I spoke with my doctor yesterday. I informed him that since my first Remicade treatment, my UC symptoms are gone and I feel much better. He told me that he had thought about my situation and tried to place himself in my position. He recommended that we postpone the surgery for now, continue on the Remicade, and do a colonoscopy in 6 months. I asked him if he felt comfortable with this plan. He told me that he did. He also said that if he were in my position, he would want to know that he had tried multiple options before choosing surgery.

I have tried to view this in a cautious but positive manner. Is it possible that I could find treatment that might prevent the need for surgery? This is only the third medication that I will have used. Perhaps at best this will give me more time to wrap my mind around my situation. Anyone have thoughts/experiences they'd like to share?

I would tend to agree with your doctor's cautious wait and see approach, especially since you seem have to responded postively to the remicade treatment.... unless of course you have any indications of dysplasia like some of us have had....then I would have the surgery pronto. But since u do not indicate this to be the case, you want to know that u tried your best before relinquishing your colon. Hattie

Since j-pouch surgery is not without significant risks, there are few instances where it is the best or first choice. Those instances are findings of cancer or high grade dysplasia, toxic megacolon, refractory disease that does not respond to medical management, and the last being intolerant of or a preference not to take drug treatment.

As long as you are willing to follow through with medical management, there is nothing wrong with continuing with it, if it maintains your remission. You never know, it could buy you time for new breakthroughs to be discovered. If I had surgery the first time I had a major flare, my only option would have been an end ileostomy. Waiting 23 years made a big difference in my outcome. Of course, there is no way of knowing how long you will remain in remission, so it is a good idea to get fully informed about your surgical options too.

Sounds like your doc has a good head on his shoulders.

Jan

Despite all the odds and about 5 major relapses with UC involving hospitalisation and six months to recover each time I managed to hold back UC for 30 years. I am now 53. In the main my life has been normal. The docs admit that it was me that kept UC at bay for so long.

A couple of years back I was told that I would never need surgery, but UC got me again big time and I had the op.

On the whole, because when I was in remission I was mainly normal, I would do anything not to have the operations.

So I managed to fight UC off by doing and taking the following, but remember we are all different:

DO THIS
Manuka Honey - antibacterial and healing. All proven.
VSL#3 probiotics - tested, proven and works.
Omega Fish Oil - anti imflamatory, proven, also good for the bones
Vits C and B - good for you, no ill effects.
Calcium, magnesium with zinc - good for your bones (this is important to counter the side effects of steriods if you have to take them long term. Steriods narrow and weaken bones).
Keep fit.
Eat healthy foods.
Relax and enjoy life when you are well.
Some people have said that vit E is also good, but careful as this is strong stuff. Read about it first. I have heard of people curing UC with Vit E enemas. Not sure about this.
Hang on for two years if you can. There is going to be a breakthrough with some research in Oxford UK. They have found 16 genes that are attributed to UC and they reckon they can switch them off. I know because they used tissues from me to perform some tests. This is not a false hope.

DON'T DO THIS
Get food poisioning - double up on VSL if you do.
Eat spicey foods.
Eat bananas, tomatoes, too many nuts particularly walnuts,beans or anything that you are not sure about. Your body will let you know.
Eat foods with high ruffage - scours your bowel (OK for IBS but not UC).
Go careful with booze - but I never did.
Don't get stressed up. Chill.
Don't take aloe vera despite what everyone tells you, this is bad for UC. You could try Molo Cure (or similar) which is derivative of Aloe Vera and meant to be very powerful for UC. But could be a con, anyway I took it (very expensive).

As always, I appreciate the responses.

Jan, I really admire that you display such tremendous knowledge, compassion, and courage in your postings. I agree with you, my doctor does have a good head on his shoulders. He is an extremely confident man. I wouldn't want it otherwise! I asked him point blank if he is an excellent surgeon. Without hesitation, he responded, "yes."

Fenners, I also appreciate your perspective. I hope that you're right about a break through coming.

For me the UC is or should I say has been bearable. My concern is that it increases the risk of cancer. I lost my father to colon cancer and want to make sure that I take every procation to avoid the same fate. To do otherwise would mean that I learned nothing from my father's death.