ISO information on ulcerative colitis

[ny biker]

I'm doing some research on behalf of someone who was recently diagnosed with ulcerative colitis. Specifically looking for information on ways to cope with and manage the disease. I'm working the google and have found the ccfa.org site, but any advice you alls can give would be very helpful, since sifting through internet links doesn't always lead you to the best stuff. To complicate the issue, the person I'm helping has lots of problems with allergies, including food allergies which limit her diet.

Thanks!

[badger]

yikes, that's not fun for your friend :(

I don't have any links or advice to give, just know that it's a horrible thing to have. We have a couple of firefighters on the job with colitis. One had it so badly he opted to get his intestines removed. The other one lost about 50lbs before his was controlled through diet and stress management. Stress for him was a BIG thing that triggered his attacks.

My dog also had inflammatory bowel disease which gave him horrible bloody diarrhea and bloating; his was controlled through diet.

Since it's unfortunately not an uncommon illness, I would imagine there are support groups that may help her in this research, as well as hopefully one day finding something that will put her in remission or control it.

[Trek420]

((((ny biker friend))))))

Start with a pretty good thread here:

http://forums.teamestrogen.com/showthread.php?t=11991

I hope my sister Duck does not mind my quoting her from the thread but since she is my hero being active, cycling (even ALC :eek:) and hiking with this I think it's a great post on the issue of how to live with this disease.


All in all, the message from me as a "Crohnie crony" is that this disease is to live with if you just learn what your body needs in terms of food, rest, exercize and meds. In the words of J. Golden Kimball, "The secret of a long life is to get yourself an incurable disease ... and take care of it." Sounds to me like you're off to a good start in taking notes on what your body seems to do well on. Keep up the good work, and keep up your optimism. :)

[Duck on Wheels]

Not just your sister (me) quoted there, but your niece/my daughter UK-Elephant and several other Crohnies on the board. But we're all big girls and know that what we post is public. If you find the info helpful, then be our guest. :)

As for staying fit with Crohns, UK has actually done the ALC twice! So yes, this is to live with, although a pain at times. Literally.

Btw, in case the responses have caused some confusion, Ulcerous colitis and Crohns are closely related. Some, like me, who are diagnosed with UC get rediagnosed later as having Crohns. In terms of daily management, much will be identical. Same basic medications; same focus on stress management, diet, rest and exercize; same vague link to allergies (they're auto-immune diseases, so an overactive immune system is part of the picture). One difference is that UC can sometimes evolve into colon cancer, so it gets tracked closely with follow-up exams. Don't let that scare your friend, tho, as colon cancer has a good cure rate when caught early and UC patients, given the frequent exams, do get caught early. The down-side of Crohns is that it can cause lesions anywhere in the GI tract, from mouth sores to anal fissures, but the up-side is it pretty much just stays Crohns, not turning into anything else. And the up-side of both is that they sometimes sort of "burn out" around retirement age.

[Duck on Wheels]

p.s. One thing I don't see mentioned in the earlier thread is to be wary of alcohol. Like caffein, it's a diuretic, so it dehydrates you. Also, it's a vaso-dilator -- it expands your blood vessels. So if you're already having some internal bleeding - and UC will often give some intestinal bleeding - and then you have a drink, you may suddenly bleed a LOT. Once I was travelling, had a lovely dinner in a fancy restaurant (I still remember the Jerusalem artichoke soup with salmon roe :p) and had one glass of wine with the meal. Late that night I woke up in the hotel bed soaked in blood. A bit scary, but I figured out what had happened and was feeling ok by the time I woke up. But it was also very embarrassing. I stripped the linens off the bed and hand-washed them in cold water in the shower, then left a big tip for the maid.

[Melalvai]

Once again TE is the place to find my support & answers. :) I told my dr I have Inflammatory Bowel Syndrome. (With the help of Dr. Google I can diagnose myself! ha ha) Probably Crohn's but not sure. 6 years ago I had a hysterectomy (kept 1 ovary so not menopausal). A few months later I started having monthly bloody poops and they did a colonoscopy and told me "hemorrhoids". But the symptoms don't match at all.

A couple years later I decided to try not eating sugar & HFCS to control the monthly mood crashes. I was surprised and delighted that cutting out sugar alleviated the paranoia AND the diarrhea. And the cervix cramps too. Not entirely gone, but all of it was much more tolerable. So I didn't care what it was, so long as it wasn't bothering me.

When I slipped and went back to sugar, all 3 symptoms got worse. When I cut sugar back out, they got better. It takes about 2 months to get the full effect each time.

Since cutting out sugar I've gotten really interested in diet. When I quit sugar, I actually had a list of things I was going to try: sugar, red meat, dairy, wheat. This was from the endometriosis diet but I keep seeing the same list of foods in other contexts. For a while I ate a lot of beans--my family found ME intolerable! :D I've reduced wheat & dairy (turns out I like goat cheese and it's local). Last month I ate a lot of nuts as an alternative to red meat.

OW OW OW OW OW! Even though I'd been really good about staying off the sugar, I had the worst intestinal cramps and other symptoms (I'll save your sensibilities and NOT go into detail) yesterday. That prompted me to question that original diagnosis of hemorrhoids. I looked into IBS first, which fit better, but IBD fits my symptoms perfectly! The bit about how no single diet works for everyone is particularly compelling. Sadly it appears that nuts are not a good idea for me.

The dr seemed a lot more concerned about it than I am. From what I've read it doesn't lead to something worse, and there's nothing they can do about it that I'm willing to try (medicine or surgery).

I laughed because the first 2 recommendations were quit smoking, and get exercise. I have never smoked and I exercise a lot. The 3rd recommendation I found was to avoid sugar. Check!

[Stushica]

I've been diagnosed with UC for 8years and off meds for probably the last 4-5 with the exception of when I get an occasional flare. I love a lot of the advice given above by DoW :)

the key things I like point out to new "cronies" Is that everyone needs a different diet some people need a lot of fiber others low residue, personally when I flare i can't tolerate any dairy but when I'm not bring on the pizza and alfredo! Figuring out a suitable diet takes time but once you find you have "trigger foods" you avoid the heck out of them and find another yummy replacement…. fast food will never be your friend.

Also the first two years are typically the worst, so keep your chin up and it will get more bearable. Whatever you do try to realize that you can’t change the diagnosis just try to find a way that it fits into your life and turn it into something positive, like motivation to eat right and be healthy, whatever you do relax and try not to stress, stress can make me flare every time.. the silver lining? I read, mtn bike and take more bubble baths than ever. :P

watch and figure out your meds, Asacol gave me awful side effects but pentasa seemed to be alright aside from just feeling icky. I make sure I'm always on a calcium supp and a multi vitamin, as well as, iron and occasionally zinc and acidophilus/ bifidolphilus. For me this is a winning combo and I get no ill medication side effects, my doctors were leery but seem to be pleased with how well I've done off of prescription drugs.

O/T kind of... ironically my dog also has IBS and I always make sure he has a strict diet lots of exercise and acidophilus/ bifidolphilus seem to really help him when he gets diarrhea.