Pouch dialation

Alan, this sounds very tough - I'm sorry you're going through it.

It's strange that your doctor suggested a dilation if "everything looks fine." He would either have seen a narrowing or not. In any case, here are some things to think about to try to work out why this is going on:

1) What's the consistency of your output? Formed/soft/watery?

2) Is your pouch actually full when you feel the need to use the toilet? This can be hard to tell.

3) What happens if you delay a toilet trip? Pain/pressure/fullness/leakage/unholy mess?

4) Are you able to empty your pouch on the toilet, or does there seem to be some stool left that you can't push out? If there's some left, what fraction would you guess is left in your pouch after a bathroom trip?

5) What else have you tried besides bowel slowers? Soluble fiber? Antibiotics?

Scott. you are a blessing. It’s nice to hear someone who wants to listen....My Drs. seems to be in such a rush.

Uc diagnose 1992

Jpouch 2008

Cleveland clinic Florida....Dr. did mention narrow opening. That explains why a digital rectal exam by my urologist is so awfully painful. Output is never formed. Always loose sometimes muddy and sometimes watery.

I’m not sure if pouch is full when I feel the need to go. 
Delaying will result in 💩 in pants... thank God for Depends.I believe empty fully.Does come out like a shot most times .maybe due to the narrow opening? My surgeon prescribed Flagyl and Cipro when I called him with my excess of trips to the bathroom the end of June.My symptoms improved with the regiment. However couple days after finishing antibiotics severe symptoms returned.That’s when I made an appointment to see the doctor for a scope the end of July.

that’s when I made an appointment to see the doctor for a scope the end of July.

regularly I take five psyllium husk capsules with Lomotil and prescription Imodium. It seems like I get no effects from the regiment...In the past Lomotil seemed to decrease my trips to the bathroom.

gosh I never expected this to be so lengthy. Sorry for so many words. Thanks Scott. Any help is much appreciated.

Alan

Per my doctor he will only dilate if he can't get the scope through the Pouch inlet. I think everyone who has had a Pouch more than 15 years is strictured at the J Pouch Inlet due to the simple mechanical issue of backsplash stool because of no backsplash valve at the inlet. The result is pooling of the stool above the inlet and resulting inflammation causing the stricture.

Can they get a scope through the inlet and peek up into the neoterminal ileum? That's the $64,000 question according to my GI.

The fact that Flagyl + Cipro helped may be important, but sometimes is just because they tend to thicken output. It’d possible that you just have pouchitis, which isn’t always obvious on pouchoscopy. For some of us the symptoms return whenever the antibiotic is stopped (antibiotic-dependent pouchitis). In any case I wouldn’t combine Cipro and Flagyl unless you’ve determined that neither one alone is sufficient. An important question: when you were on Cipro + Flagyl, did you feel great or merely improved? That can help determine if the narrowing is actually a problem for you, since Cipro and Flagyl did nothing to correct the narrowing.

Try to find out if the narrowing is at the pouch inlet or at the outlet (anastomosis). They have different implications for treatment.

I’m skeptical of bowel slowers taken all day, though they seem to help some people. 24 hours worth of eating will get to your pouch over a 24-hour period. A bowel slower may help decide *which* 24-hour period, so I take them only when I need to delay bathroom trips (bedtime, before getting on a boat, etc.). In some cases the longer transit time may allow more water to get absorbed, so that probably explains the benefit of all-day use.

I think the psyllium works best around mealtimes (I take it with breakfast and dinner). It mixes with the rest of the stuff and (on a good day) yields a soft-but-manageable consistency. When I tried the capsules I noticed that I could see concentrations of psyllium in the poop. I switched to powder, which is more hassle, of course, and I’ve been happier with the results. I think it mixes with the food much more completely.

If it were my body, if I’d gotten great results from antibiotics I’d ask to try just Cipro again (or Flagyl). If the antibiotics didn’t *really* make things right I might go for the dilation first. I’m fortunate that my doctor listens to me.

Good luck!

I thought he said the opening of the Pouch? That would be the inlet as that is where stool enters. But perhaps this needs to be clarified because strictures at the inlet are very common, and at the outlet not so much.

Scott

I’m finding that I’m a lacking knowledge ofj J pouch terms and geography.

