Surgery

Hi ive nothad it but I know of people who had it and it takes away painful but there still here I would like it but I've got a node near my aorta so too dangerous to operate so hope there are further treatments further down the line xx

It takes everything away 

Hi Weekend Walker 

It’s a big operation. I’ve had something similar called a total pelvic exenteration which removes everything in the pelvis-bladder, bowel, reproductive system and vagina and a bit more. 

In terms of the bowel, I had my colon/rectum removed but not my anus but I do have a permanent colostomy, and obviously a urostomy.

Sarah xx

Hi Happyforager,

I haven't had this surgery, but my best friend did after an almost fatal attack of ulcerativ colitis. 

She loves her stoma. No more DREs, no more constipation/diarrhea seesaw, no more butt pain. She swims all summer and has sex almost every day of her life, wild girl that she is.

Because of her, I no longer fear APR surgery (although I don't hope for it either, despite the clear benefits.)

Suz

Hi also have a stoma therefore would welcome.e those surgery but not an option now do t fear the stoma as I didn't experience as much pain when j had the radiotherapy just the week g which was he'll 

A 

Hi Suz

my daughter has ulcerative colitis and last month she spent a week in hospital being intravenously infused with steroids. Her doctors told her she has been dealing with her symptoms for so long she has normalised it. They have now told her she has to inject a drug used previously for colon cancer for life! She said it’s an autoimmune disease and cannot be cured. I am so frightened for her as this has been on and off for around ten years. The steroids have bloated her out and she is growing hair around her face. I don’t know anyone who has had this but would be interested in if she has to manage her diet

Julie

Beth does manage her diet, but I'm shocked at all the stuff she can eat! She's the one who educated me on soluble and non-soluble fiber. Non-soluble is not her friend.

I'm so sorry your daughter has this awful condition. Getting away from the steroids was, IIRC, one of the main reasons her doctors pushed for the stoma.

Hugs

Suz

Hello Happyforager2

I had a very quick look online as I haven't heard of a 'salvage' APR and it major surgery with curative intent - so the literature says.  I don't have any experience of this so can't help, but wanted to send you my best wishes that this rids you of cancer once and for all.

And we are always here to support you along the way should you need it.

Irene xx

Julie, I feel for you so much.  My daughter has congenital heart disease (discovered when she was 20) underwent open-heart surgery and about eight years ago they discovered she had a blood clot in the coronary artery (which cannot be removed).  She is on anticoagulants for life, and the fear is something that I live with too, I have to stifle it and think medicine is making huge progress and she is being checked regularly.  But your little girl is always your baby and I am sorry that she is having side effects from the steroids.  I cannot offer any advice other than a huge hug from one worried Mum to another.

Irene xx

Hi, I have had APR surgery last July. I don’t remember it being called ‘salvage APR’ but maybe that was because I had it as a first line treatment. I have Crohn’s disease so was not a good candidate for chemo-radiotherapy. I am happy to answer any questions you may have or if you click my username I tried to document my experiences last year to help others facing the surgery. I won’t lie and say it was easy but I will say you can get through it if you follow the advice of the drs and nurses - stay off your bum wound and eat so much protein you think you can’t fit anymore in! 

I wish you the best for the surgery.

kirsty x