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(Sorry for the long post)
Looking for some input on dilation including self dilation. My J-Pouch procedure was in June 2020 after nearly 10 years with UC. Four months after the procedure I was dilated under sedation and also treated for pouchitis. Five months later I was treated for another bout of pouchitis and again dilated under sedation. I was not aware that this dilation was to occur...apparently the GI saw the need for dilation during the pouchoscopy that was performed?

About a month ago, about six months after the last dilation, I noticed it was taking longer in the bathroom. I actually had a day where I could tell I was backed up...some bloating etc. I cut back on the Loperamide, watched my diet, and made sure I was taking in enough liquids. I was able clear out over the next 24 hours. But it still required a lot of patience in the bathroom and changes to my normal routine...which had become my "new normal" and working well.

Contacting the surgeon's office I was told to start with my GI. The GI asked me to provide a stool sample which I did two weeks ago. Test results were posted daily for the next week and they were all no antibiotics!

The GI referred me back to the surgeon's office. The surgeons involved in my procedure and follow-up had moved to new locations (my procedure was at a university hospital) so the surgeon would be new to me.

This new surgeon performed a manual digital exam and then seemed to dismiss the need for dilation! I'm now scheduled for a scoping next week without talk of dilation! Not sure what he is looking for or might expect to find? Yet, interestingly, after his "probing" that evening and the next day I could feel a slight improvement in the bathroom!!

So now I want to think long-term...I do not want to be dependent on a medical procedure a few times a year or having to convince a doctor I need to be dilated!

Is self-dilation safe and does it work? Are there J-Pouch doctors in the Southern California area who will provide instructions on self-dilation? I've read some older posts on self-dilation but want to know what the thinking is now. Any input is welcome.

Thanks for reading...DH

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Steve, if that's the area I am sure a self dilation can be done, but the concern is what is causing the stricture and the need to dilate in the first place, which this thread has kind of skipped over. Dilation is not correcting the cause of the stricture. Strictures are usually caused by inflammation, and if Big DH has inflammation in the rectal cuff, that is a great concern and you WANT it scoped and biopsied every year, because it is the area where a cancer will start. Rectal cuff is colonic tissue. It is not ileal tissue. In the rare cases of pouch cancers that's where they start. So treatment is needed and you want scopes and biopsies there done on a regular basis if the cuff is inflamed (no less than annually). My rectal cuff isn't inflamed but because of inflammation at my inlet, the cuff gets biopsied annually as well as the inlet.

My treatment regimen changed after my stricture. Entocort was added to Remicade. If a stricture has developed one year after J Pouch surgery I think something needs to change treatment wise.

Last edited by CTBarrister

To CTBarrister,

Narrowing of the opening between the J-Pouch and rectum (the term for that area) is COMMON in many patients. I have been dilated 3 times since my procedure last year...why? Because it began to narrow! Nothing that needed to be biopsied, nothing that needed to be surgically removed, nothing that needed further testing! It's a surgically created opening that can narrow and often does!

Please, with all due respect, reply to this post only if you have something constructive to contribute on the subject of self-dilation and/or know of J-Pouch doctors in the Southern California area who instruct patients in self-dilation...thank you!

Hello I had my j-pouch done in 1995. Afret years of other problems I was told I would have self to self dialate or have to go into the hospital to have it done. I do it maybe 4 times a year.

The tools that you us range in diameter from 10mm to 16mm. I was told by my GI that 15mm is the "target" to get in. I start small with some KY jelly lubricant and work up until I get the 15mm one in.

I put a towels on the bed relax and it really isn't too bad. You are the one doing it which seems to help me.

Good luck If you got this far this is nothing!


Bob, thanks for your reply! Interestingly my first self-dilation appointment is this morning at 8am! Questions for you: did your doctor provide all the dilators 10mm--16mm? I was under the impression that 15mm was the goal as you said, but have read about others where 18mm dilators have been used? I'm hoping to get to a place where dilation is infrequent similar to your four times a year...that would be outstanding.

Last is traveling with the J-Pouch wife wants to travel and I'm very apprehensive due to the frequency of bowel activity.

So here's the dilation occurred!!! The dilation training was to be done by a nurse...ok. But...she would only do the dilation IF she could reach the anastomoses with her finger! So the dilation, as I strongly pointed out, was "dependent upon the length of her finger?" And she could not reach the anastomoses! I pointed out that two doctors, including a female doctor, could and did reach the anastomoses with their finger, one of whom, the female doctor, performed a digital dilation in this clinic! So now I'm being scheduled for dilation under anesthesia...all because a nurse's finger was too short! I'm tempted to buy dilators off Amazon and follow instructions I've read off the Internet.

FYI...the finger thing was to determine the dilator size to begin with... information that the doctor should have provided since he had been there twice in the last two weeks!

I have to admit I’m as confused as CTBarrister.  Not trying to argue with you, just trying to understand…. is the constricted point the connection of your pouch to anus, or your pouch to small intestine?  Or somewhere else?  I’m just really curious about the self-dilation.  I have strictures at the connection between pouch and small intestine, that I have dilated twice a year by balloon attached to a scope.  

Interesting.  I'll have to ask my GI about self dilation options.  I get the scope currently for stretching the anastomosis, but also to check for the state of my chronic inflammation in that area, so I'm not sure I'd do self-dilation anyway.   BUT - I'm curious about it as an option for blockages, as that's the point that I have blockages due to stricture at the anastamosis where the pouch connects to the rest of the small intestine.


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