12 Years Post Op experiencing increased BM, Vaginal Discharge, Weakness

Hello, Jules2. The probiotic strain my doctor specifically told me to take following Cipro and Flagyl is S. Boulardi. It can be bought on its own in 5 or 10 billion doses, or you can buy it as a strain within a bottle of other strains. What is your diet like?Eggs provide B12 and protein; iron is found in spinach. I attend a cancer group where they advise getting your vitamins, minerals, proteins, etc., from whole, unprocessed food sources instead of supplements. Ask your homeopath to draw up a diet plan for you with food and drink aimed at restoring, balancing your energy and strength so you can fight off whatever is causing your imbalance. It is hard for you to go through this after almost a dozen years of good health. Have you contacted your surgeon who created your Jpouch?

I'm sorry you're having such a bad time, Jules. You've got a couple of things going on, and your doctors don't sound inspired. I can't quite tell from your story whether the Cipro/Flagyl helped with your stool frequency. That might help work out whether you're dealing with pouchitis. I know the Flagyl was stopped, but how long were you on the Cipro? Also, were you tested for C. Diff? That can be a very troublesome cause of frequency.

The combination of bladder infection, and stool and air in your vaginal area *not stopped by a tampon* make me wonder if you might have an enterovesical fistula (a fistula between your pouch/intestine and your bladder). Is it possible the stool and air could be coming from your urethra (where you pee)? If not, a recto-vaginal fistula is also possible, with the UTI tracking up the urethra. Fistulas can be a real nuisance, but they're worse when you don't know what's going on. A good gastroenterologist should be able to help you with this, or perhaps the right colorectal surgeon. 

The probiotics come in two general classes: helpful bacteria or helpful yeast. The S. boulardi (like Florastor) suggested by Winterberry is a helpful yeast, generally used to prevent C. Diff. I use VSL#3 DS for helpfu bacteria, but other people have had good results with Align. The bacteria seem to help with pouchitis. 

I hope this helps a bit.

Thank you both so much for your insight. I agree, my docs are not "inspired", I like your word choice Scott. ��

I did try to go on a whole food diet early this year, organic veggies, kale, spinach and really watched my protein intake. I really like all veggies, cooked or raw. But I don't digest these foods well. It didn't help with my increased BMs. It made things worse, so I subsided on the green leafy veggies as much. 

I have not contacted my surgeon, but am open to any suggestions. 

The antibiotics didn't help with the increased BM. They were given to me for the bladder infection and I was only on for about 10 days (a standard round to treat the UTI)  And when I had the colonoscopy I was put on steroids for the pouchitis, not an antibiotic. I was tested for C-diff, negative. 

Also, both my Gyn and primary doc tested my vaginal discharge for bacteria, both negative. I suppose the air/discharge could be coming from my urethra, but I'm not sure how to tell exactly. Makes sense that the tampon wouldn't prevent the leaking. 

So, I'm left wondering why the discharge tested negative for bacteria if there may be a fistula between my rectum and vagina or bladder. And that wasn't found with the colonoscopy or during a thorough pelvic exam. 

My primary suggested seeing an immunologist/allergist. May try that too. 

But I will definitely start a pro biotic and sincerely appreciate the recommendations. I want to be sure it's one that others with this surgery have tried with success. I do always worry that my physicians (Western or homeopathic) don't really know how to treat someone with a J-Pouch/without a colon. 

Thank you both again! It really helps taking to those who have been through this on some level. My close friends and family don't quite understand as I'm the only person we all know who has had this surgery. And given my extreme success for so many years post op, we are all at a loss right now. 

Happy Thanksgiving to you both (if you celebrate.��)

Sincere Regards,

Jules

Hi, Jules2.

While you decide about including an allergist to your medical support group, try to fix what you can control, and that's your diet. If you're having frequency try not to eat the leafy greens or other roughage and see if things calm down. Try to eat soluable fiber. If you like zucchini, peel the skin away and eat only the fleshy part (soluble). Turn your veg into soups with a blender. Treat your pouch like a one year old baby: soft foods that have lots of protein and some carbs, reduce sugar. Try a loaf of sourdough bread (has some probiotic properties) to see if you like it. Put almond butter or peanut butter on it, slather it on if you want to put on weight. Try not to send anything to your pouch that a toddler can't digest. Give the pouch some rest from roughage and see if you feel better for not having to go all the time. If I were you, I would call my original colorectal surgeon who built the pouch. He / she would have your medical file, scopes, X-rays, notes, everything, and might be in a better position to help you. That surgeon is like the tailor who made a bespoke suit: they know every stitch, every bit of fabric, every cut. I hope you get to see your surgeon and find out what's happening and find relief soon. Happy thanksgiving.

Jules, if the discharge was negative for bacteria (in two tests) then it's very puzzling, particularly with the air you described. It's unlikely to be stool, I think. I suppose the antibiotics could have killed most of the bacteria, depending on the timing of the cultures, but I'm at a bit of a loss. I can't begin to imagine what an allergist might do for you, much less a homeopath. Is the bladder infection cleared up now? Since the diflucan didn't do the trick, what's plan B for the yeast? Your Gyn should be able to help with these.

Steroids are a strange initial treatment for pouchitis. Does your GI have any other J-pouch patients? You can do a couple of things by yourself to manage the stool frequency, for comfort and in the hope that clearing up the other things might calm it down. Are you using any Imodium? That can help with frequency. Also, how about soluble fiber, like Metamucil? If your stools are liquid, soluble fiber should thicken/bulk them up.

Happy Thanksgiving!