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Crohn's Disease
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Posted 7/24/2008 4:11 PM (GMT 0)
Is there anyone out there in the St. Louis area that likes their GI doctor?
Posted 7/24/2008 6:40 PM (GMT 0)
Hello - I am from columbia but I just went to Barnes Jewish Hospital in St. Louis for a second opinion and saw Dr. Stone who is a professor and a doctor and I loved him. I actually considered switching to him even though that would mean driving an hour and a half to see him. I am going to start remicade soon so I decided to stay with my local GI. He was very straightforward and answered all of my questions completely. The office seemed well run also. The only thing is it can take a while to get in to see him initially. He is a specialist for IBD. I have UC by the way not crohns but he specialize in both.
Posted 7/24/2008 6:50 PM (GMT 0)
Was it by chance Dr. Christian Stone - through Washington University?  That is the specialist that my GI doctor just referred me to.  I callled today and I can't get in until September 11th.  That bothers me because I am in so much pain and having so many problems and that is a month and a half away.  My regular GI suggested Remicade, but to be honest, I don't know that much about it and it scared me.  Do you know much about?

Posted 7/24/2008 6:51 PM (GMT 0)
Hi, I live in Collinsville Il. I see a Dr. Omran at SLU. He also specializes in crohns. He's very approachable and I like him. It took me awhile
to find him, but I'm so pleased I did.
I also have the same problem as hana24, getting an appointment is tough, because of his specialty. He's also assistant professor, so that means
he teaches a lot too.
Good luck with your search...
Posted 7/24/2008 6:59 PM (GMT 0)
Yes that is him. I got in to see him in about a month and a half and my doctor was shocked that he could get me in so soon. What medicines are you on now? From what I have learned Remicade works really well for some people. It has about 60% chance of working. That might be for UC and not crohns. For some reason I thought I read that people with crohns are more likely to respond well to it. It might just depend on if your crohns is in your large or small intestine. I was really against it but I have come around because my life has been very negatively affected in the last 9 months since I have found out I have UC. It can be dangerous but taking prednisone for a long time is worse.

If you are not on prednisone now I would suggest asking your doctor for a 40 mg taper untill you can get in to see the specialist. It works wonders for me but it is easy to gain weight. I have gained 25 lbs in two months. If you have lost alot of weight from being sick this might be a good thing. It helps to limit your salt intake to reduce the about of weight you gain.
Posted 7/24/2008 7:10 PM (GMT 0)
I am currently on Petasa.  I was on two antibiotics and Prednisone for 6 weeks.  I just got off the Prednisone.  I really couldn't tell a difference being on the Prednisone and the side effects were worse then the help it was giving me.  My Crohns is in my small intestine but they think that I have a fistula.  I tried taking Imuran, but again -the side effects were bad.  I was sick to my stomach and had chills and fever the whole time I was on it.  My GI doctor suggested the remicade, but he didn't give me any information about it.  It has only been 2 months since I have been diagnosed, but I am having a rough time.  I work part time, my husband works about 70 hours a week and we have 4 kids.  It is really hard for me to keep up with everything - and I am afraid that when school starts back up and their activities all start back up I won't be able to keep up.  I have an 11 year old, a 7 year old, a 3 year old and a 2 year old.  They take a lot out of you when you are healthy - much less when you don't feel well. 

Posted 7/24/2008 7:37 PM (GMT 0)
You need to take care of yourself or you wont be able to take care of them. Petasa is one of the basic 5-asa drugs that they have almost everyone on. I think some people do just fine with them but they don't seem to do anything for me and alot of others. I have tried several similar ones. Remicade can heal fstulas also. Alot of people consider it their "miracle drug". I haven't tried Imuran but I know it can take up to 3 months to kick in. I was worried about the side affects of it also. If you can't take the prednisone then you are kind of stuck until sept.

Someone on here said that the most important thing to do when you are flaring is to eat right, sleep at least 8 hours and try to get some exercise. Those can be the hardest things to do when you are sick but they do help. Even if you can just walk around the block a few times a day it helps. You could see if the doctor can give you some pain medicine also but it might knock you out which can be difficult with little ones. Someone suggested deep breathing exercises for the pain and I kind of laught it off. But I googled that and pain management techniques and that stuff can help. I am the most skeptical person of all but deep breathing and long baths help me.

My last idea is that some people have success with modifying their diet. There are two popular ones - Breaking the vicious cycle by Elaine GOttschall and the makers diet which is religiously based but it is a similar diet. They are very strict diets and they seem to work for some and not for others. I have one of the books but I have never successfully been able to stick with it. If you look through the old posts you can find alot of people talking about them.
I am sorry you are so sick - these message boards will help also. It helps me to talk to others who understand. good luck.
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