Living with Crohns Disease – Intestines for Sale

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I think one of the biggest things I hate about living with Crohns is the future.  When you have a chronic illness, sometimes it can flare up, for no fucking reason and kick your ass (figuratively and literally).  I hate not-knowing.  Especially lately.  When I was in a full-flare, not-knowing wasn’t bad.  The only thing I couldn’t predict was feeling better.  So when I had a random day, out of the norm, it was fabulous.  Now though, I’m practically in remission.  The normal symptoms of my disease are practically non-existent, except for the fistula.

Yes, I still have it.  It connects a loop of my intestine to my bladder and it makes for  a bad day.  I was planning on surgery but a multitude of things made the decision for me to put it off.  (And unfortunately followers, this decision is not up for debate.)  So basically as the decision goes, I am trying to stay as healthy as possible for as long as possible until I have to have surgery.  It’s a horrible plan, but at that point in time it was either choose to have the surgery and fuck everything else up, or put it off so life is more stable for a major surgery.

Anyway, on with my rambling.  So for the past few days, after months of being symptom free, I haven’t been feeling too well.  Fistula symptoms, upset stomach, diarrhea and nausea.  I’ve been taking it easy, sticking to teas and easy to digest foods instead of my coffee and grease.  Doesn’t seem to be too much change, but I’m still wary.  Having had two obstructions in the past, anytime symptoms mimic the early signs of obstruction I get worried.  So I’m taking it easy and hoping for the best yet still preparing for the dash to the hospital just in case.

Sometimes Crohns Disease seems to suck the life right out of me and not in the way you’d think.  On my bad days, I still strive to do everything I normally would do as well as things I want to do.  It’s the mental aspect that is different.  It turns my normally hectic mind into something more anxious and scary, almost more chaotic and full of worry.  I don’t want to end up sick, I hate being in the hospital, but at the same time, I long for all of this to be over with.

Normalcy.  It’s something I strive to have, but Crohns Disease messes it up.

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Missing in Action: One GI Joe – One Uncomfortable Surgeon

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Everyone knows I’m a horrible patient.  I’ve chased away more GI doctors, surgeons and doctor’s assistants than I can count.  My step-ma says it’s typical for a Crohns patient, that most doctors know we all almost have a personality disorder, but alas.  I just dislike doctors and hospitals.

It’s a damn shame that I have to spend so much time in them.

After the last bowel obstruction, my GI finally managed to convince me to have surgery.  It only took 5 years and 2 obstructions, I should give him an award.  Unfortunately for the rest of the hospital and to the delight of my step ma (a doctor there) I chased away the surgeon that was assigned to me while I was admitted.  Then signed out AMA.  Like usual.

However, I did finally go in for my surgical consult.  Step-ma found me a surgeon that according to her and my GI (the only doctor I haven’t chased away.. not for lack of trying) that I will “mesh with”… ie: not destroy.  He seems alright, however it made my day when I managed to make him uncomfortable.  After he described the surgery I said “You know um, hey.  I kinda lost this gi joe figurine like 3 years ago… when you’re like all… in my intestines and what not… and if you find him… please bring him back.  I miss him.”  It was like I kicked his puppy.  Or first born child.  Either way after a good 20 second blank stare and a blush, he laughed.  Which means he’s okay in my book.  So far.

So here’s the deal.  Crohns has destroyed at least a 2 ft section of my small intestine.  For some reason, even though the disease has jumped around quite a bit over the years, it’s always hit this section the worst.  Said section developed a fistula that attached itself to my bladder.  So what I need done is a resection, I’ll lose those two feet and possibly a small portion of my colon, and they’ll remove the fistula and repair my bladder.  Yeah.  I’m 26 years old and I’m having bladder reconstructive surgery.  Oh joy.

Since I no longer have an obstruction, just swelling, it becomes an elective surgery.  The surgeon wants it before the year ends, and I want it before the holidays.  Nothing like major surgery before Christmas.  So I’m aiming for the beginning of December.  I’ll be out of work for at least a week, most likely two, but after that, with any lucky, my Crohns will be in remission for a long time.  Complete remission.  Something I haven’t even had thanks to this damned fistula.

Am I happy about surgery?  Hell no!  It’s something I’ve literally been avoiding for 5 years.  It took major convincing to get me to go on Remicade, even Humira.  Whenever surgery was brought up I just walked out of the office/checked myself out of the hospital.  However, after 5 years of this, I’m tired.  I’m tired of the constant pain, the stomach issues, the 3 year long UTI.  I’m tired of hospitalizations every other month and steroids.  I’m tired of being sick.  Surgery gives me the chance to be healthy, at least for a little while.  So even though I’m terrified, I’m going to hop in the saddle and go for it.

You fuckers better come visit me in the hospital.

Bliss: No blood draws at 2am

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I am aliiiiiiive.  Yup.  Not to mention at home.  I flipped a shit yesterday after having to deal with my “assigned” surgeon and his shit-head-know-it-all logic.  I spent the day doing light exercise, sneaking crackers and water to test my obstruction, and basically arguing with him and his team.  By about 4 pm I had it.  I called my nurses in, my doctors already knew I was going AMA, and told them I was leaving by 6:30 with or with out needed paperwork.

