Rectum Removal

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lottagelady
Hi Sue, how dreadful - I think things like reading your story are why I have my doubts about my upcoming surgery and possible rectum removal after that - life could be much worse than it is already .... you poor thing, I am so sorry you have had to go through that. You are in my thoughts, take care, Rachel xx
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Kathleen53

Thank you for your kind words, Rachel. I don't want to put you off your surgery if it is needed. Just make sure you have a really good surgeon that knows what he's doing. Mine is just without feeling for his patients. He tried to make me feel as if I was crazy because the pain in my bottom was so extreme. He kept saying he had no idea why I should have any pain there!! I felt like suggesting he cut a five-inch deep wound in his bottom and see if he felt pain! I always felt I dealt quite well with pain. I had previously had breast cancer and had a twelve-hour operation having a double mastectomy, removal of ovaries, and muscle taken from my tummy to put where the breasts had been. I always felt I coped well, considering. Anyway, I don't mean to wander off the subject. By the way, I live in Texas now, but I'm originally from Send in Surrey, UK. It's good to speak to a fellow English lady. Take care, best wishes, Sue.

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beatrice

Kathleen53 - Sigh - Stories like yours are why I'm having concerns about having my rectum removed.

I had the ileostomy in Dec 09, and the rectal stump was left. Now I'm having very bad UC in the rectum.

I have a scope scheduled for next month, but I saw my GI today. He said that he'd be inclined to recommend a rectum removal. I brought up the potential problems with this operation, and he said, "Yes, that could happen - but since the meds aren't working well, it would be the logical step."

I so don't want another operation... I am very depressed.

Kathleen53
Dear Beatrice, please don't be depressed. I'm sure if you have a good surgeon, you will be fine. Unfortunately for me, the surgeon turned out to be lousy and I think that's why I'm having such problems. Also, due to the fact I had breast cancer in 2000 and had a double mastectomy, the muscle from my tummy had been removed to be put where the breasts had been. I think each person has their own list of problems, and so things turn out differently for each of us. I'm sure you will be fine if you have confidence in your doctor. Hang in there, and I hope things improve for you soon. Best wishes, Sue.
lottagelady

Hi Sue, thank you - I suppose I have more difficulty with the 'if it's needed' bit - I don't have a bowel problem, so in many ways it is not (I have a blog if that intrigues you!).... however, I do have bowel cancer in the family so would probably be a sensible road to take at some point?
Rach xx

 
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beatrice
Hi Sue,

Thanks for the encouragement. I had/have a very good surgeon ... but 'shit' happens as they say. I caught C-Diff at the hospital and was in isolation ... the thought of more complicated surgery, possible infections ... yikes.

There just seems to be so many complications with this operation (and the long recovery time) that I'm having a hard time wrapping my head around it.

Hopefully I'll get a bit more info after the scope.

All the best to you.
judianna

I realize that I'm a late entry on the subject but just in case there are new inquiries...
Had my rectum removed completely and sewed shut Jan. 99. It took quite a while to heal well enough to return to my desk job and when I did I used a cushion for a few months more...Outside of that, I've had no problems. Choosing the proper pouch for me took a while...I use a beige drainable one piece from Dansac. Haven't had any other problems...I sympathize with the many others whose story is different than that... There are success stories, as well and there is life after cancer. Hugs, Judi

beatrice
Hi Judy,

Never too late to post... and thanks - I need to hear good outcomes.
Bill
Hello Judianna,

I echo the view that it is nice to have some success stories. This string of posts was beginning to worry me as I need to contemplate have the rectal stump removed. The surgeon has given me an 'open' invitation to return to him within six months if I want to explore that route. The six months are almost up but I don't feel ready to make that decision just yet . The negative feedback certainly makes me very hesitant about opting for this procedure as I have enough problems without adding to them.

Best wishes

Bill
Telecaster

I had mine done just about 12 years ago after it just got too unmanageable with the UC that was still in there. Would bleed uncontrollably sometimes.

Mine took about two months to heal properly, and they kept the sphincter muscle in mine, but took out everything else.

Never troubled me until about three weeks ago, when two weeks after a hernia op to repair a large hernia, it suddenly started to itch, feel sore, cold even, and sometimes get this feeling of downward pressure on it too.

I have no outward looking soreness or anything, though I do have a couple of what looks like varicose veins right in that area.

Can't help feeling that my guts they pushed back in are either sitting on a nerve somewhere, I sometimes feel abdominal pressure against my coccyx area that then moved down to my old anus area too.

They did push a large hernia back in to me, and the mesh repair is very solid and rock hard. So strong down there that it makes the top of my abdomen push out more, so it must be putting pressure elsewhere, especially when stood up for a while.

One GP said it was fungal, when it plainly wasn't.

Last GP said it might be a bit of scar tissue that was being overstretched, which sometimes I think is the case as it gets worse when I am active and walking. Firing off funny nerve signals there too.

Scar tissue does funny things.

Being referred to the original surgeon who did the op all those years ago, for now using anesthetic cream to take the itch, coldness, and soreness away.

Never bothered me until now, either.

zuccazi

My rectum was removed 20 years ago. I had a lot of problems. The incision swelled, opened, and I became septic. I sat on a frozen pot roast for the pain. My tailbone was painful for a year. My tailbone still gives me problems and I cannot sit for a long time on hard surfaces. Even with all the problems we all have had, I'm sure no one regrets having the surgery. We are all lucky to have a disease you can cut out and throw away.

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