Managing Bowel Movements

alihamilton · January 2005

My husband has been doing well since his treatment for Rectal Cancer Stage 111 with 11 out of 18 nodes involved, dx July 2003. He has been working half day, which often turns into a full day, and has put back on nearly all the weight he lost during surgery and post surgery with all the complications he had.

The one things that really bothers him is the increase in bowel movements, often at a moments notice, that affects his life now. It is OK when he is home and can get to a bathroom quickly but he worries that it will happen when he is at work. We also cannot go out to dinner at friends or anywhere for that matter. Much of the time he has some measure of control and has actually had very few accidents but there are some days when he makes many trips to the bathroom and we cannot seem to identify any particular food that causes this.

Any ideas please? Our oncologist does not seem too concerned and said that even a year post treatment, things could improve.

SPEDTEK · January 2005

It has only been 4 months for me since my chemo and radiation. I had Stage II rectal cancer with no nodes involved. I thought I was the only one having this problem. I, too, usually only have a moments notice, and I agree this badly effects your life. Unfortunately, I, too, have had several accidents both at home and out.

I am sorry I dont have any advice for you, but I was glad to know I was not the only one being effected this way.

gina

Moesimo · January 2005

I also had stage 3 with 2 positive nodes. I did have a temporary ileostomy which was reversed after 8 weeks. I can totally relate to what your hubby is going through. IT IS AWFUL AND TAKES OVER YOUR LIFE. I have tried every thing to help me. I was on lomotil, tincture of opium , immodium, fiber, metamucil. I even gave myself shots of sandostatin. Nothing worked and there were no foods that made a diffence. I am tired of looking for the bathroom. If you live near me, I know where they all are. I am also tired of having a sore butt. My tumor was just to low to save my sphincter and have it work right. And the accidents are VERY EMBARRASSING.
I will be having a permanent colostomy on Friday. I hope it improves my quality of life. I just turned 48 on Thursday. I work full time and do not want to spend the rest of my life looking for a toilet. It took me 19 mos. of way too many trips to the loo. to make this decision. I think I am finally ready. I have told very few paople that I know that I am doing this. I haven't even told my sister. {she has a big mouth} If I am able to pull it off with out her knowing that will be great, but she calls alot and knows I was considering doing this.

Good luck with your husband, and pray for me on 1/14.
Maureen

alihamilton · January 2005

Moesimo said:
I also had stage 3 with 2 positive nodes. I did have a temporary ileostomy which was reversed after 8 weeks. I can totally relate to what your hubby is going through. IT IS AWFUL AND TAKES OVER YOUR LIFE. I have tried every thing to help me. I was on lomotil, tincture of opium , immodium, fiber, metamucil. I even gave myself shots of sandostatin. Nothing worked and there were no foods that made a diffence. I am tired of looking for the bathroom. If you live near me, I know where they all are. I am also tired of having a sore butt. My tumor was just to low to save my sphincter and have it work right. And the accidents are VERY EMBARRASSING.
I will be having a permanent colostomy on Friday. I hope it improves my quality of life. I just turned 48 on Thursday. I work full time and do not want to spend the rest of my life looking for a toilet. It took me 19 mos. of way too many trips to the loo. to make this decision. I think I am finally ready. I have told very few paople that I know that I am doing this. I haven't even told my sister. {she has a big mouth} If I am able to pull it off with out her knowing that will be great, but she calls alot and knows I was considering doing this.

Good luck with your husband, and pray for me on 1/14.
Maureen

Thanks for responding.....it seems there are no solutions to this problem but it has made me realize that my husband's situation could be much worse!

Maureen, good luck with the surgery and I do hope it improves the quality of your life.

johnom · January 2005

Dear Ali,
Please tell your husband to hang on. I was stage 2 and had surgery (an LAR) in May. Last Wednesday I had to run down the stairs in a crowded movie theater and head for the bathroom. I didn't make it....The worst part was going back to my seat to retrieve my coat with my underwear rolled up in paper towels and some very obvious spots all over my shoes.
We have all gone through some sort of trouble just as you are describing. I have good periods and bad periods. I have had to clean up around a lot of stools so I could use them without ruining my pants (eg. McDonald's, Wal-Mart (yuk), Wendy's, Subway, etc., etc. No one who knows him would blame him or criticize him or ridicule him in the slightest. He probably knows that, we all know that, but it's still incredibly embarrassing, and a constant reminder of the disease.
The doctors are amazingly flippant about it, too. I suggest your husband take a lot of metamucil at bedtime. If you want to go out to eat sometime, tell him to take immodium an hour or so beforehand. I don't know if that's recommended, but I have done it when I needed to fly on a plane and it's worked perfectly.
I can't find any special food that doesn't cause this problem either. I have been told it will take up to 2 years to get back to some kind of normal routine when the bowel "retrains" itself.

