I have had a J-pouch since 2007. Its my first experience with pouchitis. I was wondering why i am having such a hard time with bowel movements. Its barely coming out.. yet I am still eating normal... where is the food going if its not coming our? Anybody else had trouble with bowel movements during pouchitis? Cant even pass gas?!?

Original Post

Gweedee, what medications are you taking? Antibiotics can thicken the stool significantly, and if you're already on Imodium or Lomotil they could together cause you to back up badly. 

This sounds miserable - could be the drugs - but if you remain miserable - please go see your doc and get something to help you get past this.  I'd go nuts even after 1 or 2 days if I had not passed much stool or gas.  That's me - everyone is different.  Most of us have 5-10 bms and day with lots of gas - so it seems to me you need some relief! Dr. should help you - call him/her to get help.  So sorry  you are going thru this and hope it gets better fast.

When my pouchitis is active I do have difficulty passing stool and gas. I don't know if things are swollen in there or what. My pouchitis is punctuated by urgency, frequency, difficilty emptying, and a sensation of incomplete emptying. A couple of days of antibiotics set things straight, so I guess it is all pouchitis.

Jan

I have been having a similar problem for years now , starting with my first few bouts of pouchitis immediately after take down 5 years ago. I have been struggling with both "stop" and "go" since the beginning and am on a bunch of meds, including Cipro which I have to take every day. I have a lot of other problems which have me and my docs considering whether to ditch the j-pouch altogether -- but those are not likely relevant to your question.

I didn't see any other posts from you, so if you've had a pouch since 2007 I am assuming been doing pretty well? Should we also assume you already know the impact of your diet on your pouch, along with the impact of balancing intake of solids and liquids? Given that, have you tried grape juice and GasX? Are you experiencing any abdominal pain which could be a sign of blockage?

Experience has taught me that sometimes my seeming unrelated problems are, in fact, related. It could be the antibiotics causing the back-up... Or could it be that what's causing you to  suddenly have pouchitis is causing the stoppage? Your post was several days ago -- how are you doing now? 

Hoping you are doing better! --Jennifer

Still having some problems.. but feeling a little better.. still difficult to go. Its my first time with this problem. Unfortunately i dont have very good food habbits... and i am literally never thirsty... i find it difficult to drink lots of fluid. 

Sorry it's difficult to drink - not to nag you, but I drink a tremendous amount since I've had my pouch. It really helps me.  I had not heard of grape juice and gas x.  I tried gas x, charcoal tablets, all kinds of things I can't remember for gas - nothing worked...are u saying grape juice combined with gas x is magic for some people?  I will give anything a go.  The gas drives me nuts. Please maybe talk to your doctor about drinking more fluids - I think this may help - just my 2 cents.  As you can tell, I am talking to Jenjen and Gweede.  I am a 29 year j poucher.  Thanks to you both - please feel better soon.

My problen is that i am really scared... I didnt know what was wrong with me back then... docs didnt know either til it was to late... i lost 70lbs in 2 months and collapsed in emergency room.. next thing i remembered i was in critical care unit fresh out of surgery with an illiostomy. Stuck with it for 2 years til I got J-pouch.. was the worst thing i ever experienced. Felt alone and scared. Ruined my social life... lost my job. I domt want to go back there again... and this feels like i am.. i cant have a bowel movement. And if i do its very little... but i cant stop eating.. i haven't lost my appetite, and i dont know where its all going.. no Doctor here will scope me.. and i am stuck waiting on a referal that could take months... so i have to live like this.... 

You have every right to be scared...I've been through horrible surgery experiences and one of them did ruin part of my life.  I am puzzled that you are eating and don't know where it is going...what do you feel like?  Do you feel bloated?  If not, could you have a leak which would lead to sepsis (not to scare you - but a had a perforated bowel which led to sepsis).  I don't get why no doctor will scope you - it seems you would go to the ER.  Are you in the UK?  Is that why you can't go to ER?

