Seeking advice on surgery for ulcerative colitis

Army wife
Jan 29, 2013 4:34 pm

Hello, I am new to this site. I would love any advice. I have had ulcerative colitis since 2009. I have not been in remission since April and I am on several medications. I have an appointment with a surgeon in a few weeks. I know that removing my colon is the drastic last resort move. My life is so miserable now being tied to the toilet. Will surgery improve my quality of life? Or should I keep taking medicine that makes me feel like crap (pun intended) and not placing me in remission. Thanks for any advice.

Jan 29, 2013 6:37 pm
Hi AW. I am concerned because you are seeing a surgeon so soon after developing ulcerative colitis. I had colitis for over 25 years before surgery came under consideration, and that was only because precancerous cells showed up on my yearly colonoscopy. I take it that you have had constant inflammation for about nine months and your meds are ineffective. I hope you have gotten second or even third opinions from top-notch gastroenterologists before visiting a surgeon. No disrespect to the military, but many Army doctors are right out of residency. After a few years with my doctor and no dramatic improvements, I went to a New York specialist who gave me back my life with a change in meds. Sure, we all want to avoid taking steroids but a proper regimen will control the bleeding in most cases. Colon removal is the last resort but it's possible you may be a good candidate for a J-pouch. It worked nicely for me. Above all else, make sure you go to the best doctors you can find. Be assured that, just as there are good teachers and bad teachers in every school, there are good doctors and bad doctors in every community. Do the research and do not put your life in the hands of mediocre physicians. Good luck! PB
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Jan 30, 2013 12:58 am

PB, you give good advice. However, everyone is so different. I suffered with UC for less than 2 years. In that time, the steroids did not control my symptoms but also destroyed my hips. By the time I was 25 years old, I had a permanent ileostomy and bilateral total hip replacements. I'm not complaining, I thank my lucky stars every day. Both surgeries, although not without complications, gave my life back. Some cases progress so quickly and severely that meds are not the answer. I had total faith in my surgeon and do believe you should look until you find one you can trust.

Monsieur Le President
Feb 01, 2013 2:00 pm

I was on steroids for about 8 years until my operation in 1974.
Although still relatively fit, I developed diabetes about 20 years ago.
I also had arthritis in my hip, which has now been replaced. I put this down to playing rugby for too long.
I now think, though, that both conditions were not helped by the long use of steroids.

Feb 02, 2013 8:38 pm
Hi there, while I haven't been in your exact situation so I can't give advice on that, what I can tell you is this. I have Crohn's disease and before my ostomy, I was, like yourself, always needing the toilet, and it was ruining my life. My surgery was an emergency and if I hadn't had the ostomy, I would have died, so for me, there was no choice. I know now it will seem like a big deal having to have an ostomy, but believe me, when you can get back to living normally and being away from a bathroom without panicking, it is so definitely worth it! Sophie x
Words of Encouragement from Ostomy Advocates I Hollister
Feb 02, 2013 8:54 pm

Hi, despite all things and complaints, I know I would not be alive except for the surgery. I lead a relatively normal life compared to the misery I lived in before surgery, but only you can make the decision. I did not have a choice.

Feb 03, 2013 12:22 am

Hello Army Wife. I was diagnosed with Crohn's over 20 years ago and they wanted to take my colon out then and I would not hear of it. I found an aloe vera called Digestinol that put me in remission and it worked for me for many years with no medications. As a matter of fact, I went 8 years without a flare only on the aloe vera. Last October, I had been sick for 30 months with a flare and had multiple abscesses and had no choice but to have the surgery. Seek some other medical opinions before you even think about surgery. I got 2 opinions before I had my surgery. Good luck.

Feb 10, 2013 11:04 pm
Hi Army wife! I had ulcerative colitis for many years - most of them I was in remission. It was like I never even had the disease. Then out of the blue, about 6 years ago, I began to have the most horrible flare-up ever. I was miserable and on many medications, but nothing lasted. I dealt with the flare-up for about a year. I was missing work a lot as well as social activities. After that miserable year, I finally agreed to the surgery. In the beginning, when you're recovering, it's pretty awful, but once you get past that, your life really does come back! It has been 5 years since my surgery and it has been a wonderful decision. A year ago, I also had my rectum removed because it was bleeding and painful because I evidently still had colitis in the rectal stump. Again, recovery wasn't too pleasant, but I am sooo happy now that I did it. My life is completely back! I do everything I did before - swimming, biking, camping, and remain a full-time fourth-grade teacher. There comes a time where you just can't take the flare-ups anymore and I am so grateful that I was given this second chance to live a normal life. Good luck to you.
Feb 10, 2013 11:34 pm
Hi Army Wife! I don't think anyone really wants surgery, but if you are at that point and everything goes well, it can certainly give you your life back. We're all different - I had Crohn's for 10 years that never really responded to medication and just got worse and worse. I had my colon removed 2 years ago with a permanent ileostomy. It might sound bad, but it has allowed me to rejoin the world! Bottom line, I hope you can avoid surgery as long as possible. But if it needs to happen and you have a good surgeon, it can put an end to a lot of misery. Good luck!
Feb 11, 2013 12:44 am

Hi Army Wife. I had UC for 20 years before I submitted to a permanent ileostomy, and that was 23 years ago. I never had any remissions, and only agreed when it appeared I would die. I wish I would have done it years sooner, so I could have quit living in toilets and had more of a life. I opted not to have the J-pouch or similar procedures, as there were so many complications with those, and I eat on an irregular schedule. Good luck - it was a lifesaver for me. I am now 60 years young and from what I read, there still aren't drugs that are all that great. I was on heavy drugs, including steroids, for the 20 years I was ill.

Feb 11, 2013 4:28 pm
Hi Army wife, I too had UC in 2005 and was put on a course of drugs for 6 months and was told that there are only 1 in 40 that these drugs don't work on, guess what, I was the one. When I asked what my options were they said that I could have the complete removal or die a slow painful death as the UC had gone all the way around my colon except for the last 9 inches. No choice, I said take it all away. My operation was on Friday 13th October 2006 @ 1300hrs, how's that if you're superstitious? I shall be 71 years of age this year, widowed and care for myself, ok I've got some side effects such as Vasculitis, Arthritis, Osteoporosis, Chronic bronchitis etc, etc, etc. But I've got my life and 3 years ago I bought a sea-going cabin cruiser which I live aboard all summer and go cruising and fishing. I can't tell you what to do regarding your proposed operation but if you've got a positive mental attitude and strong family support it bears thinking about to get rid of your crap life.
Whatever you decide, good luck and God bless

Feb 11, 2013 6:39 pm
Hi AW, I was diagnosed with UC in Feb 1962 and had surgery in May 1962. My case was very aggressive hence the short time between diagnosis and surgery. At the time of surgery, I was 15! They left in about 18" of colon and rectum hoping it would heal. It didn't happen, and I had surgery to remove the rest of the colon in 1965.
I have lived a full life, married, a child, a career, hobbies, etc. I turned 66 last week and celebrated 43 years of marriage Friday. You will be able to do whatever you want after surgery. Yes, there are problems that happen, but you learn to deal with them. Yes, it is a difficult decision to make, but if you are "tied" to the bathroom, you don't really have a life.
I have traveled extensively, and my wife and I are avid RVers. So, now it's up to you and your family to make a decision. Good luck!