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Fecal Incont. (diapers)

bspangler47's picture
bspangler47
Posts: 140
Joined: Sep 2010

I am currently in Remission or should I say my cancer is gone:). I had to have an ilesctomy(sp) done back in March 2009. In Januray 2010 they "reconnected" me. That was the time I was looking forward to, I was counting down the days, the months etc. Well since I had the reversal done, I had or have been having second thoughts. I was feeling like my bathroom was my second home. I didnt like going places with my childern/friends. It seems finally within the last month or so, I am getting better about going places. Of course since I cant control my bowel movements at all, I do take my "diaper" bag with a change of clothes with us. Even my lil ones will make sure I have it. :). Anyway I wanted to know how many or does anyone else have the issue of not being able to control the bowel movements?. Anyone that has to wear diapers 24 hrs 7 days straight? When I do go out I also have to take my meds with me.

I hate to say this, but I honestly feel, I would rater be wearing diapers than not being here at all.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Bspangler47,

Glad to hear the cancer is gone! Congratulations! That is great news and we all enjoy hearing it!

As far as controlling your bowel movements, I would speak to my Colorectal Surgeon. He/she can be very helpful.

There are many things you can try. Immodium works for me. I take it about an hour before I leave the house when I am going somewhere that it is not convenient to get up and go to the bathroom (traveling, a movie, out to dinner, etc.). You might also want to try to bulk up those stools by eating the BRAT diet (bananas, rice, applesauce and toast). I even saw a program about eating coconut is great for loose stools (The People's Pharmacy website may have more information).

In the beginning, I did not eat before going out of the house and I had no problem with the bathroom rush. I made my appointments before noon and skipped breakfast that day.

Good luck with this and please keep us updated and let us know if something in particular works for you.

Congrats again on NED!

Hugs,
Lizzy

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Lizzy,

You're right about People's Pharmacy. I've read in their column several times that people use coconut macaroons for diarrhea.

*hugs*
Gail

Lovekitties's picture
Lovekitties
Posts: 2952
Joined: Jan 2010

As Lizzy said first stop should be with doc to see if there is something which can be done to help.

We had a thread on here not too long ago about the merit of coconut macaroons to help with this issue. Strange as it seems, some folks had good luck with it.

And you are right, being here is the most important thing.

Hugs,

Marie who loves kitties

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Although I have different symptoms than you, I want you to know your stength and courage is truely an inspiration to me!!!!

Love and hugs, Gail

tiny one
Posts: 467
Joined: Jan 2009

I had an ileostomy for 10 months, it was reversed Dec 2007. My reversal was a difficult one due to the radiation I received. I take lomotil, this has helped me alot. I keep pads and wipes with me at all times. Sometimes when you eat several large meals in a row, it will cause more bathroom problems. Certain foods will give you problems also. It does get better with time. Also sometimes cold medications will help the bathroom issues also. Prescription meds for diarrhea may help you also.

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

I have learned recently that upping your potassium intake will help. I guess I had always heard before about eating bananas, which are of course full of potassium. So, try eating a couple of bananas a day and ask your doctor about taking an extra potassium supplement.
In addition to that, Lomotil has become my friend- a prescription antidiahrreal med- stronger than immodium. I panic when I go out for the day or out to eat without taking the Lomotil first- it does help.
I hate to admit it, but I've had more of a problem w/ this lately and even had an accident away from home last week- no fun. I never even had the colon surgery or an ileostomy, I guess just the combo of chemo side effects and a buildup of the damage done by radiation on my rectal tumor 2 years ago is now building. I just talked about this issue yesterday w/ my oncologist.

Good luck & definitely try some new things to solidify the stool a bit more.

Lisa

bspangler47's picture
bspangler47
Posts: 140
Joined: Sep 2010

Hi Lisa,

I also take Lomitol and Immoudim (sp) I usually them before I leave the house. There are times that I end up taking 5 to 6 pills of Lomitol plus Immoudim please 4 to 5 of them if the stools are really bad. I will ask about potassium level. I have potassium pills here at home. They also gave me pills to take, which is found in yougrt(sp). The oncologist also presribed a powder mix in order to bulk up the stools. I am also up to any suggestions.

Barbara

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

Assuming you had colon and/or rectal cancer. I am 2 years in remission. Went through the illeostomy, changes in bowel habits, etc. Still winging it day to day.

First, no offense to anyone here, but do not go screwing with your potassium unless your blood work shows you need it. And if you creatin and or potassium is high/low you should see a nephrologist. Potassium is nothing to screw with on a major basis. As my wonderful nurse tells me... not enough can lead to a fatal cardial arythmia. Joy, joy. I was in renal failure after my first surgery and have just finally gotten off potassium.

Sometimes Immodium and more fiber (Metamucil and so on) can take care of your problem. That is usually a good cure for irritable bowel and boy howdy can all the crap irritate your bowel or what?

This did not make me better. After seeing way too many doctors, I was finally diagnosed with spastic colon. Apparently the 2/3 of it that is left is spastic. Who can blame it. The Immodium just makes this worse. I use 2 prescription medications. Colestipol and Lomotil. Colestipol did start as a cholesterol treatment, but was found to have even better results with spastic colon. I take anywhere from 2 to 4 of these a day. Lomotil, I usually take 2 pills four times a day.

But then there is the catch. As a semi-colon, fried food, spicy food, STRESS, depression, exercise, who knows what all, can effects my bowels as well. So you just have to get used to raising/lowering your meds to make your body happy.

I hope the Immodium works for you, but wanted you to know of another option.

