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Crohns and Colitis Exchange

This is a place for members with Crohn's Disease or Ulcerative Colitis to get ... more

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OyWithThePoodlesAlready

Joined: 07/22/2010

My Story:

I'm in my early-mid 30s & just got a firm dx of Crohn's this year (April 2010) but have been feeling ill since the end of college. I use to have an iron GI track & then my senior year of college I started to get sick. It started out with tons of bloating & upper GI stuff. There's nothing to indicate that its related to the Crohn's, except that it really seems to me that the underlying blech feeling is consistent across time, regardless of the other symptoms.

For maybe 5 years, whenever I would eat, & whenever I would get hot -either from being in a hot environment or from exercising -I would get really bloated & look pregnant & all that pressure would cause heartburn, crazy horrible heartburn.

Then, about 5 years ago, I was visiting a friend & I woke up with these cramping pains. I had no idea what to make of it, I tried gas medicine, but it did nothing. I actually can't believe I made the 3 hr trip home -the pain was bad enough I was having trouble focusing on driving. It lasted for about a day, & then I was fine -for a month or 2 & I got it again for another 10 hours or so & then again in another month. It was to where I couldn't stand up -but bc it always passed, I never made it to the dr. I was always worried that by the time I got in there'd be nothing they could do bc I'd be fine again. Then one morning I woke up & it was really bad, so hubby called my gp who fit me right in. He thought it might be appendicitis so he called a surgeon who had me go to the ER to get a CT w contrast. That was a fun afternoon -they were out of beds so I sat on a stretcher in the hall drinking all that contrast w hubby sitting at my feet. After I finally got in for the CT, the radiologist came by & said "looks like its Crohn's". I had a followup w the surgeon the next day & he put me on antibiotics & a poison ivy type dose of prednisone & scheduled me for a colonoscopy 4 days later. After the colonoscopy, he said "well, I think its Crohn's" & to call him if I started to feel bad again. I had 2 friends w IBD & talked to them & decided that the meds weren't quite right & that I really needed to be seeing a GI for Crohn's, so I had all my records sent over & made an apt. The GI looked over what was sent & he told me that he wasn't sure it was Crohn's bc the biopsy didn't show inflammation. He said he wanted to do a followup colonoscopy in 6 months.

In the mean time, I discovered that if I stopped eating gluten, I didn't have the bloating pain. I started out just reducing gluten, but found I felt best when I avoided it all together. This also got rid of the cramping pains episodes, so I didn't go back for the followup colonoscopy.

For about 3 years I was doing great! I still couldn't eat a ton of fruit or vegetables, but felt so much better. Then a year & a half ago, my job had gotten really stressful & I decided to change jobs. During that transition, my allergies went bazerk, then, a few months later, my asthma kicked up (it had subsided w going gluten free) & a few months after that, the upper gi stuff returned. I discovered the flonase I'd been taking had gluten, so I stopped, & it helped, but not completely. Then I noticed the mass in my right side was becoming painful to the touch again. It just went down hill from there & by the spring, I was exhausted & in almost constant pain, it was all I could do to slouch at my desk all day then drive home & crash on the couch. I finally went back to the GI, had another colonoscopy. GI confirmed Crohn's & put me on prednisone. It made me feel better -not perfect & when I tried to taper I got more pain so I stayed @ 30mg for months. I'm currently trying a liquid diet plan, which is helping & I'm able to taper. I'll have to see if it helps long term or if I'll need to try Remicade, but for now I feel amazing.

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Reply: Remicade & Pregnancy

If it helps, both on and GI are on board with staying on Remicade assuming...

Posted by OyWithThePoodlesAlready

5 Replies | Reply | Watch This DiscussionReport This| Share this:Remicade & Pregnancy If it helps, both on and GI are on board with staying on Remicade assuming...

Not headed for surgery

well, I just heard back from the dr's office and the MRE showed some...

Posted by OyWithThePoodlesAlready

9 Replies | Reply | Watch This DiscussionReport This| Share this:Not headed for surgery well, I just heard back from the dr's office and the MRE showed some...

Reply: Not headed for surgery

Hi Everyone, just thought I'd stop by and I actually ended up getting...

Posted by OyWithThePoodlesAlready

9 Replies | Reply | Watch This DiscussionReport This| Share this:Not headed for surgery Hi Everyone, just thought I'd stop by and I actually ended up getting...

considering resectioning surgery

Hey everyone. I'm at a crossroads. My big issue right now is just...

Posted by OyWithThePoodlesAlready

23 Replies | Reply | Watch This DiscussionReport This| Share this:considering resectioning surgery Hey everyone. I'm at a crossroads. My big issue right now is just...

Reply: Not headed for surgery

yeah, its a weird set of emotions, I am really glad I don't need surgery....

Posted by OyWithThePoodlesAlready

9 Replies | Reply | Watch This DiscussionReport This| Share this:Not headed for surgery yeah, its a weird set of emotions, I am really glad I don't need surgery....

Reply: small bowel surgery

thanks Dr said he'd get the MRI setup, and I've been wearing my bluetooth...

Posted by OyWithThePoodlesAlready

11 Replies | Reply | Watch This DiscussionReport This| Share this:small bowel surgery thanks Dr said he'd get the MRI setup, and I've been wearing my bluetooth...

Reply: considering resectioning surgery

oh wow Jodi, I'm so sorry you had to go through that. When I was in the...

Posted by OyWithThePoodlesAlready

23 Replies | Reply | Watch This DiscussionReport This| Share this:considering resectioning surgery oh wow Jodi, I'm so sorry you had to go through that. When I was in the...

Reply: considering resectioning surgery

Hey Mindy, great to hear from you. I certainly will keep everyone posted. ...

Posted by OyWithThePoodlesAlready

23 Replies | Reply | Watch This DiscussionReport This| Share this:considering resectioning surgery Hey Mindy, great to hear from you. I certainly will keep everyone posted. ...

Reply: considering resectioning surgery

Yeah, the Dr was only going to wait 4 or 5 months for the remicade to do...

Posted by OyWithThePoodlesAlready

23 Replies | Reply | Watch This DiscussionReport This| Share this:considering resectioning surgery Yeah, the Dr was only going to wait 4 or 5 months for the remicade to do...

Reply: considering resectioning surgery

thanks Hannah, that really helps knowing everything you've gone through. My...

Posted by OyWithThePoodlesAlready

23 Replies | Reply | Watch This DiscussionReport This| Share this:considering resectioning surgery thanks Hannah, that really helps knowing everything you've gone through. My...

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