Another real embarrassing question

[Duck on Wheels]

OK, pretty much all women menstruate. Or did at one time. So luckily there are experiences and suggestions out there. But what about us with an ileostomy? Anybody have any help to offer? That's one problem I need to solve if I'm to do a century come Spring. As my right leg goes up, it lifts the ostomy bag, and if there's any contents it gets shoved up towards that little margin of skin not covered by the wafer. After 20 miles today, my skin was itching. Basically, that's the enzymes "digesting" my skin, and the wafer backing! Soooo ... I'll have to carry emergency supplies in my hydration pack in case of appliance failure. I'll have to have a fresh wafer on and my skin well prepped. And I'll have to use every portapotty they give us to keep the bag as empty as possible. And definitely never any slinky bike shorts that press against my tummy. But is there anything else that'll help? Any techniques? Or ways of adjusting the bike? Or type of bike that would be better than a hybrid/comfort bike (road bike, hunched over, I'm assuming would be worse!).

[doc]

That's a toughie. I am sure you're already familiar with uoa.org and all the other websites? The only thing I know that can protect your skin is grease. But if you apply vaseline you'll have trouble getting the bag to stick. The only thing I can think of is creating a contraption that has a 1 way valve; So any contents that go into the bag can't come back at you. Have you googled this topic? There might be some athlete out there who has already figured this out. Is there any chance your gastroenterologist is a cyclist/athlete? Maybe your surgeon (they're all so macho you've got a good chance there). Perhaps you'll end up inventing the perfect solution, getting a patent, and getting rich!! Or at least help others along the way. Good luck. Of course let us know if you do figure out a solution.

[mikki]

Do you have to apply the bag hanging straight down? I know in the hospital I have applied it set off at an angle one direction or the other to avoid hitting things. Is it midline or on one side or the other? If it is set to the left, then angle the bag slightly left and wear a belt to hold the end left. Then you won't hit it with you leg as you ride, and the contents can still drain down and away from that oh-so-delicate skin. Also be sure to use plenty of stomadhesive to prevent leaks. Hope that helps.

Mikki

[Trek420]

bikeless in WI "Or ways of adjusting the bike? Or type of bike that would be better than a hybrid/comfort bike (road bike, hunched over, I'm assuming would be worse!)"

compared to most road bikes I'm almost upright, so you can be more forward on a hybrd or upright on a road....When you pick up your bike here I'll ask Chris to look at how it fits and if it needs any minor adjustments.

At the top of the pedaling I'd say my leg is at about 90 degrees, parallel to the road .... walks off to the indoor trainer to see if that presses my gutt, well it does a little but that's because my abs are not tight ;-)

If it ends up that you like this kind of longer ride/touring ultmately you may want a recumbent which puts you sorta leaning back. Then you and Jan can do the China tour together 8-)

There will be rest stops every 14-20 miles n the Cindy, and lunch in the middle somewhere. I know you need to take in a lot of salt and that's good on the ride but any other diet does/don'ts? We'll want to make sure you stay fed/hydrated.

[Duck on Wheels]

Thanks all for the tips and support! Yes, I could try angling the bag outward, especially with a larger bag that might work well. For everyday I angle towards the center (easier using standard toilets) but I can twist it outward while riding. Now why didn't I think of that? Thanks! Forecast is looking better than feared for this coming weekend, so I'll try for another practice ride then and see how that works. The idea for a valve is also growing. Sure wouldn't be ready by March, but maybe I'll sketch it out and send it to the folks who produce the supplies I use. Then if it grabs 'em they can make me up a prototype to try out. As for diet ... bananas are good. And lots of water! (I'll have a camelback or the like along, I figure. Been following that thread to see what folks prefer.) No oranges, please. Also I'll stay away from stuff that day that sometimes goes down a treat and sometimes not, like nuts, or luscious tart hard juicy apples. But food is usually not an issue, so that doesn't have me worried. If there's any variety available, I can always find some that works for me. The recumbent idea has also occurred to me. But ... can I really face learning to ride a bike all over again? As compare my most memorable bike moments on the intro site ...

[Trek420]

bikeless in WI ... "bananas are good. And lots of water! (I'll have a camelback or the like along, I figure."

on longer rides it's camelback with water, water bottle cages with sports bev of choice, ie citeomax, gatorade. It may be hotter out here than you're used to.

sounds like the valve idea needs a patent ;-)

[Nanci]

Maybe slinky bike shorts would keep it from rubbing around??? I'll watch for patients with these and ask if anyone cycles.

Nanci

[CorsairMac]

I can't help you there but I can say 2 things:

1) there are no embarrassing questions here, if ya can't ask em here, where else Can you??

2) if you email jeff or susan (the TE admins) they can probably change your ID if you truly want to change it!

good luck and let us know how it works so we can pass it on to the next one!!

