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  • I've got Chron's disease!!!!!!

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    Old 03-28-2005, 03:37 AM   #1
    vonee
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    Question I've got Chron's disease!!!!!!

    Well I just got out of the hospital a few days ago and I've got Chron's disease and ulcerfitive colitis, so the doc says. I was in for 11 days. It started the 2nd week of Feb.! I've been having problems for almost a year with my back and stomach. I never even thought of something like this and how this is going to change my life, or I should say how it is changing my life. But for the better! I've already stopped drinkin alcohol all together, which is a good thing. I've had to change my diet. I'm concerned about gaining weight though cause fiber isn't recommended to me right now and I used to eat alot of it just for that reason. There is so much to learn about this disease and it's overwelming somewhat. My gas doc is going to be starting me on Remicade infusions and I've already had my first one. I've read alot of negative things about this medicine and am concerned about it. I'll be asking the doc alot about it still. But I'm in God's hands so I'm tryin not to worry too much, but worrying so much about so much has added to the irritation of my stomach and where I'm at today! I'm sure that some of you can relate and have similar problems and I would like to talk to you and share information and learn as much as I can about this disease.
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    Old 03-28-2005, 04:02 AM   #2
    mudhound
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    Re: I've got Chron's disease!!!!!!

    You have came to the correct place. I've had U. C. for 15+ years. Yhe flare ups have been few so far but they can put us on our backs. Or butts. Sorry for the humer.
    Getting others advice is the best thing you can do.
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    Old 03-28-2005, 01:37 PM   #3
    kisa
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    Re: I've got Chron's disease!!!!!!

    ravyn142003

    My inlaw has Chron's & ilitis (SP?), I know his diet is restictive, & that he goes for vit. B & B12 shots, & that seems to help. Did they tell you how they plan your treatment?. I know that he could never gain any weight, so I do not think you need to worry about that. !!, glad to hear that you are not drinking, he had to stop as well. Good luck to you !!

    Kisa

     
    Old 03-31-2005, 03:25 AM   #4
    vonee
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    Talking Re: I've got Chron's disease!!!!!!

    Hi all! I am taking 3 colozaw 3x a day, potassium due to lack of it, short term predazone(thank God), phenegran for nausea, vicodin for pain and I have had one infusion of Remicade before I left the hospital. I go to see my Gas doc tomorrow for my first time since I got out. I'm not looking forward to the remicade. I have a stint in my right arm so they can administer the drug to me thru IV at home. A nurse from Spectra Care comes every week to clean my dressing and stuff.

    I've been feeling better the last few days. Except I keep stuffing myself! I get these hunger urges just out of the blue and can't seem to stop eating until I am so full, then I have to go to sleep! I don't now what is up with that, but I know it has to stop! This disease is really weird!
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    Old 05-03-2005, 09:24 AM   #5
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    Question Re: I've got Chron's disease!!!!!!

    Hi all,

    I am 29 years old and was diagnosed with Crohn's Disease at age 8. After the initial illness and hospitalization I went into remission and have had VERY FEW problems until one week ago. It started with me thinking I had a bladder infection: lower central abdominal pain, and feeling that I need to urinate more often. I went to the Dr. and was treated with antibiotics for a bladder infection. Then those pains I remember from childhood came back. Now I'm having the pains from CD, associated back pain, and what still feels like a bladder infection. I know CD can cause joint pain, and I expect that's why my back (and body in general) aches. But I never heard of CD causing pain that feels like it's in my bladder. Has anyone else experienced this?

     
    Old 05-03-2005, 07:38 PM   #6
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    Re: I've got Chron's disease!!!!!!

    The prendisone is whats causing you to eat so much. That is one of the bad side affects of the med. Making you eat and eat!

     
    Old 05-05-2005, 09:06 PM   #7
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    Re: I've got Chron's disease!!!!!!

    Hello,
    I have been diagnosed with Crohns disease for a little over a year. They found it becouse of fistula's that decided to exit my body via my female parts. Sorry so graphic. I had to have two colonoscopes to diagnose it. I had to take the prednisone for about 4 months. I will tell you from experience that it makes you eat like crazy. I found it best to keep pretzel or crackers around. I have been taking Asacol and Augmentin XR for the Crohns since my last Colonoscope. I have heard a lot about the Remicade treatments and am wondering how you feel about it? My DR talked to me about it to clear up the fistulas but I have worries about it. I am only 23 and want to have kids. He has told me that they really dont know how it would affect a pregnancy. Besides the fistulas I have only had a few minor problems with it. I, of course, get really sleep all the time, the many trips to the bathroom every once in awhile, and lately I have been getting really bad stomach spasms. He gave me meds for it and I feel much better. It is nice to talk to people who have Crohns. I hope that you get better and if you have any ? for me I will check back in.

     
    Old 05-07-2005, 10:28 PM   #8
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    Wink Re: I've got Chron's disease!!!!!!

    Hi! What do you mean thru your female parts? I mean, how could that happen? That's scarey! I haven't been on for a while cause I've been moving. All moved in now so I'm glad to be back on this board.

    Well first I'd like to say that I'm worried about taking remicade also. There are so many different side effects and each person seems to always have something different. Reading and studying about remicade on the net has been very informative so maybe you've been doing that also. I had one infusion in the hospital and my blood pressure went down and since then I've been having bouts of being really lethargic, very tired and almost had a panic attack one night. Luckily I wasn't alone and I calmed down but I was scared. I have been itching alot, don't know if it's from remicade or not, could be from colozal. Anyway, I'm supposed to have a 2nd infusion this coming week but I tell ya, my doctors are not communicating well with each other or me. My gastrologist didn't even know that I had a pic line(24 hr. IV thru to the heart) until I talked to him the other day. I had to have it removed because it got infected severely. I am very upset about it too. How could he not know? I don't trust too many doc's at all and I'm so mad about my experiences with all these darn doctors that I'm thinking of stopping all med's and just dealing with it on my own. Malpractice is all too common these days and as far as how my case has been going? Well I'm scared that they are going to mess me up even further! HOpe to hear from you soon and that you are doing better.
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    Old 05-09-2005, 09:57 PM   #9
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    Re: I've got Chron's disease!!!!!!

    You can get what are called fistula's. they are like tiny tunnels that can track anywhere they want to. mostly to your bladder, anus or in my case your vagina. very embarrassing. The remicade is the best meds to take for the fistulas but I am on the next best thing for them, the Augmentin. That is actually how I found out that I had crohns. i had gone to my old ob/gyn to get these bumps that I had found down there looked at. He said that it was ingrown hairs and to not worry. I didnt think that he checked them enough so I decided to get a second opinion. I am lucky that I did. my new ob/gyn did everything he could but didnt know what they were. He finally decided to try to remove the lumps surgical. well bad move. they were gone for about two weeks then they came back. He had done everything that he could think of doing so he sent me to a different dr. about five dr later they decided to try a colonoscope to see if there were tracks to my bowels. sure enough there were. That dr really was not looking for crohns but thought that that might have been my problem. he sent me to a gi dr and he did another colonoscope about a month later and said it was crohns. Well now I have just one fistula (i did have 3 in the same area) it is sometimes painful but most of the time I dont even realize that it is there. I have done some research on remicade but i still dont think that it is an option until I know that it is safe. If you havent been there already you should check out the crohns and colitis foundations web page it is very informative about crohns it even talks about the fistulas. the web page is ccfa.org well take care of yourself and know that there are other people out there with this disease. I will talk to you later.

    Rottlover

     
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