30 BM's a day

[sickone]

I am a 30 old seperated male. I was dignosted with alsorated colitis at age 19. I have been to at least 15 differant GI doctors.last year my doc said he could not help me and that medication would no longer help{ex. prenisone,antibiotis,remacad infusions,anti depressents,lomodal,6mp,all sulfa drugs,bental , levsin not to metion about 10 more and even tried VLS#3 agood culture. Ihave had every test possibly done. The only thing that the docters sugest is a J pouch sergery.So i did this was preformed 1 year ago. The surgey and healing went fine ]but much suffering. Now a year afther my surgery and on 8 differnt medications I am still having 30+BM a day docters have givin up.
any sugestions will be helpfull,I have my whole life never been able to hold a job do to my sickness. Any thing i can do!please help .sorry ican not spell very well.

[chloee]

Hi Sickone:

So sorry to hear about your illness. I'm sick too and just found this website today and posted a question re: Clostridium Fallax. I suspect antibiotics caused my illness but I still don't know and it's frustrating as hell! My main symptoms are loose stools and a chronic low grade fever and I tried many probiotics and found 2 that helped. First I tried Culturelle...take more than the package recommends. I took 3-4 day and noticed an improvement. About 2 months ago I started taking VSL#3 and after taking it for 1 month I noticed a dramatic improvement. I hope you gave it a chance ...it does take a while for it to really work. I'm taking one package per day and am still doing better than I was prior to it. They say you can take up to 4 packets per day. I know it's costly (2 boxes cost $56.00) each box contains only 10 packets. You can ask your Insurance if they can pay for it...I think some might considering the circumstances. Hope you get better soon. Good luck!

[sickone]

Thankyou for the other web sites i did a lot of reading of ones experiances.it seams 95% of all people after the j pouch sergery where helped with just a few medications. I am on a ton and nothing even slows down the bms. Sorry for being nagative but i was told that i would be on min meds afer surgery but i am worse off than before. I had my surgery at UNC Chapalhill NC. I believe that the docotors did a good job but i believe I would be better off with no surgery and treated with the meds thay treat for pouchitie.

[RTFLY]

Well, I'm sorry to hear of you having so many problems. I am actually going to have my J-pouch surgery in Sept. I, too had ulcerative colitis, and suffered dearly. I was on all the medications you were and nothing worked. I have an ileostomy right now but, like I said, will be having the corrective surgery soon. I agree with kimbacat, are you sure it was ulcerative colitis? UC and Crohns are alike in some ways and can mimic each others symptoms as well. After your surgery, a surgical pathology report can pretty much confirm whether it was UC or Crohn's. UC only affects the inner mucousal lining of the large bowel where as Crohn's can effect all layers of the large bowel as well as any other part of the digestive tract. Pouchitis is usually accompanied by a fever, general weakness, some pain in the rectal area and frequent bowel movements. It is also pretty controlled with antibiotics. Don't give up! UNC-Chapel Hill is a good medical center. I agree with kimbacat in that you should consider going back and having some tests to COMPLETELY rule out Crohn's. Also, consider a Brooke-end ileostomy or a new surgery called BCIR or Barnett Continence Intestinal Resovoir. It is supposed to work well with patients that have failed pouches. Good luck and keep your head up! You are young and you WILL get better. Be aggressive and take care. Don't let this beat you! Take care...
                                              JCI

[kimbacat]

I'm really sorry to hear that.  I'd hoped you could find a new idea on one of the sites.  are they sure you had UC and not Crohn's disease?  these two are easily confused, even on biopsy.  I know a few people that have had terrible results with thier jpouch.  through further testing, they found out that they had Crohn's rather than UC.  and since crohn's tends to return at the site of surgery, jpouches aren't used in crohn's patients.  

have you considered converting to an ileostomy or a Koch pouch.  they would keep you out of the bathroom so much.  and I believe Remicade is being investigated for treating chronic pouchitis.  

sorry, I don't have any other suggestions for you.

[kimbacat]

I'm really sorry to hear you have had such a difficult time with ulcerative colitis.  do the docs think that the diarrhea is due to pouchitis?  if so, have you considered a traditional Brooke ileostomy or a Koch Pouch?  

there are a couple of sites that might help you:  www.jpouch.org  www.ccfa.org  qurlyjoe.bu.edu  
the first and last one have quite a bit of info from regular folks about dealing with and treating pouchitis and living with a jpouch.

good luck and I hope you can find some help soon.