waiting for results..question for those who had proctocolectomy with end ileos but still have anus

No matter what the biopsy shows, Christine, please get another opinion. A third, if necessary.

I had all of my parts removed in one she-bang, so I am not one of the people you are addressing here.

However, I was 57, very sick, very anemic, Diabetic [type 2] with Crohn's Colitis. My colon and rectum were shot and everything had to go. With all of that going on, my butt wound caused me the least problem with my recuperation. My surgeon left about the outer 1/2 inch of the incision open, so I could heal from the inside out, so I was not sewn up tight. Even with that, I do not feel it was all that bad.

We often talk about "quality of life" on this board, and I believe your situation has fallen into that category. Not to mention the real risk of malignancy down the road.

It would be very concerning to me to have inflammation in there ALL of the time, even with medication. The scopes done frequently to check on the inflammation, seems like this surgeon is just waiting for the time when it turns to dysplasia or even malignant. If you have inflammation in the vagina, isn't that also a concern for malignancy, there?

In addition to the above, you have the stress and worry during all of this "wait and see" approach. You need real answers, girl.

Of course, I am not a doctor and maybe there are real and valid medical reasons why you have been discouraged from having this surgery to remove the anus. But, you need to find out if surgery is possible and what the "real" risks are for you. If one or two more surgeons agree with this surgeon, then you will at least know, that you know, that you know.

I'm sorry to hear about all the trouble you're having Christine. I've read some of your posts before & it does sound awful.

I sort of fall into the category you're talking about, except I have my whole rectum left. My surgeon didn't want to do pelvic surgery on me because of my age, and because I only have one ovary left (had other removed when I was 19), he thought the infertility risk was too high.
But at my 6 month check up, I was told I would be getting yearly scopes on my rectum, which I'm happy about. I made the appointment already for my first one in December, which is a year since my surgery!
I don't mind at the moment still having my rectum. I sometimes get the urge to go, and I pass mucous from it. I have gotten some pain & cramps, but they've even eased off since surgery, so I think it was everything just settling still.

Good luck with your results, and getting the second opinion, I think it's definitely worth it too.

UPDATE: I did received my operative report from the office of Dr. Fry and the rectum WAS removed. However, the anus was left. Now, to take this report to the guy I am seeing now who said I still had a bit of rectum in there....omg

Me by the Sea....first of all...which sea? Jersey shore? LOL. Who did your surgery? A doctor in Philly? My surgeon told me the same thing...I was too sick for them to remove the anus too. Also, he said there are more complications when the anus is removed. He never told me to have scopes. I asked if I should return to a GI doctor, he said only if I had upper GI problems. I would never return to my former GI doctor anyway because he was so much against my having surgery. My disease was only in the rectum, never traveled into the colon during the twelve years I suffered with it. Reading my operation report I did see where I lost a bit of blood during the operation, but didn't require a transfusion. I believe that was the complication that they bumped up against and the reason the surgeon phoned my husband from the operating room. I never had dysplasia in the past, but still waiting on the biopsy report from the 17th. Geez, it's taking a long time!!! OH...according to the report, my entire rectum is OUT...so what this new guy is talking about saying I have some of my rectum...I have no idea.

Crohnnie....about quality of life. I cannot complain about my quality of life. The only problem I am having is the inflammation in the anus...it is not painful...just feels like I have to poop sometimes and a bit of pressure. Compared to the quality...or lack thereof...life before my operation..well...no comparison. Before my operation I was talking 17 - 25 pills daily plus rectal meds...I was prednisone dependent and it was killing me!!! I couldn't leave my house until the middle of the afternoon. I had port a pots in every room of my house because I couldn't make it to my bathroom. We even had to take a port a pot in our SUV every time we went out!!! I missed my grandson's 1st Communion, weddings, funerals, etc....that was how poor my quality of life was before my operation. Dr. Fry saved my life!

Christine, I can imagine you are just about ready to scream. What are you using for the inflammation? It has to hurt and be very uncomfortable. Yikes.

I'm with my 5th Parastomal hernia right now and very frustrated myself. Not sure what I'm gonna do next.

I am trying to keep positive thoughts.. Ugh