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Posted 7/5/2011 4:36 PM (GMT 0)
can surgery permanently cure uc, what kind of medication after ileostomy, and why ileostomy why not j-pouch

Post Edited (mumbai39) : 7/5/2011 10:45:57 AM (GMT-6)

Posted 7/5/2011 4:53 PM (GMT 0)
Well, there's no colon anymore so technically there is no more ulcerative colitis.
Posted 7/5/2011 5:30 PM (GMT 0)
Saying that surgery is a cure for colitis is like saying a leg amputation is a cure for gangrene
Posted 7/5/2011 6:00 PM (GMT 0)
LOL mudua... your statement is funny and true! However, Dr-A is right when you remove your colon, you remove the colitis! For people like me, resistant to all tried meds and diet changes surgery was a fantastic option! I just threw away 18 bottles of UC meds and pain meds because with my ileostomy I don't take ANY meds! I still have 2 more surgeries before I have a working j-pouch but it's ok because I went from being home bound on the couch all day in pain to now leading a normal life again! UC destroyed my chance at a normal life for the past year and I wasn't going to give it any more of my precious time here on earth! I was sick of watching the world go by!
Surgery and j pouches can come with their own set of problems for sure! I'm willing to take that chance. Post after post I've read from people that had surgery said their only regret was not doing it sooner. I think more often than not, surgery can offer you a better life than dealing with UC... but that's just my opinion!
Posted 7/5/2011 6:07 PM (GMT 0)
No, surgery does not cure UC:

www.internalmedicinenews.com/speciality-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

http://www.ibdsupport.org/forums/topic/116136-help-post-surgery-nightmare/

Many more stories and studies like this.

In my opinion, surgery should be the very last resort, to save your life.
Posted 7/5/2011 6:11 PM (GMT 0)
as I said: surgery and j pouches CAN have their own set of problems BUT the colitis IS gone!
Posted 7/5/2011 6:53 PM (GMT 0)
Thanks for the links beatUC.

"Indeed, colectomy wasn't the end of the story for the majority of ulcerative colitis patients who underwent the procedure in Olmsted County, Minn., during 1940-2001. The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."

On learns something new every day.
Posted 7/5/2011 8:13 PM (GMT 0)
beatUC,

In my opinion, surgery should be the very last resort, to save your life.

I agree 100%!

Posted 7/5/2011 8:21 PM (GMT 0)
beatUC,

Thanks so much for posting these links!

Posted 7/5/2011 9:18 PM (GMT 0)
It's a loaded question really. If there is no colon, there are no ulcerations in the large bowel anymore. Doesn't mean you are not going to have another "itis". Doesn't mean your problems are over. Doesn't mean they got the diagnosis right. Doesn't mean you have no surgery complications. Auto-immune means your immune system is jacked. You only had a colectomy, not an immune-ectomy. This is the medical model of thought though.
Posted 7/6/2011 12:20 AM (GMT 0)
Dr-A,

Well said.
Posted 7/6/2011 1:48 AM (GMT 0)
the UC is gone, as they have all said, with no colon there is no UC, there can be complications, but regardless of those complications there is no more UC.

many times when there are complications it is due to a misdiagnosis of UC when it was actually crohns.  And there can be other things that go wrong.

However i don't understand why people are so down on surgery for UC, when noone would give a second thought to having a cancer removed, or a busted appendix

mumbai-some people choose ileos instead of jpouches.  If there is a question of diagnosis and the possiblity of crohns, many times it will be an ileo.  sometimes drs don't want to do jpouches because of age or other extreme health problems where they feel the added surgeries might be too hard on the person.  Or people, like me, just want it over and done with.  I only wanted one surgery, i didn't want to risk pouchitis, or pouch failure (which is VERY rare) and i honestly never wanted to go to the bathroom the regular way again! 
My UC i gone, my days of sitting in the bathroom and worrying about what to eat and when to eat it are gone.  My days of sitting at home doing nothing are gone.  Someone asked me the other day how many pills i used to take a day, my answer was 22, now my answer is 4 (they are non UC related) and that 22 didn't count the contant immodium, and advil and pepto bismol and acid reducers.

