ileostomy reversal.

hello
dont know if i can be any help but i will try. i had a temp iliostomy for 5 weeks then they were able to put me back together where the tumor was removed.alot of people seem to be ok with theirs but i had a hard time with mine.im so glad they were able to put me back together.this was in feb.when i had my reversal.things have gotten a lot better but i still just wear a pad because every now and then i do have an accident.and it happens without me even feeling it.i think my muscles are either damaged because of radiation or it just may take time.unlike you i still have a rectum and things have gotten better.dont know if this will be my new normal wearing pads all the time.i hope not.good luck to you and hopefully you can find your new normal.take care and Godbless......johnnybegood

mommyof2kds said:

Thanks for your responses,
Thanks for your responses, all info is helpful. I wonder if anyone out there has had a reversal that had their rectum removed. which pads should I be buying. Are some better than others based on what you have tried. After dealing with all this and then having to go though the incont. after the reversal, just sucks...

I have no rectum however they did make a j pouch out of colon for a new rectum. I haven't had the reversal yet because I'm waiting to get done with chemo. I expect to have this done sometime in November. I'm scared about it too. I did ask my surgeon before my resection that if the reversal on the ileostomy was horrible could he do a permanent colostomy and he said yes. So I'll just take it a day at a time. Let me know how you do.

Kim

Hi,

I'm two years out from my reversal. I basically went the same path you did -- rectal cancer, 5 weeks rad/chemo and than 8 rounds after surgery.

If you have a temp ileostomy than it's likely you had what's called a sphincter sparing surgery which should leave you with some decent level of control. What helped me has been a lot of walking which tends to strengthen muscles.

my outcome was positive and today I have little problems. Avoid a few foods, ensure I don't get constipated.
But all-in-all it's been ok given the alternatives.

cheers.

pamysue said:

Mommyof2
I have no rectum left, but I do have my anus. I think that's where you are headed to be. I control my bowels pretty well. It's taking a while. My surgeon said to give it 2 years after your reversal to really see what you end up with. We've changed my meds and now I take 2 Lomotil 4 times daily, and 2 Colestipol 2 times daily. I watch what I eat and am doing pretty good with this. *crossing fingers* I have not had to use a pad, but I do carry extra panties in my purse and truck. In the words of Jack Nicholson in The Bucket List, "Never trust a fart." Your colon that is at the bottom will learn to stretch a bit and you will learn to breathe through some 'gotta go now' cramps. It's not our old life, but we are alive.
Hope and hugs to you,
Pam

questions about lomotil
Pam, I have been taking lomotil since April of 2008. It's given me my freedom back. Have you had many problems from taking this? If I'm going to go somewhere I take 2 lomotil 1 hour before going out and it usually gives me about 6 hours where I'm not running to the bathroom. I've learned when to take lomotil and when to let nature take it's course. So far I've not had many problems. Do your eyes ever feel funny when you take this? I find that I tend to blink more, my eyes feel a little dryer. My reversal was in Dec 07 and I seem to be having alot less problems. I still feel like I have to go ASAP but it still takes awhile for things to move through and the stool is still smaller. Is it this way with you? Sorry about being so graphic. Are you able to travel? Glad you're doing good.

tiny one said:

questions about lomotil
Pam, I have been taking lomotil since April of 2008. It's given me my freedom back. Have you had many problems from taking this? If I'm going to go somewhere I take 2 lomotil 1 hour before going out and it usually gives me about 6 hours where I'm not running to the bathroom. I've learned when to take lomotil and when to let nature take it's course. So far I've not had many problems. Do your eyes ever feel funny when you take this? I find that I tend to blink more, my eyes feel a little dryer. My reversal was in Dec 07 and I seem to be having alot less problems. I still feel like I have to go ASAP but it still takes awhile for things to move through and the stool is still smaller. Is it this way with you? Sorry about being so graphic. Are you able to travel? Glad you're doing good.

Nothing is too graphic for me
We've been through too much, ya know?

I take 2 lomotil 4 times a day. Morning, lunch, dinner & bedtime. Plus the colestipol, which was originally a cholesteral med, but then found it worked for spastic colon.

I was misdiagnosed for 5 years by my PCP as having irritable bowel syndrome. I had diarreha DAILY and NIGHTLY. He kept telling me to take fiber and reduce stress. After a double hemmeroidectomy, my surgeon insisted I get a colonoscopy. Stage 3... yada yada.

Reversal done Dec 17, 2008. Still with the diarreha... on and on... Then I got C Diff Colitis. Horrid, but in the midst, saw an ER doc who talked to my (new) internist and they started me on the above med regime to treat for spastic colon, which is what it seems I have had all along. Even more spastic now that 1/3 of it is gone and I have no rectum! :-)

I will probably always be on these meds, but I'm starting to slowly find a life. Yes, with the HAVE TO GO NOW. But I can sometimes pause and breathe my way through these. Yes, honestly. Yes, skinny stool... no rectum, no fat round stools. On occasion will have a movement (ok gross...) that seems like 5 or 6 pounds comes out. I go a lot. My bowels are more active at home... have no idea what's up with that. I have to go as soon as I eat. Sometimes a few times through a meal.

Yes, I travel. I don't use diapers or pads. The furthest I have been able to go with the medical bills is to my family's. About a 3 hour drive. Time leaving after breakfast has gone in and out and I can drive the whole way without stopping sometimes. Again with breathing through the cramps. Sometimes I do have to stop. I'm just not in as big of a hurry as I used to be.

I also have to sit back on the stool as soon as I stand up, very often, especially at home. This can get very aggravating. Sometimes I just think, Thant's It! And I try to go relax and let it pass. One doctor told me that 'your bowels are like and old woman, they don't like change'. I laughed and thought he was crazy. But he was right about the last part at least. We're learning to co-exist, me and my new bowel system. You will get there.

Sending you much love, tiny one.
Pam

i had a reversal six months
i had a reversal six months after i was given the temporary ileostomy. i had a lot of problems with control and pain for the first three weeks but improved pretty quickly after that. i was able to comfortably leave my house for a full work day and not be concerned about any issues about two months after the reversal. i was completely back to normal within four months. i had read so many horror stories and was so afraid that i was going to have to live in a bathroom for the rest of my life. i was pretty discouraged with all the pain and frequency issues the first couple of weeks but it did get better and eventually back to normal. my primary tumor was very low but i believe my surgeon was able to save some of the rectum. he told me i could be dealing with getting back to normal for up to two years, luckily it wasn't even close to that!
good luck!

I'm terrified of revesal
I'm supposed to get my ileo reversed next week. I'm so scared that I'll be pooping al day long and quality of life will be horrible. On top of that, I have to get radiation. Scared of butt pain there as well. Lots of pain on the way to healing and getting rid of the cancer.

Mommyof2, have you scheduled your takedown surgery yet? If i were you, i wouldn't worry about the after effects if you get it done as soon as possible. I've heard many people say that the sooner you get the takedown, the less likely you'll have bad problems retraining your bowels. It makes sense since the more time your bowels are used to being lazy, the more time it should take to break them back into shape! I have heard from people here on this board say they had absolutely no problems from their reversal at all!! The surgery for me was a piece of cake, too. The wound healed in no time with a woundVAC, and there wasn't much pain in the wound area. Good luck with it, and let us know how it goes!

Hugs,
Krista