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Crohn's Disease Forum » Surgery » Stoma Subforum » Rectal issues when you have an ileostomy


12-08-2012, 05:20 AM   #1
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Rectal issues when you have an ileostomy

I started another thread under the treatment section but was told people here may have some useful imput. I am very new to learning about stomas so please forgive me if some of my questions sound really obvious!

The background that I posted on the other thread was this: I've had another rectal prolapse. I saw my surgeon who is hoping he can repair this one and is booking me in for surgery to correct it.

The problem is it will just prolapse again - the surgeon was honest about this. It keeps happening (I have an underlying weakness somewhere). He said a stoma would be a last resort as it would avoid all the straining/diarrhoea putting pressure on the rectum and on the pelvic floor (I've had bladder and uterine prolapse too). He didn't want to do this yet though because I'm so young, but if this surgery isn't successful, it will be the only other option (I exhausted conserative measures years ago).

If you have a permanent stoma, is your rectum removed? Does that mean you never go to the toilet the "normal" way and so there's no pressure on your pelvic organs? If you have diarrhoea (I do) all the time from Crohn's, does it make an ostomy difficult because you have to empty it often or is it more prone to leaking and problems like that?

I've been told it will be an ileostomy rather than a colostomy - I'm not entirely sure why or if this makes a difference to how it functions. It will be permanent - again, I'm not sure why it has to be but that seems to be the case.

This won't be happening for a while: I will be having the prolapse repair surgery first and then it will depend on the outcome of that. But the impression I got from the surgeon is that the stoma will be the last resort, and it just depends how many interim repairs of the rectum and pelvic floor we decide to try before reaching that point. But my surgeon has changed his mind about what he recommends before when my condition has developed in ways that he wasn't expecting, so it all still feels quite tentative at the moment.

Also is it weird that I'm more put off by the idea of having surgery and having to be in hospital again (I know no one likes hospitals but I can't stand sitting on a ward all day!) than by actually having a stoma?
12-08-2012, 05:33 AM   #2
Nyx
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Hi! I hope I can answer some of your questions....

The difference between a colostomy and an ileostomy is that a colostomy is made from the large intestine, and an ileostomy is made from the small intestine. Ileostomies tend to have much more liquidy output than colostomies. But, from what I read from other members of this forum, it doesn't seem to be too much of a problem for them.

I have a permanent colostomy, and yes, the rectum should be removed and sewn up, as if you leave it in you have much higher chances of developing rectal cancer. I don't have mine removed yet (my stoma surgery was an emergency so it wasn't done at the same time). I need to schedule that surgery soon though, as my doctor said that you have 10 years from the date of your Crohn's diagnosis to have it done. I suppose having non-functioning parts in your body is a bad thing.

I can't answer your diarrhea question as everyone varies on the amount, thickness, and frequency of their output. For the most part, if you have the right appliance with your stoma, anything is doable. Also, most people find that dealing with the stoma is much easier than dealing with 'going in the traditional' way. It's all about routine....

Hope this has helped...
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Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

12-08-2012, 06:16 AM   #3
Terriernut
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I like Cindy have a colostomy, and my rectum is still there. It does produce mucus occasionally. So I wouldnt say it isnt in use!

It is possible for mine to be reconnected some day, so I will keep my rectum.

I still have a pretty liquid output though, rather like an ileo more than a colostomy. To be honest, having a bag makes my life ALOT easier as I pretty much CHOOSE when to go empty rather than doing a sprint to the loo like I did before. As for leaks, they will happen to all of us at some point. We learn to deal with them, the same as we learned to deal with diarrhea.

I am curious why they are suggesting an ileo for you? Are they suggesting removal of your entire colon and doing a proctolectomy then?
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12-08-2012, 10:53 AM   #4
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Terriernut and Nyx, thanks so much for your help.

I am curious why they are suggesting an ileo for you? Are they suggesting removal of your entire colon and doing a proctolectomy then?
This surgery is not primarily due to Crohn's but because of pelvic floor and sphincter problems. I can't empty my bowel properly because of damage to the nerves and so I end up straining for hours (even with diarrhoea) and having accidents. They think the problem may effect more of my colon because I've had pseudo-obstructions and get "impaction and overflow" diarrhoea. I think the surgeon has concluded my colon is just useless really! When I had an exploratory laparoscopy they said my colon was atonic and impacted. So yes the entire colon would be removed.

The aim of the surgery as far as I understand it will be to bypass all the straining and so take the pressure off my pelvic floor so I stop getting pelvic and rectal prolapses, hemmorhoids and tearing the skin (which have basically been constant/recurring problems for me for years now). From a quality of life point of view, the idea is that an illeostomy will be preferable to hours on the loo straining everyday and accidents (and that it will help with the bladder problems that come from bladder prolapse, because, again, if I'm not straining all the time my bladder shouldn't be so prone to prolapse).

