The diagnosis is in

[glass]

I also have Crohn's Disease, but it sounds like yours is more severe than mine (mine is completely controlled with just Pentasa, touch wood). Still, I remember the attacks I did have before I got it under control and I feel for you. I don't want to go through that again!

The funny thing is, my doctors never mentioned a 'safe diet'. There were basically only two rules: Don't smoke, and don't take NSAIDs (apart from Pentasa).

Anyway, best of luck; hope you get it under control soon!



glass.

 

[Ghostwind]

I called the doctor last week and they moved my follow-up appt to tomorow instead of next week. I think I have it narrowed down to either the Entocort or Pentasa as the culprit since I tend to feel worse after I take them.

 

[Alenda]

Sorry to hear about this, Ghostwind. I've got a history of this stuff running through my family. My brother was diagnosed with Ulcerative Colitis at 19 and it took about 6-8 months to get it under control. He lost a ton of weight, because everything he ate went through him in a manner of minutes. The steroids he was on to combat the condition made him irritable and cranky. However, once he got the flare-ups under control, he was able to switch meds and now he's back to his old self. He avoids fiber and greasy foods as much as possible and it seems to be working for him. Now he's pretty much like any other well-adjusted guy in his 20's who loves comic books and painting Warhammer miniatures.

My cousin has Crohn's disease which was misdiagnosed for nearly 2 decades (doctors said he was lactose intolerant). By the time the doctors realized that it was Crohn's, the condition was too far gone. He had to get his colon removed. In spite of this, he's actually looking a lot healthier nowadays than he did prior to the operation.

I guess what I'm trying to say is that the treatments work, and that you are SO lucky that your doctors correctly diagnosed you from the beginning!

Best of luck on your recovery!

 

[Treebore]

A little known fact about Crohn's: A good eye doctor can do a prelimanary diagnosis by just looking into your eyes. That is how my aunt became aware she has Crohn's. I don't remember exactly what it is they see/look for that clues them in, though.

 

[Teneb]

I called the doctor last week and they moved my follow-up appt to tomorow instead of next week. I think I have it narrowed down to either the Entocort or Pentasa as the culprit since I tend to feel worse after I take them.

I was on Pentasa in the beginning, and was not thrilled with it. It didn't seem to help overmuch and made me feel lousy. I've been on Azathioprine (Imuran) for the last few years and I'm doing awesome.

It did require a surgery last year (I presume to remove the damage the Pentasa allowed), but since then I've been pretty much awesome. The month after the surgery I literally gained a pound a day for a month.

Treebore: I can tell you right now, get rid of bread and all other grain based foods, except JAPANESE rice. Also get rid of milk. Cheeses may be OK, probably yogurt too, but straight milk your just begging for it.

I've got mixed feelings about this advice. When I get a flare, I definitely avoid dairy as I get a transient lactose intolerance. However, when things are calm I can handle dairy without problem. The same goes for beef and pork (in moderation). I think the bottom line is that you should keep a food diary and note how you feel each day. That way you can identify things that trigger flares. I'd hate for you to cut out things you enjoy eating if you don't have to...again, moderation is oftentimes the key.

Keep your chin up, things will improve.

 

[Treebore]

I'm telling him to do that during flare ups. In the long run staying away from wheat may be a good thing. Maybe even milk

For all the doctors know Crohn's could be caused by a long term alergic reaction to wheat/ cows milk/whatever. They think they know what is going on, but they are far from positive.
So any "cause" is possible right now, and may be very well why they haven't figured out a definitive cause. There may be several.

 

[Ghostwind]

Well, the doctor increased my Pentasa dosage to 1500 mg a day plus gave me Zelnorm to take at night. I've already been told that if that doesn't work, they will bump the Pentasa again since most of their Crohn's patients take 2000 mg a day, some more. So far, this has not been a good week by any means. I've been hurting all over and feeling like crap. But she gave me refills on everything including the darvocett and percocet so that's a good thing since I was getting quite low.

Treebore, I don't drink milk since I'm allergic to it, so staying away from it is a given except when it is used in cooking. I just can't sit down and drink a glass without having problems. I've also been steering away from consuming a lot of wheat at a single time. Mostly, it's just getting my body to stop flaring up so much in the evenings that's been the challenge. Maybe the increase in meds will help.

 

[Treebore]

Cool. Right now it is more important to sacrifice things you like to eat until your under control. Much better than sacrificing parts of your digestive tract. Which something in your diet may very well be contributing to any difficulties in controlling your flare up. So much better to limit your diet as much as necessary, just in case it is a food sensitivity keeping your flare up "hot".

The drugs suck too. Take these to control things and feel like crap. Take these to make you feel less crappy. Big roller coaster ride.

 

[Ghostwind]

And I hate roller coasters too...

 

[Ghostwind]

The change in medications along with the increased dosage of Zelnorm seems to be helping. The last couple of days have been a lot better.