I do enjoy it and wouldn't go if I didn't want to be there. I mean, really, I am not getting out of my pajamas on a Sunday morning for something I don't want to do. I guess I am just waiting for that point where I just have this faith and believe everything I am hearing/reading/observing. It's coming but it's coming really slow.

I am just struggling a lot with the options I have as far as the Crohns is concerned. I'll know more after my appointment with the surgeon on Wednesday but the options presented to me thus far are:
  1. wait and see - keeping the stoma (and my daily pain) and going for repeat colonoscopies to see if I heal or,
  2. remove my colon and get a lovely permanent illeostomy.
Neither of these options seem good to me and I feel like no matter which I chose, I'll regret it in some way. It feels like a lose-lose situation to me. However, if I can gather up some faith then maybe, maybe, a healing service could help me. I guess you never know. I just don't know how to believe that it can happen - even with the little bit of proof I already have to back it up. I've got two important people in my life suggesting I give it a try - maybe I should listen.

Sunday, April 6, 2014

Some days are harder than others

Well, no surgery for me. I "failed" my tests yesterday and am not cleared for my reversal. Three months of complete colon rest and the damn thing still looks awful. I still have an lots of inflammation, scarring, polyps and an abscess. I've done everything I am supposed to do. I've even been giving the gluten free thing a try. Yes, I am still in pain but not as bad as before - although if I were to be reconnected and food was to pass through my colon again I suppose I'd still be in and out of the hospital.

*sigh*

I'm sad, angry, depressed… and a whole lot of other emotions I have yet to identify. If I think about it too long, talk about it for even a minute, I start to tear up or cry. I was not expecting this. I was expecting them to clear me for surgery. I want this ostomy bag off of my body. It's simply not fair. I've been through enough. I know I've said this before but really, REALLY, not sure how much more I can take and keep my sanity. More than ever I am incredibly grateful for the people I have to lean on.

Stephen was so good when we got the news (thank you so much hun, I love you). I tried so hard not to cry at the hospital. He didn't say anything, just held my hand and was there for me which was exactly what I needed. He really is a terrific husband. The nurse said a lot of things that I thought were nice but really, she didn't understand. Yes, I know I have a great husband and wonderful children - and yes I am happy to have them in my life but right now… right now… that's not what I need to hear to make me feel better. Let me be upset about this news because, no matter how minimal it may seem to you - it's devastating to me.

This issue sounds so trivial when I think about what other people have to go through but right now, it does seem like the end of the world to me. Right now, in this moment, that's how I feel. Those who know me well, know how much I was looking forward to this reversal. It may have only been a few months of the ostomy bag but if you ever have to live with one… you'll know that a few months seems like a lifetime. April 21 was my light at the end of the tunnel and now… who knows.

I have an idea what the surgeon is going to say at our appointment on the 16th. I'll put money on it if anyone wants to take that bet. She's going to tell me that this was an unconventional treatment and she was never sure it would work. She's going to suggest I remove my entire colon. I am not ready for that but… I am also not ready to live in limbo and have a colonoscopy every month to see if maybe, MAYBE, I've healed enough to get the reversal. If I haven't healed after three months so far… then why would another month be any different?

I don't want this. I wish so much that I didn't have this disease. How much more do I have to go through?

I don't usually use names when I am doing the whole blog thing but screw it….

Thank you Kacey. You have no idea how much I just needed those hugs today (I'll probably need a few more in the next couple weeks). I rarely cry, even a little, in front of anyone and that may not be the last time so hopefully that's ok. You've been there for me so much lately and you have been such an amazing friend. Thanks for letting me vent, cry, be mad, just sit at your house and say nothing… it means a lot. I really don't know what I'd do without you. Hope you and your clan aren't too sick of me being around :)

It's midnight so I guess I should try to sleep. Hopefully tomorrow will include less crying and being sad about this but I do think this one… this is gonna take some time.

Monday, March 31, 2014

Is it spring now?

Well, April should be a good month - no more snow right? My reversal surgery is scheduled for the 21st. I am ready, nervous, but ready.

Friday I have to spend a good part of the day at Hopkins, getting a few tests to make sure I can even GET the surgery. I am being put out for at least one of them (but hopefully both because the other one sounds painful so, yeah, not looking forward to that) All I can do right now is hope and say a little prayer that the tests go well and I get the go ahead for surgery. 

Last time I had a procedure at Hopkins they tried 6 times to get an IV line in and I wound up with a PICC anyways ( I still have scars from all three of the PICC lines I was lucky enough to get since October). They even tried to get me to agree to a central line (no way) so I couldn't be so "difficult" when I had to get IV's. Hopefully it'll only be one stick this time but they tell me when I am nervous it's harder to get that line in and…. how is it easy to be not nervous? At least my husband will be there with me this time. I was alone last time, and scared, which made me probably even more nervous. He'll be with me for all of my Hopkins visits this time which is going to make everything so much better. My procedures on Friday, my pre op visit on the 16th and my surgery on the 21st. 

