Diagnosis: Chron's disease

[uk elephant]

Sorry you had to join the club! But its definitely better knowing what is causing your symptoms. Not you can work on finding ways of controlling them.

There are a few of us on the board who have Crohn's, me and my mom (Duck on Wheels) included. Good luck with all your tests and finding the right combination of drugs. It's not pleasant, but well worth it. For now, just read up on things and pay attention to how your body feels so you know what to ask/tell the specialist. Often things that seem completely unrelated can be explained by Crohn's or the medication so it is well worth brining it up when you see the doc. For instance both mom and I have problems with our joints when the disease is active.

There is a lot of good information on the internet and a good place to start is the National Association for Crohn's and Colitis (www.nacc.org.uk) and the Crohn's and Colitis Foundation of America (www.ccfa.org).

As for food/diet, you will just have to experiment. Someone else mentioned giving up wheat, but I've never had to. I have trouble with red meat which I now rarely eat. And when the disease is active, I cut back on dairy (although that's a bit difficult as I'm too fond of cheese and creamy stuff). I have also found that eating small portions often is far better than a couple of big meals a day. And things that produce a lot of gas is best avoided at most times. But which foods cause problems is very individual when it comes to Crohn's so you will just have to pay attention to how you feel and find what works for you.

Good luck! If if you want to chat, feel free to send me a PM!

[Aggie_Ama]

((((LBTC)))

As you can see from the link Trek posted, my husband was recently diagnosed with Crohn's. I bawled my eyes out because I only knew of the bad parts of Crohn's. He was much more positive and said "I will play with the hand I was dealt."

No one can give him a diet to follow. I have heard no high fiber, stay away from roughage, no skins. So far the only thing that has aggrevated it is eating too much spicy food. We are in the southwest, that is hard to avoid. He was also told to stay away from ibuprofen. We are planning to find a dietician for him very soon, that was recommended by his doctors.

DH has had 3 treatments of Remicade and has been on oral steriods for a couple months. They are now taking him off the steriods. The remicade is really helping and his gastro enterologist is excited to have kept him off the operating table.

Just stay positive and remember everyone is different. There are a lot of people who will tell you about the worst the disease can be, but it is manageable. If you want to PM me, feel free. I have a far different chronic disease (neurological) but I remember what is was like to be diagnosed.

[LBTC]

You girls are great! I appreciate all of your thoughts, information and offers for PM's which I still may take you up on.

I'm feeling very fortunate, actually. Now that I have read some of the severe cases of Crohn's that are out there, it seems like I listened to my body well, pushed the medical system hard, and managed to get a diagnosis when I'm not in a critical state that requires surgery. At least that's what I'll keep telling myself unless the scopes on Feb 28 tell a different story.

I actually think I only got a diagnosis because of cycling! Well, I used to be very active, a very strong mountain biker, but when this flared up in July it got me off my bike. The nausea and bloating were plenty to deal with, but whenever I did anything strenuous I would be overcome with fatigue. I don't know if I'm just past that flare up, or if my reduced level of activity is the reason, but lately I feel kind of okay. I've still been afraid to kick up the exercise too much because I hate that feeling of fatigue. But I do wonder if I were a person that is only as active as I am right now, with the reasonably good healthy diet that I've always had, that I would not have noticed it just yet and it would have taken years for the symptoms to be serious enough for me to seek a diagnosis. Again, it makes me feel good to think this is true. My activity level is currently not bad - 1/2 hour of yoga in the morning, 2.5km walking commute on work days, 2.5km walk home on most days, light weights a couple of times a week. I'm going to give the drugs I'm on - very lightweight stuff called Pentasa - a chance to work for another few days, then I might try the free cardio kick boxing class that's just down the road from work. I know it's not nearly what I used to do, but I know I should not compare myself to what I once was. (also noted that today while trying on Christmas party dresses at the consignment store. This is definitely not racer body).

Anyway, I've learned long ago that I can't eat game meat, not even deer, although I'd like to try bison; that I can't tolerate onions, or ginger, or crab or lobster. It seems like I can't eat raw vegetables by themselves, but if I nibble on a veggie snack and have a few nuts at the same time it seems to sit better. Odd combinations like that.

Well, I've got to stop downtown today for a suitable food diary. I'm finally going to write it all down and I hope I don't scare myself too much. I'll try to see a nutritionist / dietition within a few weeks if I can, to help define my best eating solutions.

Interesting that I've had more than one person tell me that this is often triggered or caused by emotions that are suppressed (can anyone here say catholic upbringing?), and that meditation and other such paths can be hugely helpful. That and aloe vera juice.

I'll let you know what I find out as I progress. Now it's time to get back to the rest of my day. My poor puppies have lice and we're taking them to the dog wash now. 'gonna wash those critters right outta their hair! (yes, they are on interceptor too).

Hugs and butterflies, ladies!

~T~

[uk elephant]

I have also heard the suggestion of aloe vera juice. Sounds like a good idea until you actually try it (insert green smiley face). Mom brought a bottle home for me soon after I was first diagnosed. Thick gloopy green goo which smelled and tasted much worse than it looked.

A more recent suggestion is omega-3 supplements. Unfortunately you need to take quite large quantities for it to help which causes the unpleasant side effect of your skin smelling fishy. New enteric coated preparations are in the research stages so there is still hope. I've done quite a bit of research on this for a project at work recently and it's been very interesting.

As for you experience of fatigue, I have the same problem. I was lucky to be diagnosed early because my mom was unlucky enough to be diagnosed late. I went to see our family doctor with stomach pains and he immediately put me through all the needed tests and got a diagnosis. But even when the disease seems fairly well controlled, I feel tired quite often. I always feel guilty about being "lazy", but I'm getting better at listening to my body and letting myself collapse when I need to. I find that excercise helps, when I'm feeling up for it. And cycling definitely works better than many other forms of excercise.

Good luck finding what works for you, and keep posting questions when they come up. Someone else will certainly have had similar questions before and found an answer.

[Brandi]

I have also heard the suggestion of aloe vera juice. Sounds like a good idea until you actually try it (insert green smiley face). Mom brought a bottle home for me soon after I was first diagnosed. Thick gloopy green goo which smelled and tasted much worse than it looked.

A more recent suggestion is omega-3 supplements. Unfortunately you need to take quite large quantities for it to help which causes the unpleasant side effect of your skin smelling fishy. New enteric coated preparations are in the research stages so there is still hope. I've done quite a bit of research on this for a project at work recently and it's been very interesting.

As for you experience of fatigue, I have the same problem. I was lucky to be diagnosed early because my mom was unlucky enough to be diagnosed late. I went to see our family doctor with stomach pains and he immediately put me through all the needed tests and got a diagnosis. But even when the disease seems fairly well controlled, I feel tired quite often. I always feel guilty about being "lazy", but I'm getting better at listening to my body and letting myself collapse when I need to. I find that excercise helps, when I'm feeling up for it. And cycling definitely works better than many other forms of excercise.

Good luck finding what works for you, and keep posting questions when they come up. Someone else will certainly have had similar questions before and found an answer.

There are much better tasting Aloe juices out there. At least there are in the states. When i was suffering with Gurd I had a very tasty Aloe drink. Don't give up!

[Duck on Wheels]

So did the tastier aloe juice work at all?