The surgery he's going to try first is to correct the current prolapse and put in some more supports (I've had some put in already) to hold my pelvic organs in place.

They don't know why I have these problems or how they relate to my other medical conditions. I don't think I'm ever going to get clear answers on this. The only way it seems to connect to IBD is that the constant diarrhoea is one more factor putting strain on my pelvic floor. (That's just my speculation, but I can't see how Crohn's symptoms couldn't be making the situation worse!) I used to think it must all be due to one underlying illness, but now I think it really may be that I coincidently have multiple issues, I guess that is a possibility even though it seemed such a remote one to me.

Thanks again for your replies.
12-08-2012, 12:06 PM   #5
Terriernut
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Oh dear. I have to say in that case, I think the surgery they are speaking about would be a good idea.

I would think crohn's is indeed just making things worse for you, and I'm so sorry.
12-08-2012, 01:17 PM   #6
Misty-Eyed
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I have a permanent ileostomy and my life is so much better now I have a stoma! Ileostomists tend to have loser 'output' as the colon is the organ that removed excess water from the stool.

I used to have lots of problems with my rectum and life is so much better without it. I'm having some issues with the area healing but regardless, I wouldn't go back to having to go to the toilet like everyone else. It's like a freedom I've never had before.

I hope you get your problems resolved either way.
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12-08-2012, 07:06 PM   #7
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Hello! I also have a permanent ileostomy--and life is so much easier--no blood, no worry of rectal cancer or colon cancer, I am not sick anymore! Agree with the others in that you learn what works and what doesn't work with an ileostomy and skin care, etc. Yeah, sometimes you may have a leak or two--but, again, you learn which appliances work and you get your own regimen. It's awesome not to worry about having "accidents" in your pants and being in horrible pain 24/7. I was a hair away from cancer--I had massive masses in my colon and lymph node changes--but no cancer. Whew, it was a close one. I'm coming up on 1 year postop from colon and rectum removal surgery--and I'm still amazed. Sorry about your issues with prolapse and weakness in the pelvis. I don't have a uterus or ovaries (they yanked those out as well) so I worry about bladder integrity--but I'm trying not to borrow trouble. Hopefully you can get tightened up and if you are worried about the possibility of an ile---just know that you will be able to handle it---you have put up with a lot! Take care. Dana
12-10-2012, 08:04 AM   #8
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Thanks for all your advice and thoughts. It's great to see some people are positive about having to have ostomies.

I know ostomies aren't fun and you wouldn't choose them, and that for some people they create more problems than they solve. But I don't see an ostomy as any more of a big deal than illness in general. I'd love to be "normal" but I'm not and if this is a more comfortable option than my current state, that seems a good idea to me. I hate having surgery, and I worry about complications, but the actual look of the bag is not something I can say concerns me especially if it's preferable to all the hours doing damage to myself on the toilet! :P It's nice to see other people who've been able to handle ostomies and live with them.
12-10-2012, 02:47 PM   #9
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I totally dig my stoma. They are quite entertaining at times.
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12-12-2012, 01:32 PM   #10
Hobbes650
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I have a permanent ileostomy and my life is so much better now I have a stoma! Ileostomists tend to have loser 'output' as the colon is the organ that removed excess water from the stool.

I used to have lots of problems with my rectum and life is so much better without it. I'm having some issues with the area healing but regardless, I wouldn't go back to having to go to the toilet like everyone else. It's like a freedom I've never had before.

I hope you get your problems resolved either way.

Ditto. Can't add one thing.
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Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

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12-12-2012, 04:35 PM   #11
Misty-Eyed
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Yeah having a bag is brilliant. I literally went around the first few months of having mine wondering why EVERYONE didn't want one.

Imagine never needing to feel like you need to go the toilet EVER again. Well, that's my life and it's great! I also now think that farting is the most disgusting thing ever now that I don't do it anymore lol
12-12-2012, 04:46 PM   #12
Hobbes650
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........ I also now think that farting is the most disgusting thing ever now that I don't do it anymore lol

Actually, that's the part I miss the most. No more "pull my finger" jokes.
12-12-2012, 04:50 PM   #13
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What's really weird is getting the urge to fart, panicking, and then realizing I can't even if I wanted to. It makes me laugh every time!
12-12-2012, 04:53 PM   #14
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Of course we can fart! (and clear a room) We just do it (sing it now...) Ouuurrr waaaaaaaaaaaaaaaaaayyyyyyyyy. As in burp our bags. (two piecers anyway)
12-12-2012, 04:58 PM   #15
Hobbes650
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Of course we can fart! (and clear a room) We just do it (sing it now...) Ouuurrr waaaaaaaaaaaaaaaaaayyyyyyyyy. As in burp our bags. (two piecers anyway)

Without the sound effects, it really doesn't count.
12-12-2012, 04:59 PM   #16
Terriernut
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Awww Hobbes...you forget, the silent deadly ones!
12-12-2012, 05:01 PM   #17
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Oscar makes the loudest farting noises ever!! I never farted like that when I was "normal"....lol He's like a frikkin' lumberjack....lol
12-12-2012, 05:03 PM   #18
Misty-Eyed
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What's really weird is getting the urge to fart, panicking, and then realizing I can't even if I wanted to. It makes me laugh every time!
hahaha yes I still get that! It's nice being able to relax my bum cheeks and know that nothing is going to come out!

