I've been a long time visitor to this site and definitely thank you all for such valuable information posted on these forums. I've come to a little bit of a dead end in treatment and was wondering if anyone had any experience similar to mine or an idea as to what might be going on as the doctor I am seeing in Japan is somewhat inexperienced with j-pouches. Though, it may also be that I might have too many symptoms to sort through, so I'd appreciate any response.

Background:

I was diagnosed with UC when I was 15 (in 2001) with the inflammation limited to my descending colon. It was controlled by Rowasa (mesalamine enema) for about a year before I flared into pancolitis. I unfortunately was unable to go into remission as remicade and cyclosporine failed. In Nov. of 2002, I had my colectomy and had my j-pouch created in a 3-step surgery. I adjusted to my j-pouch with no problems and through the years had very little problem with pouchitis since I got it once every 3 years or so.

Fast forwarding... (gets long-winded from here)

I had moved to Japan to study Japanese about 8 years ago, and have been here ever since. I never had any problems until I started working 3 years ago. I began to have trouble eating. At times whenever I ate too much, my body would go into some sort of panic attack. It was never constant, but it did make me slightly fear overeating. Though at the time, a gastro doctor did find that I did have gallstones and took ursodiol for three months. My eating problem never really did go away, but it was not too bothersome, so I never pursued it further.

Last year, things went downhill. I changed jobs because my the work environment was bad. Going into my new job, I basically lost my ability to eat anything. Two bites and I would feel nauseated. While I did have some urgency, I did not think I had pouchitis because my pain was limited only to the upper abdomen, and my periods were perhaps the cause of my urgency as I do sometimes get urgency before a cycle. I did not have diarrhea though. One of the doctors at the hospital I currently visit suggested I do a pouchoscopy. Somewhat reluctant, I went with the suggestion to do the pouchoscopy. Turns out, I have ulcers around the anastomosis and the bottom of the pouch, but not into the upper part of the pouch. Also, an upper endoscopy and CT scan was done, but they came out clean.

Treatment for my doctor has proven to be difficult as I am not responding to anything. For the past year, I had been doing penatasa (mesalamine) enemas, but it did not help. We've also tried steroid suppositories, and a short course of 200mg cipro twice a day for two weeks. Since pentasa was not working, I changed to a ointment based steroid two weeks ago, but that also does not help my symptoms. While I do not have the typical urgency or diarrhea, the symptoms that continue to plague me is an inability to eat, bleeding of the ulcers, and upper abdominal pain. My current doctor is beginning to believe that my current state is a result of the surgeries. Out of three pouchoscopies over the course of a year and a half, the area of where the ulcers are are still the same, and it has neither gotten worse nor better. Also, all my blood work comes back normal, so my upper abdominal pain is still a mystery.

Also, my doctor does not like the idea of long-term antibiotic use. He has been really trying to stay away from them, but might give in to an antibiotic treatment if he believe it is safe. I will know more about it tomorrow when I see him again for a check-up.

I really am hoping to get some relief from my symptoms as it has been a tough year and a half. I lost my job because of being sick. I would really like to work, but being in my current state, it makes it difficult as I am always tired from being anemic and not being able to eat. If you have any similar experience or have ideas, that would be greatly appreciated.

If you made it to the end, thank you for reading.

-Rina

Original Post

Thank you Rina. I got an appointment with a nurse practitioner at my GI office for Thursday. My GI is always booked up he's booked up until September. Unfortunately I don't think there's any other GI near me. I also think an abscess is forming in my left butt cheek because I felt a hard bump. I had an infected abscess over a year ago. 

My symptoms were similar, with upper abdominal pain associated with meals. I also had a lot of cramping, along with urgency. I did have classic frequency and loose stools too. I did OK with constant antibiotics in rotation. My GI also was not keen with me staying on them. I had already been on a variety of different biologics for my arthritis, but it was not controlling the gut symptoms. Finally, my GI recommended Remicade and Imuran. It is a hassle getting the infusions, but I have been in remission over a year now. I know Remicade was a failure for you with a colon, but something to consider now. Plus there are other biologics you may want to try.

Dr. Shen at the Cleveland Clinic Pouchitis Clinic has been getting some results with hyperbaric oxygen therapy for ischemic pouchitis, but it may be tricky to get and to get coverage for it, since it is experimental for pouchitis.

Jan

Last edited by Jan Dollar

Dr Bo Shen at the Cleveland Clinic told me to cut out sugar from my diet.  Sugar causes inflammation in the body .He also said I needed to exercise more.  I can not tolerate eating a lot of fruit, it makes my bottom burn.  I also find drinking lots of water 12 or more glasses a day helps.  Without a colon, which is like a sponge to hold water in our bodies we need added water and salt.  My pouch does not tolerate coffee or any imitation sugars. Causes bad burning. I do better when I eat 2 meals a day.  When my last meal of the day is by 4pm, I sleep better with less interruptions.(potty visits)  I am almost a vegan.  Trying to get off of eggs totally.  I hope this info can be a blessing.  I am very thankful for this site, it has been a real blessing to me in my times of need.  

