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

I can’t add anything to Jan’s post, but it sounds pretty clear that you need the dilation. They usually go fine, of course, and I’m hoping yours is textbook perfect with a durable result. I hope the worst part is how grumpy propofol makes you!

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."

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.

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

Rina, do you know why the biologics would close a stricture back to what it was? My understanding is that biologics are given to reduce the autoimmune response that creates inflammation.

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.

Good luck with the dilation CT. I hope it works for you.

Good luck, CT!  Hope all goes well for you.

@CTBarrister, wishing you all the very best on the procedure. Please let us know how you’re doing when you can. Sending lots of good thoughts your way.

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.

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 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:

My brother lives in New Haven.  He prefers Sally’s to Pepe’s, especially their tomato pie.  

Well I passed my pre-procedure Covid test at Yale on Friday and the endoscopic balloon dilation went forward today.I was mildly sedated, but there was no pain or discomfort. Was like any pouch endoscopy I ever had before.  Procedure will have to be repeated in 4-6 weeks, and then probably again, and maybe again. They dilate a little at a time with the idea of not ripping a gaping hole in the intestinal wall. I had a very small amount of blood released from my rectum after the procedure but none in my first bowel movement around 5 hours later (I ate dinner around 1.5 hours post procedure).

Hopefully after 3 dilations that sucker will be opened up and stay opened.

BTW, I got some further info on what to expect with a possible, but unlikely perforation complication from the procedure.  They said symptoms would occur within hours: first extreme pain, followed by a fever.  Fortunately, I am 4 hours post procedure now with no symptoms.  I have actually eaten a meatball grinder and i feel pretty good. I am at home resting and watching TV.  Back to work tomorrow.

It occurred to me that there is one main physical difference between the routine endoscopy on the pouch and the EBD or endoscopic balloon dilation.  In the routine endoscopy on the pouch, the J pouch itself is used as a balloon and inflated with air, resulting in flatulence- explosive farting and gas after the procedure.  In the EBD, an actual balloon inflated with gas is used to stretch a stricture in the pouch, but the gas within the balloon does not escape into the pouch and is instead withdrawn into a machine.  Hence, there is no flatulence after the EBD, no gas or farting, as after the routine pouch scope.

I had my first BM since the EBD just a little while ago and I hope this is a sign that the J pouch inlet walls held firm during the procedure, did not perforate, and provided a good seal on the contents on the pouch.  I feel pretty good.

Just wondering how many dilations it is going to take.  3? 4? 5? 6?  I wonder what the record number of dilations is on a stricture in the Guinness Book of World Records? Not that I want to be in The Guinness Book of World Records for most dilated stricture, much like this fellow Connecticut resident who seems to have taken great pride in her accomplishment: the world record biggest mouth gape:

https://patch.com/connecticut/...uinness-world-record

Glad to hear that you’re doing well following this procedure! Thanks also for sharing your experience. It helps demystify it for the rest of us. So happy you’re feeling great.

The extensive photographs taken during my endoscopic balloon dilation on August 9 were sent to my GI doctor. He called me today and said they showed a lot of "Crohn's like" ulcerations both at the inlet and in the lower neoterminal ileum. He is going to do a Remicade test on me because he is now questioning whether there is a non therapeutic level of Remicade in my blood. If that were the case, I would think the J Pouch would be a mess as well, but it's not. I am seeing him on August 25 to go over all of this in greater detail.

That’s a bummer, CT. I hope a more successful path can be worked out.

Seconding what Scott has said.

I appreciate your well wishes.  I remain confident that I will get through this with treatment adjustments as well as the dilations.  My next EBD is already scheduled October 6.

Wishing you all the best with your latest challenges.  It seems we have had a similar path. Older pouch treated for years with antibiotics and progressed to biologics.  Dr Shen performed my first dilation on an emergency basis in Sept 2017.  I have had two strictures treated - inlet stricture 3 cm long and one at the anastomosis area of 1cm.  He performed a few more dilations before he left Cleveland Clinic.  Dr. Philpott with Cleveland Clinic has performed a couple more since then and I am scheduled to see her again in November for a pouch exam - balloon dilation if needed.  

I resumed treatment with Stelara in February 2021 after being off it for one year.  I am hopeful Stelara is successful with reducing inflammation, ulcerations and strictures.  I was diagnosed with Crohns probably about 10 years ago.  Pouch surgery was in 1992.  

My experience after the dilations has been good except for a little more discomfort for a few days than from the  typical pouch exam.

