Crohns Colitis IBD and IBS info

3 Responses to “I have had crohns for 16 would love to talk to any one who has it?”

1. Belldandy Says:
   
   March 12th, 2006 at 7:44 pm

   I have had it for 14 years. Mine is rather mild. I’ve never had surgery and have only been hospitalized twice. I do have severe arthritis and have developed ankylosing spondylitis because of Crohn’s, and am in pain most of the time, even with pain medicine. I used to get terrible ulcers on my legs, but they are better now. So, I’m better off then you in most ways–but we can still talk if you want! There’s also a good message board at that you might want to look into.

   
   
2. scrappynme Says:
   
   March 16th, 2006 at 6:15 am

   I have had it for 11 years, since I was only 3. It’s a very severe case. For years I battled the illness and absolutely nothing worked, so they finally gave me colorectal surgery almost 2 weeks ago, removing my colon to try to make me feel better. I think it’s going to work, although emotionally I’m going up and down right now. (I now have an ileostomy, a stoma with an ostomy bag with the small intestine pulled through the abdomen allowing stools to be passed through it.) We hope this will finally be the cure, and that it won’t return to any other part of my bowels, like Crohn’s sometimes can.

   It’s very rare for a 3 year old to get it, but it happened. (Well, I say 3, but even from birth I was very small and never grew, and Crohn’s can stunt growth in children.) But when I was 3, I began to look very pale, and just get more and more tired. Then came the stomach pain. Such bad stomach pain that I remember rolling around on the floor screaming and pulling my hair. And came the diarrhea, a dozen bowel movements a day with blood and mucus. I was hospitalized several times over the course of a few weeks, and had EVERY test imaginable, to rule out anything horrid, like a terminal illness. Then came a colonoscopy, and they found IBD. I was so ill that I had to be put on high, high dose steroids, even for my little size, or it would be Intensive Care. I almost needed a blood transfusion. I was SO anemic, and I had fishers. (I’ve had them on and off over the years, depending how bad my Crohn’s flare ups have been.) They even got ready to do colorectal surgery then, but didn’t when they said it was actually not Colitis but Crohn’s in my colon. (Something that happens rarely enough.)

   So I was on prednisone from the ages of 3 and a half to 8, because nothing, absolutely NOTHING else worked, and at the worst stage of my being on steroids, when I was 5, I puffed up like a balloon so badly that I looked obese, although I wasn’t, I was just on such high doses. I was ALWAYS hungry and got SO cranky and miserable.

   Then came methotrexate when I was 8. That seemed like the magic bullet, the answer to all my prayers. (I’d even tried Remacade when I was 7, and although it helped SO many people and so many Crohn’s victims seemed almost cured because of it, it hadn’t helped me.) Methotrexate did work. For 4 years it worked. I was so healthy, it was almost like Crohn’s wasn’t there. Until I was 12 and we decided to try to wean me off it. I flared up IMMEDIATELY, and when we tried to go back on it, it didn’t work. For another 2 years I was on steroids, until we and the doctors said, “Right, that’s enough. Enough drugs that don’t work, enough steroids with awful side effects and long term effects.” I still am not growing, and have the body of a 10/11 year old even though I’m 14. I had colorectal surgery 2 weeks ago, and am about to go off steroids for good, and hope to God that the surgery cures me.

   
   
3. common sense Says:
   
   March 17th, 2006 at 4:51 am

   hi mary, I am a female crohnie soon to be 40 yrs. old. I was dxed at the age of 12 and had my first surgery at the age of 17. I can truly relate to all the wonderful side effects you are having b/c I have been through some of them myself esp. the joint pain and running to the bathroom as soon as I started eating. It really stinks.

   Have you looked into trying Entocort and Humira? They are the newer treatments for Crohn’s. I am on Entocort and was on Humira for a short time.

   The Crohn’s & Colitis Foundation has a website you can go to for updated info on diet, drugs, surgery, locating a local support group near you, etc. They also have a live chat and hotline that is run by healthcare experts during the week. They also have a forum where you can post questions to those in a similar situation.

   Mary, just know that you are not alone. Feel free to contact me if you want to talk to swap war stories with this illness. Yrs. ago when my treatments stopped working and I was in so much pain, I felt so along just because the GI told me there was nothing else he could do for me until the newer meds came out.

   I wish you a life long remission.

   
   

Leave a Reply

You must be logged in to post a comment.