Are you using Metamucil or a similar product to firm up your stools and Imodium to slow you system down? My surgeon had me on both Metamucil and Imodium on a schedule as I came out of the hospital that I followed for a very long time. I was gradually able to wean down from it but still take prescription Imodium daily. I'm at not quite 2 years since my first surgery.

Wait a minute... If your pouch is OK and your ileum is inflamed, I don't see why your GI is not treating that!? Metamucil can be great for stool thickening, but it does not slow the gut and does not treat inflammation.

I would recommend tesing for C. difficile infection (since you were treated for pouchitis and that has resolved). If that avenue comes up empty, then considering a Crohn's diagnosis and appropriate treatment should be next. Not a great thought, but better and wishing and hoping.

Yes, it is true that adaptation can take a year or more, but inflammation is not part of that. Adaptation is just the body adapting to the lack of a colon.

I'd get a second GI opinion.

Jan

yES, I take METIMUCIL 3 x`s daily and 9 immodium. Also take opium when it gets really bad( over 25 times). Were you able to finally feel a bit better say 10 times daily after a year or two? Thanks so much.

Dear Jan,
I see this doctor Tuesday to discuss the results of Thursdays scoping and biopsy results. I totally agree w/ you that inflammation should not be there(anywhere) and it says on my results that The ileal muscosa showed chronic active inflammation and partial atrophy. He told me on the phone that he doesn`t quite know what to do...So, I am trying not to feel hopeless. Oh and he tested for c diff, I was clear on that one. If I had some sort of idea how long this constant purging of my bowels is going to last or even what the true cause of this diarreah is , then I could just say okay...this too will pass.

My GI sent me to a GI that specializes in IBD at the Mayo Clinic when he could not get my chronic Cuffitis to clear up. Ask your doctor to refer you to a GI that specializes in inflammatory bowel diseases and/or j-pouches. It sounds like s/he has tried but that you have more specialized care needs.

I will do just when I see him on Tuesday! Thank You!

Sounds like he is treating only the symptom of diarrhea, not the inflammation. It is possible there is a narrowing at the pouch inlet that is causing some fecal stasis and bacterial overgrowth in the pre pouch ileum, leading to inflammation, or it could even be a sign of small bowel Crohn's (less likely). The bacterial overgrowth could crop up after the swelling from surgery caused things to bog down, antibiotics, or something else.

I would think the first course of action would be to treat this as if it were pouchitis (a course of antibiotics), which would treat bacterial overgrowth. I'd prefer Flagyl over Cipro, even though you are negative for C. diff now. If antibiotics did not help, then you could move on to other IBD targeted treatments.

Having a GI say he did not know what to do would worry me some, so I would go in with some questions, theories, and possible treatment options, other than just treating symptoms. I am not sure you'd need to travel to a big center at this point (at least not yet), particularly if your doctor is willing to explore different ideas. I don't mind helping my doctors learn, as long as they are willing!

Jan

I will discuss with him a course of antibiotics and the pre pouch ileum. Also narrowing of pouch inlet. My doctor here is the only Gastro in the area, and there are no people w/ this surgery around here at least that want to talk about it. I know of one gentleman only, and he had a liver transplant right after and he had so much going on he can`t remember how he felt or how long it took him to recover. He is now 70 and has had his pouch 16 yrs. We will see where all this goes when I speak with The doctor in the morning. I do have an excellent surgeon. My surgeon was trained at the Cleveland Clinic and is amazing...I am going to travel up to see him shortly and maybe he will have some ideas???? Or would it not be really great if they could just work together? There`s a thought. Thanks , Jan...I will let you know what they come up with in the meantime my bathroom calls! Ugh!

Doctors work together all the time. Since your GI is the only one in the area I bet he could talk not only with your surgeon but with other more experienced GI's and ask for advice. I think the even do consultations at CC where files are sent to the doctors there. I've just heard other people on here talk about that so don't know about it.

Oh absolutely! I'd even bring your surgeon's contact information to your appointment to make it easy for your GI to contact/consult with your surgeon. Even if it is in your chart, it would be nice for him to have it right there, not buried in 400 pages. I have the luxury of having all my treatment providers in the same system, so all my records are in the shared electronic database. I know it is much more complex when doctors are not freely associating. Anyway, he could phone or email your surgeon with questions and probably get a quicker response than you.

I do not assume that a doctor is an idiot because he is stumped. I think it is better than those who think they know it all and will not listen to suggestions. This can be a learning experience for everyone. You as an advocate for yourself and your GI, to become a better doctor.

I am 3 years postop and I still go to the bathroom that many times a day.I take benefiber 3 times a day, max dose of lomotil and immodium, prevalite bid (it's like super glue-an old cholesterol med) and I changed my diet.I am a vegetarian so I have a limited diet. I was told not to drink water but to drink gatorade-it goes thru slower. But I was just diagnosed with stage 4 lung cancer-in other words I know have colon cancer in my left bronchus. For the last year codeine 15mg at bedtime has helped otherwise I was going to the bathroom every 2 hours at night.

I went to the digestive disease dept. avoid sugars, alcohol, soda etc. Avoid gas causing foods.

Thank you for replying to me. I am sorry to hear what you are going through. I am going to Portland, Oregon to see a whole posse of doctors. They should come up w/ something. In the meantime, I will take your advice and watch my diet. I can`t even begin to imagine going thru this for 3 yrs as you have. You must be a very strong ladyI am tired of the many bathroom trips after only 9 months. Hang in there and please let me know how you are doing!

I also meant to add try taking in foods that go thru slowly like peanut butter,oatmeal,banana,plain yogurt (no added sugar),cheese. When I had my temporary ostomy I was a regular poop maker at night-I had to empty my bag 2 or 3 times at night also. I am scheduled to have my second run of chemo on Tuesday but my oncologist said I had one year to live without chemo and 2 years to live with chemo. The doctor was a delight.

I have not tried oatmeal. Something I will for sure try. Dairy of any kind, I find I can no longer tolerate The night time is the worst isn`t it? The second I fall asleep and relax those muscles...I have an accident. Again my heart goes out to you and what you are having to go through. Know that you are in my thoughts and prayers , especially on Tuesday! Let me know how your doing.

jalex,

I would be very interested in knowing what group you end up using. I live in Portland, and might be looking for a new GE doctor. My old one retired and his replacement is not impressing me, to say the least.



.

I go to Dr. Patrick Lee@ The Colon Rectal Clinic,Portland,OR phone# is :503-222-0016 I hope he can help you!

oH, AND I LIVE IN A SMALL TOWN OUTSIDE BEND. MY GI DOC IS SIDNEY HENDERSON OF BEND. DR LEE IS MY SPECIALIST FOR COLON REMOVAL AND NOW CARE AND ISSUES W/ JPOUCH..j

Linda, I pray your doctor is wrong and your prognoses is brighter. How many rounds of chemo do you need this time? I know it's more complicated that this but am perplexed. Why didn't they find your lung colon cancer until it was so advanced? Horrible news.

jalex,

My surgeon used to be with that group. Dr. Frankhouse. When I had my colon removed, he was with them. Since then, he has moved to Legacy Oncology Group at Good Samaritan Hospital.

Although they specialize in cancer, his "legacy" UC patients continue to see him there.



.