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cookworm
06-03-2006, 07:20 PM
Okay, this is REALLY off topic, but I'm kind of bummed out and was hoping to turn to the friendly group here for some camaraderie amongst fellow needlecrafters. I was diagnosed with ulcerative colitis ("u.c.") about 17 years ago. After it was not medically managed and got very severe, I had major surgery about 10 years ago which was supposed to cure it. Anyway, maybe in the last year or so, I noticed symptoms coming back that were really similar to the symptoms I had initially with the u.c. and after having a test done, they found out that I was "probably misdiagnosed" and actually have Crohn's disease, for which there is no cure. The medication they want me to take is a cancer med (6-mercaptopurine) to help prevent progression of the disease. I'm kind of freaked out by all of this. Firstly, the meds I took for u.c. over the several years I had it did NO GOOD--lots of steady doses of prednisone and sulfadrugs--so I'm nervous about taking yet another med...what if it doesn't work either? Secondly, I'm freaked about having been "misdiagnosed"...over the course of the duration of my u.c., I saw several different doctors--how come nobody caught this? Lastly, I guess I'm panicking about taking a cancer med for this because that means it's a strong medication and poses its own set of side effects. Does anybody out there have Crohn's? What advice can you offer? I know I shouldn't be doing this, but I'm already thinking about how bad things can be based off of how bad they got with the u.c., and I'm so scared. :crying:

ekgheiy
06-03-2006, 07:25 PM
I'm sorry you are faced with such bad news. I don't have Crohn's, so I can't speak to it. But I found this website: http://www.ccfa.org/

I hope it can help you. :heart:

kimmie
06-03-2006, 07:27 PM
My son has Crohns and he takes 6MP in addition to some other things. I'll pm you.

:heart: kimmie

Mama Bear
06-03-2006, 07:37 PM
PLEASE check out breakingtheviciouscycle.info (http://www.breakingtheviciouscycle.info)

I have up close and personal experience with more than one person who has been totally cured of LONG TERM Crohns with SCD.

One friend had severe Crohns for over 20 years. Had leasions removed from her brain due to all the prednisone and medications they had taken over the years, and was on the verge of having significant portions of their intestines removed when they discovered the above information.

One year later, their scopes came back Crohns free due to Elaine's work and the above information and help.

Best wishes!

Mama Bear

janelanespaintbrush
06-03-2006, 07:52 PM
I had a BF who had Crohns before I met him. I believe he had some kind of surgery (I'm sorry I can't be more specific), and had been problem-free for several years by the time we started dating. (This was a while ago, and I am unfortunately not in touch with him anymore.) I know it's not very informative, but I wanted to let you know that it can be successfully treated. (I think he was also into homeopathy, so that may be something to look into as well.) Good luck with your treatment. I'm sure every one here is sending positive thoughts your way.

AnreeAce
06-04-2006, 11:17 AM
...I'm so scared. :crying:

(((((((( :heart: :heart: :heart: ))))))))
Big Hugs to you.

I can't add much to this discussion because I don't have Crohn's, but I wanted you to know that I'll keep you in my thoughts. Hang in there, we're all here for you.

dustinac
06-04-2006, 11:27 AM
:heart: Sending you big hugs and prayers :heart:

kitkat
06-04-2006, 12:30 PM
Sending you hugs - I dont have personal experience but I know from friends experience this is a nasty disease.

Nikki
06-04-2006, 01:51 PM
Big but gentle hugs for you. Know that you are in my thoughts and prayers daily. Now, get busy and do lots and more research. Read everything you can get your hands on, talk to other doctors, talk to people living with this. Don't make any moves until YOU are statisfied you have all the knowlege your brain can hold.
gentle hugs again,
Nikki

BinkyKat
06-04-2006, 05:15 PM
My dh has had UC since he was about 17 or 18, he's been off and on prednisone and sulfasalizine for years, as well as asathropine (sp). his best diagnosis (worst case scenario) would be to either have ostomy surgery ("easier" but more of an effect on his lifestyle) or a colon reconstruction (more desireable as far as his active lifestyle but hard due to time missing work and having a temp ostomy). his ulcers are located at almost the last portion of his intestines next to the colon and too boot that area is unusually sharply angled so he has very limited "control" if something passes and irritates the ulcers. I worry that he could be predisposed to colon cancer, my heart breaks when he's having flares... which really never seem to totally go away. luckily it has never affected any other part of his system so hopefully crohn's is not a possiblity. if i'm not mistaken, isn't uc limited to the lower intestinal area where crohns can potentially be found anywhere in the digestive system? :thinking:
i'll have to mention your thread to dh, i bet he would be very interested in the thoughts of other in your situation...he feels very alone in this at time. many people think he just has a continence problem which is so untrue.
good luck and best of health to you!
Jodie

mulene
06-04-2006, 06:34 PM
:heart: Hugs from here too

I don't have it - I don't have experience of it but I DO have mild IBS and I know how bad even that can be - I can't imagine what you are going through right now but my thoughts are with you and I hope all goes well for you with treatment. I can imagine it is very scary :( but we are all here for you when things look scary (and when they don't look so scary too)!

cookworm
06-04-2006, 09:46 PM
Thanks SO MUCH for everyone for you kind and gentle words and thoughts. I was debating about whether or not to post my situation, but I'm glad I did because I feel better about things. I'll just have to take each day as it comes and try not to get down. I'm just scared after dealing with the ulcerative colitis for so long and how bad it got about what might be in store, but I realize you can't "what if?" because you'll drive yourself crazy. ekgheiy, thanks for the post for CCFA--I used to be a member but let my membership lapse; I should rejoin. ;) Kimmie, thanks for your help off group. Mama Bear, I ordered the book you sent the link about...I will be very happy to try a diet if that will help things--thanks for your help. BinkyKat, I had the "pull through" surgery where they remove your complete colon and fashion a "pouch" from the bottom portion of the small intestine; while the inner surgery reconstruction is healing, you have to have a temporary ileostomy. If your husband's u.c. is manageable with meds, etc., and if he's not in severe chronic pain and he can live with his u.c., I don't know how he'd feel about pull-through surgery...it's a pretty major deal to heal from, although once I healed, I felt a million times better than I ever did with u.c. My u.c. involved the whole left side of the colon and it was starting to travel to the transverse colon, so I didn't want to mess around anymore...there is an increased risk for cancer with chronic flare-ups unfortunately, and colon cancer runs in my family. Also, after years of being on steady doses of prednisone, Azacol, Azulfadine, and Rowasa and not getting any remissions at all, I figured enough was enough. I think I was taking something like 50 mg of prednisone every day straight for like 7 years (no "dial packs" for me); something like 22 of various pills a day total right before I had my surgery, and still not getting any relief. If he was considering the pull-through surgery at all and if he wanted to talk about it, feel free to pm me. You're right...u.c. is much more than just a "continence issue"...it's very painful, physically debilitating, and psychologically debilitating as well. Thank you to everyone for your kind words...it really means a lot. But then again, you're already a great group, being a bunch of knitters! :roflhard: If anybody has any information they'd be willing to pass along, please feel free to pm me. Thanks again for letting me post my problem!!!

Mama Bear
06-04-2006, 09:59 PM
Cookworm,

There is a support email group on the site I listed. You might want to check into it as someone there can give your more information and support as well as first hand experience.

Best wishes!

Mama Bear