Bobster, we do indeed seem to have similar histories going back to both having our pouch surgeries in 1992, both receiving Crohn's diagnoses within the last 10 years, as well as treatment with antibiotics eventually progressing to biologics, with both of us developing inlet strictures in the past 5 years.  I think there are a number of older pouches where this becomes an issue, especially at the J Pouch inlet, and backsplashing stool over the years is playing some role in it.  Others besides us have reported inlet strictures after 20-25 years with the pouch. Your post is encouraging insofar as you have had a number of dilations in the past 4 years and you are still Pouching.  I hope to as well.  When I meet with Dr. Brand next week we will be discussing the efficacy of my Remicade treatment, a Remicade level test and also the dilation photos.

Good luck with your pouch exam in November and please keep us all posted on your progress.  Feel free to post here as we seem to be on parallel tracks with our pouches.

I met with my gastroenterologist today and we went over the EBD photographs which can be recapped as follows:

(1) the J Pouch looks really good;

(2) the J pouch inlet is inflamed with ulcerations and strictured;

(3) there is additional inflammation well above the J pouch inlet in the neoterminal ileum.

He is ordering 2 things right now: (1) Remicade level blood test; (2) he is putting me on Entocort to see if that will bring down the inflammation at the inlet and in the ileum.

He can't say whether or not the inflammation, which is all north of the J pouch, is due to backsplash stool. Some of the inflammation seems to be well above the inlet. So while backsplash stool is one possibility, the "morphing of a new inflammatory bowel disease process", which was first observed 15 years after the J pouch was surgically created, may also be what's going on. He declined to place a label on it (such as Crohn's), instead calling it "Crohn's like", because he understands that such labels are totally irrelevant to treatment determinations and also possibly incorrect. He is simply dealing with it as bowel inflammation that needs to be treated.

I am going to see him again 2 weeks after the next EBD which is set for October 6.

@CTBarrister posted:

I met with my gastroenterologist today and we went over the EBD photographs which can be recapped as follows:

(1) the J Pouch looks really good;

(2) the J pouch inlet is inflamed with ulcerations and strictured;

(3) there is additional inflammation well above the J pouch inlet in the neoterminal ileum.

He is ordering 2 things right now: (1) Remicade level blood test; (2) he is putting me on Entocort to see if that will bring down the inflammation at the inlet and in the ileum.

He can't say whether or not the inflammation, which is all north of the J pouch, is due to backsplash stool. Some of the inflammation seems to be well above the inlet. So while backsplash stool is one possibility, the "morphing of a new inflammatory bowel disease process", which was first observed 15 years after the J pouch was surgically created, may also be what's going on. He declined to place a label on it (such as Crohn's), instead calling it "Crohn's like", because he understands that such labels are totally irrelevant to treatment determinations and also possibly incorrect. He is simply dealing with it as bowel inflammation that needs to be treated.

I am going to see him again 2 weeks after the next EBD which is set for October 6.

The past few years I have had 2 small ulcers at the top of the pouch(inlet), Shen saw them right before he left Cleveland , and put me on Tindamax. 2 years later I had my scope with my new surgeon Dr Dietz and he noticed them still there. He stated sometimes the pouch just has some small ulcers, and that he did not think it had a Crohns appearance at all. He didn't even put me on any meds since I wasn't having any symptoms.

Can I ask when your pouch was created? My dr says these problems are due to the staplers they used then. It created something called rabbit ears in mine and stricture at the same place as yours.

Kate- it's in my signature.  J Pouch created in 1992.  I had dissolving staples, to my knowledge of what my surgeon told me.  I am not buying that theory.  I have been told by 3 different GIs that its due to backsplash stool and I think they are likely right.  The inflammation is also in the neoterminal ileum where the stool is backsplashing- and I have NOTHING at the outlet- which was also stapled BTW.  It's backsplash stool and wear and tear on the inlet over 30 years.  Should I or anyone else be surprised, no.  Of course, that is not any more fixable than the staplers issue.  Any J Pouch is gonna backsplash stool as long as it is in your body, because they do not have backsplash valves like our colons did.  These are just anatomical facts.  And the anatomical facts combine with wear and tear.  The same principles require car tires to be changed every 40,000 miles or so.

Just like some tires wear better than others, some 30 year J Pouchers don't have strictures, and they backsplash and had the same staplers.  Their pouches perhaps adapted better to dealing with the bad bacteria that pools above the J Pouch inlet.

Sorry yes I see that now. My dr told me that a lot of us have similar issues due to the way the pouches were fashioned back then. I have a lot of what you have as well and it’s frustrating.

I recently had a new test a defecography which had to be read only by him. He saw the problem which appears to be multifaceted but mostly mechanical. Words like floppy pouch, rabbit ears and others sound strange I know but I’m learning how best to manage

I am curious to know if you have to do a bowel prep before each procedure for stricture. May be a dumb question, but ugh! I have a sizeable stricture at the inlet according to doc. All kinds of issues apart from that that don't add up. Bleeding from who knows where? Pain, increased diarrhea, sensitivity to many foods not bland. Live on lots of rice. They tell me I don't have pouchitis, but I'm having all this done at the VA (Third world, anyone?) . Yet they are putting me on Metronidazole. Had pouch since 1997. This is new. Crohn's. Wonder if bleeding is coming from higher up... It waxes and wanes and can be significant to mild. I see the GI dept at the end of this month. A different VA almost killed me after the original surgery and developed sepsis and near death. Had to have several more surgeries over next couple years.