He has my complete sympathy, empathy and understanding. He's lucky he has someone to care for him like you.

spongebob · January 2005

Ali -

I can tell you this - it DOES get better with time. Your colon is sort of divided into three sections (ascending, transverse, and decending). Each section has a fairly specialized job. I had my ascending and transverse colon removed. The ascending colon's main job is to remove the water that is in the waste stream. Well, you can imagine how things go (unintended pun there) when the machine designed to remove the water from the flow is taken out of service. I was like you husband (8-10 times a day, easily). Thankfully I only had a couple accidents and I was always prepared for that eventuality.

As time goes on what plumbing we have left "learns" to adapt and takes over some (but not all) of the functions of the missing equipment. I still have my frequent bathroom breaks, but I am able to manage it:

- If I know I'm going to indisposed (in a meeting on a plane, at the movie, on a HOT date), I simply don't eat (I call this the no ammo, no shooting approach)

- I routinely imbibe in several small meales versus three "normal" meals (the "reduced ammo, reduced shooting" approach)

- I also use metameucil or some form of roughage regularly - it tends to have the opposite effect on we semi-colons than it has onthe general public. It helps slow us down a bit.

The timing, grequency, quantity, and content of meals sort of becomes a new way of life - at least it has for me. Eating healthier actually helps things go better (or should I say slower)

Hopefully this helps.

- SpongeBob

alihamilton · January 2005

Thanks so much for the advice.... I really think we will try the Metamucil and maybe Immodium when he has to go to a meeting. Generally, he too can be quite safe if he does not eat but on Friday that was not the case.... he did not eat and yet had an accident. I am trying to encourage him to see this in perspective... the first accident at work( and he does wear protection) in over a year. At home, as I said, he is pretty well able to reach the bathroom in time. Most of the time it is manageable but these odd occasions throw him for a loop.
I know that this is a normal side effect to the surgery and treatment but it helps to hear from others who have the same problem and how they deal with it.

Thanks again! What a blessing this board is!

Kaye2003 · January 2005

My husband had transanal excision surgery in Feb 04 and he also has had a problem with his bms. He always takes immodium before we go anywhere and still either eat the last stop before home or orders take out and we take it home. The accidents he has had have been harder on him I think than anything else.

nanuk · January 2005

Ali: Although your husband doesn't have an ostomy,this site will have additional support and suggestions-
http://www.ostomates.org
You might also try the United Ostomy Assn site, and the International Ostomy Assn site..they are
very skilled in this type of "toilet talk"..Nanuk

tortal · January 2005

Moesimo said:
I also had stage 3 with 2 positive nodes. I did have a temporary ileostomy which was reversed after 8 weeks. I can totally relate to what your hubby is going through. IT IS AWFUL AND TAKES OVER YOUR LIFE. I have tried every thing to help me. I was on lomotil, tincture of opium , immodium, fiber, metamucil. I even gave myself shots of sandostatin. Nothing worked and there were no foods that made a diffence. I am tired of looking for the bathroom. If you live near me, I know where they all are. I am also tired of having a sore butt. My tumor was just to low to save my sphincter and have it work right. And the accidents are VERY EMBARRASSING.
I will be having a permanent colostomy on Friday. I hope it improves my quality of life. I just turned 48 on Thursday. I work full time and do not want to spend the rest of my life looking for a toilet. It took me 19 mos. of way too many trips to the loo. to make this decision. I think I am finally ready. I have told very few paople that I know that I am doing this. I haven't even told my sister. {she has a big mouth} If I am able to pull it off with out her knowing that will be great, but she calls alot and knows I was considering doing this.

Good luck with your husband, and pray for me on 1/14.
Maureen

I went threw rectal cancer at 27 the doctors ended up reversing my colostami bag and giving me a j pouch it will be 3 years in june. The first year was hard but it gets better I eat a lot of fish and rice its not fun. Anything that is a natural lacsitve try to stay away from. And bagbom are neosprom works great on sore bottums. I really now about the work place I used to tend bar I ended up having to change work i am know a seceraty but that also helped not being on my feat all day and noght made a huge difference. It gets better over time I promise the first year your body is trying to heal and adjust to the new way it is.

Managing Bowel Movements

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