Ulcerative Colitis

[ccwaskier]

I was just diagnosed with this. Just wondering if anyone else here has it and how it affects their skiing and other activity. What meds you are taking. I haven't let it get in the way too much, but last week it seemed to flare up a bit skiing quite a few days in a row. I think being on prednisone is the biggest problem with skiing, but so far its been ok. I saw one thread about this when i searched for it, but any more information would be cool. Thanks.

[Dr. Gaper]

Just curious, how did they test for this and what were your symptoms?

[runethechamp]

Just curious, how did they test for this and what were your symptoms?

Probably the ass-cam

I have Crohn's, which can be similar, but I think in my case better than UC, but this year I haven't been affected by it at all. Last year some food stuck somewhere in my system cut a couple of days short for me. 4 years ago I lost basically the whole season before I was diagnosed.

[Dr. Gaper]

Probably the ass-cam
.

[runethechamp]

Just my word for colonoscopy. I posted some pics from one I had somewhere here.

[Dr. Gaper]

Just my word for colonoscopy. I posted some pics from one I had somewhere here.

Does it hurt? (only the first time?)

[ccwaskier]

It actually took a while to figure out. I was at school when it started. . . stomach cramps, and diarrea. The school health center sent me to the ER b/c I was getting too dehydrated. They did a CT scan and my colon was competely inflamed and they thought it had perferations. Luckily this wasn't the case. I was in the hospital for two weeks. For a while they thought it was giardia, salmonela, ecoli, or some other infection/bacteria, but they couldn't find anything and symptoms did not go away with antibiotics. After the doctors were confident it wasn't bacterial they started prednisone which preoduced results and i started to feel better. I think my diagnosis was based primarily off symptoms rather than looking up there. They have scoped me twice, but luckily my doctor isn't to into the scope so hopefully i can avoid that as much as possible..

[runethechamp]

Does it hurt? (only the first time?)

They give you some sweet Valium++, can't remember the name of it, so I only remember vaguely something being stuck up my ass.

[ccwaskier]

Does it hurt? (only the first time?)

I had two sigmodoscopy's (sp?) the first they didn't give my any pain stuff for and it hurt. The second they gave me versed (sp? its very similar to the date rape drug) and i don't remember anything. If you ever have to have the scope tell the doc you want the drugs.

[Camel Toad]

ex-wife...now colon-less (her, not me) had UC. if she watched her diet closely and lived a more relaxed life i.e. drop the partying alcohol is bad for UC, so is stress. she did ok. you can't make it go away, but some people have good luck with diet regulation, others don't but generally doctors told us that diet didn't have anything to do with it. but doctors are sometimes wrong. potatoes killed her, but didn't bother one of her UC friends at all. she was able to get off the drugs if she lived a really clean healthy lifestyle, but alas she wasn't able to do that, i dropped her for it (unhealthy life, not UC)and she ended up having her colon removed because she had a hard time sticking to her diet. says she doesn't mind the bag she has now. guess that is kind of some downer info, but YMMV and hopefully you get a system down that lets you ski without fear.

oh yeah, if it is a huge pow day and you are doing bad there are always depends. at least they keep your bum warm when your sitting in the snow. best of luck!

[vanilla gorilla]

i have a friend that has it. all he takes is the prednisone. his only complaint with that is he has to eat (overeat) everytime he pops the pills. he packs on the weight. he only gets symptomatic when very stressed out. he doesnt complain of anyother side affects from meds.

[Camel Toad]

oh yeah, there are drugs other than prednisone you can take. the steriod side effects can suck. the ex used to cut her pills in half to digest them better. doctors always said she didn't need to do it, but she got worse if she didn't.

there are a number of prednisone alternatives as well as web support groups and what not out there to help out.

[jryoung]

Prednisone, rarely does anybody any good, it's simply a band-aid. If you want some alternatives check out a good Naturopath. Unfortunately they are not only licensed in 14 states (WA, OR, CA, ID, CO, AZ, NM, CT, UT are all that I can think of at the moment). If you want to shoot me a PM I can maybe get you some better info depending on where you live.

