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

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 

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. 

Aimee

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

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. 

Aimee

Jim,

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.

-Roni*

 

Jim,

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.

Michael

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