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Crohn's Disease / Ulcerative Colitis Message Board
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Old 02-27-2004, 11:46 AM   #1
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krazyboy_w HB User
crohns disease...? need info/please help.

Hi everyone--love the boards, I always receive great feedback. I posted earlier this month about being nervouse about having a colonoscopy. I could not find the post so decided to post a new one. I had a colonoscopy and an upper GI done--they diagnosed me with Crohns disease. What is this exactly, what are the effects, dangers, treatment, etc. Anyone with this diagnosis, please respond. There is not much on the internet because I am researching, trust me. I need to know real opinions. I am only 27 and I thought that I was healthy. How will this effect my life? Thanks a bunch.

 
Old 02-27-2004, 12:52 PM   #2
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Re: crohns disease...? need info/please help.

Hi
I was diagnosed with Crohn's disease 15 years ago. I have had it much longer than that but my doctor told me that being pregnant helped to mask the disease. The first thing that you should do is to make sure that you have a good gastroenterologist. Mine is the best! I am certainly lucky! Three years ago my pain became so severe that I had to have surgery. When the surgeon spoke to me after surgery he told me that he didn't even know how I was alive because my intestines were so scarred. Since my surgery I have had very few problems with the disease. I watch my diet and try to eat very healthy foods. I will probably take medication for the rest of my life. I also make sure that I see my gastro doctor every year. He has told me that I have a 1 in 3 chance that my disease will never return, a 1 in 3 chance that it will return but I'll be able to tolerate it, or a 1 in 3 chance that it will come back and I will need surgery again. Good luck to you!

 
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Old 03-01-2004, 09:40 AM   #3
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twisten HB User
Re: crohns disease...? need info/please help.

Hi I was diagnosed with crohns 3 years ago. I had actually had problems since my teens but kept getting told it was in my head, ibs and so forth. I even had a fistula and they still missed it. Finally 2 years after the fistula they did a colonoscopy and found the crohns. I'm doing pretty good right now on the meds imuran and asacol. I can eat pretty much what I want although I have found tomato based sauces such as pasta sauce and pizza sauce really bother me so I try to avoid those. What were the problems you were having to require a colonoscopy?
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Crohn's disease, scoliosis, chronic myofascial pain, migraines, Osteoporosis, Trigeminal Neuralgia.

 
Old 07-12-2007, 07:42 PM   #4
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Smile Re: crohns disease...? need info/please help.

Quote:
Originally Posted by krazyboy_w View Post
Hi everyone--love the boards, I always receive great feedback. I posted earlier this month about being nervouse about having a colonoscopy. I could not find the post so decided to post a new one. I had a colonoscopy and an upper GI done--they diagnosed me with Crohns disease. What is this exactly, what are the effects, dangers, treatment, etc. Anyone with this diagnosis, please respond. There is not much on the internet because I am researching, trust me. I need to know real opinions. I am only 27 and I thought that I was healthy. How will this effect my life? Thanks a bunch.

 
Old 07-12-2007, 07:47 PM   #5
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Re: crohns disease...? need info/please help.

Sorry to hear about the Crohns I was diagnosed about 8 months gao and it really has been hard on me and my family. I refused for many years to have a colonoscopy done and when the pain got too severe they discovered I have had Crohns for a min. of 5 years! So good for you for going! You should check out the Crohns and colitis foundation CCFA. They have a lot of information. You should also find out where your Crohns is asthis is very important in deciding treatment options and what to expect( Mine is in the terminal illeum) Remicade was great for 3 months but what most Docs dont tell you and I found very litle information on the net was that it can possibly casue scarring or strictures making surgery inevitable! (I was just out of the hospital last week for severe pains)Anyway hope this helps.It is also very important t have a good realtionship with your doc and ask a lot of questions becase ther are a lot of meds you can take. Oh and stay away from the Prednisone if you can . My experience was a TOTAL nightmare. Good luck!

 
Old 07-13-2007, 01:43 PM   #6
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country2001gal HB User
Re: crohns disease...? need info/please help.

Sorry to hear about you being diagnosed with crohns disease. I was diagnosed about 7 months ago. I have been dealing with it for almost 13 years. All of the doctors thought it was from a bowel reconstruction surgery that i had from a car accident so they figured it was adhesions. I went through test after test and they ended up saying it was my gallbladder so they took that out, then they said it was my appendix so they took that out. Then all the other tests i had done showed nothing wrong, but i was going to the restroom over 20 times each day. Every doctor said it was probably my nerves and they said i was too young to have any major problems with my bowels. I am only 24 now. Finally in December i changed doctors and he referred me to a GI doctor who believed me and wanted to help. They did an upper GI series with small bowel follow through and when i got the results they said i definately have crohns and that my intestines were very abnormal. I had a colonoscopy done and he said i definately have crohns and i also had polyps that were removed and benign.

They started me on Asacol and it worked great, but the only problem was i could not remember to take it. Taking 2 pills 3 times a day is hard when you are busy all the time. So a couple of weeks ago they started me on Lialda which is a very new med just like Asacol but you only take it once a day. So far its not working, but my dr said we could increase if needed.

Anyway the major problem that i have is that i have to make sure i can get to a bathroom asap if needed. It does change your life. Its hard to work when your stomach hurts so bad and when you have to keep running to the restroom.

If you have any specific questions i can help you with let me know bec i have been dealing with this for almost 13 years now.

Good luck!!!

 
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