When the surgeon scoped me and told me he could dilate me. That was so that I could empty more and possibly go west. Does that help to answer your question?

On another note.My GP recommended I go to a gastroenterologist instead of going to my surgeon. I live in the Fort Lauderdale area. Does anyone have any suggestions of a GI  that is familiar with J pouches? 

I am not a great advocate for myself. I try to do my best. I am so glad that I decided to post on this forum. I guess this is a way for me to be an advocate for myself?

Alan

My previous post to Jeff ..Sorry for the typo. Not go west. Go less

Alan

Scott I’m sorry. I said Jeff I was responding to ...I’m new at posting on this forum or any forum for that matter...

Alan

Alan, I think you’ll do fine. One of the best ways to advocate for yourself is to clarify your concerns and questions in your own mind in advance, so you can get them addressed during a too-short medical visit. The hardest part for many of us is trying to “think on our feet” with time pressure.

I do think you *might* get better results with a gastroenterologist than a surgeon, but there are also some wonderful surgeons and some terrible gastroenterologists. It’s likely perfectly reasonable to get the dilation, if only because it’s your best chance of avoiding long-term antibiotics, and because the doctor you already have favors that approach. It’s not that they (dilation and antibiotics) treat the same thing, but that when two things are going on sometimes fixing one of them is sufficient to get a satisfactory result.

Alan (Al P)  I sent u a private message about a recommendation.

Hattie

thank you so much!

Alan

I used to dilate regularly with a candle and it helped me empty better. When I see my surgeon he also dilates me with his thumb. He has also dilated me under anesthesia. For whatever reason lately I haven’t needed to dilate. 

Hattie

I sent you a private message about your recommendation.

Since your scope was fine 2 months ago you may not be stricutred at all. 9% of the J-pouch community goes OVER 13X a day (including myself). You could just be a 9 percenter like me

*Congratulations* on your first post, looking forward to more

I appreciate your reply...First time hearing those percentages. Where have you gotten your info?

Alan

@Al P posted:

I appreciate your reply...First time hearing those percentages. Where have you gotten your info?

Alan

Yeah, its not talked about too much on here because a lot of people on here do a lot of judging to us people that go a lot. I am not sure why but I tend to avoid people on here that are negative about stuff, it makes life easier. Thanks for being nice.

Here is the link: Under Stool frequency

https://www.ucsfhealth.org/edu...eople-with-j-pouches

Thanks for posting this informative link, Lauren. One of the big problems with measures of stool frequency is that it mixes together people who *must* use the toilet at a given frequency with those who choose to. Those are, however, very different experiences, and I think it muddles things to combine them. For many people a key advantage of a well-functioning J-pouch over life with UC is the lack of urgency. Even 4-6 urgent bathroom trips with urgency can be quite disabling, whereas non-urgent bathroom trips tend not to be experienced as disabling, or at least much less so. People vary in how long they prefer to wait to empty their pouch, or how often they empty their pouch in preparation for a trip away from toilet facilities, and it’s easy to confuse that personal preference with something that should guide others. The guidance to stretch the pouch by delaying toilet visits after surgery is intended to help people have that choice. If a person is experiencing urgency with a J-pouch then something isn’t working properly, and hopefully it will turn out to be correctable.

Thanks for the link, Lauren - and Scott I think you make a great point. For example, I am able to hold my bathroom trips during the day sometimes for hours and go mostly at night.  Several trips to the toilet within an hour before bed is not uncommon for me but it opens up pretty much my entire day where I'm not tied to going to the bathroom frequently. Everyone is different.

Scott,

You have given a new perspective . I appreciate your info! I will now challenge myself  to adjust my thought process. I am proactive in my bathroom trips...I think my mind was trained early on when I did have leakage issues... I now realize a change to  my mindset has the potential to make a leap to better quality of life.....I think wearing  depends will give me the courage to try to hold on longer....Does anybody have any ideas on the sphincter  muscle?

Alan

If I feel like I may have leakage issues that day I will sometimes use Depends Like you mentioned to put my mind at ease.

my other thought is the consistency of my stool plays a large part in my ability to delay a bathroom trip for hours. I prefer thicker and use Metamucil for that.

