Ulcerative Colitis - Making decisions

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sxu05310
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/13/2009 12:17 AM (GMT -6)   
I know this will start to sound like an IBD topic but it is really an Ostomy topic...

I was diagnosed with severe ulcerative pancolitis (whole colon is affected) about a month ago after a colonoscopy.

First line of medication alone (Lialda) did little to help even after a few weeks (its supposed to start working relatively soon, my condition just kept getting worse).

Which means that in order to achieve remission I rely on prednisone and/or immunosupressors, both which have a number of unpleasant risks and side effects.

The disease is STARTING to come under some degree of control on prednisone and soon I'll have to go off that and switch to the immunosupressors to maintain remission, and hopefully that will work.

Having ulcerative pancolitis also puts me at a greater risk than normal colitis sufferers for colon cancer.

Is it bad that I am considering the surgery to have an ileostomy simply because I don't want to deal with the risks of cancer and the medicine? I know everyone says it should be a last resort type of thing to have ostomy surgery, but I feel like never having to deal with colitis again and not having to worry about colon cancer might be worth the risk.

Anyone have any advice or tips? Anyone been in my situation or have any ideas?

Thanks!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/13/2009 6:20 AM (GMT -6)   
I my opinion, if you are taking Pred and I/S you are NOT achieving 'remission', but its management of your condition. Don't think that it is bad to consider surgery...It is a VERY personal decision that no one else can make for you. Quality of life would be the ultimate factor, but it can be done at anytime you feel ready!

While my diagnosis is Crohn's, I did have a proctocolectomy, like Ron, but I didn't have the choice for a j-pouch. I haven't had any issues dealing with the 'new me' but I did have a temp ileo for many years before...so any issues I may have had I don't remember anymore!!! I am now med and symptom free:)

As far a clothes go, I wear what ever I want, without restrictions. You will find that placement of an ileo is VERY important and while I don't wear low rise pants, I can wear mid rise pants and I do wear a belt. It just depends on each person and what they feel comfortable with.

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 9/13/2009 6:34 AM (GMT -6)   
If I would have known how good my life would have been with the bag 19yrs ago, I would have had my surgery then. All those years on meds, and in pain...so not worth it.

Matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 9/13/2009 8:23 AM (GMT -6)   
Hi. I fully understand how difficult a decision this is. My son, Dillon, who is 18, has battled UC for the last two years. His started as proctitis but very quickly advanced to pancolitis. The asacol type drugs did nothing for him. At first pred worked like a miracle, but with the next flare it did not work as well and with the third flare did pretty much nothing. He had 8 remicade infusions which helped somewhat but he developed antibodies to it. At the beginning he was so against surgery that we, as a family, could not even discuss it. He personally, had to try remicade before he would think of surgery. When remicade stopped working he was just SO fed up with not having a life that he reached a point where he just wanted it all over and to take back control of his life. He had surgery two weeks ago and is already a new person.

He chose to go the J pouch route. We are fortunate to live in Toronto, Canada and have access to the best doctors in Canada. Since Dillon had been so ill and on pred for a while this is being done in two ( possibly three) parts. The first is removal of the colon and creation of an end ileostomy. about six inches of the rectum is left with the mucosal lining intact. They do this it keep the rectal tissue alive and well until the next surgery. The result of this is that while he waits for the next surgery he needs to sit on the toilet and have a "bowel movement" about once a day. All that comes out is mucous. For some people this mucosal lining can still be inflammed with UC (until the next surgery) but it normally is not really an issue since the lining is not irritated by poop going by. If it is an issue, at all, we are told that suppositories take care of it very well. So far Dillon has not had any issue with this and his lower colon was very badly inflamed going into the operation.