I totally get the feeling of this ruining your social life, job, etc. - as this happened to me at age 45.  I got my pouch at age 23 and it was a factor in ending my first marriage.  Luckily, I remarried at age 34 and still am married at age 53.  My j pouch has definitely had an impact on my social life since the messed up surgery at age 45.  I did not lose my job, but I quit.  I nearly lost my mind...but somehow got it back.  It is a "new normal."  I am so sorry you are scared and I know the feeling and I hope you have family/friends or some kind of support.  It seems to me you need an advocate to help you deal with the health care system....is there anyone - family/friends who will help you?  Are you afraid to ask for help?  You really need to ask for help - both psychological and physical help. If you are in UK - is this just how it is?  That is so awful.  If you have a pouch, you need access to care when things go wrong. Let me know how you are doing - I am so sorry you are going through this.  Your feelings are valid and there are ways to cope with the fear - have you ever read "Full Catastrophe Living" - I forget the author - great book on living with chronic pain/fear, etc. and how to cope with meditation.  That and the old classes "Feeling Good Workbook" - Ken Burns - cognitive/behavioral guy - my sister and I did this together via phone - she is hundreds of miles away but also has a pouch - after she went through a health crisis.  We really changed the way we thought about all kinds of issues - we "knew" all this (I did for sure - I am a counselor) - but knowing it and doing it with someone else are two different things.  It helps me move beyond my fear.  It helps me know all things pass - all things are temporary, etc. - but I understand when you are in the thick of a health crisis nothing helps but good doctors who will help you!

To clarify.. i started antibiotics last Wednesday. So 8 days ago.. im on them for 2 weeks.. my worst symptoms have gone.. but i still have a really difficult time having a BM. I never did before... nobody can really tell me why. I live in Canada. But live in a small town..  no doctor here feels comfortable to scope me. So i had to go to emergency room in a bigger city. Now i have to wait possibly months for a referal to a specialist.

The antibiotics can thicken things up enough to make stools hard to pass. Was this an issue before starting the antibiotics or after? You can reduce your insoluble fiber intake and increase fluids. That should help.

Jan

I had some difficulty a little before... but it got worse with antibiotics... i was having constant pressure.. and the urge to have a bowel movement. But very little would come out. Nobody can exain to me why... i had a ct with contrast.. everything looked perfect.. except the CT showed mild pouchitis. I dknt know why i feel like i need to gontonthe bathroom.. but baeely anything comes out. Does Pouchitis do this??

Yes, it does for me. I suppose it can make your sphincters spasm. Some describe it like you are sitting on a ball.

Jan

So can pouchitis cause you to have decrease in stool output?? I can go.. but very little.. and have to force to get a little out.

I would not consider it a decrease in output. It all comes out, but for me it is combined with frequency and urgency. I run in to bathroom urgently expecting a huge movement, but it is just a little bit and it seems like a door slams shut. Frustrating to be sure, as I feel boated and the gas just swirls round and round. I wind up needing five trips for what one would take care of when I am feeling well.

I am currently experimenting with enteric coated peppermint oil, which claimed to have the effect of a smooth muscle relaxant and gas preventative. It has been less than a week and I do notice a significant improvement in my "churning gut" and gas symptoms. We'll see how long it holds out. The fact that it is helping tells me that I may well have an IBS/SIBO component going on, and not just pouchitis. 

Jan

Thanks Jan... im just really worried.. and think the worst.. even though ct says i have pouchitis and reveal of a SBO. Im still worried there is something wrong.. coukd just be the flagyl and cipro causing these side effects. But could also be a narrowing or a stricture

I know that this post is from 2016 but I am experiencing the same symptoms!  Constant urge to go but I'm lucky if a teaspoon comes out.  I've been through two rolls of TP in 4 hours!!  My gastro told me to take Dulcolax (which I did) but you have me thinking that it may be pouchitis.  

For myself I have noticed that when get pouchitis... I always have a constant dull pain.. almost like someone constantly poking a bruise. It's not a horrible pain... you just know it's there... And also feel like I have to go often... but usullay nothing or very little comes out... sometimes you just have to trust your gut.. or in this case your pouch and ask your doc to do further investigations. 

does anyone know if cancerous rectal polyps that once removed keep returning,  can be survived with pain meds.. I have had colon ca thirty years ago and am not a candidate for more surgery. had an iliostomy 30 years ago thank you

Hello, Palm55152.  

