My name is Kimberly and I was diagnosed with Ulcerative Colitis in 1998 at the age of 13. As one of the worse childrens cases of UC I had a total Proctocolectomy and Ileostomy at 14 years old, then the J-Pouch surgery at 16 years old. Since the operations, about once a year I have a bacterial inbalance called Pouchitis. Its like a flare up but without a large intestine I don't have full grown ulcers, just flag ulcers--a cluster of small white ulcers located in my J-Pouch and small intestine. The doctors where puzzled why I am still getting sick after the surgerys, afterall they say a total Proctocolectomy is the cure for UC, while I'm here to tell you there is no cure. I do not have Crohn's Disease, like my of my doctors first assumed..I've have had numerous of tests to prove otherwise and the only sure test is to send a piece of intestine away to get it disected to show the layers of intestine affected (UC-2 layers, Crohn's-3 layers).
In short, I do not have Crohn's, I have I serve case of Ulcerative Colitis, which there is no cure for because I still have flare ups, arthritis, low grade fevers for no reason, and more symptoms of Ulcerative Colitis which I take medical to keep under control but it still affects my life, no matter what time of year it is. I could write a book about my life, but its not over yet...

I don't know who mislead you to believe there was a cure for uc.
you are left with 2 cn of rectum and that means you still have uc and can still get rectal cancer. that is why i was told to get an annual sigmoidoscopy and pinch for biopsy every 3 years. i have had my j pouch 20 years and i take no meds and have never had pouchitis.
i accepted my life many years ago. i don't have bleeding, pain, prednisone,blood transfusions, etc. i live a normal, healthy life. i have energy. i have a son who got uc, had a j pouch, had it removed and has a k pouch, 9 suregeries in 3 years. i am lucky.
drs are not forthcoming and patients expect to be like they were before uc and surgery. never.i am sorry you still have problems. maybe a different dr can offer a new prospective?

Yes, the drs definitely sell the surgery. I found most are just too proud of what they can do to share the realities of what happens when it doesn't work with potential patients. Nor do they remind people that the extraintestinal symptoms of UC - rhumatoid arthritis, iritis, etc... - do not go away with the surgery. But, remember, too, many people have great success with the j-pouch. It's just hard when you aren't one of those...

I had chronic pouchitis for 3 1/2 years post j-pouch. I opted to have my pouch disconnected but left in and a perm ileo created. I got worse and developed all kinds of new symptoms I was told couldn't be from the pouch. When I had the pouch removed 18 months later, all of my issues cleared up, even those I was told weren't caused by the pouch. I'm one of those people whose bodies just couldn't tolerate any remnant of colon or rectum.

Since pouch removal I've been 100% healthy. I've traveled, hiked, kayaked, take no drugs, eat whatever I want, had one baby and am pregnant with a second (I'm 36, had j-pouch at 26). I'm not saying this is your answer, but I am saying don't give up on finding an answer. You might not ever achieve the life you once had or the life other people have, but you can find ways to make your life the best it can be.

I was told I would no longer have UC I would be cured so I know where your coming from and they said life would be great well why wouldnt ya have the surgery.......

Little do ya know its a lie to make them money and take a chance and a gamble with your life I was better off with UC... I know what she is saying not all of us are lied to but you people would be amazined how many doctors lie to you.


I was told if I got pouchtis no big deal by 3 doctors give ya some antibotitics and your fine you may get some man problems give ya some viagra your cured no biggy.


What a load of crap all of that was lies I wish in my line of work I would get off that wasy I would of lost my license and been sued a million times... They should be more honest instead of the lies and mess with our life end of story and agree with you 100%

Its not like my doctors lyed to me, more like omitted the truth...time after time. Now my hips are going on me, they hurt like hell every day and they think its arthritis. I'm on anti-inflammatories and pain killers. I'm going for a MRI soon hopefully they found out whats wrong with my hips because there are so many posiblities; I was born with my hips dislocated to begin with and then I was on steriods for ulcers for about 8 months before my surgery, and I do have arthritis, my cousin has MS ( another auto immune disorder)...who knows whats wrong with me now?

Lies by omission are still lies. I was told "cure", with maybe some "bumps" in the road......I'm thinking I don't like the road...
LoriP

First of all I could write an epic novel about my life after surgery not just a book.My "doc" told me to,"Loose weight you fat @#$%&* or I won`t tough you", thats all she said.Didn`t mention anything about the countless risks involved with this type of surgery.Well guess what....I won`t go into what happened but let`s just say that I am in the same sinking boat!

E,
Did your doctor really say those words? I've never heard of such a thing. Please explain.
Bill

My surgeon was very upfront about risks and side effects. So up front that I burst into tears in her office at the thought of being incontinent, even occasionally! I almost opted to keep the ostomy bag because of the potential effects. Fortunately I came to my senses and did the pouch, and have been fortunate to have had good experiences so far (no incontinence either). I'm only about six months post TD but I think I've been very fortunate.