Diagnosis: Chron's disease

[Duck on Wheels]

I found in my own case that a reaction to wheat was secondary to the Crohn's. When my Crohn's was waaaaay out of control, I'd get really sick if I ate even the teensiest bit of gluten or dairy (aside from yoghurt). The joint pain also seems to be a secondary symptom of a flare-up. It could be so bad in my hips that I had to stiff-arm myself up off my feet using the backs of chairs in order to turn around while walking through the house. The solution was usually to put on warm woolies and windproofs, then go out and walk til I was thoroughly warmed up. Only once was that not enough and I had to resort to a vicodin. ... And of course, I'd check with my doctor as to whether I needed a round of steroid treatment to get the Crohn's knocked back under control.

Once the Crohn's is back under control I can eat most anything ... only now I have scarring here and there through my small intestine so I have to go easy on fiber, e.g raw fruit and veg., especially stringy ones like most citrus (mandarin oranges are OK if I only eat one or two a week), also red meat, and things that produce gas (cabbage, beans, carbonated beverages). But as long as I eat small portions and avoid "culpit" foods but for even smaller portions on rare occasions, I can stay free of pain and nausea.

I can also DO most anything. But yes, there is the tiredness. There's less of that when I'm on steroids, but they entail other problems (hair loss, weight gain, thinning of skin and of blood vessel walls). I'm hoping that now I'm off steroids, I'll slowly be able to build myself up to where I'm not feeling so tired. Unfortunately I've had a work schedule the past half year that would have left me exhausted even on steroids, but we'll see if I can get less work and more training into my schedule Spring term.

As for suppressed emotions ... Weeeell, I doubt that can be proven. After all, who doesn't have suppressed emotions? There may be an emotional side to this, since stress hormones are involved. But oddly enough, some of the meds that work ARE stress hormones. So the hypotheses are out there, but the verdict isn't in.

All in all, the message from me as a "Crohnie crony" is that this disease is to live with if you just learn what your body needs in terms of food, rest, exercize and meds. In the words of J. Golden Kimball, "The secret of a long life is to get yourself an incurable disease ... and take care of it." Sounds to me like you're off to a good start in taking notes on what your body seems to do well on. Keep up the good work, and keep up your optimism.

[Aggie_Ama]

LBTC- From what I can tell with DH and talking to people who have Crohn's, stress will be one of your worst enemies.

DH has always had stomach problems, but this summer he was working in the worst job ever. He quit without giving notice (not like him) and not having a new job (not like him). Within a couple weeks he was in terrible shape and before the end of the month he was in the hospital with a major flare up. He tends to internalize his stress instead of talking about it. I don't know if that is related, but others I know with Crohn's admit to being the same way.

[LBTC]

Aggie, I can see that stress could be a factor. It's been a heckuva year! New city, new job, new house, DH in school, less money, not much of a social network yet....
This flare up started after we'd actually settled in. We'd spent 4 months apart, I bunked at various co-worker's houses until we could move into our place, and DH continued to live and work and complete the renovations on the old house. But when this happened....we'd been together for a few weeks and things were going smoothly. I might be a delayed reaction kind of person.

Can any of the crohnie cronies tell me how long a flare up can last? I'm wondering if previous issues in years past have been crohn's the whole time....

I had one last September or October that was the worst "stomach flu" I have ever had. I spent 3 days searching the internet trying to determine if I should go to ER....It took about a week to recover, and another week to gain energy back and feel a bit like a normal human...It happened the day that DH was out of town to see the specialist that was confirming that he did not have testicular cancer. Yes. Stress.

I'm a worrier. Always have been. The job I'm in now has more responsibility than I have ever had before. I've just received the materials to take a business law course by correspondence - I haven't taken a course in the last 10 years, and I've never taken one by correspondence. My work has asked me to take it, and they are paying for it.

I am an absolutely stubborn person, determined that I can do everything that I set my mind to, that I won't let anything stop me if I want it bad enough; but I definitely have days when I wonder if I can get it all done....if I can do my job, and keep my house in order, and care for my dogs and cats, and and and.

