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Crohn's Disease Forum » Your Story » New and worried with questions


08-14-2015, 01:49 PM   #1
gutsngory
 
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New and worried with questions

Hello everyone. I am going to jump right in! My name is Amy. I was diagnosed with Crohn's and ulcerative colitis about 2 and a half years ago. I have been hospitalized for this 25 times over the last 30 months. I also developed Stress Cardiomyopathy.
I have been on Remicade infusions for about a year. I started every 8 weeks, and have moved down to every 4. They were helping, then I started getting D-Def. I got a fecal transplant which didn't work, so my Gastro Doc stopped the Remicade for almost 3 months and put me on antibiotics long term. I don't have C-Def anymore, and had my first infusion last Tuesday in almost 3 months.
I have been in so much pain for the last month and a half. But it's different. I know it's probably cause the C-Def is gone, but I don't remember this pain right above my belly button being so bad when I flared up before the C-Def...I know the Remicade probably won't kick in good til I get my next one in 4 weeks. It's just, the constant pain...I almost feel like I'm in full blown labor! It gets worse when I put ANYTHING in my stomach...even an ice cube! But I'm so hungry...
I'm just worried it might be something else on top of everything. Before I was diagnosed, they found other things while investigating my symptoms. I ended up having my gall bladder (and all it's stones) removed, and a full hysterectomy resulting from all the pallops that were in my uterus.
08-14-2015, 02:10 PM   #2
fuzzy butterfly
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Aw Amy you've been through an awful lot in a short space of time, hopefully the remicade will kick in soon. In the mean time please tell your doc how bad your feeling and that you need more help to get you through until it does. Don't be afraid to stand your ground on this Coz you should not have to be suffering, while they have no idea how bad these pains can be. Wishing you well, and sending hugs..
08-14-2015, 02:23 PM   #3
gutsngory
 
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Thanks. I was just telling myself I'll call this Monday if things don't get better. If things get worse, well, I'm a frequent flyer at the local ER! LOL Even the rotating on call Dr's at the hospital know me by first name. It has it's advantages...
08-14-2015, 02:39 PM   #4
fuzzy butterfly
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Your welcome Amy, ye that sounds like a plan, haha being on first name terms does help or at least it should. Keep pecking their heads hun till your sorted out. Hugs..
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