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ileostomy reversal.

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Hi all. I don't post often, but I think you are all amazing and you offer such great info and support. I was dx'ed in feb, 08 with rectal CA.stage 3. I had 5 wks chemo/rad and then surgery where I ended up with a temp ileost.. I am presently doing chemo every 2 weeks for a total of 8 cycles. So far I have done 3 of 8. I have heard so many neg outcomes about ileostomy reversals and pain afterwords etc... Can anyone share their stories with me. There has to be some positive stories about reversals out there.. Also, since I have no rectum, I was wondering how are you able to control bowel movements, adult diapers etc.... not sure what to expect. Thanks in advance for any info you can offer me.. God bless you all.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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

tiny one
Posts: 467
Joined: Jan 2009

I am one that has had alot of problems from my reversal. My surgeon says it's from the radiation that I received. I had my ileostomy for 10 months. I was reversed in Dec 2007. I wear a pad at all times. I try not to eat to large a meal and avoid alot of foods. I do have better control now but it took quite a while for that to get better. I don't work. When I feel like I have to go and it's urgent I run to the bathroom and it takes me quite awhile for things to pass through. Sometimes after I start to get soreness. Right after my reversal the frequency was as much as 19 times a day. I take meds now, lomotil, to keep stool from continously slowly moving thru. I usually get some relief for a few hours after I take the meds. This reversal was harder on me mentally than the cancer treatment. I take it one day at a time now.

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

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...

tiny one
Posts: 467
Joined: Jan 2009

I have tried poise pads when I travel and they work very well. Their heavier than maxi pads. For a small person I hear that pull ups instead of depends work pretty good. Also I carry flushable wipes in a zip lock bag, it makes cleaning up easier when I go out.

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

HI Kim, thats good how they made a pouch rectum for you, I didn't even know there was such a thing or i would have asked my surgeon. I have read a little about bowel retraining, but don't get how that works.. either you can hold it or ya can't... I just can't imagine the thought of a perm. colostomy.. I guess its a no win solution heh...

yncpo
Posts: 2
Joined: Dec 2009

Diagnoised with stage 3 rectal cancer in April 07. Chemo/radiation for six weeks. Rejuvenate for 8 weeks with tumor removed 25 Sep 07. Rejuvenate for 5 months while wearing a bag. Had no problem with the bag other 7 times the adhesive did not hold. Reversal 15 Jan 08. Have had little relief from constipation/diarrea. Number of GOOD days far less than not so good days. Balmex has provided much relief from burning of the butt. Have small bowel movement without my knowledge until the burning. Surgeon said it would be a year or two before I got back to a somewhat normal life. I am waiting for the miracle to occur. On my really GOOD days I don't go to the bathroom at all and can do most things I did before. On my not so good days, 10-15 trips to the bathroom is not unusual. A feeling of not completing a BM is very common. Two good days in a row is seldom. A BIG DUMP usually precedes a good day. I wear guards for men (pads) always.
I have taken the same approach as you, one day at a time. Do what I can when I can. If you, or anyone has any suggestions on what I can do, or what they have done, I would appreciate it if they would please share their thoughts.

Thanks,

Charlie

NWGirl
Posts: 124
Joined: Jan 2008

If anyone is interested, the UOAA web-site has a separate group for temporary ostomies and reversals - here's a link - http://www.uoaa.org/forum/viewforum.php?f=25

I had my ileo for a year while I healed and went through chemo/radiation. I have no rectum. It took about 8 months for things to finally get to a point where it was managable, but I can live with what my "new normal" has evolved into.

The UOAA web-site has a lot of people going through this transition if you want to check it out. Some have great success, some don't - lots fall in between.

funnyguy
Posts: 90
Joined: Jan 2007

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's picture
pamysue
Posts: 105
Joined: May 2008

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Thanks for all your responses.

tiny one
Posts: 467
Joined: Jan 2009

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.

pamysue's picture
pamysue
Posts: 105
Joined: May 2008

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

Moesimo's picture
Moesimo
Posts: 1075
Joined: Jul 2003

I had all of my rectum removed and a temp. ileostomy. I then had the reversal 5 weeks later. I did not do well after the reversal surgery and spent the next 18 mos. in the bathroom or looking for one. It was awful. I then made the hardest decision in my life and had a colostomy done. That was in 1/05. I haven't looked back and I do not regret my decision.

I have alot of damage inside from radiation. The best thing is that I am still NED and am 6 years out from my surgery.

