Age old Q. More drugs or surgery

  Hello all, I have been in the hospital at UCSF for over two weeks. Today I have to make the decision between more drugs i.e. Remicade and Prednisone or a colectomy. History- have had UC for 22 years, diagnosed 6 years ago, could'nt take Mesalamine, and did not want stronger drugs, so just kind of lived with it, managed as best as I could through diet and herbals, at one point thought Boswelia was the answer but it either never really worked or stopped working. Over the past three years I have gotten very sick with other symptoms that may or may not be systemic to the UC, as I have continued to get worse even when I thought that the UC was in remission- hypotension, transient afib, extreme ijoint pain that comes and goes, and I have gotten so weak that I can't stay on my feet for more than 5 - 15 minutes depending on the day. I have been diagnosed with everything under the sun including Lyme disease, all have been dubious. Two months ago I came to UCSF to try and get some answers, at that same time I had what I considered a mild flare going, docs put me on 40mg pred. flare kept getting worse, finally admitted, put on i.v. pred. two weeks ago along with first Remicade infusion. Today, UC flare a little better but Ifeel ten times worse overall, can barely walk down the hall and back I am so weak, and I am starting to feel stupid, like there isnt enough blood to my brain (I know sounds weird) and I have the shakes like nobodys business. So... colonoscopy said severe left sided UC

second Remicade infusion would be today.Thinking surgery to just take the UC out of the picture once and for all, and not having to worry about long term heavy drug therapy muddying up the waters to figuring out what else is going on... Who knows, maybe it will all go away with the colon. Don't really know what I am looking for here, just peoples experiences with the drugs and the surgery I guess. Thanks for reading. Mike 48 yrs.

Post Edited (mike&uc) : 4/4/2014 9:42:27 PM (GMT-6)

Sheesh, you're much worse off than I was when I opted for surgery! I'm pro-surgery when one has no quality of life. I got my life back; no more meds, funky diets, or missing out on life. My life with a jpouch is predictable and the past 13 years post surgery has been excellent. I'm a long distance hiker (100-200 miles), backpacker, and international traveler. I can do all of these things without a concern for my health. UCSF is a great place to be; Dr. Varma is an excellent surgeon (I'm in CA too). Good luck with your decision.

Sue

I don't have a lot of time to type right now but just wanted to say I went thru all the drugs (really, all of them) and diets and nothing helped me. I had J pouch surgery going on 4 years ago and it's been a God send. I'm so happy I did it. It's tough (very tough) to get thru but so worth it. All the best to you.

Dr. Varma is the surgeon at UCSF that I've heard the most about. I would meet with Dr Sarin for a consult and find out how many j-pouches he's done and what his failure rate is. I would personally not let someone do a j-pouch on me unless they had done 200+ j-pouches.

Only you can decide how long you're willing to wait. I was in a similar situation where the "name" surgeon wasn't available for about a month but a surgeon who wasn't as well known for j-pouches was available immediately. With my quality of life I couldn't imagine waiting a month, and I had a very reassuring consultation with my surgeon and found out that although he wasn't "well known" for it, he had done about 700 j-pouches. I was able to have surgery immediately and have had a terrific outcome.

If I were you I would ask about a three step procedure so that you can try an end ileostomy first without committing to a j-pouch. I don't mean to scare you, but from the reading I've done it seems like the people who have other autoimmune issues, especially "mysterious" ones, tend to be the ones who end up having worse j-pouch outcomes. You might be perfectly happy and healthy with the end ileostomy and be able to stop there -- there's a longtime member here (Probiotic) who did just that and has no plans to move forward toward a j-pouch.

Surgery is as much guesswork as any other treatment: it might be your saviour or you might still be left with a host of health issues.

I had surgery for refractory Crohn's colitis and I can't honestly say it transformed my life for the better. I've since been diagnosed with Hashimoto's disease and am on Levothyroxine for that. The Levo made me feel miles worse for a few weeks, but now I just feel crap instead of dreadful, so I suppose that's an improvement of sorts.

Don't listen to promises that your life will be transformed and you will be surrounded by a golden glow of happiness and fulfilment for the rest of your life. By all means hope for a successful outcome, but anybody who promises that to you is wrong.

Anyway, personally I'd give the Remicade some more time, but if it has made no improvement after 12 weeks, ditch it. (Or try doubling the dose and if that doesn't work, then ditch it.) Cyclosporine is an even more heavy-duty drug, but it has saved a few on these boards from surgery (I never tried it, regrettably). In the meantime, what do your blood tests show? Are your blood cell counts (red and white) normal? If anything was seriously amiss from the meds, blood tests should pick up on it, but check with your docs.