I still wish I knew how long I'll even be in the hospital. Apparently that's not information easily given since my recovery will depend on how easy the reversal is. If she can do everything from the existing stoma site, without additional cutting, I could probably be out within a day or so and my recovery will be what, 1-2 weeks? However, if my body decides to be difficult and she has to cut me open again… it'll be at least a week in and then another 4-6 week recovery which includes not being able to lift my kids again.

I am looking forward to being put back together. And while I hope it's the simple surgery… I'll take what I can get. This was not a surgery I wanted to begin with. I wanted to be put back together as soon as she removed that section of my colon - I never wanted this. And, to be honest, it weighs heavily on my mind the last thing the surgeon said at my last visit:

The surgery was very unconventional and… we'll see if it helped. Once your colon is back in working order, the same thing could very well happen again.

Which will mean I'll be back in the hospital. And I KNOW I should remain positive and have faith that this surgery will help me get through at least another 25 years of dealing with this disease. But… I saw her face when she talked to me about what will happen post surgery. The woman who works at HOPKINS, is one of the best in her field, I saw that she CLEARLY does not think this was the answer. Call me crazy but that's how she came across to me. The answer can not be, cut out my entire colon (which was presented as an option last time and I said no). It just can't because I don't feel like I have the strength or the energy to deal with that - it's too much and I've been through enough.

I didn't plan on this being a whiney blog about this but I guess I needed to get it off my chest. I know I am worrying about it all way too much. I just want the 21st to get here already so I can get it all over with and try to move on. I have overall been feeling better lately. I still have pain almost daily but it's not so bad I need to take anything stronger than a tylenol (most days anyway). I call that my functioning level of pain and that's just my normal so I can deal with that. At least I haven't needed the strong stuff daily in a long time now. I did hate how I felt being doped up all day long. Do you have any idea how hard it is to take care of two little ones when you can barely stay awake? I do feel lucky that when it was time to stop taking those pills, I just stopped. I was on dilaudid and various other narcotic pain meds from October through Febrary (and a little bit into March). I didn't get addicted which I think is pretty amazing considering how long I was on them on a daily basis.

Now I just need to work on my worrywart nature and we'll be good :)

Tuesday, March 25, 2014

A lot going on

I've got a lot on my plate right now and a lot that keeps me from sleeping. Some things I have talked very little about because I'd just as soon try to forget them and some things I've talked a lot about but are still on my mind.

Today was a bad day for me. I spent a good deal of it pissy and in a dark mood. I mean, I yelled at my daughter today who isn't even 2 yet. She wasn't doing anything bad… just whiney and slightly bratty… probably because she has teeth coming in. At one point, I snapped at her and she almost cried (sorta cried a little) then went and got her coat and asked for her Auntie. Yep… Mommy fail for the day for sure. I felt bad after and tried to not be so grouchy but damn, I woke up way way on the wrong side of the bed today.

A good part of my mind is on my health, new medications (are they working, not working… what?) and my surgery next month. I am BEYOND excited to get my reversal and also scared out of my ever lovin mind (aside from the fact that surgery and being put out is just scary). What if it doesn't work and all the problems I had starting back in October just come back? I can't take all the hospital stays and being drugged up 24/7 again, I just can't do it. While pain meds are terrific for getting you out of pain I really do hate how they make me feel - tired, groggy, in a haze - barely remembering the day or sleeping through most of it. I think from October to early February I slept more than I was conscious. That's not a life I want to be living again.

I am scared because I am having pain in my colon (and I REFUSE to take any more pain meds right now). This worries me and confuses me because I am not using it right now which means only one thing: the Crohns is still active there. What if I develop more fistulas and another abscess that just won't go away? I can't have another section cut out and another temporary ostomy bag. And I really don't think I can handle a permanent bag. This has been awful. I hate every second of it. The bag is seriously the most disgusting thing I have ever had to deal with and that says a lot seeing as I have two small children who have done a lot of gross things (including throwing up IN MY HAIR)

And then: what if the drugs don't work this time? I don't even want to think about that because… well, I just can't.

Everyone has good days and bad days and today was a bad one for me.

The good news is, tomorrow can only be better, right? Yeah I think so.

Monday, March 17, 2014

Curious

So a while back, when I wasn't feeling particularly well, my very close friend sent me a prayer she had said for me that day. I saved it (and another thing she said right after) to my computer. I read it on days I feel sick, sad, annoyed with life, whatever. It honestly makes me feel better. I read it when I think I am a burden to her or anyone else in my life, and it reminds me that I am not. That the people who truly love me and care about me don't want to see me sick or in pain and they really do want to help. It doesn't stop me from feeling the things I feel but reading it does help. It has helped me on days when I have been in a dark place and does help bring me out of a funk.

