Rectum removal and ileostomy

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Jul 10, 2012
Messages
1,231
Hi I'm a newbie too and I've been diagnosed with indeterminate colitis which means they don't know whether it's Crohns or ulcerative colitis. I had been suffering with this for 4 months before I done anything about it which I regret so much. I just got imodium from my doctor hoping that would help. It didn't ended up getting admitted in hospital was in there 4 weeks treatment wasn't working for me was on prednisone and had 1 session of infliximab. I ended up having a emergency ileostomy my large bowel could of burst at anytime and could of killed me. My question is has anyone had there rectum removed and their ileostomy made permanent. How do they do it go through stomach or bottom? Is it really painful and how long do you struggle with sitting etc? I've got to go bk in November to make my decision of whether to be joined up or get rectum removed. I feel with being diagnosed with indeterminate colitis that I have no other choice because the main reason for the internal pouch failing is undiagnosed Crohns disease. Many thanks Rachel
 
Hi CheerBear and welcome to the forum, I'm glad you joined!

I don't know the answer to your question but moved your post to its own thread here so that you can hopefully get some answers.

Again, welcome! :)
 
I have an ileostomy currently and am waiting for J-pouch reconnection, so I can't help you out. However, there are others here that have had the same surgery you are contemplating and I am sure they will be around soon to answer your questions.

Take a look around the stoma subforum and you might be able to find some answers there from previous posts.
 
Hi David & 2th fairy thank you so much both you:) just hope I get the answers I need. 2th Fairy hope yours goes well and keep me posted. Many thanks
 
Hi cheerbear, I had a proctectomy in April. My op went really well, I was home on day 4 on paracetamol only. I healed well too. They go in though your stomach and through the bottom end as well. The scar underneath was quite big and yes it is painful at first, but bearable. You can buy a cushion, an egg box cushion, which helps. Once my stitches came out at week 3 things went great. I am really pleased now it's over, no more scopes, no mucous and blood. I read all about the possible complications before hand, and it is important to be informed, but my experience was really positive. Pm me if I can help,

Kaz xxx.
 
Hi Kaz I'm absolutely dreading it. I don't want it but I have to have or the other:( I thought they would go through both. My stomach was agony last time but this time it will be my stomach and bottom in agony:( sorry about ranting on! How is your vagina coz I read that once the rectum is removed the vagina drops down into where the rectum used to be which apparently makes it harder for smear tests and periods are more painful apparently. Sorry for asking a question like that you don't have to answer it if you don't want too. Do they go through the same scars in your stomach as the ostomy surgery? Thanks a lot x
 
Ah Rachel, I know exactly how you feel. After the first op I had an incision down the middle, about 4 inches long, my ileostomy and a mucous fistula. The mf was like a little stoma on the left which was the top of bowel i had remaining, going down to my anus. Do u have one? I like you, found this op was really painful, I was so dreading the next op after this. The proctectomy was so much better though. Nowhere near as painful. They were removing the mf so went in there and also underneath. I can honestly say the pain was not as bad and was always bearable. I have had no problems at all with my waterworks or lady parts (as they say on here lol). I personally was so pleased and I have recovered better than I imagined that I could (10 weeks post op now). I opted to have it sooner, rather than leave it, because it was diseased. I thought it could cause a bigger problem for me later if I waited. It is a hard time for you and I hope it all goes as well as it did for me. The waiting is the hardest part.

Kaz xxx
 
Hi Kaz I've got an ileostomy but not an mf i've got muccus that comes from my bottom. Do you mean a bag that the muccus goes in? I dont Have One of them. My first one was done keyhole and I've been told that it can be done keyhole as well. Glad to hear you have no problems with your water works or lady parts. That was worrying me as well. It is a worrying time for me I have to make my decision in november then get put on the waiting list:( I hope mine goes as well as yours as well. x
 
Both my ops were keyhole. They made the mf. Apparently the pressure of mucous in the bowel can be problematic so they make a mf to stop this. I had a bag over it at first, it was like I had two stomas. But it shrank and I used a dressing until I had it removed. I lost mucous through that and down below, all the time. So glad to be free of it all. I am in the northwest, where about are you? Xxx
 
Hi so do you have to have three operations?:-( in so scared and confused! I don't want two Stomas! One is bad enough lol! Just want it to be over with and to be recovered from it! Hos long did you have to wait for the mf to be removed? I'm from northeast xx
 
No just two ops. The first op took away the colon and formed the ileostomy and the mf. Not all surgeons form an mf. Try not to be too scared. I was exactly the same but I didn't need to be. Honestly. The scar underneath looks nothing, it is in the natural crease lol. U would never know except the hole is missing :eek2:

I used to work in Sunderland and Gateshead xxx
 
Hi Kaz I thought the point of having rectum removed was to get rid of the muccous and so that cancer is not a risk factor. sorry I just want to know as much as possible x
 
Hi Kaz I've already got my ileostomy with no mf so my surgeon was probs one of the ones who don't perform them! Lol is the scar in the bum performed open? Lol, hope it doesn't take me three months to recover like last time! I couldn't do anything for myself was really ill going in tho this time I won't be xx
 
Kaz how will they go through me if they went through your mf coz I don't have that! I appreciate you might not know the answer to it xx
 
