Does she take probiotic?  That's beneficial for everyone (with and without colon).  Specifically it would help prevent 'pouchitis', help protect the mucosal lining and help with allergies.  May be worth considering?

Thanks for that suggestion and I've just checked and she's definitely taking a good probiotic. 

Cheers 

Liz

I think she has something called a "pull through". I think there are others on here that might be like her. 

I was told that it might take up to 3 years for full j-pouch recovery so think her doctor might be a little long in his estimate.  

Typically with rectal cancer, they do what is called a low anterior resection. A colonic j-pouch is often created. With half of the colon preserved, function should be much better than with an ileal j-pouch. However, radiation treatment will cause intestinal mucosal damage, with resulting diarrhea. Still, this should be resolved after this much time. That said, treatment for issues should be the same as those of us with an ileal j-pouch. Of course, if there is no history of UC or Crohn's, meds for IBD would not be appropriate.

Jan

Thanks Jan, what you say makes a lot of sense. I'm sending Jenny the link here as this forum would be very helpful to her. I certainly didn't know about the mucosal damage aspect though it seems obvious in hindsight.

Goentropo posted:

I know this is for those of us with pouches, but please read and offer any advice if you have some.

I've actually have a J Pouch for 32+ years and recently met a lady who has had cancer, with the result being loss of her rectum and half of her large intestine. Lucky lady? Frankly, she's had so many more problems than I have had and I've been trying to research to find more help for her. Except, I can't find anything and her symptoms are so close to issues that those of us with no large intestine have. All the research I've done online shows information for SBS (Short Bowel Syndrome) but it's all for shortened small intestine and a total colectomy. I'm hoping we can find a place here for this lady and others like her because; yes, lucky in some ways; but floundering in so many others

She's been having several motions a day, and towards the end of the sequence, it's just mucus or it gets to the point of straining but nothing being passed. I believe, at the very least, that she has inflammation of the mucosal lining in either the small, large or, perhaps both intestines.  (....*cough*.....errrmmm...does this sound similar to pouchitis, anyone?)

The other possibility is she may now be finding that mild allergies, which her fully functioning bowel handled, but are now creating an issue. I personally found that out the hard way after my J Pouch surgery. I loved shellfish, but even looking at a prawn these days has me clenching all available and functioning bits I can....tightly.

The sad thing is, her surgeon tells her that she has to be patient as it takes time to  adapt; that some of his patients are still having problems 6 - 10 years later and she's only been struggling for 18 months. I mean, really??? seriously??? Dare I say W.T.F????

I asked if she'd ever been given a dose of metronidazole (flagyl) or discussed any possible other causes with her doctor and was told  that, no, she hadn't.  I discussed this medication and ciprofloxacin with her and said she needed to do her own research before she goes back to the doctor to demand some assistance. 

I asked if she could take pseudoephedrine ( sinus dryer-upper when you have a bad cold or a histamine reaction.). When she said yes, I suggested she take one that night before bed. I found out many years ago that the mucosal lining of the ilium reacts the same way that over-productive sinuses do when taking this medication. If I feel like I'm going to have troubles while out for the day, I'll take a pseudoephedrine before I leave home. Nine times out of ten, works like a charm. (Note, not good for people with blood pressure problems.) It worked for her, it was the first night she had only gotten out of bed once and the next day contained far less visits to the bathroom. A word of warning, with all medications such as this, you can have a  rebound effect and it states this clearly in the medication's information leaflet. However, you're generally home by that stage and taking a book to that wee room isn't really a hardship.

I'm hoping I can get some of the amazing advice which members of this forum are renown for (well, I keep singing its praises to everyone I think needs to know it exists). I have found many times that this font of knowledge; from people at the 'coal face'; the one place I always go to for advice and assistance. We have all been so lucky that we have this safe place with people who have been there and done that , come out the other side with a wealth of wisdom. 

Goentropo posted:

I know this is for those of us with pouches, but please read and offer any advice if you have some.

I've actually have a J Pouch for 32+ years and recently met a lady who has had cancer, with the result being loss of her rectum and half of her large intestine. Lucky lady? Frankly, she's had so many more problems than I have had and I've been trying to research to find more help for her. Except, I can't find anything and her symptoms are so close to issues that those of us with no large intestine have. All the research I've done online shows information for SBS (Short Bowel Syndrome) but it's all for shortened small intestine and a total colectomy. I'm hoping we can find a place here for this lady and others like her because; yes, lucky in some ways; but floundering in so many others

She's been having several motions a day, and towards the end of the sequence, it's just mucus or it gets to the point of straining but nothing being passed. I believe, at the very least, that she has inflammation of the mucosal lining in either the small, large or, perhaps both intestines.  (....*cough*.....errrmmm...does this sound similar to pouchitis, anyone?)

The other possibility is she may now be finding that mild allergies, which her fully functioning bowel handled, but are now creating an issue. I personally found that out the hard way after my J Pouch surgery. I loved shellfish, but even looking at a prawn these days has me clenching all available and functioning bits I can....tightly.

The sad thing is, her surgeon tells her that she has to be patient as it takes time to  adapt; that some of his patients are still having problems 6 - 10 years later and she's only been struggling for 18 months. I mean, really??? seriously??? Dare I say W.T.F????

I asked if she'd ever been given a dose of metronidazole (flagyl) or discussed any possible other causes with her doctor and was told  that, no, she hadn't.  I discussed this medication and ciprofloxacin with her and said she needed to do her own research before she goes back to the doctor to demand some assistance. 

I asked if she could take pseudoephedrine ( sinus dryer-upper when you have a bad cold or a histamine reaction.). When she said yes, I suggested she take one that night before bed. I found out many years ago that the mucosal lining of the ilium reacts the same way that over-productive sinuses do when taking this medication. If I feel like I'm going to have troubles while out for the day, I'll take a pseudoephedrine before I leave home. Nine times out of ten, works like a charm. (Note, not good for people with blood pressure problems.) It worked for her, it was the first night she had only gotten out of bed once and the next day contained far less visits to the bathroom. A word of warning, with all medications such as this, you can have a  rebound effect and it states this clearly in the medication's information leaflet. However, you're generally home by that stage and taking a book to that wee room isn't really a hardship.

I'm hoping I can get some of the amazing advice which members of this forum are renown for (well, I keep singing its praises to everyone I think needs to know it exists). I have found many times that this font of knowledge; from people at the 'coal face'; the one place I always go to for advice and assistance. We have all been so lucky that we have this safe place with people who have been there and done that , come out the other side with a wealth of wisdom. 

Hi Liz thanks for sharing my story and thank you every one for all your suggestions. In Bali at the moment and tummy gone worse feeling very bloated with constant diahoria at the moment. Popping those gastro stops as advised by my surgeon and doctor. Lost appetite heading back home next week and hoping to get back on track xox

So sorry you are dealing with this on your vacation. You might try cutting out salads, fresh fruits and veggies.  That is if you are eating them. Just an idea as those might be the current culprits causing you problems.