I am not trying to scare you, there are many on this site who had the reversal and did fine, I was not one of them. My tumor was very low. I also had the spinchter sparing surgery, Let me know if you have any more questions,

Maureen

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Hi Maureen, I am curious. you had a reversal just 5 wks after surgery. Wondering why they did it so fast? Sorry to hear you had such a hard time with the reversal as with everyone else that had a hard time. I am so nervous about it. I have been off work since feb. so I will need to go back to work after recovery from that surgery and I am wondering how do you deal with that when you are at work-spending so much time in the bathroom. I don't know. I guess I just have to wait and see what happens. Thanks for your input... Petrina

soyoung
Posts: 1
Joined: Aug 2009

Hi i have had rectal cancer for about 2 years now and i am only 24. i have gone through radiation, chemo and 3 surgeries. i am still on chemo and i also have a colostomy bag. my stupid surgeon keeps on telling me that it can be reversable but i can tell by his expression that there is little hope for that. I long for so much to have a reversal but when i have read these comments i feel so scared. i didnt know that the aftermath and effects will be harder than the treatment itself. i too had had my rectum removed. believe it or not i am still in denial. i dont go to school or work anymore. this colostomy bad is so hard even though i have gotten use to it..but at times i just want to rip it out and dont want to deal with it anymore. i hope that there are also positive outcomes of ileostomy reversal.thank you for listening to my story

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Soyoung, you ARE so young! It's a shame you've had to go through this so terribly young! I hope that you've visited the ostomy website to see how to adjust to your new appendage. I understand what a nightmare it can be. I had an ileostomy, and there wasn't much in the way of controlling what, where and when "stuff" would come out. I've heard with colostomies, there are ways to learn how to control, or anticipate "stuff" coming out. There are also belts, and covers for those who do not have to continuously where a bag.

I would put some pressure on that surgeon of yours if you really want a takedown. If it can be reversed, might as well reverse it. I reversed mine, and most days i regret it, but i have a chronic stricture that's causing me a lot of hell. If i didn't have that problem, i think things would be pretty close to normal right now. Not everyone has the difficulties associated with a takedown, and being so young, you have a definite advantage.

Please keep us updated on your progress!

Hugs,
Krista

katienavs's picture
katienavs
Posts: 88
Joined: Nov 2006

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!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I can only speak for myself but I have a permanent ostomy of the sigmoid region...I can tell you honestly that it has had no ill effects for me as far as use or ease of getting use to. I know its not something that anyone would wish for but in the event that you decide that the reversal is to hard to cope with remember that the colostomy is no problem at all and there are no control issues involved with it either. I wouldn't tell you this if I didn't honestly think that it can be a viable alternative to people that are struggling with a reversal...An ostomy is a piece of cake in the grand scheme of things.....Good Luck to you.........

pluckey's picture
pluckey
Posts: 472
Joined: Jul 2009

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.

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Hi Krista, the take down is supposed to be 6 wks after my chemo is done which will be in dec. I had my resection and ostomy on june 2. that will be 6 1/2 mths with the ostomy. I can stop chemo and get the reversal done, but will just have to finish the chemo after the surgery. I thought it would be better to get the chemo out of the way and then the surgery. Should I do it sooner and just finish the chemo after? So hard to know what to do.. Thanks Petrina

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

I am waiting for chemo to be finished. I just didn't want to have to deal with chemo and after effects and then a reversal. I say take care of one problem at a time. My surgeon won't do it it in the middle of chemo anyway but I wouldn't want that either.

Kim

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

My husband made a good point, all the ostomy output I get from the chemo would be worse if I had a reversal and then had all the diarrhea when it may be difficult to control after anyway. I would probley be making one issue alot more difficult if I did the ostomy and then finished the chemo..

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

I had such an argument with my oncologist about this issue. Whether or not to get the takedown before i started the six months of chemo. I had heard about the time crunch with having bowel re-training problems, and didn't want to mess around with it. My oncologist strongly recommended that i do the chemo first to be aggressive. I didn't want to. He presented a strong argument, and won. Well, my surgeon could have done the reversal six weeks after the January 08 resection, then i would have needed maybe six more weeks to heal. As it was, i didn't start chemo until three months after the resection anyway!!! By the time i was finished with chemo, i had lost my insurance, and took a while to get it back. Then i couldn't schedule the takedown because my surgeon was booked. Finally, the takedown was scheduled for February, 09. Guess what?? They found a tight stricture while i was on the table, and she couldn't dilate it enough to give me functional bowels. I received two more dilations over the next few months, and finally had the takedown on May 1st. As a result of all this, i have not been able to get a colonoscopy for these two years since diagnosis. We're supposed to get one every six months for the first year or two, so i'm a few behind (no pun intended)!

Now my body is exhibiting all of my pre-diagnosis symptoms, and it's very probable i have a recurrence. Two years is the time most people get their recurrences, if they're going to get one at all.

