Re: To colectomy or not to colectomy...that is the question.

[Guest guest]

Hi ,

I was in your shoes only a year ago. I had low grade dysplasia,

though when my slides were re-analzed at Mayo Rochester they actually

determined it was high-grade dysplasia, so I second the second

opinion issue. But anyway, I had an ileorectostemy, which means that

I don't have a pouch OR ileostomy bag. Rather, they connected my

small intenstine directly to my rectum. They could do that because I

had " rectal sparing " (though right now I'm afraid my rectum is

experiencing UC symptoms, but that's another matter). The surgery

experience was pretty positive compared to what I was expecting.

Despite the doctors' and nurses' warnings about incontinence,

frequent bowel movements, and other adjustment problems, I haven't

had issues. In fact, most nights I " sleep through the night " (I wish

my baby would do that!). I have a bowel movement about as often as I

pee, with no particular urgency, so really it's no biggy - I'm in the

bathroom anyway. Aesthetically, the scar is small and not too

bothersome. So my experience of the whole thing was that it was a

smooth and easy process.

Now as I mentioned, I'm currently experiencing symptoms so I'm headed

to Mayo tomorrow to get scoped on Monday. An ileostomy bag could

still be in my future, in which case I'll deal, but for the time

being, I'm so glad I went through with the colectomy.

Hope my perspective helps!

Ruth

>

> I have found the recent discussions regarding j-pouch complications

> interesting. I am facing the decision on whether or not to

consider

> total colectomy due to recent biopisies of low-grade dysplasia (one

> biopsy 12 months ago and one biopsy 1 month ago).

>

> It is well known 1) patients with long standing UC are at an

elevated

> risk of developing colon cancer 2) patients with pancolitis are at

an

> even higher risk and 3) patients with PSC are at an even higher

> risk. Unfortunately I meet all of the above.

>

> There seems to be little disagreement that in these patients an

> incidence of cancer, high-grade dysplasia and even perhaps low-

grade

> dysplasia in a lesion or flat mucosa should be referred for

> colectomy. What is not agreed upon is what to do with patients

that

> have low-grade dysplasia within a raised or even flat polyp that

can

> be completely removed during colonoscopy. This is the grey area I

> find myself in, now on two occasions.

>

> On one hand, my colitis gives me very little problems, I can

> literally go 10 years with very few symptoms so having UC really

does

> not impact my quality of life. I undergo yearly colonoscopies with

> extensive biopsy surveillence and lately that has even been reduced

> to every 6 months. So part of me thinks why fix what ain't broke

and

> undergo the risk and inconvenience of major surgery. I would hate

to

> go through this for no immediate reason.

>

> On the other hand, part of me realizes that colectomy is probably

> inevitable due to my risk factors and having UC for 20+ years. I

am

> still in relatively good health but my PSC is progressing and

> transplant is probably in my future within 5 years. The worst case

> would be to have to go through colectomy surgery in the midst of

end

> stage liver disease. Perhaps I should get it over with while

things

> are pretty stable. There is also the issue of waiting too long and

> developing full blown cancer perhaps interfering with or delaying

my

> ability to undergo transplant.

>

> I am in the process of seeking second opinions from other GI

doctors

> but am wondering if anyone here has faced similar circumstances and

> what you ultimately decided to do.

>

> in Seattle

> UC 1991, PSC 2001

>

[Guest guest]

My wife had a colectomy in 2005, after they found regions of

pre-cancerous polyps. The worse case scenario occurred in that her

liver failed immediately, and she underwent a liver transplant two

days later. So, she had an ileostomy and new liver to deal with. Five

moths later though, the small intestines were connected to the rectum.

Similar to Ruth Blatt, no j-pouch and no ileostomy.

[Guest guest]

An ileostomy bag could still be in my future, >>>

For any of you with surgery in your future, I just wanted to let you know it will be a hit to your body image but it won't be the end of the world. I had my surgery when I was 17 (1972) and just at the start of my senior year of high school. Because my UC was never really controlled with the drugs available at the time having the surgery was ultimately a welcome thing. My whole personality changed in that I became more outgoing and friendlly. I went to college, graduated with 2 degrees from 2 different schools, married and had 5 sons. In the early 90's I had the ileostomy converted to a continent ostomy. Couldn't have a J-pouch because my rectum had been removed earlier. The continent ostomy has been another positive change for me as compared to the ileostomy but if I needed to return to the I would do it. My brother has had an ileostomy for

25 years now and is doing fine while being married with children and working full time as a pharmacist. I am writing all this to maybe alleviate any fears of having the surgery. If anyone would like more info feel free to contact me directly or via this site.

Blessings,

Barby

[Guest guest]

,

I am in a very similar position. I was diagnosed with uc in 2004 but

have probably had it for much longer. I have pancolitis, psc, etc all

the good stuff. I know I should prob have a jpouch but I feel so

against it. I guess a liver transplant doesn't scare me as much because

I'm getting a new one (yes I am very aware of all the complications).

It's just scary. I don't have any experiences to share yet, but I'm

going through it too. If you wanna vent or chat I'm here. It is an

emotionally draining decision! I'm still wrestling with it constantly!

Hang in there!

Holly