This patient support community is for discussions relating to ostomy, colostomy, diet and nutrition, gastrostomy ileostomy, jejunostomy, ostomy reversal, sex and relationships, stoma, urostomy, and wound care.
I have had an ilestomy for 5 years and am considering having it reversed, but with no J-pouch. My surgeon wants to reattach the small intestine directly to my rectum. Has anyone out there had this done, and if so, did you have good results?
My Partner is having the reversal from an ileostomy bag this weekend. During his first surgery he had his small intestine attached to his rectum. That has healed up but now he'll undergo re-attaching his stoma and close the hole to his ileostomy bag. I'll let you know how things go if you like.
Well the procedure is done. The surgery took approx 1 1/2 hours to close the ostomy and it went very well but the "after surgery" part is very painful. Today is day one with only ice chips or clear fluid for him to drink. He told me last night that the initial surgery [removal of large intestine] didn't hurt him as bad as this one. I don't necessarily think that's all true because he was completely "out of it" on the first round, but this time he's awake the the acids from the stomach are going down his small intestines to his rectum now. He didn't have that before so i suspect THAT'S what's painful. rightfully so. I'll post more as i get it
by the afternoon, they could listen with a stethoscope and heard that the bowels were already trying to kick in, which is a GREAT sign. They tell me that that's one of the most common problems is getting the gut to kick in and work. Usually that's what slows things down.
Isabelle, thanks so much for letting us know about your husband's surgery. I wish him well. Can you please tell us why he had he ilestomy in the first place? Ulcerative colitis is my thing. And how old is your husband?
he had uc for 7 years and became steroid dependent. Without them he bled. when he had a colonoscopy in Feb the decided that he had to make a decision because they found a growth. Not a palp. The took samples of it and luckily for us it was benign. But the doctor told us that this time we were lucky. He needed to make a quick decision on how to treat this, either remicaid or surgery. When they explained the remicaid treatment, it didn't convince me that it was going to do much other than put his body through alot of work with no guarenteed results. They said, "some people it works well on". if they had said 80-90% of people it worked well on, it might have influenced me, but it sounded like a band-aid. So we talked about it and we both agreed to "get rid of the problem" for good. Therefore we had them schedule surgery right away. He had the initial surgery on Feb 15th and now the reversal this weekend on the 25th.
on the 26th he was up and walking [painfully], but walking. that evening he had a bowel movement which is an EXCELLENT sign and should be celebrated because one of the biggest concerns is for the gut to kick in and process correctly. If this doesn't kick in, then a tube is inserted down the nose to the stomach and gases are equalized. [he had this done the last time]
Today he was up walking the halls very fast!!!! and they finally started him on a fluid diet YAY!!! now he just needs to keep the pain level down. When they take him off the iv and demerol drip, he can come home. But he has to be able to maintain a good level for oxygen, breathing, and passing gas or bowel movement before they let him go. They're hoping for tomorrow evening. ;o)
Isabelle, Wow - sounds like your husband is progressing very nicely! I am so surprised that he had the ilestomy for so short a period of time. Mine was done in 2003 and the doctors told me I had to wait for at least a year or so before considering a reversal. I was so scared of going through surgery again, that I've put it off for 5 years. I'm sick to death of living with the ilestomy, however, and am ready for the reversal (I think). Are you in the US? I'm in Louisiana. Just curious as to if the treatment would be the same. I'm 58 years old, and want to have this done while I'm still "young" and able to recover quickly and fully. Thank you so much for sharing your husband's experience. I truly appreciate it and would love for you to keep me posted of his progress, if you have time.
