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Anyone still have their anus after total proctocolectomy? Any problems? It's been almost 11 yrs since my operation. My surgeon left my anus but took rectum and colon due to my UC. I am having a lot of pressure inside anus. I'm due for biopsies but earliest scheduled appointment is July 20th to get in to see surgeon (not same surgeon who did original operation because he is retired).

Geez, it's been so many years since my operation, but, I will try to summarize it. I had my proctocolectomy June 28, 2010 at Pennsylvania Hospital in Philly. I was hospitalized 11 days due to some complications post op. My husband and daughter could not remember what the surgeon told them when he phoned from the operating room....something about bleeding, so he left the anus instead of keeping me under anesthesia longer than necessary. Believe it or not, I didn't know he left the anus intact until my first post op office visit!

The problems inside the anus didn't develop until 4 yrs after my operation. By that time, my surgeon had retired. I didn't like the guy who replaced him , so I found a colorectal surgeon here in Jersey. I started feeling pressure inside the anus and mucus was coming out of the anus...no bleeding. The new surgeon did biopsies which showed inflammation inside the anus, but no malignancy. He suggested I come every year for biopsies, until two years ago. when he told me I could wait two years. It's a little past two year mark. The pressure has increased, so I am concerned the inflammation may have gotten worse. I wear a panty liner every day for the mucus, but, it isn't bad.My surgeon said he would not have done the surgery any differently than my original surgeon. Apparently, to remove the anus is another serious operation. I thought it was easy, maybe just go into the anus and cut it out, but no, apparently, they will have to cut me open in the same fashion as my first operation. I have had a permanent ileo. I also have a RVF, but the doctors tell me to leave well enough alone because there is no feces passing through. I'll know more after next month. I will be 75 in August, so, definitely NOT looking to undergo any unnecessary surgeries.

Yep, sounds like we are in the same boat! Oh well, things could be worse, a LOT worse. I cannot tell you how much I suffered with UC before my operation. My quality of life was going downhill fast. I was diagnosed in 1998. My symptoms were so bad, that I was almost certain I had rectal cancer, as rectal cancer killed my paternal grandmother at the age of 65 back in 1952. I can remember the poor woman lying in bed in agony, as she lived with us. All my gastro doctor wanted to do was try more and more meds.....prednisone (which was killing me), 6 MP (seven years of that crap and it did absolutely NOTHING except to increase my lipid profile and other enzyme levels to alarming degrees. I forgot the multitude of other meds. My BP used to be 216/110, even while on 3 BP meds. I tried Remicade, which I quickly started building antibodies against, then Humera, which did nothing. When I asked my GI doctor to refer me to a surgeon, he flat out refused and said he wasn't done trying more biologics. I told him to find another guinea pig, that I was DONE. I am sure if I didn't have that operation, I wouldn't be alive today. Good luck to you and I will keep in touch. Feel free to email me also. I believe my email address is on my profile. OH...and happy to say, I am feeling better. I have been soaking my butt in warm water with Epson salts and it is helping. BTW...the cream you are using...is it called Hydrocortisone Acetate 1%? I have the same thing. The procto foam didn't help.

Hi Susie! I just returned from a five day trip to the shore with my daughter and little grandsons. I think the salt water helped my sore butt. I cancelled my appointment for the biopsies. If need be, I will schedule them for the fall instead. We are having some major heat here in New Jersey and the only relief was at the shore. Sorry you are going through a flare. My final flare, before my decision to have surgery, lasted two years. I was SO DONE. My surgeon told me I made the right decision as my rectum was a "mess", his exact words..lol! Hang in there. I hope you get relief soon.