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So I had my annual pouchoscopy yesterday and got good news and bad news.  The good news is, my J Pouch looks great, and the Remicade treatment I have had has worked well on inflammation inside the J Pouch.  The bad news is the stricture I have at the J Pouch inlet, which we have been watching for almost 15 years, first with a CT Enterography in 2008, and then with an MRI Enterography in 2012, has gotten worse.  My GI Doctor had told me a few years ago if he ever could not pass an adult endoscope through the inlet, the strictured inlet would have to be dilated.  Last year, he got it through; this year, he could not.  He said that I would need to get an endoscopic balloon dilation (EBD), and that I would need to get it done pretty soon, as I am in danger of intestinal blockage due to fibrosis (scarring) that has developed in the inlet.  It's been almost 30 years since I went through the blockage rodeo, NG tubes, etc., and it's a rodeo I did not enjoy and have ample desire not to revisit.

If you are wondering why my J Pouch looks great but the inflammation in the inlet and the area above it are not responding as well to the Remicade, it's because, as my doctors have explained, the inflammation at the J Pouch inlet is coming from backsplash stool occurring because of a lack of  a backsplash valve such as what existed with the colon that preceded it.  This is a mechanical deficiency in the construction of the J Pouch that neither I, nor anyone else, can do anything about.  All we can do is treat  the stricture that has resulted, which seems to be a very common occurrence with persons having very long term Pouches (mine is almost 30 years old).

My GI doc then told me the chief risks with the EBD, in which a balloon is inflated to stretch out and open the stricture, are (1) perforation of the bowel, and (2) insufficient permanency of the result of the procedure, necessitating repeated dilations.

I then asked my GI, who wanted to do the EBD himself, exactly how many EBDs he has done.  Before my scope yesterday he told me (on my question) that he had done 40,000 colonscopies and pouchoscopies- 1,000 per year- over the course of his long and distinguished career.  However, when asked, he admitted he had done only 5 EBDs.  He said he would do it "gently", and put me out with propofol rather than conscious sedation as he wanted to be totally focused for the procedure and not worrying about sedation.  When I asked him if there was someone more experienced at Yale to do an EBD, he told me there was, and he would give me that referral with nary a bruise to his ego, because he wants what is best for me.

I have decided I will get the referral to the guy at Yale who does EBDs, but here are my questions for all of you:

1. What is the real chance of a perforation? How long they will keep me around to see if a perforation has occurred?  I asked my GI doc how I would know I am perforated, and he said, "you will start to feel really sick."  I hope there is something more assuring than that as a test for perforations, as I do not want to end up with sepsis before I know it's hit me.

2. Has anyone developed a blockage from a stricture at the J Pouch inlet?  I am imagining this is not pretty.  If the NG tube has to be inserted in such a situation, it would be sucking up, through your throat and nose, stool about to enter your J Pouch. Apart from being disgusting/revolting to even think about, is it even doable, or would they just cut me surgically and open the damn thing up?

3.  How long is the usual EBD good for before the next one?  He told me repeat EBDs are probable.  Am I looking at an annual EBD? Quarterly? Monthly?  Or could I be one and done for a few years, at least?

I have kind of been waiting for the other shoe to drop with this stricture for a long time now.  It finally has. My main concern at this point is not getting a blockage if I do not do the procedure, and not getting perforated if I do the procedure.

Thoughts?

Last edited by CTBarrister
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CT, as you probably already suspect, the answers to your questions are highly dependent on your specific situation. In regard to how you will know you are perforated, the answer your doctor gave is the correct one. Unless there was an obvious “oopsie” during the procedure, it might be something to small to see. Like my anastomotic leak that lead to a pelvic abscess, or my random “suddenly I am septic for no particular reason” case, the proof was the high fever and feeling extremely ill.

Here is a link to an article by Dr. Bo Shen that should give you better clarity about ballon dilation and the risks associated with it. Open surgery for stricturoplasty has a higher risk profile, so this is the low interventional option. Another option if the dilation is not successful or you have to repeat too often is an endoscopic stricturotomy. Your GI has been as conservative as he can be to this point.

http://website60s.com/upload/f...n-colon-and-rect.pdf

Jan

Thanks for your replies, and Jan, for the link to the Shen article.

Scott, although my GI doctor said he would only perform an EBD by using propofol rather than conscious sedation because he "wants to be focused on what he is doing and not on monitoring sedation", I have elected to have him refer me to the Yale specialist to do the EBD, for 2 very good and totally unrelated reasons: (1) my GI doctor frankly admitted to me that he has done only 5 EBD procedures and that the Yale specialist is more experienced in doing them; (2) my GI doctor is out for the entire month of August and could not schedule the procedure until September, and I don't wanna wait til then, with the blockage threat looming over my head like a dark cloud that is ready to throw a lightning bolt down at any moment.

So the conscious sedation vs. propofol debate will be preserved for another day when I meet the Yale specialist, and I will tell him my feelings on the subject as well as that everything I read online suggests that the EBD procedure is typically done with conscious sedation.  I did not find my GI's "I need to focus" explanation satisfactory, but I did not argue with him about it, except to say that if the patient is effectively sedated, I would not not think there would be any issues.  I should note that my scopes, and the EBD if my GI did it, are done at a small endoscopy center which is owned by my GI doctor.  If I have the EBD done at Yale New Haven Hospital, I suspect there will be adequate staff or an anesthesiologist on hand that will monitor sedation and allow the EBD specialist to focus on the task at hand, such that no legitimate "focus" issues exist.  In any event, I will post back here after they do the EBD procedure to report on that issue and the outcome of it.