And I'm not trying to be one of those superwomen who decorates her house for every occasion, has the perfect body and cooks a gourmet meal for DH each night....but I do spend time wondering how they do it?

I think it's time to do some yoga. Keep the suggestions coming. My mystery has been replaced with a riddle. It's going to take time for me to figure this all out. I'm glad I'm not alone!

Hugs and butterflies,
~T~

[Bruno28]

Can any of the crohnie cronies tell me how long a flare up can last? I'm wondering if previous issues in years past have been crohn's the whole time....

How long is a piece of string? Hopefully you'll get a meds regime that will bring flare ups under control. I'm afraid it's a bit of an unpredictable disease but the best thing you can do is listen to your body and get to know the signs and symptoms. And if your body tells you to rest, rest or you'll pay for it. I've had Crohn's for about twenty years and probably for sometime before that - it can take ages to be diagnosed. My symptoms were put down to stress til a smart GP sent me to a specialist.

In my experience stress is a factor. It doesn't cause the disease and I don't think it makes the underlying disease worse but it can precipitate a flare up and make things seem worse, in my opinion.

I recognise the feeling of being relieved when you got a definite diagnosis. Plus it means you can actually research it. As others have said there's good info on the web.

This UK site is good -

http://www.nacc.org.uk/content/home.asp

You may have to be persistent with your docs until you get a treatment regime that suits you, but keep going. Mine is reasonably well controlled by drugs with only occasional flare ups. Because of fatigue issues you are best to try and eat a normal diet unless you can identify foods that are causing problems - for me onions, fatty foods and cream are the main culprits. But I still eat them from time to time - I just plan ahead!

Good luck and take care.

[SadieKate]

Boy, LBTC, you two have certainly had more than your share of issues this year. I think relief is a very normal feeling with any diagnosis. It's a milestone that lets you make decisions about the future and make constructive changes - less whirling in circles. Always a good thing in my book.

Just going to offer my 2 cents about stress. All diseases and disorders can be reactive to stress. We're a whole integrated body, mind over matter and all that jazz, but immune system disorders are especially senstive to it. You've heard it before. When I get wound up over things, the buzzing in my face starts. It's a very minor but effective reminder that "Hey, stupid, you've got MS. Let it go." Yellow has a great handle signal that she waves in the air at me when I forget (what are friends for ).

I've became much more active at not being reactive. Dealing with the things I can control and walking away from the things I can't -- even if that means limited contact with family members. I weigh my options before saying yes to others' requests and focus on what I need to do for fitness and proper rest. My one and only flare last winter made me realize that tons of little stressor can trigger an event -- it isn't just the big stuff.

I know there are lots of people out there with Crohn's leading very active and normal lives. But like MS, we tend to hear only about the extreme cases. Stay positive and look for what works for you -- and say no to the guilt-imposed yes. Your main obligation is to you.

[Duck on Wheels]

Speaking of stress hormones ... You may also find that your Crohns flares in synch with your reproductive hormone cycle. For me, I'd start to flare each month a day or two ahead of my period, have to up the drug doses, and then could gradually get the doses down again a week or so after my period was over. This makes sense when you think about it. The cycle has among its many functions the one of making sure you have an infection-free environment in case you start a pregnancy next month, then backing off from "overkill" in case you start a pregnancy this month(that little foreign body you want to keep in there). And since no bodily attribute has only one function ... the reproductive hormone cycle is also stress-related (as in the occasional skipped cycle due to stress, or the mood swings that have some of us edgy that same day or two ahead, right?). Soooo, if this does prove to be a pattern for you too (as for most female Crohnies I've known between 15 and 50) and if you're taking an oral contraceptive, you might want to try going non-cyclical and see if that helps.

[LBTC]

Hi, Duck

That's very interesting. I've been on a non-cycle BC for a few years now. I love the no downtime thing. I had no idea it might actually help something like this, too! Good news.

Thanks for the tip!

Hugs and butterflies,
~T~