Crohn's Disease

[disneyfreak75]

Anyone else here have Crohn's Disease? I was diagnosed about 2 1/2 years. suffered for almost a year before it was diagnosed and have been learning more and more about it but am always open to sharing more, discussions, etc....

 

[TaraPA]

Hey there! I don't have Crohn's, but Colitis. I hear Crohn's is much more severe than colitis, sorry that you're suffering. I just went through a colon transit study 2 weeks ago (no call from the doc so I'm assuming all went well) and have my 4th colonoscopy next Friday. Do you manage your Crohn's with medication, diet, or both?

 

[disneyfreak75]

Well, I wouldn't say it is more severe but it is uncurable at this time. That being said that only way to cure Colitis is by removing portions of the colon, which isn't a great option either.

I hope your colonoscopy goes well. i had 4 in a year and I feel for anyone having to get this done....yuck. It wasn't the test that I disliked but rather the prep.

I am really bad with my diet and having a hubby who eats poorly doesn't help so at this time it is controlled with medications. Salofalk and Imuran.

Hope all goes well

 

[oliviansmom17]

I have Crohn's- and I was diagnosed at about the same time, DisneyFreak. Just before Christmas- what a gift! Too bad I can't return it!
I managed with a modified diet, Remicade, Imuran and Pentasa for awhile but eventually had to have an ileocecectomy last June to remove a stricture. I was hospitalized for about a week and it took some time to recover, but it happened. The upside to it was that I was able to stop the Remicade infusions and now I just take Imuran and Pentasa.
I need to get back to the modified diet again. I avoid milk protein and red meat right now as well as fried/high fat foods, although I definitely break that rule every once in awhile. I've learned what and how long I can "push it" before my body pushes back. If I have something important coming up: a trip or occasion, I just watch what I eat for a week beforehand and that works for me. I mean, I have abdominal pain daily- sometimes it interferes with my day, sometimes it doesn't. I also have gastroparesis, (my stomach doesn't empty out fast enough) and that gives me more pain than the Crohn's! Totally annoying feeling stuffed all the time! But they gave me Reglan to help that out and it works.
As I re-read this I look like a hot mess! But when it's just a part of your life, it assimilates and you work with it. It could be worse- if I keep that in perspective, it doesn't get on top of me. It definitely wears me down at times and I break and have a good cry....but I have an 8 year old with serious health issues so I can't take too much time to feel bad for myself, ya know?
I hope just knowing your not alone is a consolation- I'm here and always willing to talk! You can always PM me if you'd like...

 

[chip91]

I don't but my 13 yr old dsil has it, diagnosed at 8 yrs old..she said she doesn't really remember what it feels like to not have a stomach ache, the poor honey, it's a HORRIBLE disease. Last March it landed her 3 weeks in a peds unit, which ended in no choice but Ramicade infusions (not cheap!!!) She's also been on/off Prednizone (sp?) this entire time depending on her sed rates... the worst her sed rate has been over 200 when she was hospitalized last year, (she had ulcers lining her entire digestive track) the lowest it's been in the past 5 years I think 25???

Let me know if you have any ?'s..she does her best to control hers with diet, giving up things that she knows makes her tummy feel yucky
(chocolate milk/salad are two things)

Best of luck to you, PM if I can answer any other ?'s for you
Chip