MRSD, thank you for your extensive information. You have done some research. I have lived with this for over five years now, and I assure you, I know all I ever wanted to know and more about the large intestine! If I just overhear someone mention IBS/IBD or any of the range or autoimmune-related diseases of this continuum, I implore them to start probiotics at the very least. Eat more yogurt!

I have been taking VSL-#3 ever since the colon was removed. The research on this combination of probiotics, which come delivered on ice and have to be refrigerated, support its use for prevention and treatment of pouchitis, which is really the non-colon equivalent of recurrent colitis. In the following excerpt I have posted, it has been found that VSL-#3 is the only probiotic that consumes oxalates. Read on:

I-048. Oxalate Consumption by Probiotic Microorganisms
S. L. Daniel, R. Cox;
Eastern Illinois University, Charleston, IL.
The intestinal microbiota plays a major role in the regulation of oxalate metabolism in humans and animals. To date, most studies have focused on Oxalobacter formigenes, an anaerobic oxalate-degrading bacterium common to the mammalian gut. While much less is known about the oxalate-degrading abilities of other intestinal microbes, recent evidence suggests that some species of Lactobacillus and Bifidobacterium can consume oxalate and that the oral administration of these probiotic microbes to humans can impact urinary oxalate levels. Based on these findings, the goal of the present study was to determine if commercially available probiotics are capable of oxalate consumption. Seven different commercial probiotic products for humans (Saccharomyces boulardii, Jarro-Dophilus, Acidophilus Plus, Super Potent Acidophilus, Kyo-Dophilus, 4x6 Acidophilus, and VSL#3) and two different commercial probiotic products for pets (Pet Inoculant and Fastrack) were screened by transferring the manufacturer’s recommended dose of the probiotic product (usually two capsules) to 25 ml of anaerobic culture medium which contained oxalate (10 mM), minerals, metals, yeast extract (0.1%), and a bicarbonate/CO2-buffer system. Cultures were mixed for 1 hr to dissolve the probiotic product, incubated at 37°C for 48 hrs, and then analyzed by HPLC for the disappearance of oxalate. Jarro-Dophilus, Acidophilus Plus, Super Potent Acidophilus, Kyo-Dophilus, 4x6 Acidophilus, and Pet Inoculant cultures consumed very little of the oxalate (0-1%); S. boulardii and Fastrack cultures consumed 4.5 and 8% of the oxalate, respectively. In contract, VSL#3 cultures consumed all (100%) of the oxalate; furthermore, VSL#3 cultures actively consumed oxalate under both anaerobic and aerobic conditions. The exact nature of the oxalate-consuming activities of VSL#3 is presently unknown.
http://ieg.ou.edu/ASM2006/data/papers/I_048.htm

I also address the vitamin deficiencies that you have mentioned. You are very correct in the assumption that antiobiotic use has greatly contributed to my PN. During the year I had four surgeries Flagyl was the drug of choice, and during my first hospitalization, heavy doses. I was also on heavy doses of prednisone. At one time I had a long list of every single drug they put in my body, thanks to my partner writing them all down during that horrible year. It may have been purged when I gave up on the idea of filing a malpractice suit against my first and second gastros. (Several good attorneys said they were following standard protocol, which is scary when they get away with not informing patients of potentially life threatening conditions!)

I don't doubt my PN began before even my symptoms showed up, even though I have always taken good supplements and vitamins. I ate the diet of a training athlete the five years leading up to the onset of my illness. I was a mountaineer when I moved to Washington State 13 years ago. This disease has been an abrupt and rude twist in my life. Thank goodness I did the things I had urges to do back then, for my reasons are now coming to fruition: I told myself that I would look back form my elder years and regret not having attempted the things I have done. I now encourage everyone to go for it when a once in a lifetime opportunity comes their way.

I am on Pentasa 500mg up to 4000mg/day. I am on Loperamide hcl 2mg, up to 16mg/day. I am on Cipro 500mg, up to 1000mg/day. (The Cipro is the drug of choice for me to keep the bacteria suppressed, and it also helped close a recto-vaginal fistula. It is Cipro or it is Remicade, which of course has some pretty horrific side effects long term, and which likely would no longer be effective, as you build antibodies to it, especially if time has passed between administrations. We have chosen the lesser of the two in terms of long term undesirable side effects.) I also take Maxide to try to get fluid retention under control and keep my blood pressure down. Of course, witht he Neurontin I face ankle swelling again . . . a problem I have when the heat and humidity rise and sometimes for no apparent reason. We are investigating it, however.

I am also on a waiting list for a pain clinic. Right now I have been releatively pain free, but when my fissures flare up I want to know how to deal with what I refer to as "acute chronic pain."

Do believe me when I say I know way more about the colon and the digestive system than I ever wanted to. It comes with the surgery and the disease. I know of teens who practically could get their M.D. degrees for all they have learned living with Crohn's at a young age. Their stories are heartbreaking; I was told it is much easier on the older patient than the younger ones. Ouch! I can not imagine! After my complete colectomy partner and I used to sit and watch my stoma work. We also watched my gut go through contortions after my colon was removed, when I started eating solid foods again. I was on TPN twice through out that first year. THAT is a whole other story. . . . The intestines are an amazing organ that n one should take for granted. It is too bad it, and the terms describing it, are so taboo in our culture. People need to not fear asking their doctors or sharing with close loved ones when they thing there might be a problem.

I know I have autoimmune issues. It is believed that the whole range of bowel diseases are autoimmune related. Colitixxs and Crohn's are related to rheumatoid arthritis and Lupus and even eczema. And I know about the need to supplement and watch my electrolytes, and that dehydration without a colon is a big issue. I have been lucky, in that my pouch really has kicked in and done some of the work they hope it will in pulling water from the stools before they are passed. I rarely have what others consider normal diarrhea, and have been lucky to have fairly well formed stools. I can usually tell when I am slightly dehydrated.

As far as reading many texts on the subject, I have a hard time getting through light recreational reading. It is not that I can't comprehend the material, but that my attention and ability to concentrate have been affected by the chronic pain I have dealt with because of my strictures and fissures. Last year I underwent strictureplasty, and we hope to avoid either botox or surgery for the fissures because both carry a significant (for me) risk of incontinence. I have nocturnal incontinence now, and occasionally I am mildly incontinent during the daytime, usually in inconvenient places! In fact, I was up early today doing laundry, as last night was particularly active. Gas is a common problem, and at night it can cause evacuation without know it is happening if you are in a deep enough sleep. And I guess I got some good REM sleep in the wee hours. (My partner just got up, and siad she heard it, but didn't wake me, as deep sleep for me is so rare. . . but now wishes she had. It just would have meant a shower and laundry much earlier. . . we can't really prevent it!)

I will address eating in another post. However, I really can sum it up in these words: Trial and error!