Sister-in-law diagnosised with Fap

Surgeons vary in what they're willing or able to tackle. One of the reasons the first surgeon I consulted gave for not offering me a J-pouch was that the disease was too close to the anus. Fortunately I consulted another surgeon. I'd guess that a hand-sewn procedure could be performed with even less rectum, but that's a guess.

I agree with Scott that another surgeon should be consulted regarding prospects for a successful J pouch procedure. With the presence of cancer in a very delicate area, consideration must be given to obtaining sufficient margin to assure that all of the cancer has been removed and that the anal muscles are not compromised. She should consider a K pouch or BCIR if the final decision is that a J pouch is not a suitable option.

Thanks for the answers,
Yes, it is very close to the sphincter and no, the k pouch and BCIR are Not available here.
They do not believe in continent pouches (or at least no one that I have met in 30yrs does).
So I am going to take her to my surgeon and see if he is willing to take her on for a jpouch and under what conditions he would be willing to do them.
Sharon

UC near the anus is not the same as having FAP polyps near the anus/sphincters. If the sphincters are affected, there is no chance of a j-pouch. Plus, if she has been on chemo for breast cancer, this may be a factor in regard to healing. I am not saying it definitely is, but that when you are talking about cancer, it is a whole different set of criteria than just IBD. Still, a second opinion makes a lot of sense, and she should try to get a specialist in FAP, not just a general oncologist.

I hope she has some encouraging news. On the other hand, an ileostomy is not the end of the world. Still, she has suffered enough loss without having more piled on.

Jan

I will speak with her tomorrow but for now all that I know is that the polyps are low, she heals badly and she is totally devastated...it has been a hard run for her and I really hope that someone can give her some good news.
We are all pretty much in a state of shock.
Sharon

For whatever it's worth, I'd seek out a second and/or third opinion. It never hurts.

When I was diagnosed with FAP my surgeon said my polyps were very low. I got two opinions and one was to get a permanent ileostomy. Part of the reason was that my muscle support wouldn't be as strong (because they could barely keep any tissue from the rectum).

I had a temporary ileostomy for 2 years before the pouch. I must say that my quality of life was good with the jpouch or the ostomy. (Sometimes I wish I had my ostomy because I'm tired of leaks and worrying that I don't find a bathroom in time when I'm out).

I'm hoping it all works out for her.

Zee

My sister-in-law saw the surgeon last week and they have booked surgery for next week. The polyp was about 2.5 inches from the anus and they are planning to do a temp ileo. Depends on what they find. She has had breast cancer in both breast and I suspect that they are thinking that there might be metastase.
For the moment she is in deep denial and doesn't want to face it.
sharon

Prayers for your sis in law Sharon.

Keep us posted. Sending prayers!

Sharon,

It appears the situation I had to deal with is similar in some regards to that of your sister-in-law. I was 25 when it was discovered that I had a fairly significant tumor in a "low" area of the rectum that the doctors were concerned about. While I was receiving chemo and radiation, I sought opinions from 3 surgeons. To make a long story short, the first surgeon told me a perm. ileo was needed but the other 2 told me a j-pouch could MOST LIKELY be created depending on what they saw/how my body reacted. I had a temp. ileo for almost 1 year while I received more chemo and recovered from that. I had my takedown in December of 2012 and am doing pretty well right now. I am hoping your sister-in-law beats her latest setback and recommend her seeking more opinions.

Thanks Jeff,
Surgery is next week and we will see what they find and how they go but most likely and temp ileo no matter what they find and then on to other options once they decide how deep it has gone.
Keeping my fingers crossed
Sharon

I had rectal cancer. this is why I could not have a jpouch. Removing the whole rectum they could "possibly" hand sew the intestine/pouch to the remaining skin but in women we sometimes have less to work with so they wouldn't have known until they went in to do the final part of the surgery. Leaving me open to possibly needing another surgery if I was left with a bag then wanted a BCIR or Kpouch. I was also told that without the rectum there I would possibly suffer with more accidents and have control issues.

I opted for the BCIR. Also with FAP and leaving any part of the rectum in, it usually will grow cancer. Especially if you have cancer there before having surgery. I did not want to risk any tissue being left behind.

Can she get a kpouch? What part of the world is she in?

She is welcomed to email me if she wants to ask questions since I have been there, done that and it is all so hard to deal with at first.

Thanks V,
She had her surgery on the 4th, all went well and they resected enough without actually needing to place a temp ileo.
Recovery was fine until she developed a serious bleed under the midline and had to go back to O.R....they fixed it and she is still in hospital 11 days later...Doing better but still very fragile.
The surgeon is optimistic but has not spoken about anything like chemeo or other treatments.
Will keep my fingers crossed.
Now I am dealing with a student with fap who is not being followed at all by her doctor. Taking her to see mine.
Seems that it is everywhere now!
Sharon

So glad they have YOU to help them stay on top of things. Remember FAP is hereditary so others in the family may need to have the genetic test to see if they also carry the gene.

I have FAP and had polyps throughout the colon and rectum so everything was removed. I have now out lived my father and 6 of his siblings who all died with colon cancer.