Hi All!

Okay, I'm 69 and have had my J-pouch almost 16 years. I have been pretty content with my gastrointestinal life. I've been taking multiple anti-diarrheals (tincture of opium, Lomotil, Immodium) to slow things down chronically since surgery -- have been having no serious problems - a little bit of leakage/incontinence, especially at night while sleeping. I wear "depends" so "accidents" do not wind up being major clean-up problems -- just a good wipe-down with a wet-wipe, a new diaper and I'm good to go.

Last year, at my regular every-other-year checkup, my colo-rectal surgeon indicated that my anal opening was very small ...I could corroborate as the pain accompanying insertion of his finger and then the scope (flex sigmoidoscope) was fairly intense. He said he wanted to see me after a year instead of the usual 2 years.  

Okay, I saw him yesterday, 11 months after that last exam. He couldn't get his finger in ...I mean, he could have, but he said I would not have enjoyed that at all.  He further advised that he was unable to insert the scope ...again, without causing me lots of pain.

I have been noticing that I had to strain/push more and more on the toilet. I'm not very good at self-analysis/diagnosis ...this could have been sneaking up on me for the last four years without me being aware of changes. In order to get my pouch satisfyingly empty I have been pushing ..so hard that I once popped blood vessels in my eye. I also worry about popping an aneurysm in my brain. My wife has been giving me lessons in doing the correct kind of pushing  ;-)

He told me that it's not unusual for someone to develop a stricture this many years after the creation of a J-pouch. His advice at this point is for him to dilate my anus under general anesthesia, and see how that works. He told me that very often that takes care of the problems for a long time. Though sometimes, people require re-dilation every few months. Some of his patients learn to do self-dilation and are living happily ever after. He did tell me he recently had a patient, who after 30 years with a J-pouch, developed a stricture which lead to complete blockage and resulted in the removal of the J-pouch and creation of a stoma and use of a bag.

I guess I'm simply hoping that the doc will put me under, stretch things out ...I'll go home and have an easier time on the toilet and that the stretching will NOT have increased the frequency/ amount of my leakage/incontinence.

I will welcome any and all discussion, thoughts and suggestions. I only know one other person locally who has gone down this road. But then, after her J-pouch surgery, her UC migrated to being Crohns and our conditions were so divergent that we didn't really have all that much in common. 

Jim in Maine

Original Post

Jim, your doctor has laid things out pretty clearly and completely. Dilation has some risks, and you should understand them before the procedure, but you don’t really have much choice. It might be worth asking if you can reduce the risk by doing it more gradually over multiple, planned procedures, but that does entail general anesthesia multiple times.

As far as your leakage goes, have you ever had a course of Cipro or Flagyl and noticed any benefit? It could just be pouchitis. I’d choose antibiotics over Depends, but that’s just my preference.

Hey Scott -- thank you for your response.

Your "gradual procedures" suggestion is interesting. Unfortunately, besides the risks associated with general anesthesias, I'm pretty sure my Medicare supplemental insurance (Anthem) would balk once they realized what was going on. And, where I am in Maine is a minimum 3 hour drive from the Lahey Clinic in MA. So, just going down there for a 5-minute digital exam is a full day expedition.

The doc did mention that people with strictures often have to repeat the dilation on a somewhat regular basis. He said he had a number of patients who dilate themselves and that I could find the necessary dilators (similar to those he uses in the OR) on Amazon.

Or, if dilation under general anesthesia becomes a somewhat regular thing, I'll probably consider seeing a colo-rectal surgeon up here in Maine. My attitude to this point has been that no one messes with my pouch/GI system except my surgeon at Lahey who re-plumbed me. But, my surgeon is now semi-retired so I'm seeing a new, younger doc in the department anyway. And, my brother used the Portland, Maine "colo-rectal surgical system" a year ago for rectal cancer and all indications were that the situation up here is much improved over what it was 17 years ago when UC was ravaging my colon.

Re your comments on leakage and using an antibiotic: I have been taking Flagyl chronically/constantly since maybe the first year after my pouch surgery. My understanding at the time it was first prescribed was that it was to control "overactive flora and fauna" in my gut that was giving me "gurgles and bubbles" ...no memory of inflammation or pouchitis having been mentioned. I know that if I discontinue taking the Flagyl that things do get upset and I happily re-start taking it.

I heard from the surgeon's team yesterday and the dilation is now scheduled for 7/31/2019.

Thanks again for your comments!!

