Anyone have exp with Crohn's Disease?

[Aimeedyan]

I was recently diagnosed with Crohn's, and should have my first Remicade treatment on Friday. Does anyone else have it, or have exp with it? I have TONS of questions to ask, I'll list a few for any that can answer!

1. How long have you had it? What is your daily life like, I mean, how often are you sick?

2. Have you been on Remicade? How did you react?

3. Are you in remission? How long did it take to get to that point after a big flareup?

4. What is your daily pain level like? Does the pain eventually go away?

5. Where is your damage located? What kind of symptoms do you have?

So many others... I will try not to overload you! THanks so much to anyone that responds!!!!!!!!!!

Aimee (I'm pretty new to the Community Board)

 

[heathrow42]

I don't have Chron's or IBS, but a very good friend of mine does and I had helped her do some research a few months ago. There is plenty of information available on the web.

There is a very extensive website called IBS group http://www.ibsgroup.org/ They have alot of information, links, books and a very busy message board, as well as weekly chat. I reccomend checking out their other links as well as some of the books.

There are several cookbooks that seem to help as well... The one I know of off the top of my head is Eating for IBS and they have a website as well http://www.helpforibs.com/diet/

She has had this for a little over a year, and until very recently had been sick almost everyday. She knows that for her it is made worse by stress and what she eats. She has made extensive diet and lifestyle changes, but is finally getting it under control.

I hope this info helps. Goodluck Aimee!
--heather

 

[Aimeedyan]

THank you Heather! I will look into both of those links! I have been searching for an active message board to join! Perhaps that one will be helpful.

I look forward to hearing from anyone else =)

 

[damo]

DawnCt had a post recently about her son. Here is the thread.
http://130.94.75.33/showthread.php?s=&threadid=529490

 

[Robinrs]

My ex had it and they thought I had it when I had a major IBS problem.

He's had 6" of intestines removed and he still has problems. His is made worse because he doesn't take his medications on time.

I used to belong to some incredible internet groups years ago when I had my problem. I lost the link, though. Incredible support groups are out there because this is a chronic disease and it helps to know that others are dealing with it.

God bless,

Robinrs

 

[TinkHappy]

My husband is on his way to his Remicade treatment as I type this. My DH has had 4 surgeries. He has no large intestines (large bowel) and he has had 6 inches of his small intestines removed. He has colostomy.
I don't say this to scare you, his is a very bad case (one of the worst-through Yale New Haven Hospital)
I would like to say he is doing GREAT, after several different treatments, it appears that Remicade is the only thing that has really worked for him. When he goes into his treatment, they hook him up to an IV drip for about 2/3 hours (he takes his lap top with him to watch a movie or work), they give him Benadryl before his treatment, so he won't have an allergic reaction. So, when he comes home, he is usally tired.
I know this is probably very scarey for you and I totally understand. If you would like more information, I know my husband would be more then happy to speak with you. If you are interested please PM and I will give you his email address.
also he belongs to Crohns and Colitis foundation, I think their website is

www.CCFA.org

Hope I helped, please know that the more support you have the easier it is to deal with. Do not hesitate to look up support groups (my husband wasn't really into the support groups-but everybody is different) in your local area, just contact your local hospital.

 

[DawnCt]

My son was just released from the hospital with Crohn's colitis. His symptoms have been pain after meals, he has had one rectal fistula and two peri anal abcesses. Because of the occurance of those last two conditions, he was evaluated and diagnosed with Crohn's almost two years ago. This past episode of symptoms of bowel obstruction lead to his hospitalization. He was able to avoid surgery with iv antibiotics, and decadron. He was discharged on Prednisone and 6 mercapto purine. That's a level of medical support just below Remicade, as I understand it. He also MUST not smoke. Cigarette smoke is figured prominently into flare ups. Everyone's dietary tolerances are different. He must avoid seeds, fibrous foods and he doesn't tolerate beef. He used to say that Chi Chi's didn't use real beef because it was the only beef that didn't make him sick. Good luck. It is so awful to have to deal with chronic illnesses and plan your life around it. Thanks to all of you who sent prayers and well wishes to my DS.

 

[Aimeedyan]

Thank you both for sharing your stories, I really appreciate it. I have been in pain since the beginning of Dec and haven't been really eating... I've dropped 4 dress sizes since Christmas and am still losing. After numerous tests, they finally found the Crohn's (Evidentally its not that easy to diagnose, they thought it was first Celiac Disease based off abnomal labs). I have a fistula that is growing into an open wound that I've had for 11 months that won't heal (reason why all these labs started, I couldnt heal!), and lots of damage/inflammation in the end of my small intestine. And all the usual symptoms in addition to the pain. I am hoping Remicade will be a mirable drug - I really want my life back. ONce things are back to normal, I am going to evaluate my diet as well to see which foods are no-nos. Right now, ALL food is a no-no =)

Don't worry, you didn't scare me. I know that is all a possibility in the future, but my doc said that with the introducation of Remicade, surgeries have been less frequent. I am glad to hear its working well for your husband! Now only if it wasn't so dang expensive!!!!!!!!!