I was actually on the loo today emptying my bag when I suddenly got a big urge to fart. Then remembered that it was all in my head!
12-12-2012, 05:05 PM   #19
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Mine sometimes makes noises when he farts but they don't sound like farts. They sound like weird alien squeaking noises. If I announce what the noise was, no one has idea that that's what it was!
12-12-2012, 05:20 PM   #20
Susan2
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The surgery he's going to try first is to correct the current prolapse and put in some more supports (I've had some put in already) to hold my pelvic organs in place.
...
When is the surgeon going to do this? Is there a decision on timing yet?

I, too, am able to lead a very different life since I had a proctocolectomy and my stoma was installed.
12-13-2012, 10:45 AM   #21
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Lol I love the turn this discussion has taken.

When is the surgeon going to do this? Is there a decision on timing yet?
The surgery to repair my latest prolapse should be "soon". The surgeon said it wouldn't be a long wait since it's an external prolapse which needs correcting because if it's left it will get worse. I already went through the pre-op assessment and filled in the forms for surgery, which seems like a sign I won't be waiting that long. I'm thinking maybe several weeks time (based on how long I've waited for previous surgeries).

But it's the NHS so anything can happen - it's never much use trying to get a definite date out of them! I've had a surgery postponed at the last minute before, but then I also put down that I was available at short notice, so if they get a cancelation I might get a call any time telling me to come in tomorrow.

In my mind, the timeline is: minor repair probably some time in the beginning of the new year. Wait a few months to heal and see if it worked and get follow up appointment with surgeon. Then make decision on ostomy.
12-13-2012, 12:28 PM   #22
Terriernut
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I hope for your sake it's sooner rather than later!
12-13-2012, 03:34 PM   #23
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Thanks, me too. Waiting for surgery makes me so anxious. I hate being in hospital! This next operation I should either go home the same day or only stay one night though, which isn't so bad.
02-01-2013, 09:35 PM   #24
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I have Crohn's,and it did indeed turn into rectal cancer.Thank God it was caught at a stage 2.My problem is I did have colostomy surgery,in fact I have had 2 of them,neither one has functioned right.Now on Feb.7th I am having a Proctocolectomy and Ileostomy surgery.I hope no one else has had the problems I have had.If you are young I hope they don;t have to do a permanent Ileostomy on you,but I am sure your Surgeon will do what is best for you.Good luck and I hope your next surgery is a success.
02-02-2013, 07:04 AM   #25
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I'm so sorry to hear that debbie.

I'm young enough that cancer isn't something I or my doctors have been concerned about yet. I have a very good surgeon, so if I end up with an ileostomy I'm confident it will be for the best.

I hope your next surgery goes well. You must have been through so much already. I hope this time the surgery brings you better health and that things get easier for you from here.
02-02-2013, 08:10 AM   #26
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Like many people here I have an ileostomy and it changed my life. My Dr. suggested it and I said "No Thanks". He then said, no more Crohn's, no more medication. I then said "Yes Please". It takes a little time to get in a rhythm but it was the best thing I have ever done. No more pain. No more on the toilet 15 times a day. My entire large intestine was removed. People go poop, I just happen to keep it in a different location. It has been 4 years and I don't even think about it anymore. It's amazing how trivial it seems when you can actually just get on with your life.
02-02-2013, 12:29 PM   #27
Hobbes650
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Pie-Guy,

Ditto! "No More (fill in the blank)" is exactly right. Except the Crohns part
(no cure yet), that could come back sometime. With me it was 25 years later (now), and it hasn't been so bad- I have no urgency so I don't have to live near the restroom. Best decision ever by far. I do see the negatives as trivial now, that's actually a great word. The surgery is life saving and that's what makes everything else trivial- too bad people don't talk much about the life-saving part.

Last edited by Hobbes650; 02-03-2013 at 12:44 AM.
02-02-2013, 05:01 PM   #28
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I'm having probs with my rectum right now the pain and blood and it's three months today till they remove it. In so much pain now so can't imagine what I'll be like in a few months -.-
02-03-2013, 06:10 AM   #29
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I'm having probs with my rectum right now the pain and blood and it's three months today till they remove it. In so much pain now so can't imagine what I'll be like in a few months -.-
That sounds awful CheerBear. I hope you manage the next months ok and that the surgery brings some improvements.
02-03-2013, 06:58 AM   #30
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Just comes and goes but seems to be more frequent lately. I'm dreading everything about the surgery as well.
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