 

Posted 7/6/2011 1:55 AM (GMT 0)
i just read the links given above, the second link is about someone with possible crohns, a misdiagnois.
the first appears to to be mainly about jpouchs and the possibility of obstructions, obstructions are no UC, they are obstructions.
Posted 7/6/2011 2:23 AM (GMT 0)
summerstorm - I don't think it is fair to equate colectomy with removing a tumor or an appendix. Neither of those serve a purpose in the human body and the former is actually harmful. The colon, on the otherhand, serves many important functions.

I do agree however that the first article is a little misleading. It advocates an interesting definition of curative which is on a much wider scope than refering to just UC. What I think it is trying to say though, even if they are a little in-your-face about it, is that we shouldn't expect colectomy, and especially j-pouch surgery, to be a miracle cure with a fairy tale ending. Yes, the UC is gone because there is no colon (so in that sense, to answer the original question on this post, yes-surgery does cure UC) however the surgery poses risks and complications of its own which become more likely as post-surgery time increases.

I think it is important that everyone recognizes that surgery is a viable option, especially those whose quality of life is too radically affected by this disease. However, I too agree that surgery should be a last resort when all other acceptable options have failed.

I like to think that if I hold out long enough another drug or therapy may pop up which turns out to be my miracle cure. Wishful thinking, I know, but its important to be optomistic!
Posted 7/6/2011 2:37 AM (GMT 0)
i realize that the three things are not the same, however my point is, all three things are making the person sick, all three are draining the body, and while a colon does serve a purpose, it is not necessary, the body can function just fine without one. Maybe i should have compared it to a gall bladder, it does serve a purpose, but a bad one makes you very sick and miserable.
Posted 7/6/2011 3:09 AM (GMT 0)
My doctors told me no colon, no uc.

I posted this link in another thread...the argument on why not wait to have surgery.

http://www.everydayhealth.com/colitis/webcasts/colitis-and-surgery-why-you-shouldnt-wait-too-long-transcript-1.aspx
Posted 7/6/2011 4:00 AM (GMT 0)
Mumbai39,

There is not an easy answer to your question. You need to start by talking with your GI and making an appointment with the very best colorectal surgeon that you have access to and start asking them questions.

This is very major surgery and has a lot of judgement calls that need to be made along the way. The most experienced surgeon is your best bet at achieving a positive outcome.

You ask if surgery is a cure?....all I can tell you is that my son was terribly ill for a couple of years, his life was out of his control and we were terrified by the thought of years and years of these hard hitting drugs. The medications were already taking a serious toll on him. He took a year off of school to have his surgery done in 3 steps. I will not lie...it was a very difficult year. These surgeries have a high complication rate and he had more than his fair-share. However, he is now about a year post his takedown and is HEALTHY in every way. All blood tests come back completely normal, he can make plans and know that he will be able to keep them.

He has 5-6 bowel movements a day and thus his life has changed from what it was pre UC. However, he has NO pain, NO urgency and the ONLY meds that he takes are some imodium every now and then. There are people on this site that say that surgery should be only a very last resort but when I see my son laughing easily with his friends, able to hold down the job he wants because he is not calling in sick all the time, making plans for the future that he knows he will be able to keep and just living life exactly the way a teenager should……I say a silent “thank you “ to his surgeon who, in my books, has cured him in every way that is important.

We know that pouchitis needs to be on our radar but we also know that almost all cases are very easily treated with a course of antibiotics. We also are aware of the possibility of future bowel obstructions but we have been that course already and know that the possibility is much greater that there will be no more issues.

You also ask about J pouch VS ileostomy. There are pros and cons to each and this should be discussed with your doctors.