Basically what happened was, I have (had) an obstruction in my small intestine thanks to my Crohns Disease.  Second one in over a year.  Just like last year, it’s not a normal obstruction, just swelling around where the fistula is, blocking the way.  So in order to get the swelling down, I need to be on steroids and anti-biotics.  My GI doctor *is* on board with surgery, but also understands that I need to be at home with my daughter and back to work as soon as possible.  The Urologist and Head PA also understood the need to plan out surgery instead of going gung-ho.  So after chatting with all of them and ignoring surgeon boy I decided it was time to go.  All of them know that I don’t stay for observation.  I am planning and going back to have the resection done, but down the line, when I can arrange time off with work, and get everything taken care of house-wise.

I am feeling much better, that’s mostly because I’m at home though.  I always take my bedroom for granted.  Man I missed sleeping in my own bed and THROUGH the night, even if it was just for a couple of days.  I love my 3rd shift nurses and most of them remember me or get used to me quickly but man do I hate being woken up for blood draws and vitals.  So home and rest it is.  My plans for the weekend are to take it easy.  Heal.  And get spoiled by the boyfriend and kiddo.  I’m a lucky girl.

Happy weekend!

Crohns Disease: in the hospital you go!

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Welp, it’s about 4:15pm right now.  I’m laying in my hospital bed, forcing myself to stay awake.  I’ve been sleeping on and off since I got here at about 2am, thanks to some heavy duty painkillers.  I’m about due for another dose, but am putting it off so I can be somewhat coherent for a little bit.

So with my Crohn’s Disease, I’ve been blessed with what’s called a fistula.  Basically what it is, is an unnatural tunnel formed from one organ to another or from one organ to the skin.  Mine is from my small intestine to my bladder, and I’ve had it almost as long as I’ve been diagnosed.  It had been nearly symptom free for a year, just twinges on and off of pain but that’s about it.  Remicade Infusions seemed to have put it into check.  Until a few days ago that is.

Randomly, it started up again.  Not just a little twinge of pain either, full blown.  We’re talking fecal matter in my urine, sharp stabbing pains, frequent urination ( UTI ), and general aches.  It really caught me off gaurd and quite frankly it was very painful.  On the third day of it ( yesterday ) it was ridiculous.  I was running to the bathroom 4-6 times an hour, just to pee, and was bloating like there is no tomorrow.  I realized I might have a problem when I was still at work during the afternoon.  My stomach was protruding like I was 4 months pregnant, I asked a co-worker if I looked pregnant and she assured me I didn’t, so I went about my day,

After I got home from work, I was just generally achy from being so bloated.  I ate a super light dinner because I had a feeling I wasn’t going to be keeping my food and headed to bed early.  At just about midnight I woke up to a sharp wave of pain.  It woke me out of a dead sleep and before I knew it I was curled up in fetal position crying.  As I was trying to breathe through the pain my mind was going into panic mode.  I knew this pain.  I had to get to the hospital.  Once the nausea hit and I realized I couldn’t walk with the pain, we left the house.

So here I am.  I have another small bowel obstruction, right near the fistula, in exactly the same place as last times.  I lasted 13 months with out being hospitalized but I guess it was just not meant to be.  This time though my boss didn’t have to drive me here, and no one had to break into my car either (long story, I love my co-workers).  Last time, the obstruction itself was very similar.  They kept me hear for a week and gave me iv steroids, the obstruction itself was actually just swelling and it was brought down.  I ended up staying on steroids way too long, but it was a good alternative to surgery.

This one though is putting me in a different situation.  Since it’s in the same place as last time, staff here seem to think that it’s possible scarring, that regardless, the intestine/fistula is not going to get better on it’s own.  Both the douche-wad surgeon and my gi specialist both recommend I have a resection.  Where they basically remove the diseased intestine and during that operation, they’ll repair my fistula and bladder.  They are super gung-ho about it, like sending students in here every 8 hours to ask me if I’ve “put anymore thought into it”.

You know what?  No, I haven’t really.  All I know is that I have the same reasons I’ve had since I was diagnosed.  I’m sure I need surgery, I’m sure it’ll help me in the long run, but good lord it screws me in the short.  If have surgery, I only have a 3-4 day hospital stay, but am not allowed to work for 2-3 weeks after.  Uhm, hey rich doctors!  Single mom right here, are YOU going to pay my mortgage?  I don’t know.  Finances play a lot into it, granted I have Ryan’s income right now, but still.  I don’t know.  I’m really in between.  I know it might put me into remission for a long time, we already know Remicade works for me, and the GI thinks that with that diseased section removed, it could work for even longer.  However, I also know that surgery is not a cure for Crohns.  There is a good chance the disease will come back, just in a different location.  I don’t know.

 

I’m not thinking too clear, maybe it’s the pain, or maybe the residue of the drugs.  I don’t know what to do.  I just want to nap.