Jim in Maine

That all makes sense, Jim. I don’t know how I’d feel about waiting almost two months, though. Maybe you can get on a cancellation waiting list, or call periodically. If it closes completely it’s an emergency.

If the leakage has gradually worsened over time, or even if you’d like to try an alternative to Depends, adding another antibiotic can make a big difference. When Cipro alone stopped doing enough (after about 7 years) adding Flagyl got me back to just about perfect control. I’ve reduced the doses of both to the minimum necessary for results.

Good luck!

Hello again - I'll have to discuss an antibiotic "plan" with the surgeon. I had chosen Flagyl all those many years ago because under the bad insurance I had in those days I'd learned that CIPRO was VERY expensive (it was much in the news as the drug of choice for counteracting terrorist Anthrax attacks and was being distributed to all govt employees). Luckily I never had any of the usual Flaygly side-effects (I can have a beer or glass of wine without trouble   so never felt a need to make a change. 

The tightening of the stricture has been happening very slowly so I'm pretty confident about making it to the end of July without emergency. But, your comment does reinforce that I should mentally monitor the evacuation situation -- 

Thanks again!

Hi Jim

In 2012 I developed a stricture 7 years after surgery.

over the next 6 years I had +10 dilations under a general anaesthetic but after some initial relief the stricture would narrow down.

for the past year I have been self dilating at home once a week and it has had the best results by far with good pouch evacuation!

hopefully your dilation is a success but rest assured there are other options should it not be.

good luck and all the best

Last edited by Cliffmegacolon

Hi Cliff (BTW: I shared your screen name with my wife - we had a good chuckle and discussed whether there might be a story accompanying the "Mega Colon" monicker)  

I was very glad to hear from you. The doc was pretty clear about the fact that the dilation he does in July will most likely NOT be a one-time, permanent solution to the problem. I am not at all adverse to the idea of self-dilation. Hey, if I can spend a few minutes a week, make myself more comfortable and extend the interval between 4 hour drives to MA I'm all in favor! 

I would welcome your thoughts and recommendations. Please feel free to PM me if this forum is a bit too public. I had taken my surgeon's suggestion and searched "anal dilator" on Amazon and found a lot of "related products".  Actually, I'd bet that 90% of the hits were for vaginal dilators.

I expect I'll be asking the doc for his suggestions on size (diameter) for "start" and "finish". Amazon displayed a flood of products: hard plastic and silicone to stainless steel. The prices were CRAZY. It was obvious that some sellers figured if a product has a "medical" use they could up the price 1,000-fold. There was one brand, "DDP" making professional looking "sets" of stainless steel "Hegar Sounds" (??) dilators -- the prices of the sets were sensible. I'm betting they were for uterine dilation. 

Oh well, I guess all the pieces will fall into place as more of the unknown becomes known.

Thanks again for taking the time!

Jim in Maine  -- looking forward to my first lobster of the season this afternoon 

Hi Jim

I live in the U.K. so all treatments and dilators are provided free, curtesy of our national health service.

The brand I use are Dilatan Plus size 18 & 20. The size was decided by my surgeon and was based on the diameter of his finger! A quick google search and I see they are retailing at US$50!

 I think maybe if a stricture is treated early enough then dilation under anaesthetic can be successful so this may well work for you. My issue was I struggled on before getting it seen too (a negative of our NHS is follow up falls away quite soon after surgery) so my stricture had stenosed so much, dilation every 3 months wouldn’t keep it open. That’s why regular weekly dilation works for me.

The name cliffmegacolon has its origins in the fact I was diagnosed with a toxic megacolon 2 weeks after the onset of my first bout of UC.

 Oh I live on a small Island called Jersey and lobster is caught in abundance all year round! Slightly different species to your Maine lobster but equally tasty!

good luck 

Last edited by Cliffmegacolon

Hi Jim, I too have an anal stricture that has been dilated under anesthesia. I've had this done three times thus far. Two with a balloon, and the most recent with a dilator. The dilators that are used are just like the Hegar dilators on Amazon. I believe the normal person is at 16 to 18 mm in diameter. Since my last dilation, I've started doing them at home also. It's really not a big deal. I am still doing it daily, until I see my surgeon again at the end of the month. The surgeons only dilate as far as it's safe to go, so you may have to go back more than once. I'm sure I have at least to go once more. You only do self dilation to the size they have gotten to. Oh also, at least some of the night time leakage could be due to the fact that right now you probably aren't emptying your pouch fully. Good luck to you. Let us know how things went.

