Thank GOD we have insurance...I have Chrons Disease

[greenbriar]

Chrons Disease...I have it
after the colonoscopy/endoscopy and tests, it has been determined that I do infact suffer from Chrons disease

and it is NOT IBS




am taking 3 different perscriptions a day

one is $40 dollars WITH insurance

[mcscajun]

1. Very fortunate you have insurance, indeed.

Some reading material for you, if you haven't seen this yet:
http://www.ccfa.org/info/about/crohns

And there's this group on DU you might want to check out, if you have not already been there:
http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=317

[SharonAnn]

2. I hope you can keep it and that you won't lose it for one reason or another.

Because if you have to replace it, it will be very difficult.

[alfredo]

3. Crohn's can be bad, or nothing at all. I was diagnosed in 1984.

I've been symptom free for a very long time.

What are they giving you? I was on Prednisone. That's a heavy drug, but it works.


You need to find what triggers flare ups. One good idea is to remove as much stress from your life and get plenty sleep. A positive attitude is important.


Good luck.

[greenbriar]

4. Thanks

Aciphex

Asacol

Dicyclomine


I am learning about the triggers and such.

[Ms. Toad]

7. Check out

alt.support.crohns-colitis.html. (you can find info here: http://www.faqs.org/faqs/by-newsgroup/alt/alt.support.crohns-colitis.html).

They are a wonderful little "family" (or were when I frequented it ~ 12 years ago when my 5 y/o was diagnosed with UC). Lots of good info - new medical breakthroughs/wholistic ideas/alternative medicines/diet ideas/shoulder to cry on (and of course a routine number of "wackos").

That group was the catalyst for the information that has allowed my daughter to be in remission for all but about a month or so of the 12 years she's lived with UC.

Keep your insurance - whatever the cost. You're now uninsurable (and pre-existing conditions can be excluded by a new group plan) unless you maintain continuous coverage. If the med cost is due to formulary restrictions, get your doctor on your side, try the forumlary drugs, if they don't work figure out what does and request an exception. Formulary exceptions are fairly routine for IBD drugs, as long as your doc is willing to fight for you.

[alfredo]

8. I used to go there. I've kept in touch with one person from there.

He's a UC sufferer from Poland.

[Ms. Toad]

11. Time frame?

I hung out there 1995-1998 or so. Great help through the rocky first few years we were getting used to having a small child with a chronic illness. I also bopped in for a brief time around 2002 when my daughter had some non-GI symptoms that we thought might be related.

[alfredo]

12. It might have been around that time.

Do you remember a guy talking about Clyde the Gerbil? Do you remember Radek?

[Ms. Toad]

14. Radek sounds familiar

Clyde the Gerbil, no.

[alfredo]

16. Clyde was an imaginary pet of unusual abilities like hang gliding

and such. He travelled the world following the professional cycling circuit. He was a composite of some of my more remarkable friends*. I used him to lighten the sometimes depressing tone of the place. Radek had just graduated from high school and was on his way to law school. His UC is pretty bad and has since developed MS. He married his beautiful red headed high school sweetheart, has three kids. He's a lawyer for the Polish Social Security office, a leftist, and now a good husband and father.


*One rowed across the Atlantic in a bathtub sized boat. One rode a unicycle up to the Everest base camp. One was a Mechanic for a US professional cycling team. Another was an Olympic cycling coach.

[Ms. Toad]

19. I think I would have remembered Clyde,

so we must not have crossed paths.

Sounds like Radek has a pretty challenging life. Odd coincidence - I just did my annual MS bike ride . . .

It did get pretty heavy at times. The participants tended to be folks newly diagnosed, and long termers with severe enough symptoms to need long term support. Both pretty needy portions of the population - but a lot of much needed support for the early stages of learning to cope with IBD. I was really glad I found it when I did - the suggestion floating around the group that IBD was connected to food allergies made it possible for my daughter to be in remission for most of 12 years, now.

[alfredo]

20. Good attitude and good advice really helped me.

[lonestarnot]

5. Yes. Insurance, I wish everyone had it, but want more than just a wish!

Hope you are going to be ok. Alfredo has positive post.

[Kip Humphrey]

6. Suggest you investigate the modified carbohydrate diet

My wife stuggles with active Crohn's. The modified carb diet has reduced the ulceration and helped keep her out of the hospital without the drugs for 3 years now.

[nancyr]

10. A nasty desease.

I've had it for over 40 years. It is not an easy thing to cope with. There is a very helpful Crohn's group at Healing Well.com I highly recommend it. My Crohn's got totally out of control because I was without health insurance for several years after my husband died. No-one would insure me due to my pre-existing condition.....and I couldn't have afforded it in any case.

[GreenPartyVoter]

9. Crohn's is no fun . I feel for ya, hon *hugs*

[onenote]

13. It can be unpleasant, but manageable

My best friend's 18 year old son was diagnosed with Crohn's in July-- just before he was to go away for college. He had to have an 11 inch section of his colon removed surgically and he is on various meds and certain dietary restrictions. But he left for college last weekend and his life seems outwardly normal.

Hope things work out for you as well.

[proud2BlibKansan]

15. I have two close friends with Chrons

One has done very well with medication and the other has had a harder time but is doing much better on new meds. They both swear by a carefully monitored diet.

It is definitely manageable.

:hug: Here's hoping you will manage with few setbacks.

[greenbriar]

17. thanks all

I don't feel so scared now

[malaise]

18. Take care greenbriar

:grouphug:

[AZBlue]

21. Sorry to hear that but glad they've pinpointed it and that you do have ins.

Take care of yourself!!

[begin_within]

22. Here's a web site with lots of information about it

http://www.ccfa.org/