The second surgery involves making a reservoir (J pouch), to hold stool, at the end of the small intestine and connecting this directly to the rectum. At this point they strip off the mucosal lining that they had previously left behind thus getting rid of any tissue that could be inflammed with UC. This also GREATLY reduces the risk of colon cancer. It is important to point out how easy it will be in his future to screen for colon cancer since there is only a couple of inches of any sort of large intestine left. When the surgeon is operating, and she can see the health of the tissues, she will make the decision as to whether he needs a third operation or not. 80% of people do not. She would connect everything up and he would start pooping through his rectum. Howevery, they need to let the join heal so for about 7-10 days he would have a rectal tube that the poop would drain through directly into a bag. When I first heard this I thought how terrible, but during his first operation he also had a rectal tube for about 7 days and it was not a big deal at all. Through out this time you are at the hospital and the nurses take complete care of it. If the surgeon feels that the tissues are not healthy enough to start working right away, she will create a loop ileostomy and to protect the join of the the j pouch with the rectum. After 6-8 weeks, in a small operation, she would close the loop ileostomy, and he would start to poop normally.

We have been told that the "average" number of bowel movements, 1 year post surgery, is 5. Right after surgery the number is a lot higher. However, these bowel movements are NOTHING like UC movements. There is NO pain and NO urgency. It is just a quick in and out of the bathroom. Ron mentioned "pouch disease". This is pouchitis and the cause is really not understood. It is unpleasant and mimics the symptoms of UC. It does occur in up to 40% of people with a pouch. HOWEVER...most people only have, over their lifetime, the odd flare of this and it is usually very easily treated with flagyl (or cypro..I always get those mixed up). The odd person will run into a real problem with this. The docs tell you that there is a about a 5% risk of pouch failure and I believe mostly due to pouchitis. If that, unfortunately, should be Dillon's future than he would go back to a permanent end ileostomy. I would have previously thought how terrible that would be for a young man, but I now know that he would deal with it fine.

I hope you do not mind that I have rambled on so much, but when we were first trying to figure everything out I wished that people would have told me more.

The most important thing is that everyone is different and you need to work through the thought process yourself. Get all the information that you can. Talk to as many doctors as possible. Get a referral and speak with a QUAILIFIED colo-rectal surgeon. This surgery is very complicated and a lot of judgement calls need to be made. For someone who does this operation numerous times a week it is not really a bid deal but don't let a general surgeon near you. I think it is important to speak with the surgeon early so that you have time to ask all your questions and have time to really think it through.

For my son, this was absolutely the right decision. His recovery, all though not a walk in the park, has gone MUCH more easily than I imagined. Just two weeks post surgery is happy and laughs so easily. He has a look of peace on his face that I have not seen in two years....for me that is like winning the lottery!


I wish you all the luck and if you have ANY question do not hesitate to ask.

Cathy

sxu05310
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/13/2009 9:05 AM (GMT -6)   
Thank you all so much for your thoughtful responses!

I'm glad to hear that I'm not the only one who has considered surgery for reasons other than a "last resort" but I certainly see there are things to consider.

Thanks again!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/13/2009 10:12 AM (GMT -6)   
Welcome, sxu!

I think it's great that you're informed about the side effects of taking prednisone and immunosuppressors, as well as the increased risk of colon cancer, and are open to the idea of having surgery. I wish I would have had the surgery years sooner, because it is amazing to be healthy and to not have to take any medicine anymore. I also have the peace of mind in knowing that I will never get colon or rectal cancer.

Living with an ileostomy is amazingly easy, at least I think so. It doesn't stop me from doing anything, and it's so discreet under my clothes, nobody can tell I have one. It has become a natural part of me, so I honestly forget it's there (unlike Crohn's, which always let me know it was there!)

Anyway, good luck with your decision, and please feel free to ask us any questions you may have. We're all here to help!

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/13/2009 11:09 AM (GMT -6)   
I wish people wouldnt talk about surgery as a "last resort" it makes people feel like they are giving up. But in reality, surgery is the only way to beat the disease, the only way to win!
And there is no reason to feel bad about choosing surgery because you are worried about cancer and the long term effects of the meds on your body. Cece and I were talkign last night about how sick those meds used to make us feel. And that cant be good, to basically pump yourself full of toxins, and i mean pred is some evil stuff. I didnt try many meds, my reason was, i could try something and it might or might not work, but even if it did work, i was always waiting on it to fail, or terrified i would have to take an antibiotic and go into a flare.
And anytime you can reduce your risk of cancer its a good thing!
And there are things about surgery that take a bit to get used to, but really i often forget i have this bag, but im always grateful for it!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

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