I've been thinking that this probably means something. I've been slowly becoming more curious about prayer, the bible, God…. all of it. Still not sure what's right for me or what I even really believe but… I am definitely more curious. If reading a prayer over and over helps me feel better then, what does that mean? Is it simply because someone I care a lot about wrote/said it for me or what? I'm really not sure. I have a lot of questions and am still a little wary of church but yeah… I'm curious a bit.

Being brought up Catholic and going to church every Sunday for years and years I feel like I should know more but I don't. I don't know if I ignored it, forgot it, blocked it out…. but I have a lot of questions. Hopefully I don't come across as stupid or ignorant when I ask any of the questions I have...

Tuesday, March 11, 2014

Things happen for a reason?

I think things happen for a reason. I am still trying to figure out if things just randomly happen for a reason or if there is some divine intervention taking place but whatever the reason, or cause, or whatever, I do really believe this. I think that every choice I have made in my life, good and bad, has made me the person I am today. I like to think that I am a good person. I care about others (sometimes too much even? I don't know), I try to put others first, treat people how I'd like to be treated. I don't lie, cheat, steal… but I really believe that even the bad things (and there has been some bad) have shaped me. I've learned from everything that's happened to me.

I am not perfect, no one is. I still learn from my choices, my decisions, my relationships… but I do think that everything happens for a reason. I think people come into our lives when we need them. Some stay, some don't, but I am not sure it's a coincidence that some people become parts of our lives. At least not every time. We've lived in our town now for almost two years. I've met many people in my two years here and some who I do think have come at a time when I've really needed them. There are people I've met that I was sure would be close friends (and now aren't really), some who I've met and never would have thought would be a close friend and now are very close to me. Each one of these people have brought something into my life that I've maybe needed.

In this town it seems I've made two very close friends, the type of friends you call family. One is gone from town for a while and I miss her terribly. What I find so interesting is since she left, another friendship has gotten closer. Coincidence? Probably not. I didn't seek out another friendship, it just kind of happened. I feel lucky to have these people in my life, as well as the other friends I have made here.

I don't make close friends easy. The kind of close friends you can tell anything to, at any time. The kind you hope would share things with you as easily as you do with them. While I am pretty much an open book about a lot of things, the hard stuff…. well, that's not easy to share. I can write it and post it… but that's totally different.

Well, I went way off track there. Anyways…. a times I miss my grandma. When she was alive we talked a lot. When I moved away I would call her at "tea time" and we would sip our tea and chat on the phone. It became a kind of ritual for us. For whatever reason, lately, I've been missing her a lot. I don't know if it's all the health issues or just wanting to talk to her but it's been hard. Today, Donovan (my 4 year old) came downstairs to tell me that "big Iris" told him to come down and tell me that she loves me. I have no idea if she really visits him (although I do like that thought) but he told me that at the exact right time today. Maybe he just hears me talk about her (although I don't often) or whatever but I believe there was a reason for that. I was missing her a lot right when he came down and told me what she said.

Sunday, March 9, 2014

Tests were done Friday

I had my tests done on Friday. Ultrasound of my ovary and my mammogram. The radiologist slipped and muttered something out loud "That's not a cyst, I don't know what that is" and then wouldn't tell me anything else. Thanks lady for giving me all weekend to think about this. Luckily I've had some good distractions this weekend including a fun game night. But, when I am alone with my thoughts I am wondering what the doctor is going to tell me when she calls tomorrow. IF she calls tomorrow. She better call tomorrow. Is it something? Nothing? I also wonder if I'll get a call back on my mammogram. Not sure why I even think I will. Hubs says I am being pessimistic - I am just a worrier, always have been.

Oh and Friday night I landed my damn butt back in the hospital. SO SICK of that place. I was having pain on my left side pretty bad. Any time I moved it was making me tear up. I was not going to say a word and just grin and bear it because I really didn't want to go back. But… my babysitter ratted me out (and I am not mad - grateful you care about me) to her mom (my friend) and she came over and took me in. Didn't really give me a choice about it either. Good friend that one - she's a keeper. :) But I am probably as sick of going to the hospital as she is of taking me there. Gotta stay away from that place!

The doctor couldn't find anything wrong and I have to tell you…. the look she gave me told me she now thinks I am a an addict looking for pain meds. I wasn't given anything for pain and sent home. The look said it all - since the blood work said I was fine then it was in my head. I'm not crazy… at least I don't think I am. It hurts a lot less now but I also spent all weekend not picking up the kids. I am starting to think I perhaps have some sort of hernia that I aggravated without knowing it. I am going to try my hardest not to pick the kids up - very hard when you're alone with them all day long.

Hoping tomorrow brings some good news so I can stop worrying that there may be something wrong with me. Well, something ELSE wrong with me. Spending the morning with my friend and then watching another friend's daughter after school (will take the kids to the park if it's nice out) which is good - I won't be sitting around waiting for the phone to ring.