I have only been here a week and my head is truly spinning at this point between all of the personal stories, diets, meds, surgeries, etc. It seems as if most people here ended up with the pouch because of UC. Except for few (relatively) people who had emergency surgery due to a UC flare or related issue, people suffered many years with UC before making a decision to give the pouch a try. It also appears that there was a great deal of variation in the information given in order to make that decision. For a lot of people it seems as though the pouch has been an improvement although there are generally issues - some minor and short term, others more serious and long term. But after reading many of the posts on many different forums I have to wonder whether the pouch was a good decision for me and where I go from here.

For most of my life all I had was occasional spells of belly pain. Very serious double you over pain, but only pain. And the episodes were infrequent. In my late 20's - early 30's the pain became more frequent but less severe - and pain was still the only symptom. Unfortunately, like other people here, I had a doc who thought I was a hypochondriac and did not bother to do any testing. When I landed in the hospital they finally did a lower GI and told me I had Crohn's. The next day my colon ruptured from an inflammed diverticuli. I was to have a "temporary" colostomy. A few months after the surgery, I developed cramping and bloody mucus discharge from the closed end of the ostomy. I was told that because of the inflamation surgery was not an option. They also told me that I had evidence of both Crohn's and UC. Several meds were tried and none worked so life went on and the problems decreased. Then close to 20 years later I had a scope due to belly pain again. The new GI said that with my history colon cancer was a probability. He recommended this procedure that would improve my life remarkably because I could have my colon out - no chance for cancer ( I have since been informed that is not true) - and get this "new" type of connection from the small intestine to the rectum. I did a lot of research (unfortunately never found this site) and found a doc at Penn State Hershey who had experience. I went for a consult and was given booklets and a video and talked with the doc. I thought it over for several months and then made the decision. All in all, my surgeries and recoveries went very well. But it has been downhill since the TD.

Almost from the start I had straining, loose acidic FREQUENT BMs with belly pain. I have been through all of the antibiotics, Diflucan and now Entocort. Jan 4th was my last day of work because the BMs were just getting too frequent and pain was really interfering. During my bad periods I am in the bathroom 20 - 30 x/day. The best period I had was for 6 - 9 mos on Xifaxin when I was down to 6 - 8x. If things had stayed there I could have lived with the other issues. Unfortunately that effect wore off and I started everything all over again.

It has been almost 3 years since my TD and I really have to say that my life has been much more negetively impacted by the surgery then when I had my colostomy. I never had any polyps so I have to wonder if I should have just taken my chances with frequent scopes. One of the things that drives me truly nuts is that not one doc has been able to tell me definitively what I have. So, to a large degree I do not even know what I am fighting.

The other day I read about Dave using LDN and apparently having good results. Then tonight I found the latest posts and my heart breaks for him because of his new problems. I don't want to be in a position of going another 3 years and looking back at all of the "new cures" that did not work. I am drained, physically and emotionally. If it were not for the support of my fiancee I do not know what I would do.

I am not sure any that made much sense, but the topic of the forum is to Rave and Rant, and I guess this was my day to rant. Thanks for listening.

Sounds like you have really been through the mill and with a variety of GI disorders. Now that you no longer have a colon and are suffering with chronic issues (sounds like pouchitis) you must be wondering what has to be taken out now for you to feel functional.

A couple of questions: What tests have you had done to possibly confirm or rule out a Crohn's diagnosis? Have you had a camera pill endoscopy and/or IBD serologies? These could help tip the scales one way or the other.

Have you had C. difficile toxin tests? This is becoming more and more prevalent and was once thought not possible to have small bowel infections. However, it can happen and be the cause of chronic pouchitis. Antibiotics are mostly of little use, except for Vancomycin, Flagyl, or combinations.

Jan

I am so sorry for everything you're going through. I hope you can find some good advice to point you in a direction to find some answers. There is a wealth of knowledge here and when we all brainstorm we can sometimes figure out something to help the doctors.

Unfortunately, I don't think you can really know for sure what you're fighting. I've had several tests done that always say I have UC but my surgeon always insisted I had Crohn's.
It's my understanding that it's very difficult to tell sometimes and all my symptoms screamed Crohn's even though pathology would say UC.

