Potential Crohn's diagnosis following J Pouch

Nearly three out of four ulcerative colitis (UC) sufferers (73 percent) responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse (64 percent), their sexual relations (75 percent) and their emotional state (82 percent).
How do you cope with colitis ? Are you struggling with the emotional effects ? Even if a problem shared isn't a problem halved it may help to discuss it with people in the same situation.
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Potential Crohn's diagnosis following J Pouch

Post by Iamsteed »

Evenin' all

Without wishing to labour my history I was diagnosed with indeterminate colitis in 2011 and I have a J pouch which was done in three stages and completed around April 2014. After getting over the post-surgery period I had a normal life and would eat or drink what I wanted.

About a year in I had pains when going to the toilet and a feeling of still needing to go even after having just done so. I had a flexible sigmoidoscopy and was diagnosed with pouchitis. The surgical team looking after me were not concerned, I was prescribed Metronidazole and it settled down.

Around February of this year I had noticed blood and again had discomfort sometimes when going to the toilet. I wasn't worried and attended my GP believing I was largely being pre-emptive. I had another flex with biopsies and pouchitis was again diagnosed in March, with the consultant surgeon fairly relaxed and saying it was mild inflammation.

This was around the time of a period of heavy drinking and treatment over a period of weeks with Metronidazole (flagyl) (I did stop drinking for that) and Ciprofloxacin hadn't worked.

by late May/early June my symptoms had graduated to pain which would affect my sides, lower stomach and at the backs of my ribs. I had diarrhea, increased frequency to pass stools, fatigue and general malaise. The pain was new and unnerving. Up until that point my only experience of pouchitis had been pain or discomfort when going to the toilet.

I went to see my GP in the interim because my next scheduled appointment as an outpatient was quite a bit away. I was prescribed a third drug, apparently useful for bacterial infections. (began with a "A" and I will update when I know.) He also tried to sell me on the benefits of a gluten-free, dairy-free diet. I had always been able to eat or drink what I wanted so I wasn't entirely convinced this was an issue.

I saw some improvement after taking that but all throughout I've also had a pain on the point on the left side of my pelvis. Even when I've been relatively pain-free, if I poke it, the discomfort is there. My GP said it couldn't be linked and must be a muscle issue but it has been more-or-less constant throughout this latest saga. I went back to the surgical team but the guy seeing me wasn't familiar with my case. It was suggested I'd be transferred to the gastro team to start infliximab.

However there were some admin issues, I wasn't updated when told I would be and I pressed things with their team, resulting in going back to the consultant surgeon and being prescribed a fourth drug, for 2 weeks, which was intended to deal with what he said might be "secondary pouchitis." (Again, I'll add the name later.)

He suggested that rather than primary pouchitis, an infection could have developed around a hole in the join (secondary pouchitis) and one way to get an idea if that was the case would be when seeing the effectiveness of this latest treatment. He also arranged an MRI and, for the first time since my J pouch was hooked up, he suggested we needed to look into whether I actually have Crohn's disease.

That prompted me to read Shen's stuff on primary and secondary pouchitis and at least get an understanding of where things might lead.

I had the MRI yesterday and see the team again as an outpatient on Wednesday next week.

While I'm feeling as well as I have been for a while it's clear to me that I still have symptoms, even mild ones, and candidly, I'm rather scared. I've read about the chances of pouch failure with Crohn's and I'll well aware that apart from a special subset, they don't do a J Pouch if you have Crohn's.

I don't want to go back to the stoma bag, I'm worried and feel guilty that my hard-drinking put me in this situation and I'm living in fear that they will take a decision to reverse and I'll be stuck with the stoma for life.

Has anyone been in a similar situation?

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