My wife has treated a number of UC cases with outstanding results and she may know a doc in your area.

http://www.naturopathic.org/

[Alioops]

Sister has it and I was diagnosed with it many years ago. Best advice I have is change your diet. Worked for me. Cut out the fried foods, dairy and hops & barley.

[Mcwop]

I have it. Was diagnosed in 1992. Never was a big problem until the end of 2003. I have been battling severe flareups since. Was on Prednisone, but had to stop that, and now take Azathropine. Azathropine is an immuno drug like prednisone, but you can take it long term. Thing has been a life saver.

I also take Colozal, Iron (became anemic from bleeding), Cortenema (hydrocortisone), and CANASA® (mesalamine) Rectal Suppositories. Things are under control right now.

Do not let it get the better of you. I find that excercise helps a lot - both from self esteem of being in shape, and pain tolerance.

Stay away from:

• Soda
• Beer (I will occasionally have one - red wine in moderation is ok - pot is really good)
• Caffeine
• too much junk food

Eat foods that digest easy. For example, most mornings I have either a banana, yogurt, or oatmeal (new low sugar quaker instant is good, and is the perfect portion). Do not eat too much in one sitting - this was hard for me, but I created a new habit of small portions.

You will learn to appreciate clean public restrooms.

Feel free to PM me with questions.

Edit - I still ski just fine. Sometimes you have to be ready to go in the woods, or ski really fast to the restroom.

[biggins]

Crohns for me. Asacol's what I take, essentially aspirin that time-releases in the intestines. Totally non-invasive (zero side effects), no flare ups, I'm lucky.

A diet overhaul is good advice- McWop's ideas are sound.

Good luck. If you're in or around Boston I know an exceptional GI guy.

[JR]

I should have waited until I was done dinner to Google Ulcerative Colitis. My deepest.......ah........sincerest sympathy. Man that sounds rough.

[ccwaskier]

Thanks for the tips and advice. I am still in the beginning stages and trying to figure out what works. The doc has been lowering the prednisone, but when I got down to 10mg things started to flare up again, which he said was fairly common. The next step is the immune modifier, azathiopine, which hopefully will keep things under control.

Its good to know other people have this and deal with it and continue skiing. If anything good has come from this, i had to take time off from school, which has allowed me to get in a lot more skiing the last little bit.

[Mcwop]

Thanks for the tips and advice. I am still in the beginning stages and trying to figure out what works. The doc has been lowering the prednisone, but when I got down to 10mg things started to flare up again, which he said was fairly common. The next step is the immune modifier, azathiopine, which hopefully will keep things under control.

Its good to know other people have this and deal with it and continue skiing. If anything good has come from this, i had to take time off from school, which has allowed me to get in a lot more skiing the last little bit.

Ask the doc about Hydrocortisone enemas while you are reducing your prednisone, which may help a lot. Is he putting you on a maintenance drug? Usually, you will take something besides prednisone.

[Core Shot]

Sounds like a bad case of Mud Butt.

sorry

[ill-advised strategy]

"the girl with Colitis goes by"

sorry.

[The Squeaky Wheel]

The reason why you're getting so many variable replies is because symptoms are different in everyone and treatment will eventually be dictated by severity of symptoms.
Prednisone is the crutch drug. It'll definitely take care of the symptoms and is useful for flares but should be avoided as much as possible.
Other therapies that may be discusssed include imuran (azathioprine), asacol, mesalamine and a slew of others.
Be sure to ask your physician about remicade (infliximab). On December 17, 2005 the FDA approved its use in U.C. If it turns out to work as well in U.C. as it does in Crohns, Rheumatoid Arthritis and a few other chronic diseases than we'll finally have something worth talking about.

Naturopath....may be helpful but I wouldn't bank my health on it.

[ccwaskier]

yeah, the matentaince drug is asocal (masalamine), also masalamine enemas, and i am starting azathroprine.

[awineke]

Ditto on everyone being different -- I can't eat bananas and Azacol felt like a knife in the stomach, but beer and caffeine are no problem, thank god. Get off the Prednisone, that stuff sucks. I had luck with Mercaptopurine and haven't had problems for years, which is nice.

[0BernhardFranz]

my sister got it doode wake up this is worst thing we ever had bf