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- kay222
- coffee0
- jpav806
- temhall
- fedex81
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» kay222 - Crohn's support page
I am 29 and have recently been diagnosed with Crohns. After a 3 day hospital stay, I have been able to find so much more information on-line than I did the entire time I was in the hospital. It has been really uplifting to read other peoples accounts of how they have dealt with the symptoms and to find that some of the symptoms I have are not in my head. This is the first site I have found that validated the fuzzy head, forgetfullness, depression, loss of energy. It has been scary to read of what could happen, but it seems that even the people who have the worst sypmtoms have a great sense of humor-something to keep in mind for the future. So far, I have been able to keep working, though some days I just cant get out of bed. I have 2 small children and it makes me sad to know I will not always be able to do the things with them I wanted to do because of this. But, I am trying to cope with it the best I can and my husband of 8 years has been so great about it. Good luck to all who read this.-- posted by kay222
» jpav806 - Re: fistula
In response to message posted by coffee0:Hi coffeeO,
I can't tell you how to tell if it is a fistula or not. I can tell you that you don't want to take the chance of deciding that yourself. Just go the the doctor right away. Better to be save than sorry. Just read on and you will see why. I am now dealing with a very bad fistula because it was first mis-diagnosed as a blocked Barthlins gland. It was down there inbetween the vagina and the rectum but I went to my OB/GYN (big mistake) and she is the one that got it wrong. So for 3 weeks it didn't seem to get much better then it got huge and I went back to her. She wasn't there and I had to see another doctor who immediately said she do you have Crohns? I said yes and she called a surgeon and I was in his office within 20 minutes and having surgery to open the absess right then and there. He said if he had seen me sooner it wouldn't have been nearly this bad. I have been battling thing since January. I think I first noticed (what looked like a little pimple or small boil or something around the middle of December. I thought it might go away and didn't want to mess Xmas up so in January I found out that I shouldn't have waited. Now we still can't get it to get much better. I have since had to have another surgery to put a drain (Seton) in so it will keep draining. The hope is that we can get the inflammation in the Colon and Rectum to subside so they can do surgery to repair the hole up there that caused all of this.
So my advise it definetly GO TO YOUR DOCTOR...
Good Luck,
Judy
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-- posted by jpav806
» temhall - Re: Re: fistula
In response to discussions on fistulas, I have recently been reading about a new drug called Remicade or Infliximab that can heal fistulas and suppress the symptoms of Crohns. It stops what is called TNF, tumor necrosis factor and has just been approved for use in the treatment of Crohns, there is quite a number of reliable articles on this present on the internet. I hope this is hopeful and good luck to all who read this.-- posted by temhall
» fedex81 - Re: Re: fistula
In response to Re: fistula posted by jpav806:I can't believe i've run acroos a site in which someone has had the same crazy fistula as me....anyway mine was in the early 80's...went to see a OB/GYN(big mistake)...a simple outpatient surgery turned into a nightmare...he said we'll just remove that small blockage....by the time i awake he had taken one from each side????without asking?...later...they did not heal...guess what?...those 2 holes became burrowing ground for fistulas to the anal tract..gyn did not know about Crohns, he just said i'm sorry i can't do anything else......just to let you know, judy...i ended up having surgery so the fistulas would not go and return...had to talk to 3 different surgeons though...no one wanted to touch me when they found out i had crohns...Dr.Micheal Thomas came to my rescue...he patched those holes like mudding a nailhole on a wall before painting!...can't even tell anything was there!!!I thank him to this day...anyway, good luck with yours...PS..is that not a heck of a place to have holes in ya!
-- posted by fedex81
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