Jan, regarding perforations, perhaps I am naively over-confident in modern technology, but I had hoped that there was some advance that removes the patient from being left to his or her own devices on such a complication and "we'll see you in the ER when your fever spikes to 105 and you start vomiting and feeling the most intense nausea you have ever experienced."  One reason for that overconfidence is that before my scope on Tuesday, my GI was telling me about this fascinating new AI technology he purchased foe his endoscopy center.  The computer program is some AI which somehow, during an endoscopy, identifies and either circles or otherwise designates any areas of concern that are visualized on the digital monitors.  This is an interesting technology, to me, with many possible applications.  I can recall being in recovery rooms and overhearing doctors tell patients that they may have missed this or that, because the patient was not fully cleaned out.  It occurred to me that, perhaps, such technology could also be applied to perforations and the AI would alert the doctor to a perforation that occurred, even during the procedure.  My understanding is the AI can visualize stuff that doctors cannot see, like an extra set of super-hero eyes with microscopic visual capabilities.  This would be a whole lot more ideal than "we will see you in the ER if a perforation issue develops in the next few days and you start manifesting symptoms of sepsis."

Last edited by CTBarrister

Hi CT. I had dilation on the inlet when I had my j-pouch. The problem with doing dilation on biologics is that even if you dilate the stricture, the biologic would ultimately close the stricture back to what it was. I had the stricture dilated twice, but each time the stricture closed to about a pinhole. I was on stelara at the time. Also, dilation made the stricture structurally unstable in which it made a U shape. Ultimately, nothing could pass through the U-shaped stricture and I had my j-pouch removed and am now with a Crohn’s diagnosis because of the stricture.

Good luck balloon dilation if you do decide on doing it.

-Rina

Hi CT. The doctor didn’t explain why the stricture closes after dilation when on a biologic. It was something that was known among the doctors. They must have had some case studies most likely with Crohn’s patients and the colon. The small bowel is not different I guess. The doctors here in Japan did everything they could to save my jpouch, but ultimately it was the stricture that did me in.

-Rina

@CTBarrister posted:

FYI, here is the endoscopist at Yale to whom I was referred:

https://medicine.yale.edu/prof...iruvengadam_muniraj/

They apparently call him "Thiru." If anyone knows him or treated with him feel free to send me a PM.

Had a Zoom visit with this advanced endoscopist today. It was actually the first Zoom visit I had with a doctor through Yale's My Chart. I had to electronically sign the usual paperwork, then went right into the Zoom where I met with the assistant who went through my med list, adding and subtracting as needed and also confirming my height and weight. Then I was put in the virtual waiting room to await the doctor. I was at my computer at work, so this enabled me to do other tasks while I waited as opposed to twiddling my thumbs.

"Dr. Thiru" advised me frankly that it will take repeated dilations to open up the stricture, and one reason why is that he would like to do it gently and gradually stretch and tear the fibrosis (scar tissue) so he doesn't cause a perforation of the tissue and then a sepsis situation that I only realize when my fever spikes to 105 degrees and I start vomiting. He also told me that a stricture at the J Pouch inlet, such as what I have, is better than the situation of stricturing at the J Pouch outlet. He said what he sees with strictures at the outlet is stool then backsplashing into the J pouch making the inside of the J Pouch a mess of inflammation. I don't have that, so that is one advantage that gives me a fighting chance for a good result. He said he would be able to outline a more specific plan once he looks up into the Pouch at the inlet, but preliminarily he thinks I will need a few dilations at least.

Scott- he also said he would do the EBD with conscious sedation. I asked him if he normally has the patient propofoled or consciously sedated. He said he normally uses propofol. I then laid out all my various objections to the use of propofol, but added that if it was a dealbreaker if I didn't agree to propofol, then I would do it. He said it was not a dealbreaker, and he will do the EBD with conscious sedation. This was a different position than my GI, who indicated it was a dealbreaker if I didn't agree to propofol because he needed to focus on the procedure. In any event I was pleased that he listened to and heard my objections.

We will be scheduling the procedure very soon and I will report back when it is scheduled and completed.

Last edited by CTBarrister

Thanks Portia....the EBD procedure is now scheduled on August 9 at Yale, and I will report back thereafter.

FYI for anyone living in CT and treating at Yale: they are still requiring that anyone having a procedure at Yale obtain a negative Covid test (even if you are fully vaccinated) within 72 hours of the procedure, or no procedure for you.  Also, the person accompanying you must be masked. So, I also have to schedule a Covid test.

Last edited by CTBarrister
@CTB23 posted:

I have my pouchoscopy scheduled for August 13 and was told that I needed a negative Covid test.  I assume I can get it at my local test site, since I live about 45 mins. away from Yale.  Of course, I could always have it at Yale, and then go for a famous New Haven pizza!

CTB23,

The message I got from Yale on this is that if you schedule a Covid test through them, it must scheduled not sooner than 10 days before the pouchscopy and must be obtained 3 days or less before. Therefore if you schedule with them, it cannot be done before August 3. And you will need to schedule on August 10, 11 or 12 for an August 13 scope.

I live 5 minutes from downtown New Haven. Regarding your comment on going to New Haven to get some of the world famous New Haven pizza, I have eaten at both Sally's and Pepe's recently. Below is a pic I took of a sausage and onion pizza from Sally's. It was delicious. Sally's had a great outdoor set up with lots of tables and lots of space between tables. Only waited 45 minutes later on a Saturday afternoon. Worth it! Note the distinctive charring of the crust, a feature that distinguishes New Haven style pizza: FE237F4E-49A5-4369-9722-78B42AB5D28B

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