wieghing options, insight welcomed

Wow! You're the poster child for side-effects! Yikes.

I think if this were me, I'd go with the left-side colostomy and see if that helps. If the rectum doesn't start behaving then you could decide about moving forward with a j-pouch or permanent ileostomy.

It seems rather insane to keep throwing meds at the misbehaving colon/rectum only to have them fail and then try another. I imagine that can go on for as long as they come up with new drugs for you to 'try.'

Only you will know when it's time to throw in that towel. And it seems like it's getting close.

kathy

Jill-
With that list of problems and the diagnosis of crohns' colitis I can't imagine any decent colorectal surgeon would agree to do a jpouch. It is just asking for lots more rouble.

So I think your choices really are colostomy or wait and try the new drug. And considering drugs are tough on you (I can relate.. I seem to get all the side effects too).. why not try the colostomy? Give everything a break. And if things heal.. then you can always get reconnected. If not, you can live your life with an ostomy.. which really is not so bad at all.

Thank you for your reply..
We are leaning that way. Being in the dental profession I am a little leary being smelly to the patients...lol..should I require a permanent ostomy
I have been blessed in not having to miss much work... should some side effect requiring long hospitalization/chemo/being home until not infectious...howdy is it worth it?
You are correct in saying it seems I am close to throwing in the towel. I'm feeling I have tried enough. I want to be able to work out again, work with the horses, spend time with friends and family without making a mess of myself. I know I need to know what life is like on the other side of surgery. I know it will not be a cure all but not as dangerous of risks?

Jill

You will not smell with an ostomy. That is a complete misconception.

Liz,
Thank you! If I do the left side ostomy then I will continue the Cimzia or this new drug in attempt to heal the rectum and reconnect. From my understanding if the rectum doesn't heal them it will be removed and reconnection not an option. That is a question I will write down and take to my appointment!

Do you still have your j-pouch? What kind of problems are you talking about? The surgeon said I would hate him because I could pass bowel out of my vagina later. As of right now the surgeon says I'm not a good canidate for j-pouch or resection until rectum shapes up. I assume otherwise it gets cut out and it is what it is

Thats a relief. I remember as a child my grandmas ileostomy smelling and her bag puffing up. She had UC also. She had her ileostomy over 50 years ago and can't remember much except she was really ill and her life is better. At her age now she struggles with dehydration and occasional electrolyte imabalances. I don't smell her new type of bag now but I'm taller now. lol.

I opted for a J-pouch 10 years ago in spite of considerable uncertainty about Chrohn's vs. UC. They wouldn't consider it at Mayo (in fact they turned me down), but I reviewed the medical literature very thoroughly at the time and did not agree with Mayo's analysis of their data. A group in Paris had quite similar results, but came to the opposite conclusion (for circumstances like mine), and IMO better understood the actual decision facing the patient. I found a quite reputable surgeon about a thousand miles from home, and have had generally good results. I did *not* have a fistula at the time, or other signs pointing strongly to Crohn's, but I really wanted to see if I could be successful without an ostomy. At the time I thought even a couple of good years before needing an ostomy would be worth it, and I knew that the pouch could fail. I've done better than I expected. When my daughter unexpectedly asked me to study martial arts with her, I was able to say yes, and we did that together for about six years. It would have been hard to say yes to that with an ostomy, I think.

You all are so awesome! A wealth of things to consider! I truely appreciate the input! My husband and I are having a very hard time with Mayo diagnosis. I was so sick and then the change in diagnosis the day before surgery it was hard to process and respond. Mayo in fact was all for j pouch and what a good canidate I was and really pushed hard, how it was going to improve my quality of life. The Doctors were not concerned with the fistula as I wasn't experiencing communication since end of 08 early 09ish.
I do now have an occasional bubble of gas communicating a month after being at mayo, am going on 2 years of active disease.
We talked about my past surgeries. I did not have those reports but my memory was no pathology from the cultures, no stool was found, however I did take antibiotics until the cultures came back. The surgeon said it looked like bloody mucus. Was in and out of the hospital for the first 2 as soon as the anesthesia wore off went back to have tubing removed a week or so later. However, The third surgery I was in for a couple days. Was on iv meds (levoquin) and was told something about stitching through the vaginal wall. there will be a little more discomfort. No reports of pathology from culture. GI and surgeon were acting a little more concerned and wanted me on remicade asap. Not too long into my remicade I felt a bubble of air come from my vagina when going from sitting to standing and thought that was wierd, called my GI and was told that was a RV fistula and afraid that was going to happen. They upped the remicade and in time it resolved. No additional meds were given, in time it went away. No dicharge just an occasional bubble of air. I had at that point active UC for 4 years with no period of remission. I still ran with my running group. My GI said she suspected the abscess started from me holding it in despite the strong urges to go during my morning runs. They were intense and I could feek like something was giving way but by golly I wasn't going to deficate in front of my friends. lol. I have requested those records for my next appointment at KU med center. Hope KU does not agree with mayo diagnosis. My regular GI comment was.. she is glad mayo is doing this and hopes cimzia works.

