Advice for managing diarrhea with ostomy

[shade]

i start FOLFOX and Avastin tomorrow, with an infusion session followed by 48 hrs on the pump. There was a great thread last week about what to expect on FOLFOX. I had a specific question that wasn't addressed: with the likelihood that I'll have at least some diarrhea, any suggestions or warnings about running all that stool into my ostomy pouch? So far, ostomy management has been mostly problem free, with only one minor leak and no blowouts. These are among my biggest concerns as I start chemo. I had pretty bad diarrhea when I took neoadjuvant Xeloda during radiation, and I managed it pretty well with lomotil. But of course I didn't have the ilio then. I know I need to keep hydrated, and I already have a case of gatorade at room temp...

Any advice or words of wisdom? Is diarrhea management while on chemo easier or harder with an ilio, or is it about the same?

Thanks in advance!

[NWgirl]

The challenge I had with diahrrea with my ileostomy is if that poop gets on your skin, it burns like batter acid. It starts out as an itch - at least it does for me. If you start feeling that itch, that just won't go away, chances are, poop is getting on your skin. This may be because the poop is just breaking down the seal, it could be because you have too large of an opening on your bag and it's exposing skin, or something along those lines. It's important to keep your skin around your ostomy healthy - i.e. don't let it get burned and raw because that presents more challenges. If this means changing your bag more frequently, that's what you need to do. If you're having problems getting the right fit on your bag, see your ostomy nurse for help.

I never had problems with too much poop from the diahrrea or a bag blowing out unless the seal got compromised from poop getting under it. I have much more of a problem with a bag coming loose with my colostomy when the output it so thick that it pancakes under the seal - a totally different problem.

[peanut_8]

Xeloda gives me diarrhea. Tried imodium, kaopectate, lomotil and fiber con tablets. All at the advice of my onc. I am able to control the diarrhea most successfully by taking the kaopectate and imodium together. It works so well, that I only need one imodium pill. Dr. B, my onc, said if that was not successful the next option would be tincture of opium.

For hydration, it seems like I am constantly drinking water. I tried gatorade and it was OK. I also have dried cocoanut water powder which can be mixed with plain water. It doesn't contain additional sugar which I like.

Terri AGE 56
stage 2A RC colostomy adjuvant xeloda
thinking about how to add sig info

[NWgirl]

peanut - I did a separate post just now on how to add a signature as I'm sure you aren't the only one trying to figure it out. It helps a lot when members have a signature in answering/responding to posts, so I'm glad you mentioned it.

[juliej]

Any advice or words of wisdom? Is diarrhea management while on chemo easier or harder with an ilio, or is it about the same?

For most people, diarrhea management on chemo is easier with an ileo. You trade urgency, a burning butt, and frequent bathroom trips for possible skin issues around the seal and more frequent bag emptying. Here are some tips:

It's easy to become severely dehydrated with an ileo (even without diarrhea) so drink lots of sports drinks or use Nunns tablets.
Watch for leaks, especially for the itchy feeling that Belle described. Use skin prep followed by stoma powder to soothe the skin if it gets irritated and make sure the opening of the wafer is cut as snugly to the stoma as possible. (I also used Eakin seals to make sure I had a leak-proof barrier.)
Some foods like bananas, apples, peanut-butter, potatoes, rice, pasta, and cheese can thicken your output, which helps when it gets too liquid.

By biggest issue was with the contrast you drink before a CT scan. As it ran though my body it would fill up my bag several times before, during, and after the scan. Keep an eye on it and empty your bag every 15 minutes if necessary because the weight of the liquid can pull the bag loose.

Hope this helps!

[shade]

Thanks, that's great advice. I get 7 days from a Hollister wafer, but I'll change out more often so I can check the peristomal skin. I appreciate everyone's responses...

[jeanette57]

I had diarreh for 16 months straight with my chemo. I used Hollister barrier wipes to protect skin. I have an innie stoma so need the protection. I use the Hollister with vents. Now on Ox/xelodia and having firm movements. great treat for me. I may switch to wafer.

Always carry a safety pin (help clogged vents). I use medical tape on mine as I have blown off 8 bags. I carry extra outfits in car as had one blow out at mall. I have emptied my bag into zip lock bags when on long trips. I change bags every 3 days. and I HATE that I have so much gas but that is me.

[shade]

Thanks, Jeanette. It sounds like you've had more than your share of ostomy challenges. i am going to start carrying a ziplock, that's a great idea for emergencies...

[jeanette57]

zip lock and baby wipes. if u have gas I have a black paper clamp and it prevents end of bag from opening. smallest they make.

scented trash bag in car - to hold emergencies till u find a trash can.

if you have any suggestions on smell - let me know! I am ready to try a car air freshener - or mouthwash in bag. stoma is the same material (cells) as mouth - so may kill some of the nasty smell.

[seasnail]

Speaking of raw skin around a stoma...when it heals up, is it normal to start off as a grey-ish color? Long story short, but our ostomy nurse sucked royally and told us the seal should have plenty of space around the stoma/skin and showed us with his first bag. DH has had horribly raw and eaten up skin for the better part of the past 2 months because he shouldn't have had so much skin exposed. We finally got it figured out a few weeks back (better barrier/powder/tighter fit of the seal) and it's healing, but the skin is kind of grey but feels great he said (no stinging or burning or itching any longer). A little freaked out. Any thoughts?

[smudgesicle]

I agree with the first sign of burning advice! Ileostomy output can get very acidic and skin damage can not only take a while to heal, but also can prevent you getting a good seal next time, and so the circle continues. But at least you won't have butt burn!

If you have increased output because of the diarrhoea you can also get some bigger pouches to handle this. Call around the ostomy brands and get a couple of samples to keep on hand in case you need them. When I had my ileostomy during chemo I took 6 loperamide each day to keep my output thicker so you may find that lomotil comes in handy again.

[shade]

Seasnail, you need a new WOCN nurse. The person I see is an hour a way but she is worth the drive, and responds to email and phone messages. Also, getting samples from the companies is a great way to try out products for free, but I'm annoyed by their follow up calls. I found that my nurse is familiar with all the product lines, and steers me to the right appliances.

Thanks for all the input. I had my infusion yesterday, and I'm at home on the 5FU pump now. Still no problems, but I understand that the side effects kick in around the time of disconnect.

[gtownguy]

I was only on FOLFOX - not Avastin - but I went through chemo with my temporary ileostomy as well. For me, diarrhea really wasn't much of a problem. If my output seemed to be getting more liquid, over the counter Imodium 2 or 3 times a day seemed to work fine. I did have one big leak at the clinic, right in the middle of my infusion, so from then on I always brought a change of clothes and spare ileo supplies with me. I also found that certain foods - mashed potatoes, white rice, and peanut butter - helped in thickening the output.

[peanut_8]

Regarding odor issues, the literature provided by my ostomy nurse mentioned that cranberry juice can reduce output odor. I have since had a glass every morning and think it helps quite a bit. You can also get deodorant drops to put directly into the ostomy bag. They seem to have some sort of detergent in them with a lubricant. I'm kind of ambivalent about them.