When my surgeon removed my colon and rectum, I was told that there is zero chance of getting cancer there again because that entire organ is gone, unless it is in the fraction of rectal tissue left behind when they formed the cuff. My cancer was in a tricky spot and my surgeon removed almost all the rectal tissue. I see my surgeon every six months for a scope, for at least a few years, then the appointments can drop off to once a year, then less and less. Are you being monitored and scoped regularly, even once a year?  Palm, what is causing your worry?  Are you showing symptoms such as bleeding or unusual changes?  Are you experiencing pain?  

yes I have little colon left. polys grow and are removed but then more grow. I know when I have the endo and colon scope there will be polyps in stomach and recturm.. I seem to have no control over bowel movements and, fortunately I guess, oxy helps me  but yes, I am scared this time.. I am 72 yo and had colon ca when I was 40. I so appreciate having people to talk with

Hello, Palm. Do you use Imodium or Metamucil to help control your BMs?  It sounds like you are seeing your doctor regularly, and having regular scopes where they find new polyps. Are they concerned about the new polyps? What do they tell you afterward? 

Taking pain medication such as OxyContin may help manage your pain, but it can cover up a symptom. Remember pain is there to tell you something needs attention. It could be a minor problem with an easy fix. Try not to allow fear to override you to the point that a minor fix becomes a major concern. What does your doctor say about you taking OxyContin regularly?

I am having this also at my last sigmoid, Doc said the portion that connects to the pouch is mushed kind of flattened out? he said that may be causing my passing stool to be harder? whats funny 15 years ago or so he did a barium test and it showed the same thing my stool was super loose then now last 2-3 years it has been more hard I have been on Flagyl since 97' for Pouchitis never goes away totally, I also take Dexilant for reflux just under control take Floragen3 eat lots of greek yogurt I do have a problem with Candida so started a cleanse also went in for a IgG food sensitivity test. I only drink 1 cup of coffee a day but at times more and try and stay away from my number 1 enemy Chocolate fail at times Doc said if it keeps up may have to go to a Colostomy bag told him no way there has to be a better answer I would go to my surgeon at UW-Madison WI where I had the W pouch put in in 90' NO WAY do I want a bag any suggestions folks?

I am having this also at my last sigmoid, Doc said the portion that connects to the pouch is mushed kind of flattened out? he said that may be causing my passing stool to be harder? whats funny 15 years ago or so he did a barium test and it showed the same thing my stool was super loose then now last 2-3 years it has been more hard I have been on Flagyl since 97' for Pouchitis never goes away totally, I also take Dexilant for reflux just under control take Floragen3 eat lots of greek yogurt I do have a problem with Candida so started a cleanse also went in for a IgG food sensitivity test. I only drink 1 cup of coffee a day but at times more and try and stay away from my number 1 enemy Chocolate fail at times Doc said if it keeps up may have to go to a Colostomy bag told him no way there has to be a better answer I would go to my surgeon at UW-Madison WI where I had the W pouch put in in 90' NO WAY do I want a bag any suggestions folks?

Just so you know you can still get c diff without your large bowel or colon. I would maybe check that option out to as it is a pretty simple test.

Hi GWEEDEE.  Sounds a lot like what I have experienced...  I have had pouchitis but this was something different.  Turned out to me cuffitis.  What worked well for me (quickly) was cortifoam.  It comes in a small cylinder can a bit larger that a bic lighter.  An applicator is put on top and you fill it with the foam, insert it and squirt it.  It hits the cuff area and it really opened things up for me.  My cuff is a bit larger than normal according to the scopes... I guess because my surgery was done 30 years ago, the had not quite perfected it.  So that area is still vulnerable to UC.  The foam seems to fight the inflammation quickly.  I also pair it up with Salofalk suppositories.  

My symptoms were bloating.  A full feeling that I needed to empty but could not.  The pressure even effected my bladder and gave me a feeling of urgency to pee.  Sort of felt like a lead balloon in my lower abdomen.  The urgency was not near the rectum like I normally feel when I need to go.. it was higher up and turned out to be more issues with the cuff. 

I hope you are feeling better.

Mark

Have had my pouch since 1986 I’m 59 yrs of age just went through a bad sinus and lung virus had to take antibiotics and Iv steroids was sick for 7 weeks now have pouchitis my first time on this site so greatful to find it. Seems evertime I take meds I get it so I avoid antibiotics and also anti inflammatory meds. I only seem to have problems with meds other wise I take nothing for my disease do try to eat healthy constant drinking water am interested in finding out from others about eating diet only thing I haven’t seen on this site. 

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