Safado

Thanks for mentioning fiber. That is definitely something that I need to revisit... I take five capsules daily of the psyllium husk. I don’t think that makes much of an impact. I have konsyl, but it does taste terrible and I’ve never been able to consistently take it. I need to be determined to take it regularly.

Alan

@Al P posted:

Safado

Thanks for mentioning fiber. That is definitely something that I need to revisit... I take five capsules daily of the psyllium husk. I don’t think that makes much of an impact. I have konsyl, but it does taste terrible and I’ve never been able to consistently take it. I need to be determined to take it regularly.

Alan

I mix a half-dose of Konsyl with a half-dose of sugar-sweetened Metamucil. I find it much easier to tolerate than straight Konsyl. I also find that the powder works better for me than the capsules.

Scott

thanks for the tip. Sounds like you’ve been around the block a few times...I appreciate your support.

Alan

Powder psyllium works better for me too. I use the unflavored kind mixed with some OJ. The wafers are great and convenient too. I’ve never had a good experience with the pills.

Where can I get wafers?

@Al P posted:

Where can I get wafers?

The wafers are widely available at pharmacies and Amazon https://www.amazon.com/s?k=met...;ref=nb_sb_ss_i_1_16

They worked fine for me, but I decided I didn’t want cookies twice daily.

I just buy the Metamucil wafers on Amazon.

Thank you my fellow jpouchers!!

@Al P posted:

Scott,

You have given a new perspective . I appreciate your info! I will now challenge myself  to adjust my thought process. I am proactive in my bathroom trips...I think my mind was trained early on when I did have leakage issues... I now realize a change to  my mindset has the potential to make a leap to better quality of life.....I think wearing  depends will give me the courage to try to hold on longer....Does anybody have any ideas on the sphincter  muscle?

Alan

Alan, its never reccomended to hold in your poop, never. You should go when you need to go. There are mixed reviews on here. Holding in poop can have dangerous consequences. ALWAYS go when you need to go.

Lauren,

That's not correct. I had the best J pouch surgeon in the USA in Dr. Irwin Gelernt - who had done more Pouches than anyone in the USA by the mid 1990s- and he told me that I was to hold in the bowel movements as long as possible. This was in order to stretch out the pouch and increase its capacity, which would not be stretched out otherwise. The reason you do it is to increase the size and stool capacity of the pouch so you don't end up having a small pouch and 13-20 BMs a day as opposed to 5-7. I am not the only person on here who has heard or posted this and I don't know where your science is coming from. What Scott posted above is 100% the correct advice that any competent J Pouch surgeon gives his or her patient after surgery.

This guide is or should be instructive:

https://www.ostomy.org/wp-cont...ir_J-Pouch-Guide.pdf

See page 23:

"ONGOING CONSIDERATIONS

Pouch Adaptation - Pouch adaptation is a process which continues for six months to a year following surgery. During this time the pouch increases in capacity. The number of bowel movements per 24 hours decreases to about four to six and the stool becomes thicker in consistency. You should not to respond to every urge to evacuate the pouch in order to begin increasing the size of the reservoir, thereby decreasing the number of trips to the bathroom. You can also help with pouch adaptation by learning to control pouch function with diet and, if necessary, medication. The majority of people do not have any major problems with control. However, some night time seepage or incontinence may be experienced. This generally will pass with time You may wish to wear a pad to prevent soiling of your clothing."

This is a fundamental industry standard and is The accepted industry wide advice.

Thanks for sharing this CTBarrister. This has been my experience and has drastically improved my quality of life by being able to have control and less bowel movements when I’m trying to work, travel, during outdoor activities, etc.

Just because there are articles on something it does not mean its right. There are articles that state "having 5 cups of coffee a day" reduces Alzheimers; another study states having 5 cups of coffee a day can produce psychosis. Just about every study/article has something that contradicts it. I typically follow the study that reduces more harm.

I agree holding in poop can stretch the pouch, but the only benefit is not going to the toilet that often. Holding in poop can cause severe problems down the road. I would rather go close to 20x a day than deal with potential problems down the road. Going to the bathroom all the time versus other consequences of holding in poop are not worth it to me.

Everybody is different though.