I finally saw a hematologist at Knight Cancer Institute at Oregon State Health Uni. What a relief. She tells me I don't absorb most nutrition and with short bowel, including missing gallbladder, need to be getting semi reg iron infusions. She is going to test out all my nutrition levels and work with me. No one and I mean no other doctor has ever addressed this with me before either VA or civilian. And I bring anything up like this, they just say everything looks fine and basically don't know what I'm talking about. Maybe this is why I feel like I'm walking into a big hole all the time with exhaustion and regular mild anemia.

@Not your average gal! posted:

I am curious to know if you have to do a bowel prep before each procedure for stricture.

Yes- same as the prep you do for a pouchoscopy. They will take digital photos of what is going on. My GI actually told me the endoscopist got some better pictures than he did because he went further up the ileum. I suspect the endoscopist had better equipment as well because it was done at Yale.

I hope you're doing well. I'm all too familiar with EBD. I've had dilation done every month for the past 6 months. It's getting better,  it's slowed down,  I have a lot of scar tissue so they slowly dilated it. I believe my scar tissue has hardened to the point where it doesn't try to close up. So it does get better,  after some time.  But it's exhausting to have to go in every month and have to do that awful prep.

Hi Sadie,

Thanks for your post. They are going slow with me too. My next dilation is October 27. I don't find the prep so bad. I power chug a chilled 10 ounce bottle of Mag Citrate 8 pm the night before the dilation, and then do an enema 2 hours before leaving for the exam, which will be 11 am because Yale wants me there around 1 pm. The Mag Citrate is probably the worst part but it's over with pretty quickly. Because I do it at Yale (actually in the Smilow Cancer Center where, ironically, I was irradiated with radioactive liquid iodine back in 2015 when I treated thyroid cancer) the waiting time can be lengthy. Normally I sit and then lay around for a couple hours before they get to me. They sedate me for it. Hopefully it will work out and they keep that strictured J Pouch inlet as open for safe passage as the Panama Canal, lol.

Yale makes me Covid test for each procedure as well, usually 2 days before.

Funny that the examining doctor said it look like I did have mild pouchitis in there. But then the GI department told me I didn't yet prescribed metronidazole.

Thank you for your helpful information. For me, the prep is the worst. Anyways what I have learned here is very helpful and I'm going to take some of that information you guys have given me to the doctor at VA. I did not know, for one, that strictures can come with length of time of pouch.

NYAG,

I think my J Pouch inlet stricture is definitely a wear and tear situation over 30 years, both because of the backsplash stool and because an MRI Enterography back in 2012 documented inflammation and narrowing at the inlet that we have been watching ever since. In 2017 or so my GI warned me if it ever closed up to the point of not getting a scope through the inlet I would have to be dilated, and then in 2021 he finally couldn't get a scope through. So this was not an overnight development. We first observed and documented narrowing of the inlet in 2012 and in the 9 years since it slowly closed up. So it is my belief that it is at least in my case a wear and tear and mechanical issue from backsplash stool.

Is this what awaits everyone with a J Pouch after 30 years of hard driving on the J Pouch? Probably not. But we have seen on this board a number of long term pouches strictured at the inlet after many years. In many or most of those cases the inflammation is probably coming from back splashing and pooling stool at or above the inlet. Nothing can be done about it except to dilate and hope for a result like Sadie. You can't stop the back splashing because there is no backsplash valve on J pouches like there is in the colon.

@Not your average gal! I feel like the Doctors are quick to prescribe antibiotics and send you on your way.  I've had that happen to me one too many times.  It never solved the issue.  I've only had my surgery this year and already getting dilation done so I don't think it has anything to do with having a pouch for a certain amount of time.  Anyway good luck and don't give up.

@CTBarrister it will happen. Just keep up with the dilation and the results will be good.  You got this!

Second EBD today.  My endoscopist told me and his report indicates that the first dilation opened the stricture up to 11 millimeters and today's dilation opened it up to 15 millimeters,.  However, he again observed "extensive ulcerations" at the stricture, so the Entocort is not apparently helping.

I had my 3rd Endoscopic balloon dilation today.  The first was to 11 mm, the second was to 15 mm and today we achieved dilation to 18 mm  with no re-closure of the stricture.  However, there is no sign that the inflammation at the strictured J Pouch inlet has improved at all.  I will be meeting with my GI doc on January 20 to discuss a possible treatment change from Remicade to Entyvio.  I will also be weaning off the Entocort since it has not done anything, except cause me to gain weight.