Sorry for taking so long to post back to you on his progress. Hubby is having problems with the recovery time. They're telling him it will be approx 6 months before everything is functioning as it should and at this moment it's really hard. He's losing weight and his anus muscle is working over time. he's going back to the doctor to see how things are progressing, but i can tell you, this surgery to put everything back in order seems to be harder to recuperate from. Not to give you any false hope or hopefully not talking you out of considering the surgery, because he really had no choice, but if you do decide to do this, please investigate with your doctors of EVERY possible problem that could go wrong. Last night he got up to go to the bathroom approx 10-17 times to keep from having an accident. I'm not sure this is normal, and if so, something needs to be given to him due to sore bottom. He is weak at this point and can barely sit for any length of time due to the soreness. I'll post back with what the doctor says today .
i am in the same position cha cha but think long & hard as i was told u need at least 9inches of rectal stump or u will be incontinent & 4get the recovery time from the surgery u need 2 be aware that it could take as long as 12-18monts for you to know what your "toilet habits" are going to be like...that could be a very messy time & if its still causing 2 many accidents u would hve 2 go back 2 having the bag anyway...i absolutley hate mine & my skin gets sore u know what the deal is im sure....but i have also been told that by going toilet as frequently as u no doubt will be your anus will get very sore....im still undecided as to what 2 do i have the best colon surgeon in England & its still a dilema & im only 41...good luck with ever u decide
I am sitting here in the hospital reading what everyone has offer about the ileostomy reversal surgery. My mom is in the OR right now for the surgery. She had the ileostomy surgery 8 weeks ago but we were having a hard time getting the ostomy bag to stay so they decided to reverse it now. I am wondering, if after a short period with the ileostomy, if she will have the same problems with incontinence as other people are having. During her time with the ileostomy she did many kegal exercises which I hope will also help with the recovery time.
How is your husband? I have just joined the community.
I just turned 45. When I was 11 yrs old UC was discovered, for 4 years I lived on sulfa and steroid drugs, at 15 yrs old, my entire Colon was removed and I had my small intestine attached directly to my rectum. A temporary ilealostomy was in place for approx. 3 months. I didn't handle the ilealostomy well, I had troubles with the stoma, everything I ate, well I was only 15 in my mind ostomy's, ileal or colostomy, were for the elderly, at that time elderly would have been any one over 30. Now I'm 45, it was great not to feel disfigured when I was younger and maybe I still feel that way but I struggle.
I went back to the Mayo Clinic in Rochester, MN. where I had the first surgeries, the removal and the ostomy reversal, I wanted to know if my straight pull through without a pouch could be reconstructed, I was 29 then. I was told I could go into surgery but wasn't guaranteed I wouldn't wake up without a full Ilealostomy, due to scare tissue and only about 30% function of my sphincter muscle. I opted out of the surgery of course.
Now my doctor wants me to start thinking about a full ileal-ostomy.
How is your husband doing? I hope he is doing very well, this is the first time I have come upon someone with the same or close to the same surgery and intestinal situation. So I have to ask and may want to ask more questions in the future.
I hope you are still following this post.
If anyone is still following this post I can tell you from personal experience that my j-pouch is great. I had a temporary ileostomy after my total colectomy 15 years ago. Three months with an ileostomy bag was tough but it never slowed me down. I had three teenage sons at the time. I was very relieved when the day came to close the stoma. The surgery was not terribly difficult at least not in comparison with the original colectomy. I've also had two surgeries to correct scar tissue which have not been fun but all in all I would go through the surgery again. I have very good control and seldom think about what I eat. Things can get out of control but I tighten up my diet until things calm down. I wish everyone out there lots of luck.
My mother had her colon and rectum removed about a month ago, and an ilestomy bag was in place. She had UC for about 20 years and it finally caught up with her in the form of colon cancer. The mass was isolated although the doctors feared it would show up again in a more aggressive form, so this was more of a preventative/potential life saving measure. She was in so much pain and very disoriented for the 2-3 wks following her surgery. At the 3 week mark she suddenly starting going down hill again. Ended up she was in acute renal failure. The ilestomy was out puting more than she was ingesting. So her kidneys would sit idle and eventually just started to shut down. Her kidney funct was about 30% but the doctors quickly got her turned around and back to 100% kidney function. She is set to have the ilestomy reversed in about 2 months. She with have the J pouch. Can anyone tell me their experiences with the J pouch vs the 'ostomy that had their colon and rectum both removed. And how long was your recovery after the reversal. Thanks!
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