Colectomy with ileostomy

[joshw2011]

Hello! I am scheduled to have surgery on January 26, with a total colectomy and ileostomy. My whole rectum has problems, but the surgeon does not want to remove the whole thing. First, he says removing the whole thing would require pelvic surgery in addition to the abdominal surgery, so he wants to avoid that. Second, he wants to leave some rectum in case I hook back up. However, I know that isn't recommended with Crohn's, but who knows what will come up in the future, right? I mean, I hopefully have 60+ years left to live, so hopefully something happens in that time

He is aiming to do it laprascopically, but will switch to open surgery if there is a complication, or my colon is too trashed (which it very will could be at this point).

My one question (for now, I have read a lot of other people's stories) is for those of you who have a rectal stump, how often do you have a "bowel movement" ? The surgeon mentioned I would, which I figured would happen, and he said it happens very rarely. So I'm just wondering does that mean once a week, once a month, etc. Just a general guess would be nice

If I have more questions, I will ask, but I will make sure to walk a lot once I am able

 

[Terriernut]

I go anywhere from once a week, to once a month. Some folks pass mucus everyday. So there isnt a 'normal' I dont think!

The first time it happened to me, I was still in the hospital and no one had warned me. And I was none too pleased I tell you. Frighted the 'shit' outta me!

 

[PsychoJane]

I'd say I pass a little bit everyday. Certain days are worst (periods) because there is inflammation around. I get the psychological/physiological effects when I'm sick(stomach flu) or even when I take the prep for a scope. It's like an amputee I guess, my rectum is more active in these situation (2-3 times a day let say). It has never been annoying or a problem though.

 

[Nyx]

I pass mucous every day almost every time I got to the washroom. It doesn't hurt or anything, but like Misty, no one told me it would happen so I was very surprised the first time....lol

 

[Crohn'sFor Life]

I pass mucous every day. Usually not enough to stain my boxers. As long as I give it a wipe whenever I'm sitting on the toilet, there is no problem.

But I gotta tell you that I had loads of liquid/mucous/blood discharge for the first few months after the surgery. I found it to be extremely annoying to have to wear a diaper even though I could not shit outta my butt anymore!

 

[ang_gen]

i just had Ileostomy surgery on the 4th of this month.i had it done laprascopically and did great.I was only in the hospital 4 days.I still have a home health nurse coming out and helping me with my new appliance.I pass mucous about every other day...not much at all.Mine always had blood in it though.I have several fistuals and most of my rectum is infected with Crohn's.But all in all, I am happy with the surgery!Good luck!

 

[joshw2011]

Thanks for all the input! If you don't mind, could you tell me how much of your rectum is left vs how much/often you go? Just wondering if less rectum (like I will have) means less frequent movements or anything? thanks

 

[Terriernut]

I have my entire rectum and a bit left. Just lucky I guess! And I'm the one on the stoma subforum that NORMALLY only goes once a month.

But I must say...it's MOST satisfying when I do!!!! :ylol:

 

[Crohn'sFor Life]

My surgeon said he left a small stub. Just enough if I ever want to reconnect something to it.

Current frequency: a little bit every day, but not enough to ooze out and stain my boxers.

 

[joshw2011]

Hello! My surgery went well, just very long. Got to do it laparascopically, and he left 14 cm of my rectum, in case something happens in the future allowing me to get hooked up with my Crohn's.

I came home Tuesday, so this is my 3rd full day home The pain is a lot better, just sore and tired.

I have a question. At the stoma site, it seems to feel funny a lot. I can't tell if this is just healing so it will go away, or if it's moving stuff around inside? When it happens I like to look and see if stuff is coming out, but usually nothing is. Is this something a lot of you have felt and then it went away? It's not painful or anything, more like tickling. It just can be annoying haha, but not painful.

 

[Terriernut]

Josh, our stomas like to move around and have a 'nose' on whats going on in the world around them LOL! And when they are babies, they seem to tickle when they do! Normal! But they are also shrinking, and that causes a real tickle!

Glad you are home!! Best place to be, as long as you have someone there to look after you that is??

 

[Samboi]

Hi Josh.
I do one to three mucus poops per day. Sometimes with a little blood.
I had Botox injected just before my op - to try and avoid the op (epic fail!!) so I don't get much warning - but I'm used to that!
My stoma is also at the shrinking stage - and tickles a lot. At first I didn't mind the tickle - now I find it slightly unnerving! Sometimes I panic that a bit of food has become stuck!

 

[joshw2011]

Ok, I have a question now, probably gonna call the doctor's office about it.

I changed my bag today so got everything all clean and looked at it closely. The stoma has white stripes at the base, right by the skin, spread out every few millimeters or so. They look like maybe stitches? I really don't know though. My mom says it looks like the stoma got a little longer to her, I can't say because I didn't get too close of a look last time.

I'm just worried that it might be protruding or something. Anyone have similar experiences? Thanks.

 

[Terriernut]

Josh, those probably are stitches. And they should disolve. But if they arent disolving, the stoma nurse will have to cut them. (yes..it hurts)

Your stoma will get longer and shorter too, yes! Stan certainly does. But you dont want it to get too long or too short. If it stays too long, you need to have that looked at.

 

[2thFairy]

I have the shrinking tickles right now...today it is driving me batty and I can't concentrate on work. Glad to know this is normal and not an early sign of yet more skin breakdown under the flange. (ugh!)

I pass mucus at least once a day now (4 weeks after surgery), especially after having dairy.

 

[Terriernut]

The shrinking tickles should stop soon! Usually 3 months and you are done. Then they just tickle when they want to irritate us!

 

[joshw2011]

Thanks for all the help! Another question (or more like me pouring out thoughts haha)

All of my problems recently were in my colon, nothing in small bowel, upper gi, etc. So the colectomy should have gotten rid of all the problems (for a while anyways). Was fine for 2 weeks, but a couple days ago started getting abdominal pain again not related to eating, it's just achy, upper-middle abdomen. Not near any stitches really, so it doesn't seem like it's from surgery, plus it just started 2+ weeks after surgery. I'm worried my Crohn's is back already

But anyways today my stoma output is different than normal. It will do its normal tickling, then gush out a bunch of output, with quite some force, enough to make it fly a bit inside the bag. It's much different than before, when it would be little amounts at a time, more oozing out than flying. Curious if these changes happen to you all, if it's just depending on what I ate and such? Thanks

 

[2thFairy]

I wonder if you are dehydrated. Dehydration can cause abdominal pain and muscle aches (among other things).

 

[Terriernut]

I would hope that it was something you ate. It takes awhile for your body to adjust. Just make sure you are drinking plenty of fluids.