Has Anyone Had Their Rectal Stump Removed After Colectomy?

Hi Guys,

I had a total colectomy in May 2010 which left me with an ileostomy. I saw the specialist on Monday, and it was the first time that I was told I will definitely have to have my rectal stump removed as I can't be reconnected due to UC and proctitis. It was a shock to the system; I thought all surgery was over, but sometime in the next few months or years, I will have to have another major operation. I would love feedback from anyone who has had this surgery (recovery time, what the operation involves). I'm scared; I thought the worst was over. xxx

The question would be, is that part bad also, or is the doctor trying to milk the wallet? Get a second opinion.

Yep, I have... Weeweee, I didn't have to pay. But I wouldn't say it's been a good experience at all. My rectum thingy was ruined from ulcerative Crohn's disease, I think. If I could have known, I would have left mine, saying that it's because I had too many ops now and suffer extreme abdominal pain. And you do get this awful leakage from the bum bottom, hahaha, area. Mine comes and goes like mucus... Other than that, life's just dandy, lol. Good luck if you, Claire, want to ask me privately. I will tell you more... Mooza xxxx

Hi Claire, removal of the rectal stump and the rest of my colon was the last of 23 surgeries for me. They did me piece by piece as they were very conservative back then. Healing took quite a while. From what I remember, it was at least 6 months as the healing occurs from the depths to the surface as the wound and tissue granulate in. I remember an aching in the area rather than sharp pain. The area was first packed with gauze and as time went on, less packing was needed. 15 of my surgeries were in the rectal area and I was glad to get rid of it. No problems in this area since it healed over 40 years ago. Hope all works out well for you. Barry

I had the rectal stump removed (2003) within about 7-8 months of getting the ileostomy, as like you the u.c had not gone away. I found the initial recovery time was very similar to the ileo' operation just with a sore bum, but the actual healing of the wound continued for months afterwards. Mitdad's post tells you the detail you need about the recovery process (granulation etc). As Mooza said, mucus can appear from time to time but its not a big deal. I had a second operation , only minor day surgery, which targeted the perineal sinus and reduced mucus to a small amount when it chooses to randomly appear. I found talking to my GP about the operation and granulation in recovery really useful. I hope everything goes well, if you want to ask anything else message me. Andy

Words of Encouragement from Ostomy Advocates I Hollister

Wow, Mitad, you had 23 operations! Amazing, both your answers were great. I never had any gauze, but I did get a bad infection. By the third day, the leaking was actually more like a tap, unreal for quite some time. Yeah, the mucus does annoy me big time. It stopped for the first time ever for 6 weeks, and as soon as I told someone, it was back and still coming. I was told by my surgeon that Crohn's patients don't heal very well; that's why the mucus. But now you guys seem to tell me something different. Should I demand they target the perineal sinus to get it done? I don't even think they will do it. My healing had to be fixed; I had some weird flap thing in the rectum. He, instead of day surgery, said he can deaden the area and cut the wound. I said, "Just do it. OUCHHHHHH," but it fixed that problem. Did I get the runaround with "Crohn's people don't heal very well" because I wasn't told that my rectum was like a pinhole size from disease and felt like it as well? Now I'm annoyed. Who do I see about this sinus thing? I'm in Australia. Mooza xx

Mooza, I also did not have any gauze when the rectum was removed - did we miss out on that one?? The mucus was more apparent in the early stages of recovery, but for me, it eased off slightly. In the UK, it was the surgeon who performed both the total colectomy and proctectomy that mentioned, during a routine checkup, about operating on the perineal sinus. From what I remember, he described it as incising the sinus higher up to alleviate the mucus. If it had not been a success, well, as successful as it could be, in day surgery, then I had the option of a more invasive procedure to try again. I think the surgeon just wanted more practice on my bum - that sounds so wrong!! The level of mucus now is far less than in the early days, but I wish it would book an appointment in advance for when it wishes to say hello. I am not sure if your mucus is more of a problem due to Crohn's as I had UC. It might be worth asking your doctor, though, if it really drives you mad. Andy

Hi Clair, I too had a rectal stump removed some years ago, took many operations just like the others, and some infections, and had it packed, but time was a healer and it did happen. However, there were times I thought it wasn't going to ever happen as it has to heal from the depths to the surface. All I can say is it's better out than left in. Good luck, tc ambies...