Hi AIMC --

My surgeon mentioned that he had a wide variety of graduated sizes in the OR so most likely they'd be along the line of the Hagars. The Hagar dilators, with their extended length,  look like they could also be used for cervical dilation.

Did you see the Dilatin brand that Cliff has - https://www.adlermicromed.com/sapimed-dilatan/  -- they're very short ( 70 mm - 2 3/4" apprx ) and that would be more than long enough. There are only 5 sizes. One interesting point is they're filled with a gel that lets you either warm or chill them. Pretty sure I'd just want to start out at body temperature! 

I'm pretty sure a "normal person" has an opening larger than you think. I remember the size of my stool back in the good old days before UC and surgeries. Of course, I never had cause measure myself back then! I'd bet a "normal anus" probably opens to around 25 mm. 

As always, the J-Pouch Group has been comforting. It's nice to know that I'm in good company and will not be treading unknown ground!

Jim in Maine


Hi Jim,the Hegar dilators are long because they are two sided, ex. one instrument is say a 15 and 16. One end is slightly larger. So only half is used. I'm going by what a surgeon told the normal size anus is. I'm going to assume he knews what he was talking about. Cervical dilators are larger than the Hegars also. They wouldn't be used for that. Lol Glad you're enjoying the group. A lot of knowledge here. That's for sure. It is a comfort to know you aren't alone. 


Hi - My dilation/surgery is scheduled for the end of July. It's currently showing in my Lahey medical portal as "1) ANORECTAL SURGICAL EXAM REQUIRING ANESTHESIA, 2) FLEXIBLE SIGMOIDOSCOPY IN OPERATING ROOM". 

I gleaned an interesting bit of information from the initial portal listing which I believe was the exact "coding" verbiage used in the insurance records. The specifically interesting bit was the appearance of the word "Hegar". I'm thinking that's a pretty clear clue as to what type of dilators my doc will be using.

=========== UPDATE: I just found a record of the initial schedule reference for my procedure:

"ANORECTAL SURGICAL EXAM REQUIRING ANESTHESIA, mechanical dilation of anal stricture, Hagar dilators."


I'm additionally scheduled for a post-op visit in mid-September. 

I am going into this whole thing anticipating that on-going dilation will be necessary. Having to drive to Massachusetts every six months or so for a full-anesthesia procedure is not acceptable. I plan to be discussing self-dilation with my surgeon right from the beginning.

Hope everyone's finally enjoying some seasonal weather!

Jim in Maine

Last edited by JimInMaine

Hi Jim, good news that you got your dilation under sedation scheduled. Things will be so much better for you. Isn't it funny all the things you can buy on Amazon. Lol I felt the same way about having to go back and have the dilations. Self dilation is no big deal. Good luck. 


Yes Jim good luck and please report. I am scheduled to do exactly the same in St Mark in September so i am keen to know about you and how it all went. I will also report on mine.

Thank you.


I had the stricture problem about 6 months after my surgery. The surgeon wanted me to have it done under anesthesia as well. Fortunately I was moving out of state immediately so had to find a new surgeon there.

The surgeon was a woman! With very small fingers! She was able to do it in her office. Came back every 3 months for a total of 3 office visits and have not had to go back since. That was 12 years ago.

So, you might want to consider a female? Lol!

Also, if antibiotics kill off gut flora, including the good flora, how does taking them help control the flora? Antibiotics are famous for causing diarrhea and nausea for that specific reason.

If you can handle eating yogurt, I would suggest you try to go off antibiotics and start consuming yogurt a few times a day until you get that under control.

If you have a problem with dairy, yogurt that is fermented for 24 hours should be tolerable, because it uses up all the lactic acid in the milk.




You've got a lot of good advice so I'll be brief.  Also got my pouch at Lahey.  Class of '86 courtesy of Dr. Schoetz.  

I've had about 6 or 7 strictures, including two weeks ago.  To me, they're part of the journey.  Some of us are more prone to them as we inherently narrow over time.  Perhaps having the first one done at the hospital is prudent so your doc can also see if there's pouchitis and/or other contributing factors.  But, longer term,  dilation is definitely a good choice. 

Wish you well and reach out if you want to discuss anything.


Hey Michael -- Sorry, I just discovered your reply this morning. 

Good to hear from another of David Schoetz' patients. Do you go back to Lahey for regular follow-ups?

My plan is to be very pro-active about the self-dilation. I intend on asking Dr Kleiman for his advice about the size of the dilator(s) I should be expecting to use, step-by-step instructions, how often he would think it might be necessary for me to do the procedure, etc., etc.

