Are there Any other a2kers with Crohn's disease?

I don't have it but I worked with a woman who had a son that did.
A typical scenario for him was- leave the house and immediately return as he had no control over his disease.
It almost killed him before he was diagnosed. This was 15 years ago.
Iris I'm sorry to hear you have to live with that.

sounds like my scenario, Hope he is doing well!

There was a young man who used to visit this forum. I can't remember who it was. I believe he was in his teens. I'd never really known anything about the disease until I met him here. I learned a tiny bit about it and what I learned didn't sound very pleasant. I, too, am sorry you have to deal with this disease.

I tried the A2K search angine to no avail. Adrian....? Maybe it was Abuzz.

thanks littlek

Hi, IrisDawn...

I don't have Crohn's Disease, either, but living in the Seattle area I've heard Mike McCready talk about it extensively on local tv and radio. He's quite active in the Crohn's & Colitis Foundation of America. He talks about some of his experiences in dealing with it in the following interview:

A Conversation With Pearl Jam Guitarist Mike McCready
June 25, 2004

Mike McCready:


This is a newer Crohn's Disease forum that McCready is involved in:
http://forums.healthtalk.com/crohnsdisease/

not determined for sure yet (via probing) but it's highly likely that I do.

I know I either have severe IBS, chrone's, or inflammatory bowel. The symptoms are very chrons like.

I try to get at least 1 hour of exercise three times a week,
I drink lots of anti-inflammatory liquid (green tea) being that inflammation is part of flare-ups I think this makes sense. Decalf is better.
I always get 8 hours of sleep every night.

Flare ups still occur, and there are times when I still feel like death, but the general every day existance of my life feels better when I follow these rules.

Also, I try not to obsess about my health problems or else I get depressed. You just have to do your best and go out there and do things.

What most people don't know is that there is a wide variety of imact from chrons. some people live perfectly long, healthy lives with it and little trouble, and some die from it. The best thing to do is keep a good proctologist and good doctors, do everything you can, and no matter what hope yours is the best kind and stay positive.

Matrix 500 & Portal Star Thanks for the info! I was not aware that Mike McCready had crohn's

Hi, IrisDawn...

I don't know if you will find the type of information your looking for there, but I do know that Mike McCready has really tried to make himself available to the public re Crohn's Disease and if you look the two of them up together on the Internet, you'll get a lot of hits.

I've got to tell you that my heart goes out to you and Portal Star and anyone else who has Crohn's. I have severe allergies to antibiotics (my colon is allergic to most of them) and if I take them I end up with many of the same symptoms that you experience on a regular basis. Last time I had an episode with the antibiotic thing, I couldn't eat for 3 weeks (well, I got to have Gatorade in small amounts and medications). It was the only way to keep things calmed down - and I got to have many of those fun doctor visits that you've come to know and love so much. Going thru that for 3 weeks at a time is bad enough - I have great respect for anyone who has to deal with a condition like this on a regular basis. I hope they find a cure for you guys soon. Maybe with people like Mike McCready speaking out publicly about it, it will bring more attention to it so that more research, etc., will be done. I sure hope so!

How interesting, me too! I have trouble with ALL kinds of antibiotics -and- anesthetic. Which made getting my wisdom teeth out absolute hell. I got target hives everywhere, couldn't keep food down, and got a bad viral infection that put a circle on my stomach and lasted months afterword, all a result of bad reaction to the antibiotics.

I wonder if it is somehow related? I think there is a common thread in most of the body problems I have being related to an over-active immune system.

I have had a strange reaction to both an antibiotic and anesthesia, but only once . Maybe there is a connection. Portal Star please keep me posted on your diagnosis. It's nice having someone to communicate with

I got a new gastroenternologist and he says he doesn't think I have Chrons' (yay). He put me on a ridiculously high fiber diet- I have to eat:

five cups of vegetables a day
two cups of fruit a day

which basically makes me a vegetarian because I don't get hungry for much more than that.

Suprisingly, it's working really well. I'm really happy with this new doctor. He is very friendly and personable, and he explains the medical process behind everything he's talking about. And, an added bonus, he only uses probing as a last resort.

If this doesn't work long term, he's going to try fructose elimination, low dose antibiotics, and an anti-fungal.

I'm glad to hear that he does not think you have crohn's but what does he think you have?

He thinks that "irritible bowel" is a bad term because it is a symptom, not a cause, and many causes are listed under irritible bowel. The reason he is having me try these things is to figure out which is the problem, but very generally, he says my colon and intestine don't empty themselves regularly, so the body responds by freaking out and acid-liquifying everything. This is made worse by my allergies, which apparently can cause hives on the lining of my intestines as well as the skin (and cause the bleeding I mistook for Chrons).

So, he says that I should try to avoid foods that break me out (there are a lot of them so sometimes it's hard) and, in addition, hyper-intensify my fiber intake so that my colon is forced to empty itself regularly.

It's working so far, although, it is very difficult to keep up. It's been.... five days.

Still, even if it turns out I don't have Chrons (thank god) I can totally sympathize. No one wants to feel like they are defective, and Chrones and other bowel diseases are particularly bad because you can't talk about them - people think they are a joke because it is a problem concerning a taboo area of the body. But, it really effects your life and your mental and physical health.

I lost track of this thread and just noticed in my list of posts again.

Portal Star...
That's great news if your doctor doesn't think you have Crohn's. Is the new diet helping like you both hoped it would? I wish you luck with it!


IrisDawn...
Were you ever able to check out any of the links that I left for you a while ago? I did notice that some of them led to forums for Crohn's patients and that the symptoms the participants had ranged from the very severe to the comparatively mild. The people there seemed to easily relate to what the others were saying so I was hoping you might be able to find some support at one of them. I saw some really good senses of humor being displayed by some there...not a bad thing considering the topic. Might be a good place to check out if you haven't as I imagine this time of year with holidays and all can be a bit of a challenge. I hope you're able to "meet up" with some people there who truly understand what it is that you must deal with on a daily basis.

A long time friend's husband has psoriatic arthritis to a severe degree and Chron's. He carries on, though he has been sorely tested. He is a senior scientist, has a lot of accomplishments despite the debilitation. On the other hand, he has my friend, who loves and cares.

do you cook with almond flour?

Here is a good diet book: Breaking the Vicious Cycle

Link to the book

Matrix500 I did look up alot of the info! It was very encouraging. Thanks