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.


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.


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: