Remicade or Surgery?

I had a colonoscopy two weeks ago. Here’s what my doctor said “I’m blown away by the severity of your disease. I have no idea how you’re functioning.”

My last scope was in April 2009 and it was pancolitis. Four years later it’s still pancolitis. At first he recommended Remicade but since the biopsies showed possible dysplasia(which also was on my last colonoscopy in 2009) he’s suggesting surgery.

So far I’ve tried SCD(for a year and half) and ended up with pancolitis. I’ve been taking LDN for the past few years. I tried all the 5-ASA drugs but they make me even worse. I’ve also tried pred(which helped a little) and the amino acid therapy the past three months which obviously didn’t do anything.

I’ve thought about a lot about surgery and have decided that I don’t want a j-pouch - I know they work great for some people but frankly I don’t care to risk dealing with any j-pouch complications. So that leaves an ileostomy or Remicade. My only concern about the ileostomy is that I’m a single guy and I’m concerned about dating and sex. My concern about Remicade is that if it works I still have to worry about colon cancer which means scopes every six months according to my doctor.

Remicade can up your cancer risk but that doesn't sound right to me about the colon cancer, unless the Remicade does not put you into a complete remission. I always thought it was other types of cancer you have to worry about. If it worked to put you into a remission then scopes every six months would seem very extreme, unless they are just really worried about your dysplasia, which is probably the reason. You are facing a touch choice. Good luck with it. I'd say if you have time to try the Remicade but if colon cancer is a major risk it might be better to bite the bullet and do surgery.

We got almost 4 great years out of Remicade. Cancer risks are quite low. Infection risks count, but ongoing damage to your colon is a more immediate concern. Even surgery is best done when you are healthy. Most docs do not need frequent scopes just for a biologic. It must be for another reason. My two cents...best to you whatever you decide.

Thanks so much for the quick replies. The people on this site are amazing. I can't imagine going through something like this years ago before the internet when you were basically on your own.

Scopes every six months? That's ridiculous. My doc says every two years while on Remicade, and we even let that slip while I was unemployed and needing to be careful with money and doing so well.

Very personal decision. I am very happy on Remicade, and do not worry about the rare possibility of cancer because it is totally worth it to me to have such a better quality of life.

Can't they do blood marker tests for colon cancer? Good luck whichever you choose. I would go with every drug you can before removal. I don't want you to look back and wonder what if.

Three years ago I opted for a permanent ileostomy instead of Remicade and I didn't even have dysplasia. I just didn't feel like taking such a strong drug that would impact my immune system for the rest of my life. I tried an infusion anyway just to get out of the hospital and heal up for surgery and it gave me horrible side effects (joint pain) anyway so that only confirmed my decision. I think had I had dysplasia it would have made the choice even easier for me.

Listen to your inner voice on this one. Everyone has their own set of values and what one person chooses to do in a situation will be different than another. Because I was confident that my choice was the right one for me and my lifestyle, I am completely happy with my decision and have never once wondered "what if". I too did not want a j-pouch... partially because I didn't want to risk complications and go through multiple surgeries but mostly because I felt the permanent ileostomy would be a better fit for my favorite sport of rock climbing. I am frequently up on cliff faces all day with no access to rest rooms. It is a lot easier to swap out ostomy pouches and pack them out in that situation. As far as intimacy... I am married (and a female) but it has caused no issues. Getting my ostomy was one of the best decisions of my life and I am incredibly happy with the results of my surgery. I love having my health back and doing everything I enjoy again. I eat what I want, hang out with family and friends, do lots of sports, and never have to think about bathrooms anymore.

Because I am confident and comfortable about my ostomy, I find people are totally accepting of it. In three years, I have not had one person treat me differently because of it and I am very open about my surgery.

"My last scope was in April 2009 and it was pancolitis. Four years later it’s still pancolitis. At first he recommended Remicade but since the biopsies showed possible dysplasia(which also was on my last colonoscopy in 2009) he’s suggesting surgery.

So far I’ve tried SCD(for a year and half) and ended up with pancolitis"

i'm cornfused ! (nothing new)

when and with what were you dx'd ?

how do you know it's panny w/o a scope ?

Well, I think I'm well known around here as a huge proponent for surgery (super happy with my outcome) but I would definitely try Remicade before going ahead with surgery if not for the dysplasia. My UC came on so fast that I never had to deal with a finding of dysplasia so I don't know that much about the right course of treatment. May I ask how old you are? After having pan colitis for 20+ years many docs will recommend surgery because the cancer risk just gets so high, so I can understand cutting your losses now and doing it while you're as young and strong as possible.

Regarding dating and sex, don't let that factor into your decision about the ileostomy. I had an active personal life for the seven months I had an ileo and it was not an issue. You'll find that the people who believe an ileo ruined their personal lives actually self sabotage with poor self esteem and a victim attitude. Make the best decision for your health and be confident about that.

Haha, NCOT I truthfully was NOT talking about you. Right after my first surgery I read a different Ostomy message board (not on HW) and it was full of topics about how people's husbands and wives wouldn't sleep with them anymore, that they were resigned to being alone forever and that "no sane person" would date someone with an ostomy, etc etc. It's out there if you look for it but it's COMPLETELY RIDICULOUS. It was clear those people had become so obsessed with their ostomies that they just assumed no one would want them and it became a self fulfilling prophecy. I and many others have had a totally opposite experience.

I a person who opted for surgery and am having an awful time. Right now, I'm still ok with the decision.

The biggest question I would be asking myself is if the Remicade (or Humira or anything else) would actually help the displasia. Then, I would find out the cancer risk given that you already have displasia. I think that would drive my decision more-so than anything else.

Pluot - I’m 47. I’ve had UC for about six years. As far as sex and dating goes I know it’s all about my attitude. I’m a confident guy and I’m not shy about telling people even now that I might have surgery. I think the only reason the sex issue has even bothered a little bit is because it’s the unknown. If I have surgery I’m the type to be very open and positive about it. It might limit one night stands but on the other hand maybe not.

Blueheron - I love your blog and your attitude. I’ve never climbed a mountain but reading your blog makes me want to. Your post on why you decided on an ileostomy over a j-pouch was great and very informative. I have to say my inner voice is strongly telling me to have surgery and an ileostomy and the little fearful voice in my head is telling me to try remicade.

ActiveUCer - I really feel for you and I hope you’re doing better. Crohn’s and Ulcerative Colitis are tough diseases and there are no easy options. We all make the best choices we can at the time. A year from now I might think I did the right thing or I might think “darn, that didn’t work out so well.”

My gastrologist was ready to start Remicade until he got my biopsies back. He called me on a Friday after he was off of work to let me know he thought I should consider surgery. He’s a great doctor and willing to let me try Remicade if I want but he’s very concerned about my high risk of colon cancer.

I tried remicade and it was my last hope. I did not have a choice I had to lose my colon. I lost too much blood and had to get a transfusion. I have had a j-pouch for a year now and I can not say it has been easy. You should try all your medicine options while you have them, because the longer you wait the less likely they would work. No matter what you choose you have to come to terms that surgery is a high likely hood of happening especially at the problems you have. I am eighteen now and already had the worst thing that could happen. I hope everything works out for the best.