Surgery is not for everyone. The majority of Ucers will never need it but there are many who are tired of their life being out of control and tired of or not wanting to try the numerous medications that are all know to have side effects. As well there are those who become so sick that they have no option. The take home message is to talk to numerous doctors and people who have been through this so you can take your time and make a fully educated decision. Surgery is and should be a very personal decision. It should also not be thought of as giving up. It is a very courageous person who looks at all the facts and decides to take the difficult route.

I know you asked a one-sentence question and this is a very long answer. However, lately there has been a lot of controversy on this site concerning surgery. I just want to really point out that you should talk to numerous doctors, become FULLY educated to ALL the pros and cons and then make what, is to you, a very personal decision. Just know that there are many of us who believe that surgery has been a blessing and our only regret is that we did not do it sooner.
Posted 7/6/2011 5:06 AM (GMT 0)

Collicat said...
Just know that there are many of us who believe that surgery has been a blessing and our only regret is that we did not do it sooner.

Totally agree. Like others have stated I was one believed that surgery was a crappy "cure" a kinda of giving up, a last resort only to save my life and I didn't want to do it. But then low and behold I did have to have surgery to save my life. I waited too long against advice of multiple doctors to have my colon removed and then my colon perforated and I was literally dying when i was taken to surgery. But it was the best thing that has happened to me related to my health in a long time. I had NO life with UC now I've been mostly UC free for 10 months and completely UC free for 4 and its wonderful. Yes surgery has risks, as does ileostomies and J-pouches but so does holding on to an organ that is damaged. (Plus failure rates are actually very low and even complications aren't that high if you take the precautions you should. The internet is full of the few that are having problems, not the people that feel great and are out living) If you wait too long you may end up like me and having forced surgery which is much more risky and you may not survive. I'm kicking myself for not doing it 3 years ago when i was told it was my last option. I take no regular meds, just a probiotic 2x a day and when i had my ileo i had to take Imodium with each meal. With J-pouch depending on how your surgeon does things, there may still be a slight risk of UC reoccuring in the space in between the anal canal and the rectum, but it is extremely rare, like 2 or 3% at most it may even be less. Some doctors strip this area which gives you less control but also less risk. (I'm unstripped so my surgeon will be with me for the rest of my life. That's just how she does things.) With Ileos, its all gone no more risk and unless you were misdiagnosed with Chron's you won't have anymore UC problems. That's not to say that you might not develop other autoimmune diseases over time since one puts you at risk of others like so many here that have RA as well. That risk does not go away with the removal of the colon. In my opinion, if you are at the point where you are considering surgery, do it. If you feel well enough that it doesn't cross your mind then it isn't for you. Thankfully most people don't need surgery, but if you feel its time to consider it then you more than likely are at the point where if you get it done you will be thrilled with the result.
Posted 7/6/2011 9:50 AM (GMT 0)

sconnie said...


I like to think that if I hold out long enough another drug or therapy may pop up which turns out to be my miracle cure. Wishful thinking, I know, but its important to be optomistic!

Hi sconnie,

My two cents (whatever they're worth in these days):

One of my bathroom library's ( I finally learned to take my time and not to rush the BMs) magazines includes and issue with a headline:

An Rx For Every Disease

"A protein killer could treat all cancers, and possibly all illnesses," it starts. The first test started with 19 cancer patients whose liver tumor had not responded to any treatment. Within a week it appeared to bite.

The article states that with slight modification the drugs could potentially bite to all known diseases, and it's known as RNA interfere therapy, and it can trigger the ancient body's mechanism of the antiviral RNAi to regulate the mNRA to selectively halt the production of of specific proteins.

That ability of the RNAi makes it potential fix for many diseases. "We can turn off any of the 20,000 genes off with RNAi," said the main researcher at Duke University. Several researchers are tackling numerous disease from cancer to MS.

"The RNAi therapy should be ready in two years." The magazine is a year old.

In the same magazine there was story about a 16-year-old youngster who had developed a more accurate - than currently available - test for detecting faulty DNA in urine. It's the first test to detect cancer growing outside the urinary track.

