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Crohn's Disease
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Posted 12/10/2007 5:14 AM (GMT 0)
This is my first post, so bear with me. I was diagnosed with Crohn's a few years ago. I've been in several states of pain/uncomfortability for over 6 years. I'm currently on Remicade and Imuran after every test and every drug my doctor could think of. I've only had one really bad Crohn's episode since the Remicade, but a lot of my other problems that the doctor blames on basically IBS still bother me every day. Basically, it usually hurts when I go to the bathroom, usually not needles, but a dull persistent pain in the rectum area, occasional nausea with no vomiting, and just generally feeling terrible. I have a hard time describing the last part; it either involves cramping or fatigue or some unspecified terribleness.

The really annoying part for me is that I cannot in any way determine a pattern. I don't eat any spices and stay on a gluten-free diet (it's about the only thing that hurts every time). Even with this very restricted diet, which sucks because I like a variety of food, I have the same problems. I could be absolutely fine all day, go to the bathroom once (not even diarrhea) and feel terrible the rest of the day. I take Tramadol for the pain, which helps, but other than vitamins and a probiotic I don't have much relief. I'm not too crazy about taking pain medicine everyday. I have started drinking Fennel tea, which sometimes helps. A lack of sleep or too little sleep really messes me up. It feels like a hang-over without the previous night's fun (which I can't do anymore).

I haven't had any major surgery yet, but I'm a little nervous for the future. I'm 30 and we're talking about having kids very soon. I'm really not sure if I'll be able to do it.

I guess my question is, has anyone else had a similar experience that can give me some recommendations or ideas?

Thanks for listening.
Posted 12/10/2007 1:27 PM (GMT 0)
i have the same issue. Dont know how to describe the feeling in my rectum as well. Very uncomfortable, itchy raw pain. I use creams (barrier cream, hydrocrotisone) and wet wipe instead of toliet paper. I also sit in a bath of epson salt as well. I m always nausea not knowing if it is from food or side effects from medciation. Tramadol makes the nausea for me even worse. Nausea medication which makes me loopy so i just fight threw it. i have same issues i wish i could figure out what makes go diaherra and then it is a hard stool makes no sense whatsoever. I exercise alot too not sure it that helps. I dont have kids and dont plan to i cant imagine when you feel sick and need time to rest taking care of a baby. Try laying on a heating pad. I try npt to take any pain medication as well i just fight threw it. I take ambien sometimes at night when i havent slept good in a few days.
Posted 12/10/2007 5:13 PM (GMT 0)
welcome! I have no great answers for you except keep hanging around here and you will meet lots of folks who have many answers. I agree with trsora about creams to help a sore bottom. take care, yp
Posted 12/10/2007 8:46 PM (GMT 0)
    Hi, I'm new to the group.

    I've had Crohns most all of my life, I suspect, but seven years ago it cought up to me when my colon ruptured. I'm on remicade and imuran.

    One of the worst things I've found out about this disease is, at least for me, that pain medications seem to always make matters worse, they slow down the system to much. YOu just have to find out what foods you tolerate best and stick with those.

     I know what you mean about feeling worse after going to the bathroom. That is the worse time for me too.

     Take care, El

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