Listen to Jan...she can give you some good insight and possible tests to rule things out.
Take care and vent any time,
Lori

Thanks for the encouragement Jan and Olive. Jan - I just had the serologies and they were inconclusive. Have not had the camera study yet. Since my problem seems to reside in the pouch I am not sure what that will really show to help the situation. My pouch has been scoped repeatedly by several different docs and, fortunately, they all say the same thing. The pouch is inflammed but otherwiese looks very good. No mechanical issues, no fissues or other issues.

I have had repeated tests for C diff as well as e coli and other infections and parasites - all came back negetive. I do have an interesting history with C diff however. After getting my colostomy whenever I took antibiotics for bronchitis, etc, I developed a secondary C diff infection. Finally my doc just prescribed Flagyl in addition to whatever other antibiotic I needed in order to prevent the C diff.

A camera pill endoscopy could show inflammation in other parts of your small bowel that would not show up on small bowel series. Since your IBD serologies were inconclusive, it is worth looking into. If your serologies were not done at Prometheus Labs, that may also be a consideration. They have a new diagnostic matrix that they claim is superior to other labs for narrowing the reliability of their results.

I would not be surprised if you have chronic C. diff infections going on, since you were known to have them in the past. It is fairly common to get negative toxin results when the infection is really there. A number of people here got positive results only after multiple tests. The spores can lay dormant virtually indefinitely. I just saw an article recently regarding the effectiveness of Pepto Bismol against C. diff when combined with milk, orange juice, or grapefruit juice. These were not in vitro studies though. Might be worth a try anyway. You certainly have nothing to lose.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=538885


You may also want to try different probiotics to see if they may help balance your gut flora and keep the C. diff suppressed.

Jan

Regarding the study with Pepto and juice....would it be just as effective / similarly effective to take a dose of Pepto and drink grapefruit juice as a combatant to C Diff as taking Flagyl? or are the studies still inconclusive?

Thanks Jan. The article was very interesting, even more so because except for the several months of Xifaxin Pepto has provided the greatest amount of symptom relief. Your comments about C diff hiding rattled some cobwebs. I remembered that when I first started having the antibiotic associated infections, my stools would be negetive for C diff. It was only until the process was really raging that they could actually culture the C diff. In fact, the 2nd time it happened, the doc who scoped me because of the symptoms gave me pictures that showed the worst C diff infection he had ever seen. There was literally no pink or even red to be seen. The intestinal tract was completely white with pus. Soooo, I guess I will give the old Pepto OJ diet a whirl. Any clue about the dosing?

Jan - Just as I finished the last message I got an email from my doc regarding the biopsies from the last scope:

FINAL DIAGNOSIS

1. ILEUM (A), BIOPSY SMALL INTESTINAL-TYPE MUCOSA WITH ONLY SLIGHT
INFLAMMATION.

2. POUCH (B), BIOPSY MILDLY ACTIVE CHRONIC ENTERITIS, NEGATIVE FOR
DYSPLASIA.

3. COLON (C ), BIOPSY ARCHITECTURAL CHANGES CONSISTENT WITH CHRONIC
QUIESCENT COLITIS.

So, I guess the "winner" is colitis.

NYS, yes, inconclusive, particularly since this was an in vitro study, meaning it was not studied in the living body. These were test tube/petri dish experiments. Sorry about my error above, saying it was NOT in vitro (I meant WAS).

But, since Pepto Bismol is easy to come by, it is also easy enough to try it yourself if you are battling chronic C. diff.

JD, dosing? I don't know, but I'd start with the recommended dosing on the package. Your biopsy results indicate that you have both pouchitis and cuffitis. You may want to consider trying Canasa suppositories or hydrocortisone suppositories for the cuffitis, since the treatment is different than for pouchitis. But, at least the cuffitis is mild and "quiescent," and maybe does not need treatment.

Jan

Wow, that's a lot to go through. I'm a little confused though - if you have the pouch then you don't have a colon except for the mucosal lining left over on the rectal stump - so how can they say that you have colitis? Wouldn't it be cuffitis? If it is then couldn't they strip the lining or provide some drugs to combat it?

I hope that the suggestions that Jan provided work for you because you really deserve some relief.

Take care,

Suzanne

Suzanne - You raise an issue that I did not understand initially. Apparently they left about 4 - 6 inches of colon when they did the colectomy. I guess that is enough to cause problems. They have tried a bunch of meds but so far nothing has worked for an extended period of time.