Difficulty emptying J Pouch

Hi, I’ve had my J Pouch for nearly 10 years now. I suffered with chronic Pouchitis for the first 5-6 years, as I was undiagnosed by my previous consultant. I am now under a new consultant, who has been amazing and has got the pouchitis under control. I am on long term antibiotics as a result and everything has been running smoothly, until late. I seem to be having issues emptying the pouch, a little bit more windy and as a result have piles through straining, also woken up numerous times during the night, to empty, but obviously It won’t. The symptoms I have are nothing like the ones I had when I had pouchitis. I have been in see my IBD nurse about this and she did an internal to check if there was any narrowing, but everything was fine.  I am due to see my consultant in a couple of week, but I just wondered if anyone else is or has experienced this and may have any tips on how to empty the pouch. My IBD nurse mentioned Lucozade sport ( something to do with the electrolytes) which I have tried and it did seem to flush things through. But felt like I had to drink tonnes of the stuff, which I would like to avoid. Is there any other over the counter meds I could try? I just feel like once it has a good empty, it may start to function as it was before. I am based in the Uk.

Thanks in advance x

Original Post

Hi Scott, 

No I don’t take loperamide anymore. I used to take it when I had Pouchitis, that was about 3 years. I did take it about 1 year ago, but I got really bad constipation off it, so haven’t used it again. I have just bought some Fybogel, I’m going to give that ago, so fingers crossed. Thanks for replying. 

Is Psyllium fiber similar to Fybogel, do you know? 

Helsbells posted:

Hi Scott, 

No I don’t take loperamide anymore. I used to take it when I had Pouchitis, that was about 3 years. I did take it about 1 year ago, but I got really bad constipation off it, so haven’t used it again. I have just bought some Fybogel, I’m going to give that ago, so fingers crossed. Thanks for replying. 

Is Psyllium fiber similar to Fybogel, do you know? 

Psyllium Fiber is better, just my opinion, the raw stuff, just mix it with juice ( Psyllium is a form of fiber made from the husks of the Plantago ovata plant's seeds).

Hello, Sorry to hear about what you've been going through. As suggested above try using fiber supplement. Also it takes time for the body to adjust to the use of fiber. I got alot gassy and it was hard sometimes to get things out but soon it settled in like a month. I now take 2-2 tsp pysllium husk raw daily. Also add more bananas to your diet. Anytime my stool is too hard/soft I eat alot many bananas that day and it just treats whatever the issue is in 1-2 days. 

Hi guys,

I was reading the comments about this topic because I’m having the same problem emptying my JPouch, which is kind of new because didn’t Have this issue in the past.  Last week my GI recommended Benefiber and Scott just encouraged me to take it (thank you for that), but I wwonder if any of you have been experiment changes over the years with their pouches as I do.  And another question to you Helsbells, when you said a long course of antibiotics, if you don’t mind to share, are you talking of months? The longest period I ever take antibiotics (I used to have Pouchitis constantly also)  was a month. But used to be mostly two weeks.  Sometimes I have to stop the treatment because Cipro and Vancomycin cause me constipation. 

Please, anybody feel free to leave comments or suggestions.  

Thank you,

Laura

 

Have my JPouch for 5 years with lots of issues (Pouchitis, C.Diff, Helycobacter Pylori, blockages) including a big obstruction which required surgery to fix it.