Sorry for the late reply.

Jan: Thanks for your input. My doc threw biologics out the window because my CRP is normal and biologics failed when I had UC. Plus, I also do not have the classic signs of pouchitis. I did have urgency at one point, but it went away when I started pentasa. What plagues me is bleeding from the ulcers and the inability to eat. I had a sudden onset of malnutrition last year and have been drinking an equivalent of Vivonex now for about a year and a half. As I am in Japan, I do not think I will be able to go to the Cleveland Clinic, and I no longer have insurance in the US. I currently am trying the ATM treatment which has had success with treating UC. It is a combination of amoxicillin, tetracycline, and metronidazole taken concurrently. I hope to get some results and some relief. I guess I'm glad that I'm not always on the toilet, but on the downside, I continue to heavily bleed and am fatigued from not being able to eat.

Mary Ann: Thanks for your input. I have changed my diet a lot, but even with these changes I continue to bleed from the anastomosis. Actually, I find that whenever I eat a lot of protein is when I bleed the most. I have cut a lot of sugar out of my diet, but I continue to bleed, so finding a diet has been difficult to find. Every day is a hit or miss with food as I react differently to the same foods differently each day. Hopefully I can get some relief, and the bleeding to stop.

-Rina

Wait a minute! You are taking three different antibiotics and you have significant bleeding? Have you been tested for a C. difficile infection?

By the way, CRP is not an effective parameter for diagnosing IBD pouchitis. Plus, did you fail all of the biologics, or just one? I am not pushing them, but just pointing out that they need not be off the table, at least not for the reasons you mention. Pouchitis is different than fulmanant colitis.

Jan

Hi Jan.

I believe my doctor did check for C. diff in my last pouchoscopy back in December. Though, I can't be sure because I never got a copy of the report. He said he checked for infections, but all the tests came back negative. He also checked for Crohns as well, but that came back negative as well.

As for biologics, I did ask my doctor about it, and he believes that if I failed at remicade that other biologics won't work. I'm not too familiar with how many biologics there are in Japan, but it seems like Remicade is the gold standard here. He did consider Humira at one point, but decided that it also wouldn't work. I'm not sure why my doctor is adverse to biologics. He only goes by what the blood test tells him, which in a sense is kind of annoying, but I'm not a doctor, so I cannot really contest to what he is saying.

As for the ATM treatment, here is a link to a study:

http://gi.org/wp-content/uploa...4a_ucantibiotics.pdf

Also, my aunt in Canada has seen someone get better from UC. If this treatment fails, I will try asking my doctor for biologics again.

-Rina

Looks like the study showed a modest response compared to placebo, but long term the relapse rate was similar to placebo. It is noted that it was specific treatment for F. varium bacteria.  Did you have an antibody titer run for that bacteria, or is your doc using the "shot in the dark" approach? Nothing wrong with that, but just less likely to be effective.

Another thing to consider if this does not work, is a short course of prednisone. Since Pentasa was effective in dealing with the urgency, steroids may help get the ulcers healed. If longer treatment is needed, you can go topical with hydrocortisone suppositories or retention enemas, or oral budesonide (Entocort).

Many countries outside of the US are less likely to prescribe biologics. Perhaps because of the astronomical cost, the cost:benefit ratio just doesn't justify it.

Jan

Last edited by Jan Dollar

Hi Jan.

I think my doctor is doing a "shot in the dark" approach. He has discussed my case many times with another doctor who specializes in IBD, and they both have come to the conclusion that my ulcers are not from an auto-immune response. I'm sorry I failed to mention that last post as it came to me after I posted it (and a mass jumble of language of trying to translate in between languages). I think that is the reason why he threw out biologics. He believes that it has more to do with the blood flow. Though, his theory keeps on changing as to why I have these ulcers because I neither get better nor worse in the 1.5 years he has done pouchoscopies on my pouch.

As for steroids, I currently am on an ointment-based steroid and have been for a little over a month. While I have seen less bleeding in my stools, I still have eating problems. I know it's not supposed to get better overnight, but I would have thought I'd have a little better response to it. I hope that in addition to the short course of antibiotics I can get some relief. Though, I will not be able to tell if it is the antibiotics or the steroids giving me relief.

Thanks for your opinion as always.

-Rina

I know this sounds crazy but I felt the best when I did some pretty intense acupuncture and Chinese herbs. I saw a guy in the states that was trained in China and most of the herbs I took he had to have shipped in just for me. The cost here was insane so I just couldn't keep it up. You may have better luck in Japan though. It's worth a try if you already don't have insurance.

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