I'm all for wishful thinking. It has served me well for the last 36 years with the UC, not to mention that there exists thousands of labs around the world trying to find the cure for every disease.

Why not stay optimistic?

All the best.

P.S. This from the Mayo clinic: Ulcerative Colitis Treatment Reduces Need for Surgery by Almost Half. http://www.disabled-world.com/health/digestive/ulcerative-colitis-treatment.php
Posted 7/6/2011 10:30 AM (GMT 0)
Really, truely: No colon, no UC. No matter how you slice it and dice it, that's the end result. It's just not there anymore. Living proof here. Yes, some folks still will have the arthritis associtated with UC.
Posted 7/6/2011 10:39 AM (GMT 0)

ByeByeUC said...
Really, truely: No colon, no UC. No matter how you slice it and dice it, that's the end result. It's just not there anymore. Living proof here. Yes, some folks still will have the arthritis associtated with UC.

BBUC,

Have you any idea as to how many UC'ers go from diagnose to colectomy without ever really reaching remission or any drugs working? I've been unable to find any statistics on that.

Thanks in advance.

Enjoy your day.
Posted 7/6/2011 11:19 AM (GMT 0)
Kiwi,

No I have no idea what kind of number that is. Would be interesting though. I really don't get this "being pushed into surgery" thing. All I can invision is a dr. holding a gun to someone's head...lol. But seriously, people have minds of their own. I can't imagine being newly diagnosed and just making that leap into surgery. It took me 6 long years of trying everything I could before having surgery.  It was suggested to me by my sister over and over again who has had a j pouch for 20 years (she's done fab by the way) to have surgery from day one. I was like NO WAY! I guess some people can be easily persueded, but I wasn't one of those people.  A dr. mentions surgery and you say no....simple as that. Wasn't this all debated not long ago on another thread?? I really don't want to change the subject of the OP's topic.

Posted 7/6/2011 1:43 PM (GMT 0)
Kiwi, How is wanting to be cured not optimistic?

Mumbai, My son had surgery last november, he now has no UC, no excema, no anxiety, no joint pains, no poop pains, no blood in his stool, no medications that are going to give him lymphoma. he went from having horrible explosive, painful bloody D several times a day his entire life, infections from suppressing the immune system, always being tired and anxious and missing about half the time at school and unable to controll himself the other half because of steroids. Now he has several small BM's a day, there is no blood, pain or urgency. he can hold it as long as he needs to without any anxiety or discomfort. he's not sick and tired or malnourished like he was with UC. he's not taking medications that make him psychotic or susceptible to infections.
Had I known 5 years ago what i know now, surgery would have been our first priority. if my daughter developes this disease in the severity that my son had it we will have her cured as soon as possible. i would rather die than have either of my children suffer through all that my son endured before surgery.

Treatments work for some but not others. surgery is not for everyone. if you can controll your disease with diet and/or drugs that you feel comfortable with than surgery is not necessary. but if you are basing every decision you make on your ability to get to the toilet, are unable to attain remission through whatever you consider reasonable means, or feel that your quality of life is less than you are happy with than surgery can cure your UC and change your life. the colon is not a necessary organ and in fact a diseased one can cause more harm than good.
Posted 7/6/2011 2:02 PM (GMT 0)

Chris'sColon said...
the colon is not a necessary organ and in fact a diseased one can cause more harm than good.

agree with the fact that a diseased and irrecuperable colon can cause more harm than good.

not agree with the fact that is not a necessary organ, because our immune system is built mostly by our gut contact with the microorganisms that live in it. probably you've meant that is not a vital organ, and one can live without it.
Posted 7/6/2011 2:18 PM (GMT 0)
The human body is a remarkable thing. It will adapt and adjust to your colon being absent. As time goes on your small intestines will start to "take on the role" of your colon. My new plumbing has already started to adapt...my stools are formed now not liquidy like they were right after surgery. Will it ever be the same as a healthy colon? No, of course not but it does adapt.
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