Hi Laura,

Approx 6 months after takedown (after my j pouch had been functioning fine) I started going the toilet in excess or 20 times per day and in excess of 5 times a night. It’s was quiet explosive and I was really sore down below, due to the fact of how many bowel movements I was having.  I could hardly leave the house at times because of this. I went to my consultant countless times over a 5 year period. Only to be told by him “ I should be grateful I’m alive” and “count myself lucky I haven’t got chrons disease” and to give him the word and he’d give me permant bag. My mum suggested getting a second opinion (something I would never of thought to do). My GP referred me to a different consultant and hospital (Royal Liverpool) and I haven’t looked back since. He scoped  me and showed me a picture of my pouch, which was riddled with ulcers. I was then diagnosed with Pouchitis. I tried a few different antibiotics, which didn’t seem to work that much. I was then put on Invanz, which is usually taken IV. I make it up with a syringe and sterile water and then take it orally ( it gets to the gut quicker this way). My new consultant said this has only been trialled on a few patient, but they had had fantastic results. That was 3 years ago and I haven’t suffered with Pouchitis since, it completely cleared it. I am still on it now and its still working. I now take it every other day, as I’m worried a may become immune to it and stop working.  I have ran out a few times and not taken it for about 5 day’s max and I’ve noticed a change with my pouch, frequency and urgency increasing again. Although not sure if that’s just me stresssing, as I’m so scared of the Pouchitis coming back and going through the same again.

Thank you 

Thank you for your response Helsbells,

I can imagine the nightmare you went thru dealing 5 years with Pouchitis and a incompetent doctor who didn’t help much.  So sorry for that! It is frustrating.  Some doctors are too proud to admit you should see someone else who really can help you.  I’m glad your mom encouraged you to do it.  

My case is similar to you since I was dealing with Pouchitis practically 5 months after my JPouch was all good to go.  My biggest concern is, antibiotics might cause side effects (in my case Ciproxine caused me C.Diff every time I used it) and could affect the good bacteria in the pouch.  Right now I’m on Xifaxan (for two weeks) and seems to work, but once I finished the treatment, my diarrhea, excessive gas, pressure, pain and discomfort starts all over again.  I’m trapped in the same endless cycle and can’t get any better.  I have no quality of life, I have to quit my job because of my illness and instead of things getting better for me, is just the opposite.   I don’t want to give up on my JPouch because dealing with the ostomy bag was terrible for me, but I really don’t know what else to do. 

Anybody feel free to express opinions or suggestions.  Does anyone is dealing with  similiar issues?  The advice in this forum really helped me in the past. 

Thank you again,

Laura 

Laura, if you have to stay on antibiotics to be well, then you have to stay on antibiotics to be well. The challenge is finding one (or several) that you seem to tolerate long-term, and then live with them. That sure beats no quality of life and quitting your job. Worrying about the good bacteria in your pouch is just about the least important thing in your life, I suspect. Chronic Pouchitis shouldn’t be treated as though it’s plain old treat-it-for-two-weeks pouchitis.

Hi Laura,

I feel your pain, I really do. I too lost my job and had no quantity of life. I’d Just given birth to my 2nd little boy, when days later I ended up in A&E. I’d been diagnosed with UC 2 years previous , but had never had a flare up (other than when I first became ill). I assum my pregnancy must have kicked it off.

I didn’t cope with the bag well at all, in fact I hated every minute of it, I’m ashamed to say, even though it saved my life. I got postnatal depression really bad and couldn’t wait for my reversal.

Even though I suffered with chronic Pouchitis for 5 years, I know that had I been under the care of the consultant I am now, this would not have been the case. On my first meeting with him, I said “ I can’t go on living like this anymore and I think a permanent bag will give me a better quality of life”. He was shocked and told me, I was to young to be even considering a permanent bag (I was 36 then) and there was so much that could be done for me, to get the Pouchitis under control. We tried loads of different antibiotics, but they didn’t really work and I always still had Pouchitis symptoms (like you). It was only the Invanz ( Ertapenem) that worked for me and I will take it for the rest of my life if I have to. If only I had been under the consultant I am now, I would never have lost my job and my mental health would not have suffered the way it has.  Would you not suggest the antibiotics I’m on to your consultant? 

I really do hope you get the help you deserve and get the Pouchitis under control, as it really is no quality of life and people don’t understand. I used to say, I felt more fit and healthy when I had UC, compared the the J Pouch, but obviously that’s changed now (apart from the fatigue)

If you have any questions or want to talk about anything just let me know and don’t give up, you will get there, I’ve been in your shoes.

 

Helen x

 

 

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