Like I've said above, they've already scheduled me for a Sept post-op follow-up. I do not expect I'll do any poking around on my own until after that appointment and receiving the go-ahead from the Doc.


any more news for us about your dilatation? I am going to do it the 10th of September and was hoping to get some info about it from you.

Hoping all  has been well with your operation.


Hi All - Patrizia, apologies!

Everything has been much improved since the dilation at the end of July. When I asked the surgeon after the procedure about anal diameters and what I should be shooting for he reported: "The way we used to do the J-pouch surgery in the era when yours was created almost always results in some narrowing of the anus. I don't think I have ever seen a patient with a similar history as you have an anus that could be dilated beyond 18 mm. For you, I only got to 16 mm in the OR. I encountered a fair amount of resistance once I got to 17 mm so I stopped. In general, anything over 10 mm should be sufficient for normal J-pouch function, so if you can maintain anything over 10 mm you should be fine." 

I was a little sore for only a few days after the procedure. The only pain (maybe 5 on a scale to 10) was felt if I did a Kegel ...otherwise it was just a distant ache.

I must admit that I have not been in any hurry to start self-dilation, but I'm hoping to give it a try this weekend. 


Thank you Jim for your reply,

were you able to return to eat without problems? Any burning feelings down there when stool are passing? You told me you had 3 dilatations, I suppose in different days. Glad to hear everything has much improved, hope same for me then, it will be interesting to know if self dilatation is going to work for you as i am a bit afraid of it.

All the best.


Hi Patrizia - Nope, re the "3 dilations", that was Aimee who interjected in the conversation above. I've just had the one at the end of July.

Note: I should probably explain what my surgeon was talking about when he mentioned: "...J-pouch surgery in the era when yours was created ...". According to him, in the early 2000's they were changing over from "hand stitching" the pouch to the anus to stapling. He had asked me in pre-op if I knew whether I had been hand-stitched or stapled. When I looked confused he told me not to worry, he would find out the answer to that question when he read over Dr. Schoetz' notes from 2003. It sounds to me that maybe the more modern stapling results in a larger opening which maybe makes stricture less common (?) 

Anyway, I started right back eating my normal diet immediately following the dilation. I did re-start eating a bit methodically. While there was no pre-dilation "prep" in the usual gastrointestinal procedure sense, I had been told to eat only a "clear liquid diet starting the day before the dilation. With the procedure being in the late afternoon I'd had 36 hours of nothing to eat more solid than Jello. I did not rush to chug down cheeseburgers and fries on the way home from the clinic.

There was no pain or burning after the dilation. As I've said, my system was pretty much empty when I left the hospital so I did not immediately strain the opening passing even semi-solid stool for some time. I could only feel what must have been bruising when I did a Kegel (i.e. tightening the pelvic floor muscles).

I strongly recommend that you do not stress about the 10th. After all that we J-pouchers have been through surgically, an anal dilation is a walk in the park.  


Hi, JiminMaine...I'm Sharon in Maine and so happy to know I'm not alone here!  Your recent posts came in the nick of time as they helped me realize why I've been struggling so much in recent months.  I am in immediate need of anal dilation and there are other issues too which remain to be diagnosed.  Moved here from Ohio -- where my pouch was constructed by Dr. Victor Fazio of Cleveland Clinic in 1987 -- six years ago and have never hooked up with any GI or colorectal surgeon since.  So very few choices in the state, and no way to judge their expertise, so I felt discouraged and just tried to soldier through...very bad plan.

 I just called the colo in Portland and left a message asking straight up if she is familiar w the pouch and have yet to hear back after two days!  That might be my answer. I'm intrigued by the idea of the Lahey given your satisfaction w their services, but also considering Langone w Feza Remzi, who studied under and worked for years w Fazio and is the cream of the crop. That would be a very difficult trip though as my ongoing pouch issues have left me housebound. And as we all know it won't be one trip but two or more pretty close together.  All I know is that it's time to act, no matter how difficult, expensive, etc.

I am receiving the dilators tomorrow as I need prompt assistance while waiting to see someone. I was so glad to hear your dilation procedure went well and that you are feeling better. Do you see a local gastroenterologist? Dont know where you are in the state, but maybe you could give me a recommendation.

Thanks again for sharing your experience and providing all the detailed info from your surgeon.  You saved me just as I was truly getting desperate. Would love to talk by email sometime if you're up for it.  

