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Reversal of IIeostomy rectal cancer.....Bowels not working properly

liscoly39
Posts: 1
Joined: Aug 2010

Hi my name is Elisabeth and I am from the UK. I suppose your wondering why I am on this site and that I should be on the UK site, but every time I put any heading for my problem it always referred me to the US site. I was diagnosed with Colonrectal Cancer last year September had my surgery in November 2009 where they removed a section of the sigmoid where the cancer was and attached it back together. Unfortunately I had to let my colon rest/recover and heal so I was given a temporary Ileostomy which I had for 9 months and just three weeks ago had the reversal. Before the operations my surgeon who has been amazing did say it could take up to a year for my bowels to be back to normal. I didn't care I was just so happy to know I was getting the reversal done and hopefully be back to normal. Well little did I know. And from reading from different sites and learning that people who have had the reversal are having problems with their bowels. Well since the reversal I have had 5 accidents with my bowels not being able to get to the toilet on time and just constantly going to the toilet. This has resulted in me having sore buttom every time I go to the toilet. I have been given creams to use which has helped. When I left the hospital they gave me Laculose to help me with my bowels movements. I have stopped using Laculose as it gives me a watery poo and is the one that gives me accidents. I have since then tried Senokot which I take in the evening around 8pm in order to give me bowel movement the next morning. What is happening is that within 1 and 2 hours of taking Senokot I am running to the toilet constantly for the next hour. The next morning I do get bowel movement as well. My biggest worry for me is that I dont feel that my BOWELS can move on there own without the aid of Senokot or Laculose. I have tried not taking Laculose or Senokot to see if my bowels can work on there own but when I did this my BOWELS did not work whatsoever. And I am again relying on Senokot to give me bowel movement. I have read on the US sites many people use Citrucel and it works. Can anyone tell me if Citrucel is on prescription or can you buy it over the counter? I have friends as cabin crew who fly to the USA all the time and can get this for me. If anyone out there can advise me on what I can do in order that my bowels can move on their own or any suggestions would be a great help. I just need some answers. Liz

khl8
Posts: 810
Joined: Nov 2009

Hi Liz,
Citrucel is a fiber supplement that can be purchased over the counter at any drug or grocery store. It is not a prescriptiion and there might be a different brand available to you in the UK.
I had my reversal last September and it take a while to adjust. I too had accidents but it does get better, it just takes time and patience. I am just about as normal as normal can be for someone who has had all the surgeries and my life has continued on. On occasion, I have a "bad day" where i go to the bathroom alot, but have begun to see the pattern in relation to what I eat. So, it is a balancing act on what foods help you go and what foods stop you up. and again this all takes time.
Kathy

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

Welcome to the boards, but sorry to hear you are having a difficult time with your reversal. Everyone is different with their reversals with some flying by without any problems and others experimenting to get the right new "normal." Me, I'm still trying to figure it out but it is better. At first I went about 35 times a day - most of the time just would go, get up to wash my hands, and have to sit right back down again. Started taking metamucil to bulk things up but still was going 20-25 times a day. Don't feel bad about missing the toilet - that is very normal. I still don't make it to the toilet always and it has been 9 months for me, but it is getting better. Doctor told me up to two years before I could be semi normal again. I still have clustering but it's better. Sometimes an hour after I eat that is my time to go to the bathroom. Just depends on the day for me too. Good luck

Kim

classicman's picture
classicman
Posts: 34
Joined: May 2010

Sounds just like me, i use the Metimuscil alot to bulk up, and Imodium to slow the trips to the bathroom down, i still have the occasional mess, but its only been5 months since my reversal, but this beats wearing the appliance bag in my side.

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Elisabeth,

I don't have any knowledge of Citrucel but wanted to welcome you to this forum.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi Liz... My story just about the same as yours "they removed a section of the sigmoid where the cancer was and attached it back together". After my iliostomy reversal it was CRAZY with going 20 to 30 times a day (Clustering)I HATED IT!!!. Then I moved to Oregon and seen a new doc. She was WONDERFUL and told me that because of my age (46) that I should be on a reg diet and be taking Imodium as needed. OMG I finely have a life. I have trained my bowels to go at night so I can do things during the day. I go like 3 or for times or until I think I have gone a "Large BM" then take my Imodium (1 1/2 tabs) then don’t have the urge till the next night. It's GREAT!!

PM me if you have any questions

Brooks

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Brooks, i will be see my surgeon again on tuesday to discuss a reversal again, I am hoping he says ok, even though my cancer is still spreading i would like to go ahead with the reversal,

With going to the bathroom so much, did you loose weight?

And what is your regular diet?

Take care
Winnie

John23's picture
John23
Posts: 2140
Joined: Jan 2007

If you're still going to do chemo, you'd be better off keeping the
ostomy until your finished and on your way to better things.

Having that "porta-potty" on your side, is better than the rush
to find a toilet, only to have your rear-end scorched by the
acidic output.

Just sayin'...

John

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi Winnie..

I did have some weight loss but I think it was do to the fact that I didn't want to eat anything because I knew what goes in must come out. My diet now is just about anything I want to eat. I find myself eating more fruit then I did before cancer and no more red meets. I do eat more smaller meals 4 to 5 times a day then 3 big ones and I do snack more now.

Brooks

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Do yourself a favor and poke around at this web site: UOAA

There's a wealth of information on the "general ostomy" forum, and
special forums for "takedown", etc... The archives are loaded with
answers to any question.

Good luck, and better health!

John

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

Hello Elisabeth! A partial resection usually has good results. Be patient. The site John posted is a really good site and has a post takedown forum as well as a general forum and a few other specialty forums. A fellow named Terry (also from the UK) will at some point chime in if you post something. If he does, listen to him. He is an amazing man who has had quite a journey. There are plenty of other people there with decades of experience to share. Quite an amazing group really (like this one!).

You might try googling MD Anderson Bowel Management. You should find several excellent articles. One covers the basics, one for constipation, one for loose stools and yet another for bowel training. All great stuff. I used to try and keep the links handy, but I can't seem to locate them at the moment. You might find the links on this board by searching for "Anderson Poop Protocols" (that is what I liked to call them).

Your post takedown journey is quite different from mine as I have no colon left, but the resources are largely the same. Welcome and good luck! Here is to many good stools in your future! Be warned the cancer types on these forums can be a very odd group of people - watch out for Kerry from this board especially.

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