Remicide vs Surgery UC Battle

Surgery is a step you cannot undo. Remicade you can always try and then lay off. I'd go with Remicade.

I say go for the Remicade. If it does not work then Humira. Then if that does not work J pouch. I'll try it all before giving up my colon. Not that I won't kick my colon to the curb if needed but not without a fight. I have only been on Remicade a short while but I have not caught anything or been sick because of my suppresed immune system.

Thank you all appreciate it

His situations changed and he is now bleeding heavily, we are monitoring him this morning and will take him to a&e if he starts going rapidly down hill, (he is terrified of hospitals) so looks like his decision needs making asap - thanks for all the comments

have you tried diet modification? That is, is he eating SAD (std american diet), or is he, say, gluten-free, dairy-free, etc.?

He has lactose intolerance and has done many diets, still not working ....

Also he has just started developing blood clots is this normal along with heavy bleeding? Every time he has a BM he has blood and also blood coming out without him noticing?

I would try remicade but that's just me. I used to think I would go for surgery if I were presented with biologic or surgery but now I want to keep my colon. I have seen too many stories of challenging lives after surgery. I've seen a lot of really positive stories too, but if I ended up one of the struggling people, life would never be the same again.

I have tried almost every medicine available; 5ASAs, Steroids, enemas, 6-mp, Remicade, Humira, Simponi and Cyclosporine (twice) over about a 10 year battle with UC. I've had 2 very long hospital stays (about 20 days each time).

My experiences with these medicines and UC have definitely made me ready for surgery and at this point I am ready to move on. If I could go back in time to when I first got DX'd I wish they said that your only option was to have your colon removed (and I didn't have a choice)...things may have been so much easier. But being in the middle of an ongoing illness sometimes is definitely overwhelming and you don't make the best decisions, not that I really regret my decisions but I just wish the outcomes were better because I am still going to need to have a j-pouch (so why didn't I do it 8 or 10 yrs ago?).

In the past 10 years there have not been many new medicines approved for UC until recently, within the last 4-5 months Uceris, Cimzia and Simponi have been approved by the FDA for UC and there are more medicines on their way. But I doubt there is a non-surgical cure around the corner.

My advice is if your partner needs to go into the hospital for the flare then consider surgery, why not get it over with if you are all ready there and leave with a cure. It's not the perfect cure but it's a lot better than leaving with UC.

I'd also advise anyone with UC to meet with a surgeon when they are healthy/remission, there are things that you may want to prepare for like freezing sperm, what type of surgery you want to have and also interviewing the surgeon to see if you want that surgeon doing your surgery. If you are in the hospital for a flare it is much tougher to make a decision with a clear head and you also will probably be assigned a surgeon. I've seen a few surgeons talking to other patients in the hospital and I knew that I didn't want them being my surgeon.

I had a conversation with my local primary care doctor who is also a GI and I asked him how his patients with J-pouches liked them and his answer was: UC patients were very happy with J-pouches but his patients that did not have an IBD and need it because of Colon Cancer or other issues were not as happy because of the increased BM frequencies.

Do your research on surgery, you'll find it's not all it's cracked up to be. Exhaust all other means before surgery, as others have said, it cannot be undone!

I'm generally a proponent of surgery, but I do want to point out that the statement "all these medicines lose their effectiveness over time," isn't accurate. There are UC patents who manage just fine for life on mesalamines, which have an excellent safety profile.

Again, I'm not at all bashing surgery. If I'm struggling and the meds aren't working, I'll defiinitely book a surgery consult sooner rather than later. I've done some reading and understand the options/pros/cons. I don't think it's necessary for me to see a surgeon, though, because I'm so well-controlled at this point.

fruitgirl said...
I'm generally a proponent of surgery, but I do want to point out that the statement "all these medicines lose their effectiveness over time," isn't accurate. There are UC patents who manage just fine for life on mesalamines, which have an excellent safety profile.

I'm talking about the medicines that keep you out of the hospital when you have a bad flare(10+ bms a day). The remicades, Humira, Cimzia, Simponi, 6-mp (most of the time) and others that lose their effectiveness over time. I know that people can stay on 5ASAs for a life-time but if you can then I doubt that you'll get to the point of a severe flare where you need surgery.

beatUC said...
"it's only a colon", I'd laugh if it wasn't so sad., it's only a kidney, it's only a liver, etc etc.
My statement on surgery not being all it's cracked up to be is based on my doc's opinion, 4 people I met locally who have had they're insignificant colons removed and much research. For instance, did you know that colon surgery has one of the highest suicide rates of any procedure? -this bit of info came from the surgeon who wanted to splice me like a fish.

I would assume that you suicide rate was more to do with people who didn't have UC and needed their colons removed. My Local GI said that his patients who had UC and needed J-pouches were very happy with their decisions and their improved quality of life but it was the people who needed their colons removed because of cancer or other reasons that were not happy with J-pouches because of frequencies issues and I'd assume that was also the case with ostomies.

By the way, the last time I was in the hospital (Mount Sinai in NYC) I shared a room with a J-poucher who his J-pouch was done in the early 90's due to UC, he had chronic pouchitis and was in the hospital to have his J-pouch removed for an ostomy. He was very happy with his J-pouch for the years that he had it and was willing to give up his J-pouch for a better quality of life and didn't want to continue with the similar UC symptoms that the pouchitis gave him. Since the 90's the surgery has come a long ways and he was encouraging me to have the J-pouch surgery. I also meet with one of the top colon surgeons in the country while I was there, he was doing 1-step J-pouches Laproscopically with a very high success rate.

I don't need a colon to live but I do need a liver(or part of one) and 1 kidney. I never said it was a simple decision to have our colons removed (it is very major surgery(s)) but the end of the day why would I want to continue this way if my life is constantly revolving around UC and flares? I've done the UC battle for 10 years and I've tried almost every single medicine available and if/when I need to go into the hospital again then they can keep my insignificant colon because it's only a colon and it's a colon that has given me too many problems over the years.