surgry for ulcertive colitis

Depends on so many factors...for example, your age: I would not wish another 40 or 50 years or more of constant or regular flares on anyone! And urgency is the most unacceptable symptom to deal with, in my view.
I sorta wish I had surgery when I had a different kind of job (and was part of a team, instead of the only person doing my job), early in my career.

You should consider surgery when the symptoms affect your life more than you're willing to tolerate and you've tried enough medical remedies to feel you've given them a fair chance. That could be three months after diagnosis or three decades, depending on your symptoms and tolerance. In the meantime, be sure to get your regular colonoscopies because if you start to develop dysplasia, you need to factor that into the equation also.

If your sick and tired of being sick and tired from UC and really considering the surgery, then it is probably time to go the surgery route. GI doctors are trained to save the colon at all costs and make surgery the last choice. I think taking the drugs for UC long term are worse than UC. I just don't think they know what we go through and they are happy that you eventually die from liver and kidney failure 30 years from now from the UC drugs rather than dying from UC, but at least you got to keep your defective colon the whole time as a consolation prize!!! Just nuts.

I learned that a lot of doctors and even nurses are closed minded and cannot think outside the box or connect the dots, they just learn what they read in medical books but don't truly understand the whole ramifications of all of the diseases the read about. The hard part is finding a doctor that can think outside the box and connect the dots and are just not there for the money. I got rid of my first GI specialist - supposedly the best in the area - because he couldn't think outside the box.

The one thing he was right about is that life is never normal after UC, but you can get it as close as you can. If you go the surgery route, you basically have two choices, permanent ileostomy or j-pouch.

I had an ileostomy for 9 months and felt 100% normal 3 months after they took my defective colon out. I was off all meds, eat and drink everything and was able to sleep 8 hours a night consistently. The only thing was changing the bag and having it hanging there all the time. Never had leaks or anything, but something different, but truly felt 100% normal and didn't really have any limitations activity wise. Some people have psychological issues with the bag and cannot stand it whether they have issues with it or not, but I never that trouble.

I'm currently 6 weeks post op from the J-pouch surgery. This surgery was a little tough and recovery is slow. The pouch is working good but I'm experiencing a lot of butt burn currently. They say this goes away with time as the pouch gets bigger and you go to the bathroom less. But now I'm watching my foods again, keeping them bland and drinking only water. I'm still off all medicines and hope to keep it that way. I guess I'll just have to wait and see what happens next year and hopefully the butt burn thing goes away. I would hate to live life constantly worrying about that.

If worst comes to worst, I would go back to a permanent ileostomy. Either way, the surgery route is much more better than living with UC and being dependent on drugs.

Hope this helps.

it took me 8 years of being sick and hospital trips and missing life to decide to do it, wish now i would have doen it the first day i saw blood!
The time to do it is, like has been said, when you are not able to live your life and the meds and such are not helping. If you are pred dependent it is also time.
You need a new GI, casue it's your choice. Mine talked me into trying remicade the first time i went in for surgery, wish i would not have. It worked for about 2 months, when i went back he still wasn't really keen on it but i said "either you find me someone to take this thing out, or i will take it out myself!" I was actually at the point where i secretly wised i would get toxic mega colon so that i wouldn't have a choice. I know, thats sick, lol.
But anywa, you can always talk to a surgeon and an ET nurse and get some more info.

I still am going back and forth on whether or not to have surgery. On the very few "good" days that I have, it makes me not want to go through with surgery, but I've been feeling so terrible lately and the idea of waking up and feeling the complete absence of disease sounds so wonderful, because right now it feels like my whole body is infected and withering away. I know it's probably time for me but I'm still scared sometimes when I really start to think of it, so I'm trying Remicade first and giving that a little bit of time before I make the big decision.
Everyone gave great advice, and they're all the reason I've ever even considered surgery in the first place and it sounds like a much more realistic option now than it ever did before. But the most important thing is that YOU are ready for it and you do all the research you can and go in comfortable with your decision. And as others said, don't let your GI dictate when you should have surgery- if you feel you're ready, then that's all that should matter.

Hi GISguy

I am a new member to this forum. I am 45 years old and had UC since 1989. I had the J pouch surgery in 2005, but the same did not do well and have been facing lots of problems and complications since then. Anyway, without boring you with my problems, I would like to deal with your issue of butt burns or what we call anal irritation. This happens because your colon has been removed and the enzymes reach directly to your rectum or J pouch and out through opening. This causes irritation. Lots of foods like citrus, bananas do cause more irritation. The best option for you is to apply some gel. I have used all gels and gold creams. Now I do use Metrogyl Gel. It is very effective and much economical compared to other substitutes. Use it before and after your motions. Keep the anal canal dry with tissue paper or cloth. Do not apply soap to the anal canal. Keep it dry and clean. This butt burns do remain for quite some time after the surgery, may be over 5 months. After that these flare up due to wrong intake of food. Chew your food properly to avoid obstructions. Chew everybite you take for at least 32 times to grind it properly. Avoid seeds. They also cause irritation. Avoid spicy food. As I am from India I do use Neem leaves boiled in water over the affected area.

Cheers. Wish you speedy recovery.

bbc - My daughter is 18 and just had the 1st step surgery. She was diagnosed in August 07 with Severe UC. Stopped responding to meds. She wasn't able to have dairy prior to the surgery everything was lactose free. Now she is able to have dairy. She is loving ice cream and milk.

malachy72 said...
Psa, come to NYC and Mt. Sinai hospital. I'm sure that they can improve on your surgery.

I do best when I take a daily dose or two of immodium. After j-pouch surgery, it's important to drink max fluids daily. You no longer have a large intestine to absorb your fluids.

Thanks so much Malachy for your kind suggestion. Indeed it is heartening to find helpful people on this forum. However, my complications are such that all the doctors in India have raised their hands and given up. I have a big incisional hernia as during the first stage my incision did not heal - the tissues did not form for over 5 months and it remained open. In between there were lots of complications like food obstructions, pouch reaction, some clotting/pus formation inside abdomin. In the interregnum I had this incisional hernia which is like an expecting mother. My waist line grows bigger day by day and from 34 has crossed to 41. Ha Ha ha. Throwing my weight around. Anyway somehow they did operate me for second stage and joined the ileo and made the J pouch operational in March 2006. I thought my problems were over, but just after seven days of surgery, when I went back home, my intestine burst; the ileo which they had joined back burst open and so did the stiches and the feaces started flowing from the abdominal wall. Anyway, somehow that got resolved and then the worst came over. I had big abscesses on my butts (left, right and center) in September 2006 which are still lasting and had lots of further invasive surgeries. Now since Jan 2007 I have horse shoe fistulas which were operated upon and fistuloctomy was done. But no respite. All the doctors have said that nothing can be done and I have to live with the pain as the fistula is communicating with J pouch and has perforated it and any action to repair would further damage.

So that is life. All medicines, remicade, medicated thread, homoepathic, ayurvedic have failed and still my will power is pulling me along. They suspected it to be TB of rectal wall and then crohn's but the biopsy did not show that. Fistrulas get filled up every fortnight. Anyway thanks for your help. I would get in touch with the Centre recommended by you. Thanks so much again.