Hi Clair, my name is Traci. Nice to meet you! I had my rectum taken out about 17 years ago. I was 24 years old. It was my 26th surgery, and I'm glad in one way but disappointed in another way! Before the operation, I had a lot of pain but nothing else. By having the operation, I have never had a fissure or any problems with drainage. The recovery was hard and long, but no real problem until... and I will be totally honest with you! I started to try to have another baby, but the doctors didn't tell me that the chances of having a baby after the operation are very low! My uterus has now tilted and moved into a position that I was not even able to undergo in vitro! I'm not trying to scare you in any way; that's not my intention! I just wished someone had told me this before I had the operation and spent thousands and thousands of dollars and countless disappointments trying to have another child! I have had Crohn's disease for 26 years, and I have talked to many women who have gone through the same thing, and their biggest regret was not asking the doctor for the whole truth! It's a big decision to make, and I would not only get a second opinion and a third, I would get checked out by a gynecologist and get his/her opinion as well! Like I said, it's not an easy surgery, and I can honestly tell you I would have waited until I was finished having children! I wish you all the luck in the world, and I hope that you do your research before you jump into a major surgery again!! Take care ~traci~

DON'T DO IT!!! It's been almost three years since I had my colectomy done, and the surgeons removed my rectum at the same time as the surgery, and my rectum has never healed, causing me undue pain and constant infection, etc. I have had two surgeries to try and fix the problem since the initial surgery, but they were both unsuccessful. I suffer from chronic Crohn's disease, and it is impossible for the wound to heal. My colorectal surgeon says the solution now would be to have a bone marrow transplant and to remove a piece of tissue from my thigh to form a flap of skin over my rectal area. Unless your surgery is necessary, I would not have it done! One surgery leads to another problem, it seems. I had my surgery done at Georgetown U. by the head surgeon. I'm not happy, and I did get a second opinion, by the way!

I haven't got a choice; it has to be done, just not sure when. x

No, you do not have to have this surgery done by any means unless there are some sort of complications or cancer risks involved. I know what I'm talking about. Please don't do it. I will talk to my doctor for you; this is so unnecessary and can lead to further complications down the road! This makes me so mad! Do you trust your medical staff? I am fortunate because I live in the DC area; I have Georgetown Medical, Johns Hopkins, a great GI, NIH, agh! I will research this for you!

Found this a while back and thought it might help. http://mypinkbutton.blogspot.com/

I had many surgeries after being diagnosed with CD. It all ended in an ileostomy. My rectal stump was left but in time it had to be removed. I asked the surgeon what the side effects of that surgery would be, and he told me, "You will have leakage and possibly infection." I asked him if there were any alternatives, and he told me that he could close the rectum completely. So that's what I did. Since then, I have had no problems at all! It's a little strange, having it closed, but I don't use it anyway. So I say, have the surgery only if your surgeon will close the rectum to prevent any leakage and infection. Good luck with everything.

Hi Claire, a lot of conflicting experiences on here, but we are all so individual you can't take it all on board. All we can do is tell our own stories and hope that they can help. I am 7 weeks post-op from a total proctocolectomy and permanent end ileostomy. I have had a smooth ride so far. My rectum was removed and completely sewn up. No packing was done and apart from some minor bleeds which stopped as soon as they started, everything is fine. As I had all my surgery at once, the surgeon also stitched my uterus up and out of the way with dissolvable stitches. So that my healing and scar tissue could develop and my uterus would not get caught up in it, and therefore tilt back. I'm not yet trying for children so whether this has worked or not only time will tell. My GP, surgeon, and stoma nurse have all said the wound looks good. I'm glad I had it done as active disease in the area (Crohn's colitis) would have meant I still had cramps, mucus, bleeding, and pain. None of that now. I can't say if it will get infected as it has not completely healed yet but that can take some time. Mine is a positive story and I am glad I did it. You will just have to keep talking to your surgeons and only do it when you feel comfortable. Hope everything turns out well. Carly

OMG Cas, you got the operation! Did you go to Bali? And your question, "Did I choose the op, or did it choose me?" Well, what happened? I bet it chose you. Hope all is going well, matey. xxxClaire, you've got lots of information now, so at least you can go in. Maybe write some of these down. I wish I did, but I think my *th operation, as they say, broke the camel's back. People, 20 operations! I can't believe it. Why do I still have severe pain 3 years later? Referred pain from the abdomen to my back. It's only the worst operation because, I suppose, maybe I didn't ask the questions. But what questions? I had no idea. I also had the head of colorectal here in Melb. Aus. He said there should not have been any problems. Well, shite me. Claire, write some stuff down, and now you have questions. I had no idea what I was going to go through. I had an infection within 3 days. Good luck, hun. Mooza...

Hi Claire: I had my stump removed about 3 years ago, as I was still having UC symptoms. The only negative was that the surgeon didn't tell me about possible seepage. I did have some about a month after the operation, which was bloody and it scared the hell out of me. Once I understood that seepage came with the territory, I bought some feminine products and carried on. The positives—no more UC; danger from cancer in that area greatly reduced. Did I mention no more UC? Negatives—with any operation, there is some risk of seepage, but not always. Make sure the surgeon has a good record. Do the research, and when you're comfortable with him, don't be afraid to ask questions. I wish you all the best.