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UC/ileo-anal pouch/Crohn's? Back in the Battle

Hi All,

As requested, wanted to add my history as I start using the forum. i was diagnosed with UC about 21 years ago at 18yrs. We managed it for years with sulfasalizine and asacol and for the most part I was lucky to remain in denial for quite a while and just went about my life (taking 8 pills 2x/day:).

About 14 years ago I got into 2 major flares and was hospitalized for a couples weeks at a time. The second one got me for good and I ended up with an ileo-anal pouch. My diagnosis was changed to indeterminate colitis at the time. The surgery and reconstruction process took about 1.5 yrs and I had to learn to manage an ostomy for a time. However, overall the procedure was a success and after recovery I went back to a "normal" life for the most part.

I am now in Chapter 3... and about 2 years ago I started to have annoying symptoms with the pouch. They mostly involved a sensation of narrowing of the anal canal so I require a lot of straining to relieve myself, a lot of frequency and urgency I hadn't dealt with in years. We handled it surgically with repeated balloon dilatation of the anal musculature but about a year ago, we made the lovely discovery that I had developed a vaginal-anal fistula as well (another long story there). This concerned my surgeon that we may actually be dealing with Crohn's and referred me to a GI doc. After discussion with the GI, he was unconvinced that I had Crohn's and suggested trying some antibiotics (which was a new strategy to me at the time). Well, it worked like a charm, things went back to normal almost immediately. I was on Cipro and Flagyl starting Dec 2010 and have remained on Flagyl since then becuase weaning off it seems to bring symptoms back.

Currently Flagyl seems to be becoming less effective and cipro is helping a bit but I am back in the battle as they say. Waiting on my GIs next thoughts and hoping I don't run out of options with the pouch....

Anyways, worst part for me is dealing with not feeling great and having to handle the irritability that my symptoms create so I don't bite my family's head off:)

Enjoying the forum so far.
 

xJillx

Your Story Forum Monitor
Hi jstover and welcome! Boy, you've been through a lot. I am sorry you aren't feeling too hot these days, either. I hope your GI comes up with a solution for your pouch issues.

If you haven't already, I suggest checking out our new UC Forum. I am sure you'll find it very helpful. Once again, welcome!
 
Hi there :) So glad you found us. That is indeed some battle you've been having and I'm sorry the antibiotics seem to be failing you now. Hope you don't have to wait long to see the GI and they can get the fistula sorted. Let us know what he says.
 
Hi I am new on here but wanted to let you know that I too have an ileo anal pouch. Originally diagnosed as UC and had large bowel removed but a few years ago had diagnosis changed to Crohns. Unfortunately I still have to go toilet 15-20 times a day and have to strain a lot too.

I would go into my story but feel like I would be typing for 2 hours!
 
Hi All,

As requested, wanted to add my history as I start using the forum. i was diagnosed with UC about 21 years ago at 18yrs. We managed it for years with sulfasalizine and asacol and for the most part I was lucky to remain in denial for quite a while and just went about my life (taking 8 pills 2x/day:).

About 14 years ago I got into 2 major flares and was hospitalized for a couples weeks at a time. The second one got me for good and I ended up with an ileo-anal pouch. My diagnosis was changed to indeterminate colitis at the time. The surgery and reconstruction process took about 1.5 yrs and I had to learn to manage an ostomy for a time. However, overall the procedure was a success and after recovery I went back to a "normal" life for the most part.

I am now in Chapter 3... and about 2 years ago I started to have annoying symptoms with the pouch. They mostly involved a sensation of narrowing of the anal canal so I require a lot of straining to relieve myself, a lot of frequency and urgency I hadn't dealt with in years. We handled it surgically with repeated balloon dilatation of the anal musculature but about a year ago, we made the lovely discovery that I had developed a vaginal-anal fistula as well (another long story there). This concerned my surgeon that we may actually be dealing with Crohn's and referred me to a GI doc. After discussion with the GI, he was unconvinced that I had Crohn's and suggested trying some antibiotics (which was a new strategy to me at the time). Well, it worked like a charm, things went back to normal almost immediately. I was on Cipro and Flagyl starting Dec 2010 and have remained on Flagyl since then becuase weaning off it seems to bring symptoms back.

Currently Flagyl seems to be becoming less effective and cipro is helping a bit but I am back in the battle as they say. Waiting on my GIs next thoughts and hoping I don't run out of options with the pouch....

Anyways, worst part for me is dealing with not feeling great and having to handle the irritability that my symptoms create so I don't bite my family's head off:)

Enjoying the forum so far.
Hi. I hope your doctor can come up with a solution soon. Let us know.
 
Hi I am new on here but wanted to let you know that I too have an ileo anal pouch. Originally diagnosed as UC and had large bowel removed but a few years ago had diagnosis changed to Crohns. Unfortunately I still have to go toilet 15-20 times a day and have to strain a lot too.

I would go into my story but feel like I would be typing for 2 hours![/QUOTE
Sorry for what you are going through. Please feel free to share your story.
 
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