Best wishes, Sharon

Hi Sharon - I'm in Bristol, ME, about 1.5 hours "downeast" (up the coast) from Portland. I do recommend the folks at Portland Gastroenterology Center https://portlandgastro.com/physicians-staff/ on Marginal Way right alongside I-295. The gastroenterologist that I used to see, and diagnosed my UC and then referred me to Lahey, has retired. And, as I mentioned at some point, since the creation of my pouch I've been foregoing gastroenterologists and just been seeing surgeons at Lahey.

My brother moved up here a couple of years ago and saw Dr. ALEX MILLSPAUGH, MD at Portland Gastroenterology Center for his first-ever colonoscopy. He caught a cancerous rectal polyp just in time. Dr Millspaugh clipped the polyp and then, when it tested positive for cancer, referred him to Dr. Sara W. Mayo, MD at Maine Medical Partners — Surgical Care Casco Bay https://mainehealth.org/maine-...gical-care-casco-bay who did an excision at the site of the polyp at Maine Med hospital. Dr. Mayo was also highly recommended by the surgeons down at Lahey.

I can't tell you whether you should see a Gastro or a Colo-Rectal surgeon at this point. Probably makes sense to first speak to the doctors' nurses/staff at Portland Gastroenterology Center. I'd hope that they'd refer you to surgeons right away if post-op anal stricture isn't something they treat.

I'll try to PM you. I'm headed to bed!  ;-)  Jim


Jim...Thanks for the prompt info.  It was Sara Mayo's nurse that I contacted and haven't heard back from yet; I will re-call tomorrow.  I will call Portland Gastro too and see what they think.  I believe I have some narrowing on the other end of the pouch as well, so I'm concerned this is going to get complicated.  That's why I thought I might need Remzi, who sees all of this routinely.  But of course if I can stay in the state, it would be so much easier.  Again, thank you so much for your guidance.  Glad your brother found such good and timely care; hope he's doing well.

Good night! Sharon

Hello all, Jim and Aimee

I did have my dilatation done on the 10 September and have just started using the dilators could not do the size 17/18 but 16. Surgeon told he could dilate to 20ml and he was pleased about it but unfortunately I do not see any change in my difficulty to empty the jpouch. Actually it seems almost more complicate as I loose stools quite easily, not much control of the sphincter muscles to hold to give me time to reach the loo, once there nothing happen and as I get back to do things or seat down I have the urge to pass stools again and don’t often make the loo in time. This goes on until I finally have a good elimination without knowing when it is going to happen and I am more or less free till the next meal. And I thought the dilatation was supposed to make things easier!!! It is impossible to plan anything and be away from home!! I will be seeing the surgeon next week and hopefully he can do something about it. 

Jim and Aimee did you have anything similar after dilatation?? It seems like I have to learn to understand the functioning of my jpouch all over again.

thank you and best.



Hi Patricia,no I didn't have those problems. I was dilated to 16. I can self dilate to 16.  I had to do this everyday for about six months . Now I'm trying to go more days between dilations. So far it's going okay. I can only think of a couple of things that could help you. Have you started taking fiber? I now take it before breakfast and dinner. That has helped me tremendously. Also, could you have pouchitis? The having to go and nothing coming out and the urgency make me wonder. I was on Miralax for quite some time before dilations and maybe a month after because my small intestine was so swollen and literally full of poop. So I have loose stools, but I was able to go and make it to the pot. Let us know what your surgeon have to say. So sorry you are going through this. Hopefully it's something as simple as fiber.



Thank you Aimee, I do it quite a lot of fiber as per salade and vegetables row or cooked as I loved and could not leave without but at the moment I feel they are giving me more wind and cramps and create the problem. I also have been treated with antibiotics for possible pouchitis and I know the urge could be a sign of it but I believe it is more a mental or mechanical or both problem and really hope to solve it soon somehow. I found 16 dilator just barely going through and still not sure how far I can go, but will see a nurse soon, I think I really have to use it for long like you as I feel it is needed.

i don’t know what miralax is but will look into it.

thank you again


Patricia, the surgeon had me taking Miralax to keep the stool liquid and to clean out the large backup I had.  Have you tried Beano before eating fiber. Works for beans and most veggie. I even take it sometimes when I take Metamucil. It works for me most of the time. Certainly better than that gas, which is horrible. Hope things get better soon.


Hi Jim! I live in Maine and I had my final surgery with Dr. Schoetz at Lahey in 2000. Do you live in southern Maine? Who is your gastro? Are you happy? I'm looking for a 2nd opinion right now. Thanks!

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