anyone had there rectal stump removed?

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 got told I will definitely have to have my rectal stump removed as I cant 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 off anyone who has had this surgery (recovery time, what the operation involves) im 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 didnt have to pay .But i wouldnt say its been a good experience at all..my rectum thingy was ruined from ulcerative Crohns disease i think IF i could of known i would of left mine saying that its cause i had too many ops now and suffer extreme abdoman pain .And you do get this awful leakage from the bum bottom hahahah area mine comes and goes like mucus ...other than that lifes just dandy lol xxx good luck if u claire want to ask me privatly i will tell u more ..mooza xxxx

Hi Claire, Removal of the rectal stump and 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 granulates in.I remember an aching in the area rather than sharp pain.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

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

wow mitad youi had 23 operations Amazing both your answers were great i never had any gauze but i did get a bad infection by the 3rd day the leaking was actually more like a tap unreal for quite somtime yeah the mucus does annoy me Big time it stopped firdt time ever for 6 weeks as soon as i told someone it was back and still coming i was told by my surgeon crohns pateints dont heal very well that why the mucus but now u guys seem to tell me somthing different should i demand targeted the perineal sinus to get done i dont 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 i can deaden the area and cut the wound i said just do it OUCHHHHHH but it fixed that prob did i get the run around with (crohns people dont heal very well) cause i wasnt told that my rectum was like a pinhole size from disease and felt like it aswell ?? Now im annoyed who do i see about this sinus thing im 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 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 Crohns as I had u.c. It might be worth asking your doctor though if it really drives you mad. Andy

Hi Clair, i too had rectal stump removed some years ago,took many ops just like the others, and some infections ,and had it packed but time was a healer and it did happen,but there were times i thought it wasnt going to be ever happen as it has to heal from the depths to the surface.. All i can say is better out than left in...Good luck tc ambies...

Hi Clair my name is traci nice to meet you! I had my rectume taken out about 17 years ago. I was 24yers old It was my 26th surgery and I'm glad in one way but disapointed in another way ! Before the operation I had alot of pain but nothing else. By having the operation I have never had a fisher of any problems of drainage.The recovery was hard and long but no real problem untill....and I will be totally honest with you! I started to try to have another baby but the doctors didnt tell me that the chances of haveing a baby after the operation in very low! My Uterus has now tilted and moved into the position that I was not even able to invetro! I'm not trying to scare you in any way thats not my intention! I just wished someone had told me this before I had the operation and spent thousands and thousands of dollors and countless dissapointments trying to have another child! I have had crohn's disease for 26 years and I have talked to many woman that have gone though the same thing and there biggest regret was not asking the doctor for the whole truth! Its a big dicision 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 aswell! Like I said Its not a eazy surgery and I can honestly tell you I would of waited untill 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 of the surgery and my rectum has never healed not ever 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 unsuccessfully. 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 havent 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 Dr. 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, John 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 surg. 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 surg. would be and he told me You will have leakage and poss. infection. I asked him if there were any alternatives and he told me that he could close the rectum completely. So thats what I did. !!!Since then I have had no problems at all!!! Its a little strange, having it closed but I dont use it anyway. So I say have the surg. 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 permenent 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 stoppped 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 disolvable 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 dont 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 going well matey xxxClaire your got lots of information now so at least you can go in maybe write some of thses down i wish i did but i think my *th operation as they say broke the camels back people 20 operations i cant believe why have i got severe pain still 3 years reffered pain so from the abdoman to my back its only the worst operation cause i suppose maybe i didnt ask the quesations but what questions i had no idea i also had the head of colorectal here in Melb.Aus, he said should not of been any problems well shite me ..ClAIRE write som 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 symtoms...The only neg..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 teritory I bought some feminine products and carried onThe positive's--No more uc---danger from cancer in that area greatly reduced.--- did I mention no more UCnegitives...with any operation there is some risk...seepage but not alwaysMake sure the Surgeon has a good record..do the research..and when your comfortable with him..don't be afraid to ask questions..I wish you all the best