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Hi everyone,

Had my j-pouch for around 15 months now, (after 20+ years of UC and a rectal cancer diagnosis in August 2014) and have had periodical moans on this site as it's been really rough - and been grateful for all the advice I received, even though none of it actually helped (but read on - there is a good reason for that).

Because of the labyrinthine and ridiculous medical system here (sorry - am originally from the UK - tough to get my head round the way things work here), had to change my GI since my original one no longer took my insurance.

So - new eyes on my situation. New GI couldn't understand why I was still having BMs in double figures everyday, and waking up for around 3 more every night, given that I was taking enough lomotil and opium tincture to stop an elephant from going - and my first pouchoscopy in Jan 2016 had shown a healthy pouch. 

So, life has been pretty miserable for the last 15 months. New GI  wondered if maybe, though I had been diagnosed with UC, I actually had crohns too which had not been diagnosed since the UC explained all my symptoms, and the crohns would have been kept at bay by the UC meds, so there would have been no reason to look for it. He took some blood tests (which showed I had a hemoglobin level that meant I shouldn' t be conscious, further supporting his theory), and today had a pill capsule, which indeed shows that I have crohns. So I have been walking round with crohns for who knows how long, thinking that I just had a poorly functioning j-pouch that I would have to just live with since nothing seemed to be helping it.

I have no idea if this is rare, but thought it was worth sharing in case there is anyone else out there in a similar situation, having a miserable time with their pouch, who should be checking for crohns.

Love to all,

Daniel

 

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Hi Jeane and Jan,

So Jeane, it was precisely because the pouchosopy showed an apparently healthy pouch, yet I was still having such miserable time, that the GI was suspicious and ordered this pill camera test, which showed the inflammation in the small bowel. He did warn me that we might come up empty-handed, but thought it was worth testing the theory, and turned out he was right. Obviously I'm a total layman medically with no qualifications to to give anyone medical advice, and this was just what happened to me, but if you're also having poor pouch function but totally clear pouchoscopies, might be worth at least speaking to your GI about having a look higher up. I had just resigned myself to the thought that this was what life would be like with a j-pouch. But now turns out there was a totally different explanation for the constant BMs.

And Jan - yes, I was in the bizarre position of almost hoping I had crohns! This way, we can start treatment (likely remicade or humira he told me), which, if successful, will hopefully give me my life back (or at least a life outside the bathroom). Here's hoping.

 

 

Yes! I do not have a Crohn's diagnosis, but did have persistent pouchitis that was not coming under control with antibiotics, plus I was on various biologics (Enbrel, Humira, Simponi, Cimzia) for IBD related arthritis. I am now on Remicade and Imuran. It's only been a couple of months, but my pouch function is improved and I am off antibiotics.

Perhaps it is Crohn's. Doesn't matter to me what they call it. I am happy there is treatment.

Jan  

Hi Dan, 

i find it so odd that with all the issues I have had w my pouch and chronic pouchitis, no one has ever suggested a small vowel series. As a matter of fact, Dr Remzi st CKevekand  suggested I may have crohns but instead of suggesting  sending ne to a GI for alternate treatment ( and I am under  the care of a very joouch qualified GI here at home) he suggested perm ostomy or complete pouch re do. Not a good suggestion to re do if crohns is a consideration. Sometimes I wonder if all the upper left side pain and cramping I'm getting with the numerous bathroom trips is always generating from my pouch. I too am in and off antibiotics often.  I am going to suggest pill scope to my GI at next visit.  I plan my days around the bathroom at times and it is limiting. 

J pouch 2011 pouchitis since did all the antibiotics vsl 3 kangen water every diet went to NYU LANGONE 3 weeks ago for second opinion before committing to 6 mp or any other chemo based drug and was told about a study that was just starting in the US the drug is ALICAFORSEN it had a 58% success rate in studies in Europe the study is double blind and I started the med  or placebo yesterday. The study is posted on the crohn's and colitis website . It is Worth a shot. The doctor at NYU LANGONE is DR DAVID HUDESMAN his nurses name is Amy the number is 212-263-3095 im sure they can give you any info you need regarding the study. The study last for 24 weeks 6 weeks of med or placebo 18 weeks of follow up.If you are on the placebo they will give you the drug after 10 weeks.  The study is for 170 subjects in the US NYU will get between 10 and 15.

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