marathons and more

Michelle,
Since I have a k pouch and not a J pouch I can only answer partially...all sporting activities stimulate your intestinal transit. (that is why they try to encourage older or constipated people to walk more). It might be a question of what you eat the 24 hrs preceeding the walk/hike/marathon that can help or hurt...pasta, rice or other carbs could be your best bet...keeps you thick and tight...the other thing is that you will/would have to plan for pitstops for pouch emptying during the day...and munch on nothing but soya based protien bars...(they seem to thicken things up in the pouch).
as for the k pouch option, you may wish to speak with a k pouch surgeon for advice rather than a surgeon who is against the procedure. JMO.
Or post on the k pouch section here.
Sharon

I'm an avid long distance hiker and l have no issues with stopping to use the woods. None of my coloned friends can hike all day without stopping and none of my marathon friends can run a full race without stopping either. Maybe your expectations are too high? Personally I would never have additional surgery for this reason alone.

Sue

Hi Michelle - I recently ran the Marine Corps Marathon after having my j-pouch for about 5 years. Admittedly, I was surprised - I went to the bathroom before the race and then didn't go until about 2 hours after. It took me a long time to finish as well, so it was definitely a long day without going. I find that as I am active, even eating I tend not to have to go that frequently. Although during my long run training, I would typically go once or twice in the span of 12-20 miles.

I also have done some hikes (admittedly not a 12 mile hike) and usually bring some toilet paper "just in case", although I haven't really had issues there.

I tend to think that for myself, a lot of it is mental. If I worry about it, then I have to go more. If I'm fully into what I am doing, then the urges don't seem to come. I try to keep myself distracted from thinking about the bathroom.

Good luck.

I've done several half marathons with an ileostomy without having to stop or empty at all. In fact, vigorous exercise slows down intestinal transit because blood is focused on more major organs and needs.

That's what I love most about my ileostomy.. I can be out and about with hardly any limitations. And with my half marathons I was able to eat and nourish well and hydrate well without limiting myself at all because I had an ileostomy.

If you had a kpouch - and you are an active person.. how are you going to carry your kit to empty that kpouch. Can't imagine carrying that doing a marathon.

Your concern does not make a lot of sense to me. What is wrong about using a bathroom during a marathon or hiking? Sometimes I need one during a race sometimes I don't. Either way it is not a big deal. I love the wag bag for hiking but again even coloned people have to defecate in the woods. Why would this be an issue leading to more surgery?

Exercise seems to make me go,immediately and continuously. Once I start, I don't stop. I'm always bloody and raw from leakage when I hike...because it's non-stop. I'm intrigued that you all have success in hiking/exercising. It would be foolishness to consider major surgery because I have to use the bathroom once in a while, but I have come to a place where I don't go out to eat because I know I'll be in the bathroom from that point on, I don't eat anything prior to hiking and I dont' go w/anyone but my husband for fear of having to go. You say squat and go, but how do you do that if you're walking the streets around your home? I'm up 2-5times a night...every night and not only am I careful of what I eat, but when I eat. I'm thinking my pouch isn't working correctly if you all are having such positive feedback. I know I'm not emptying but I dont' know how change that.

Ah, that's different. Do you take any medications or supplements? I'm thinking that not eating prior to hiking might not be a good idea because that would cause bile burn and exacerbate the situation. Have you tried eating something bulking like rice with a chaser of metamucil wafers?

I think you're right - it seems something needs tweaking or changing. Has your doctor said anything?

I hope you can get this figured out but I can totally understand wanting surgery to get back some quality of YOUR life.

kathy

Ahh....more information is helpful. You might need something stronger than imodium/lomotil if you have tried those. Possibly codeine? Have you always had leakage or is it only when you exercise?

Sue

Thanks!!! I knew I wasn't losing my mind...haha..I'm terrible about going to the dr...which is how I ended up nearly dead and having and emergency colectomy in 2005... After 5 years, I just recently had a pouchoscopy and I have a slight case of Pouch-itis. He also stretched me, but I dont' see much difference in emptying. I'm waiting for my follow up to talk to him. It's become unbearable lately where I'm paranoid of leaking at work. (I work in a classroom and can't just up and leave) I didn't know there were other options other than immodium. I haven't always had leakage but for about a year I've been pumping immodiom and high fiber die (oatmeal, high grain breads) but I don't take supplements. Do most Jpouchers take supplements? Since I have your attention, do you notice you get painful stomach aches when you take vitamins? If so, what do you take for vitamin supplements?
Thank you so much for this feedback.

I take liquid vitamins and minerals in a small glass of orange juice plus 5000 IU of Vitamin D3 gel caps. I had horrible stomach pains from solid vitamins and my body was not absorbing as much as I needed so I switched to the liquids. My test results have been normal for two months now.

Unfortunately high fiber increases my motility which has never made any sense to me. I expected high fiber to slow things down. Our bodies are so individual that it is hard to predict how each of us will react to different foods.