Monday, July 28, 2014


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.