[Nanci]

Hey,

Since food consistancy might matter, maybe you should look into a gel or liquid diet. Something like Endurox R4 is a nice energy drink for longer (over three hours) rides, and gels are great any time. Gels run about 80 calories, and it's pretty standard to eat one every 20 minutes or so, with water. If you can't find one you like- just keep looking! There are a million of them now, in a wide variety of consistancies. Gu and Hammer Gel seem pretty standard, (syrupy) Cliff Shots are about the same, Energice is more jelly-like, Honey Stingers are honey plus, Power Gel has a more flour-y consistancy, and then there are the energy candies like Sharkies, Jelly Belly Sport Beans (my current addiction I mean primary energy source) Cliff Blocks, etc.

Nanci

[JanT]

Bikeless,
I admire your getting out and riding despite the ilieostomy, which I'm sure presents issues, especially on longer outings. My husband has a high colostomy which has caused innumerable embarrassing incidents and always requires back-up plans. You might contact your medical supplier and see what they suggest. Perhaps there is a bag that's been found by other athletes to work better. Perhaps somthing larger, or perhaps wearing a belt to hold it in place. Even some of that tape that's easy on the skin might give some extra reinforcement. There might even be some special solution you can use for longer rides that puts up with sweat and friction. I hope this helps a little, and Good luck to you!

[massbikebabe]

Bikeless...

When I was working and patients would come to me with these type of situations I would consult the ostomy nurses. I remeber one in particular who was extremly bright and very willing to develope new stuff for her patients.
Do you have or can you touch base with someone like this??? Better yet, there are a bunch of us on this board who are nurses/nurse practitioners are
any of you ostomy certified??

karen

[Duck on Wheels]

Bikeless,
I admire your getting out and riding despite the ilieostomy, which I'm sure presents issues, especially on longer outings. My husband has a high colostomy which has caused innumerable embarrassing incidents and always requires back-up plans. You might contact your medical supplier and see what they suggest. Perhaps there is a bag that's been found by other athletes to work better. Perhaps somthing larger, or perhaps wearing a belt to hold it in place. Even some of that tape that's easy on the skin might give some extra reinforcement. There might even be some special solution you can use for longer rides that puts up with sweat and friction. I hope this helps a little, and Good luck to you!

Yep. This was one of the reasons I hadn't biked for years. Somehow the wafer kept coming loose, wouldn't bend where I needed it to for biking. Luckily I now have a wafer that, together with belt and tape and skin prep and powder, works well for me. I also have a bike I don't bend so much on. Haven't had a wafer failure in months (touch wood). How 'bout your husband? Has he found "his" adhesive system? If not, don't give up! Seems to me the adhesives work differently for different folks (sweat? skin acidity? hair? temperature? shape? flexibility? activities?) Anyways ... I'm not really scared any longer that the wafer will fail, although I always follow Murphy's law and carry spares. It's when you don't have a spare that you need one.

The problem Saturday seemed to be just about "backup" of contents that got lifted upwards for each legstroke on that side. I'm hoping for decent weather this weekend so I can try again, this time with a larger bag and angling the bag outwards instead of inwards. And otherwise, using every portapotty on the route should do it. And sticking with bananas, oatmeal and water, saving the salty stuff for after (salty => higher volume and lower density and that's what we want to avoid for a few hours). And hey ... the faster I get, the fewer hours I have to worry about. Now there's a thought!

'Fraid I don't know an ostomy nurse here, though I do have a good one back home. I'll check with her when I'm there for Xmas break. And thanks again everybody for suggestions and support!

[makbike]

What about a different bike, a recumbent? I know it sounds like an expensive fix to your situation but it might offer a solution since you wouldn't be bent over. Just a suggestion.

[Treckie]

My son had an iliostomy for a year. He had the same problem that you experience. What helped him was, we would put a thin maxi pad in the bag. This would absorb much of the liquid and keep it from sloshing around and irritating his skin and causing the wafer to unattach. Anyway, if you haven't tried that, maybe it's worth a shot. Now days, the pads are thinner and more absorbant too. Good luck!

[Duck on Wheels]

My son had an iliostomy for a year. He had the same problem that you experience. What helped him was, we would put a thin maxi pad in the bag. This would absorb much of the liquid and keep it from sloshing around and irritating his skin and causing the wafer to unattach. Anyway, if you haven't tried that, maybe it's worth a shot. Now days, the pads are thinner and more absorbant too. Good luck!

Now there's an innovative idea! My daughter used a pad to staunch the bleeding when my son had gouged himself falling on a twig and it was a couple hours before they could get a doctor up on the mountain to stitch him up. Aren't pads wonderful? Weather permitting, I'll give this a try on Sunday. I do have superthins on hand.