Just want to clarify what I have meant by “hold it”. Hold it in my case means having the capability to choose when I poop. If I’m in back to back meetings, out hiking or mountain biking, etc. and it is not convenient for me to poop, I can choose not to go and I feel fine and it allows me to do the activities that I want to and have the quality of life I want.

I definitely look for a bathroom if I have urgency and discomfort. But if I am having urgency the entire day, in my case, that means something is wrong with my diet or J pouch.

Lauren, your preference to use the toilet many times per day is a useful perspective. Your apparently baseless claim that it’s “dangerous” to hold in poop and that it “can cause severe problems down the road” seems to simply be unhelpful fear-mongering. You haven’t even managed to point us to an unreliable source for this nonsense, let alone a scientifically reasonable one. I don’t know why you hold such a belief so strongly, and I won’t hazard a guess here, but I also won’t leave it unchallenged.

@Former Member posted:

Going to the bathroom all the time versus other consequences of holding in poop are not worth it to me.

What "other consequences of holding in poop" are you talking about?  You are speaking in very conclusory terms and using words like "dangerous" and "harmful" and "severe problems" without explaining what is the danger or the harm or the "severe problems".  When my colorectal surgeon's office indicated I should resist the urge to defecate as long as possible, no such danger or harm was mentioned to me. Dr. Gelernt - who told all his patients the same thing and gave us a structured written plan to follow - was very tedious in explaining to me every potential side effect, complication, potential danger, etc., including telling me to bank my sperm in case I fell into one of the 2% of males whose nerves controlling sexual function are damaged by the surgery, resulting in temporary or permanent impotence.  He also told me to bank my blood, which I did, and that was good advice because I was transfused during the surgery with my own banked blood due to blood loss.  But I heard nothing from him or anyone else about the dangers of holding in or resisting the urge to defecate, and I would like to know the reasons why you are so concerned about this.

@Safado posted:

But if I am having urgency the entire day, in my case, that means something is wrong with my diet or J pouch.

In my case urgency usually equates to a pouchitis flare, but yes diet can impact on urgency. Certainly, if I drink red wine I will produce some very extreme urgency, like "you better haul some ass to the commode NOW" type urgency.

@CTBarrister posted:

What "other consequences of holding in poop" are you talking about?  You are speaking in very conclusory terms and using words like "dangerous" and "harmful" and "severe problems" without explaining what is the danger or the harm or the "severe problems".  When my colorectal surgeon's office indicated I should resist the urge to defecate as long as possible, no such danger or harm was mentioned to me. Dr. Gelernt - who told all his patients the same thing and gave us a structured written plan to follow - was very tedious in explaining to me every potential side effect, complication, potential danger, etc., including telling me to bank my sperm in case I fell into one of the 2% of males whose nerves controlling sexual function are damaged by the surgery, resulting in temporary or permanent impotence.  He also told me to bank my blood, which I did, and that was good advice because I was transfused during the surgery with my own banked blood due to blood loss.  But I heard nothing from him or anyone else about the dangers of holding in or resisting the urge to defecate, and I would like to know the reasons why you are so concerned about this.

I have stated multiple times on the j-pouch forum of the dangers of holding it in. It can cause: permanent constipation, poop signals sending to the brain can fade (When you ignore poop signals that are sent to the brain and not act on it, the poop signals can eventually stop, leading to permanent constipation), hernias, blockages, overgrowth of bacteria- the list goes on. I have personally talked to people that have experienced a lot of these side effects holding it in.

@Former Member posted:

I have stated multiple times on the j-pouch forum of the dangers of holding it in. It can cause: permanent constipation, poop signals sending to the brain can fade (When you ignore poop signals that are sent to the brain and not act on it, the poop signals can eventually stop, leading to permanent constipation), hernias, blockages, overgrowth of bacteria- the list goes on. I have personally talked to people that have experienced a lot of these side effects holding it in.

Lauren, you may indeed have talked to people who believe these things. Lots of people believe lots of things. Your transformation of these beliefs into certainty, however, is an error. Stating it repeatedly doesn’t make it any more likely to be true. It seems clear (since I’ve asked a few times) that you haven’t found a single published source, reputable or disreputable, to support these claims.