This is a bit of a touchy subject for me because it's been the story of my entire journey. I was symptomatic two years prior to diagnosis, and if the docs had been doing their job properly, i could've been diagnosed as a stage I, or II, and be may be lacking many of the problems i have today. Nothing can be done about that, but i do hope that what's happening to me doesn't happen to anyone else. Information is power, and that seems to be the main thing us "non-medical" CC people can give to one another. I truly believe many of the doctors we have to deal with just don't know enough. Our own bodies, of course, know much more.

I wish you all the best with it, and please remind us of your reversal date in December so we can wish you the best, and pray for an easy recovery!

Hugs,
Krista

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

My goodness, what a journey you have had, sorry to hear of all the things that you have been through. I really hope it is just a nasty hemmroid that you have, hoping that you are able to get your colonoscopy soon for peace of mind. I guess I am going to wait till the chemo is done for the reversal, I would like to get the chemo over with rather than just delay it. Not sure what will happen after that, I guess it will be a wait and see issue. Wishing you all the best.. Petrina

Moesimo's picture
Moesimo
Posts: 1075
Joined: Jul 2003

I actually had my reversal about 8 weeks after my resection and not 5. (sorry) That was 6 years ago. I was given the option of having it done before or after having my post op chemo. I was still out of work from the surgery and wanted to be reversed so I went for it. Unfortunately it did not work for me, I was the first patient that my doc had to do a colostomy after a reversal. So I am definitely the exception. I still would have done the reversal and I do not regret the colostomy. I had all of my rectal tissue removed and have alot of radiation damage. I also had 2 bowel obstructions in that 8 week period and both required hospitalization.

If I were you I would go ahead with the sugery. Please email me if you have any more questions.

I wish you the best.

Maureen

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

My ileostomy takdown recovery wasn't too bad. It has been 3 mths now and I am guessing what my new normal will be. I have never had incontinence issues or running t obathroom etc... I did have an ileus at the beginning, NO constipation, but issues with the stool moving to the rectum to give me the urge to go.. So now, I have learned, that even if I don't feel the urge to go, attempt pushing every day and I will have a bowel movement, the pushing stimulates the stool to move to rectum and gives me the urge to go. BUt I usually have to stimulate it by daily pushing. BUt I can live with that... Hope all is well with you guys.

SNassy
Posts: 1
Joined: Apr 2011

Hello My name is Suzan, and I got my reversal done back in 1996, I was the second case that the doctor performed on, and it was a great success, I do not take any meds, nor do I have an issue with it, the only issues I have is at night when or if I am stress my bowels will go on their own....
But if you stop eating after a certain time you will be able to control....

Try not to eat too many gasey foods.

La.Grammy
Posts: 35
Joined: Apr 2010

My husband had his ileostomy reversed in 2009 after having it for 7 months.
I had found information about kegel exercises online.
He did the kegel exercises 10 to 15 times a day for about 2 months prior to having his reversal.
After the reversal he was amazed that none of the bad things that we were expecting happened.
You can google Kegel exercises & get the information.

Hope this helps

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i have my reversal in two weeks so am goggling kegel now.
thanks,
pete

tootsie1's picture
tootsie1
Posts: 5016
Joined: Feb 2008

I don't have any info, but I'm praying it goes very well.

*hugs*
Gail

John23
Posts: 1832
Joined: Jan 2007

Well, first of all, I doubt anyone would recommend a reversal
prior to the completion of chemo treatments, and/or the possibility
of continued chemo treatments. An ostomy takes a whole load
off your rear-end, as far as burning from diarrhea, etc.!

Secondly, it makes a major difference "how much" of your
intestines have been removed, to be able to fathom what type
of results of a reversal will have.

For instance: If the ileocecal valve has been removed, output
will generally be faster and looser. If a large percentage of
your colon has been removed, there will be very watery and
loose output, along with very frequent output.

There are also various of rectal/anal removal procedures, all
that can make a dramatic difference in control, or lack thereof.

The gang over at UOAA can be of great help to you, since
they deal with ostomies specifically (not always cancer related).

The bottom line? You can always get a reversal at a later time,
so -do not- rush into making a decision!

In 2006, I was demanding a reversal, but was told it was too
soon after my initial surgery for a reversal. Now.....I'm glad I
didn't get the reversal. Only one foot of my colon remained, and
the ileocecal valve had been removed; my output back then
would have been as liquid as it was out of the ileostomy, and
very difficult to manage.

Today, now that I've recently lost 1/2 of my small intestine, my
output through the rectum would have been a continual event.
I much prefer being able to choose a place to empty my pouch,
than trying to find a clean toilet (or any toilet) every fifteen minutes
or less, all day and night.

You've got to weigh -your- situation, not base your decision
on someone else's experience.

I hope that helps?

Best of health!

John

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Seems to have been revived.

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