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Ulcerative Colitis
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Posted 7/15/2010 4:58 PM (GMT 0)
Hi Everybody,

I just had a few questions on surgery. I was wondering does it fix us 100%? Do you still go the bathroom a lot? Can the colitis spread to a different area of the intestine after surgery?

Do you still have accidents with your bowels ect....

I'm just wondering.

Thanks for your responses

Donna :-)

Posted 7/15/2010 5:08 PM (GMT 0)
Sunshine, I'm sure folks here will answer your questions, but this is a great resource on surgery as well:

http://j-pouch.org/groupee/forums
Posted 7/15/2010 5:12 PM (GMT 0)
Thaks so much :-)
Posted 7/15/2010 6:38 PM (GMT 0)
Donna,

I am 100% fixed since jpouch surgery 9 years ago. UC doesn't spread so if your dx is UC surgery, provided you have both the colon are rectum removed, will rid you of disease. Typically the surgery for UC involves removing both the colon and rectum but I have seen a couple posters on this site that have had only their colon removed. This isn't recommended due to rectal tissue still harboring UC. I had a few incidents of incontinence post surgery but that was to be expected and I don't have it anymore. I do not have urgency like I did with UC. I empty my pouch about 6-8X per day. Most of those times is when I urinate.

Sue
Posted 7/15/2010 7:46 PM (GMT 0)
Like suebear said, colitis does not spread but it is possible to find out you have Crohns after surgery (or something else) like I did. Also, you can still get pouchitis after surgery, so, no surgery is not a 100% cure. I'm still better off after surgery, though it's taken a while. I had many accidents before surgery, and while I can still get urgency now because of the pouchitis and other things, I have no accidents. I do still go the bathroom a lot. Yesterday was about 10 times and that was the least I've had since surgery.
Posted 7/15/2010 9:20 PM (GMT 0)
about the pouchitis thing. I've heard that while you do get urgency with pouchitis, the symptoms are nothing compared to UC. Most people on j-pouch.org say that you get more of flu like symptoms with pouchitis.
If you don't have Crohns, it will not spread.

I still have the temporary ileostomy and I still have about 6 weeks from getting my takedown, but I feel 100% fixed now. I will be honest, the first couple of weeks were horrible. I had to deal with learning how to put on the bag, I had to be readmitted to the hospital for an obstruction (this was my fault for eating food that they told me not to eat and not staying hydrated), I had to take hydrocodone daily as my body hurt so much, and some weird coughing/breathing problem which turned out my asthma started acting up right after my surgery :/
But yea, now I'm able to eat what I want and do what I want.
Posted 7/16/2010 12:13 AM (GMT 0)
it is a 100% cure, when the colon is gone the UC is gone.
I have a perm ileo, so i dont know about the other questions.
And almost all the other weird stuff UC did to my body is fixed now too. All i have left is some problems with my knees from the pred use.
Posted 7/16/2010 1:24 AM (GMT 0)
I guess I don't agree with calling it a 100% cure...yes, a 100% of UC but we're just arguing semantics there, but since you can get pouchitis it isn't totally 100% that you will be all healthy and wonderful. I'm not saying that it's worse than having UC or anything or not to get the surgery by any means, but everyone doesn't walk out with no problems ever again.
Posted 7/16/2010 1:34 AM (GMT 0)
For most jpouchers pouchitis is an occasional occurrence. I have had it 1X in 9 years. Chronic pouchitis usually indicates that the diagnosis is Crohn's not UC.

Sue
Posted 7/16/2010 1:42 AM (GMT 0)
Good frank answers - the way it is!  I had not idea you still go so many times.  Sure hope I never go that many times with or without surgery.

I assume at 70 with mild/moderate UC I will never have to have surgery - it would have to be  cancer and then, of course, I would if it cured it. 

Actually, all the posts from those who have had surgery sound terrible - hope I never have to go through any of that!

Just my opinion!

ElaineNY

Posted 7/16/2010 2:24 AM (GMT 0)

suebear said...
For most jpouchers pouchitis is an occasional occurrence. I have had it 1X in 9 years. Chronic pouchitis usually indicates that the diagnosis is Crohn's not UC.

Sue

I'm not saying pouchitis is something most people get more than occasionally. I'm simply saying we cannot claim "it's a 100% cure"
Posted 7/16/2010 2:34 AM (GMT 0)
I guess it's your definition of a cure. For me 1 case of pouchitis in 9 years is still a cure. I am not chronically ill nor have I been since surgery. I eat what I want, take no meds, and engage in a high level of physical activity. My life, cured of UC, is very different and much more predictable than my life with UC.

Sue
Posted 7/16/2010 3:51 AM (GMT 0)
kops2da-whos posts sounds terrible? we are all saying how much better things are.

As for the 100% cure, it is for UC there may be problems afterwards, but they are not UC. Pouchitis is not UC, no more than a broken arm is the flu! if you got a jpouch for cancer and then got pouchitis, you wouldnt still have cancer! And if you have a perm ileo and get skin irration you dont still have cancer or UC you have skin irritation.
Posted 7/16/2010 11:14 AM (GMT 0)

summerstorm said...
kops2da-whos posts sounds terrible? we are all saying how much better things are.

As for the 100% cure, it is for UC there may be problems afterwards, but they are not UC. Pouchitis is not UC, no more than a broken arm is the flu! if you got a jpouch for cancer and then got pouchitis, you wouldnt still have cancer! And if you have a perm ileo and get skin irration you dont still have cancer or UC you have skin irritation.

I know it's not UC but you wouldn't have the pouchitis if you didn't have the surgery. All I'm saying is we can't expect that 100% of people will walk out of surgery 100% fine forever. There may be serious problems after and when you've always heard "surgery is the cure", it can be hard to handle. I still think surgery is the best option a lot of the time, and even for me, it was the best choice. Also she asked "does it fix us 100%", and the answer is, plain and simple, no it does not always.

And I agree that no one is making surgery sound terrible. You and Sue both had great experiences, and even though I had problems, I am still happy I had the surgery and am doing a lot better now
Posted 7/16/2010 11:34 AM (GMT 0)
For me, my ileostomy is as close to a 'cure' as I can hope for - no more running to the loo and hoping I make it on time, no more meds, no more pain, I eat what I want when I want and basically, have a life.

Is it as perfect as life with a healthy colon? Of course not, but there is no amount of money in this world that you could give me to go back to my UC days before surgery.
Posted 7/16/2010 1:41 PM (GMT 0)
To me surgery of any kind is terrible so don't listen to me.  It is an only a life saving decision.  Except for knee replacement which I know I have to have or be in a wheelchair.  Still don't want to do it - hate it and wish I did not have to.

As for having my colon out - I will try everything first  and believe having the surgery is terrible - sorry!

ElaineNY

Posted 7/16/2010 3:04 PM (GMT 0)
kops2da-i just wanted to make sure that i hadnt said something inadverntly that sounded scary or bad. And i definetly dont blame you for the knee surgery thing! My aunt has had it, and while she is muchbetter now, it was hard. But worth it for her. good luck with that.
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