Good luck to you, my sister semi-colon.

ron50's picture
ron50
Posts: 1290
Joined: Nov 2001

I have just finished year 13 ca free(stg3c 6 nodes) Unfortunately ca and the treatment of has left me with a legacy of poor health. I have several auto-immune problems ranging from kidneys ,severe neuropathy and severe psoriatic arthritis. They did an mri recently and found a degenerative stress fracture of my spine so osteoarthritis is also in the mix. All of the arthritis drugs are dreadful. I have been on prednisone,sulfasalazine,methotrexate and arava. They are all immuno-suppressants and without fail they hit me in my weak point....stomach and bowel. I have been on arava for two and a half months and for two and a half months I have had non stop diahorreah. It has me quite depressed. It is not nice to be sitting watching tv ,sneeze and crap your pants. My rheumatologist has stopped the drug . Not for the diahorrreah but because last blood test several of my liver markers were in the red. Unfortunately arava can stay in your system for up to two years. He said they have a drug to wash it out of my system but it has severe side effects. He did bloods to see if my liver produces another enzme that will let them use imuran. Failing that ,he is talking gold injections. I know what you are going thru and I feel for you. I used a drug called donnatabs to get me thru chemo(same problems)It was brilliant then but has not helped at all this time. I take codeine for pain and even its constipating effect is not helping..I hope you find some resolution to an awful problem..Hugs,Ron.

mnttownsend's picture
mnttownsend
Posts: 22
Joined: Sep 2010

Hi Barbara - I've got stage 4 colorectal cancer w/ mets to both lungs and the docs only left me with 13 inches of colon - so I do understand what the diarrhea issues are like. I've tried to stay off the drugs, but I have to use something, and I've found that psyllium husks have helped quite a bit to bulk up my stool. You can get them at most any health food store or even in the grocery store if they have a vitamin/health food section. I take a couple of tablespoons with juice and it seems to help a lot, but it's not a cure-all.

You might give it a try for a few days - it helps right away. Can't hurt you, but I'll be curious to see if it helps you like it does me.

Good luck!

Brian

stratplayer's picture
stratplayer
Posts: 41
Joined: Jul 2010

After my Ileostomy reversal, I had bowel training.
I was instructed on the BRAT diet.
I was up to 8 Lomotil a day and that did not always work.
I had stopped taking Citrucel fiber.
The constipation and then constant pooping and wiping keeps me really sore.
I had to prep for my second colonoscopy which meant stopping Lomotil, Immodium, and anti-depressants.
After the colonoscopy, I did not poo for three days. When it started up again, it was back to the same old thing. I spoke to my support nurse at MD Anderson and I started the fiber again.
Three days later I end up in the ER with a small bowel blockage.

Well lets cut to the end. I am taking Imoidium and still having loose bowels with no control. I am not taking Class 2 Lomotil. That is great for me!!!

If there is no improvement, I will opt for the permanent Colostomy.

I hope this helps.

Mickey

bspangler47's picture
bspangler47
Posts: 140
Joined: Sep 2010

hi everyone wanted to give everyone  a update on my loose stools..  it seems to get better at times.  i still wear diapers.  i   went  see my surgeons and they told me about  new procedure.   not to sure yet.  read the information  it seems  they have used it on other pts but not on anyone that has gone thru radation.   any  would b appreciated.  here Is the website www.solestainfo.com

Trubrit's picture
Trubrit
Posts: 1488
Joined: Jan 2013

I'm so happy to see this post and know that you've had some success. I had read your post several weeks ago when I was having diarrhea problems, and didn't want to reply becuase the post was old and we seem to be warned not to reply to older posts

Good luck if you try the new procedure. 

And I presume you are still NED.  

 

bspangler47's picture
bspangler47
Posts: 140
Joined: Sep 2010

still in remission

YoVita's picture
YoVita
Posts: 545
Joined: Mar 2010

I too have this issue and am now able to use sanitary napkins.  Most days I don't have any accidents.  I looked at the link.  I too have gone through radiation - probably why I have this issue - and the website excludes radiation treatment patients.  So I'm sticking with my life as is.  Happy to be here.  Good luck to you!

bspangler47's picture
bspangler47
Posts: 140
Joined: Sep 2010

just read your post, i didnt noticed any comments about radation.  so rereading it again.  Smile

mc1717's picture
mc1717
Posts: 21
Joined: Sep 2008

I too had problems with control after my iliostomy was reversed.  First let me give my history:  diagnosed with stage to rectal cancer in 08/2008,  had a total of 12 inches of desending colon and rectum removed in 12/2008,   6 months of 5FU and lukevorin.  In 08/2009 I had iliostomey reverse.   After about 2 months of 'living" in the batroom due to no control or having to go avery 20 minutes I was talking to my surgeon about what could be done to give me my life back.  I was scheduled to go back to work on 10/1/09.    My surgeon suggested I try a daily enema using plain warm tap water.   THIS WAS THE BEST ADVICE I EVER GOT !!!.    I got a 2 quart  enema kit from enema.com  ( about $40).  Started using it daily ever since and i now have total independence from a bathroom.   I go shopping, walk the dog, what ever I want when I want. here it is 3 1/2 yrs later and things are great.  If you want specific details on how I do it let me know and I will email you information.   One thing I started doing is I get my laptop computer up with wireless wifi and I surf the net or watch movies while I am "taking care of business"  as I call it around the house.   Whole process takes about 40 minutes and i get at least 24 hrs of no worries (sometimes have made it 48 hrs).

 

Mickey

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