Mayo- My pathology report, colonoscopy, ct in fact say on them no evidence/suggestion of crohns. The doctors all initial reports say uc.
The surgeon consult the day before surgery had a whole different view. he isn't sure of what I have but 'sniffs' crohns so therefore I'm not a good canidate. In fact acutely not a good canidate for any surgery and need to go back to the GI doctors for medical intevention. Then the GI doc jumped on board with the surgeon and with this new diagnosis cimzia is now available to me.

I have been reading lots of wonderful stuff from Dr. chen at cleveland clinic? My husband says we can go there for a second opinion. Any thoughts on that?

Scott- what is IMO and are you referring to Paris, France? Mayo facility was wonderful in many way but have concerns they are not really understanding what I'm facing (possibly protecting thier reputation)? I just may not be a 'fit' for thier system.

My thoughts are
if surgery by removal of colon cures UC then the fistula would heal and no more problems. J pouch could be an option. If crohns it fails then end ileostomy. No more of these very dangerous drugs..

if surgery by left sided colostomy and cimzia to heal the fistula. if it is UC it will be back. The fistula possibly not heal due to disease and reconnection not an option. Then I still have a misbehaving rectum, colostomy, more dangerous drugs. Then what? Remove colon see if that resolves? Then maybe j pouch?

Maybe consider a 3 step j pouch. removal of colon see if it all heals then j pouch? if not then end ileostomy?

Do the drugs that treat J pouch cuffutis, pouchitis or other issues have such dangerous risks?

Thank you
Jill

"IMO" just means "in my opinion."
When I reviewed the medical literature ten years ago there were two research groups studying J-pouches in "indeterminate inflammatory bowel disease (IBD)." Indeterminate IBD means that they're not sure if it's Crohn's or UC. One research group was at Mayo, and the other group was based in Paris. The Paris-based group had a more favorable opinion of J-pouches for indeterminate IBD, and I felt their conclusions were better reasoned than the Mayo conclusions. I'm sure there is more current research available.

Fistulas occur very, very rarely in UC, so they are considered a strong indicator of Crohn's, even if they are small and clear up. J-pouches tend to work very well in UC, and the surgeons like to think of colectomy as "curing" UC. A J-pouch for Crohn's has a much less favorable future in most cases, since the disease is not cured in any sense, and the entire pouch remains a target for the disease. Any surgery for Crohn's is generally limited to when it's absolutely necessary, e.g. when a section of the intestine has become life threatening, since the surgery does nothing to help the underlying disease.

It sounds to me like the fistula convinced them that you have Crohn's rather than indeterminate IBD, and they will likely only recommend treatments that have proven effective for Crohn's disease.

Going to see Dr. Chen would be optimal! He's the best.

kathy

Not to give you more to think anout, but I think you need to understand that colectomy, with or without a j-pouch, is by no means any sort of guarantee you will not still need drugs, dangerous or otherwise. My point is that particularly if this is Crohn's, you may still need maintenance medication. Even with a UC diagnosis, there can still be residual disease or extra-intestinal manifestations.

My diagnosis always was, and still is UC, but I take Simponi for my inflammatory arthritis, which was diagnosed a decade post-op.

I am not saying this would happen for you, but many people wound up disappointed because they specifically had surgery to get off medication, only to find that was not the case for them.

Jan

Thank you all for your input! I feel much more informed and sure to go in to this next appointment better educated should this drug not work.

Jan- Your point was one question I did ask the surgeon after being hit with how bad my disease and surgery is needed. response was not sure. Last year, april fools day lol, I landed in the er after my back went out. GI ordered a flex sig then was put on prednisone. My chiro said L4 was out. Once the prednisone kicked in she was able to adjust and have it hold. I was out of work for 2 weeks. My sister also pointed out if crohns then would a maintenance drug be needed if surgery done and mentioned if I've been tested for arthritis. My sister is my pharmacist and has been a lifesaver at times.


There is no doubt IBD affects us all different yet with many similarities.