Hi Rachel, I was really ill first time too. But this time is was much easier. I don't know how the scar on the bum is formed. I suppose it was open. It was called a laparoscopically assisted proctectomy which I think means it is part keyhole and part open. Which makes sense now you have asked me that lol. Honestly, I can't stress enough how much easier this op was for me. I hope you begin to feel better about it Hun xxx
 
Hi yeah it does make sense now lol and not really but thanks a lot for your help you have been very helpful. I just want it over with might not be till next year. How long did you have to wait on the waiting list for? xx
 
My op was cancelled a few times cos the surgeon had cancer patients that took priority. So it was about 4 months after it was agreed. I was passing quite a bit of blood so he was keen to do it quickly. Are you passing much? I hope it is quick for you. This time next year you could be telling someone else all about it xxx
 
Hi was it done under general anaesthetic and how long did it take? Yeah they do take priority and it varies every couple of days some days pass more than others. I actually get a feeling of wanting to pass a bowel movement tho I know I can't and it's pain with blood too but not all the time sorry for the details lol and so do i! xx
 
It took about 4 hours, yes I was under anaesthetic and I had an epidural for pain relief. It worked fab. I was up and sat in the chair the next day. keep me posted, let me know what you decide xxx
 
I had morphine pump last time! Wonderful made me sleepy but I had no pain:) hope I have that again. That's long my last one took 5 hrs took longer than expected. I will and I've already decided I feel I have no other choice but to get it removed. I wish it was different but I can't change that sadly. I was hoping to get it reversed. I hope this next one doesn't cause hair loss either:-( I lost loads but I was under loads of stress and trauma of the op. It's just stopped falling out a couple of months ago and is growing bk:) i'll try not to get too stressed this time! Wow it's great that you were sat up the next day:) how long did it take to heal up? I know everyone is different tho xx
 
The morphine pump didn't work first time for me. I was in a lot of pain. Initially I was supposed to get mine reversed, but the inflammation never went away. I lost my hair first time too, it is amazing how similar our stories are. This time was fine though, my hair has grown back really thick and healthy and it stayed that way after the op. My butt healed up better than my stomach. I would say it was about 3 weeks before it was all totally healed.

I think you will relax a bit when you have made your decision. It is never easy to elect for surgery. But I soon realised that I didn't really have an option. I had to try to get rid of the diseased bowel. I discussed all the possible complications but still decided I had to try for a better quality of life. My surgeon is fab, he tells me he is the best and I believe him xxx
 
Wow our stories are very similar and I hope mine stays healthy after this one too! I'll try not too stress too much lol.. My stomach healed very well after the last one so hopefully it will this time. Sometimes I still get pain and pull my muscles inside tho but nothing major. It's nearly 8 months on and I'm feeling better than I have for a long time. Do you work? How long were you off sick for? It's never choosing about surgery and I don't how people put themselves through surgery for example boob jobs. I wouldn't be having this next one if I didn't have too. My surgeon is really really good too he retires in 3 yrs so I want it doing before he retires. xx
 
I still get pain now and again in my stomach. Sometimes I think it could be crohns in there. I am not working again yet. I was made redundant. I say exactly the same, how could you choose to have a boob job or tummy tuck? I think they don't realise what they are letting themselves in for! Glad you have faith in your surgeon, and he must have loads of experience if he is near retirement age. Sounds like you are doing well so no need to think you will have any problems next time. Especially cos you will be so much more healthy.

Good luck Rachel xxx
 
That's where I get pain now and again. Oh sorry to hear that:-( lol I think that too their own fault tho they do it by choice not coz they have too. He does have loads of experience that's all he does and he said my large bowel was the worst he'd ever seen so it must of been bad!:-( I'm so glad I will be so much healthier this and hopefully I won't have any problems. How did you look after your rectal wound? Thanks xx
 
Hi was it done under general anaesthetic and how long did it take? Yeah they do take priority and it varies every couple of days some days pass more than others. I actually get a feeling of wanting to pass a bowel movement tho I know I can't and it's pain with blood too but not all the time sorry for the details lol and so do i! xx

I have a temp stoma and have the feeling of needing to go to the toilet when my stoma works. Its preventing me from getting it reversed. As i end up passing mucus and it's then causing my fissturla/abcess to not heal.

I wish it would stop as my surgeon is so negative as he's now saying if it doesn't heal i may need my rectum removed and have a permenant stoma.
 
Hi Jezer101 sorry to hear that I get it anytime. If I were you I would get a second opinion on it. Good luck and hope everything heals up well for you x
 
Hi hoping to join in with my own similar question. I had an Ileostomy done a week ago and its working great, but my butt is worse if anything. I have perianal disease, ulceration and stricture of the rectum which is actually making it hard to wee. My muscles get confused like they want to push a poop out wheniits my bladder that's full. All that comes out is smears of poo or mucous but the pain is phenomenal and often just kicks in if I'm sitting or move slightly. If I add to that pushing it feels like I'm breaking and its so painful my legs shake. I think I'll need to readmit myself to hospital. Any advice? Could they just dig open the stricture (which is mad tight scar tissue) or is my bum going to need removing coz its too forgone? They were going to try Humira on it, but I can't last that long unless I'm doped the whole time.... Help?
 

Latest posts

Back
Top