Diagnosis: Chron's disease

[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~

[uk elephant]

I switched to non-cyclical pills about a year ago and found it a huge relief. I find that it takes away the extreme monthly fluctuations letting me regulate the drugs better.

[eclectic]

LBTC

You and your diagnosis have been in my thoughts. After years of misdiagnosis and too many intestinal surgeries my BIL was finally diagnosed correctly as having Crohn's along with my nephew.

I have seen firsthand how difficult a disease it can be to live with but also how it can be managed successfully for the most part and people can still live active and fulfilling lives.

My thoughts and prayers are w/ you as you learn how to manage your body and life in a new way.

[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?

[LBTC]

LBTC

You and your diagnosis have been in my thoughts. After years of misdiagnosis and too many intestinal surgeries my BIL was finally diagnosed correctly as having Crohn's along with my nephew.

I have seen firsthand how difficult a disease it can be to live with but also how it can be managed successfully for the most part and people can still live active and fulfilling lives.

My thoughts and prayers are w/ you as you learn how to manage your body and life in a new way.

Thank you, Eclectic!

So far, so good! The drugs really help - since I started them I've definitely had more good days than bad! It will take time to understand what I can and can't do and eat; and to learn if these things are all the time, or just sometimes. But I'm up for the challenge and thinking about the race(s) I want to do this year.

How are your BIL and nephew doing? How long since they were diagnosed?

Hugs and butterflies,
~T~

[pyxichick]

LBTC,

Sorry to hear about your diagnosis. It's hard to hear that you've got a disease that you will always have to live with. But if you find the right medication, and identify the foods you can't eat, you will be just fine.

It definitely puts you in tune with your body, if you weren't already. And even without a food diary, you will gradually get to know which things will hurt you and which are okay to eat. When I first got diagnosed with colitis, I went for months without eating certain things that I suspected may be bad. This was during an active flare up, so it was pretty easy to not want to eat anything, but in the end it was a good experiment, because now I know what's okay for me and what is going to be problematic.

And it's different for everyone. My sister has crohns, and she can't have coffee, but beer is okay. I'm just the opposite, coffee is fine, but carbonation is terrible on my system.

Even when I'm in remission, there are certain foods that will give me a gut ache. Not cause a flare-up, but just great discomfort.

I hope you find what works for you soon! Definitely stay active, I'm sure that it helps.

Take care,
kate

[Aggie_Ama]

Thank you, Eclectic!

So far, so good! The drugs really help - since I started them I've definitely had more good days than bad! It will take time to understand what I can and can't do and eat; and to learn if these things are all the time, or just sometimes. But I'm up for the challenge and thinking about the race(s) I want to do this year.

How are your BIL and nephew doing? How long since they were diagnosed?

Hugs and butterflies,
~T~

T- I was thinking of you this week. How are you feeling?

One thing that made me think of you was my DH. We saw a dietician this week and he is currently keeping a food journal. His Crohn's led to a fairly severe amount of inflammation in the Ileum and it seems the Remicade IV therapy is helping. However, he is still experiencing pain. The dietician is hoping after two weeks to see a pattern, if not he will just keep going. Her big suggestion for him right now: cut down carbonated/caffeinated beverages.

Since you mentioned figuring out your trigger foods, I thought this might be something you should do. You may already be doing it. ((hugs)) Hope the medicine is still helping!

[Duck on Wheels]

carbonated => gas, which can give pain, especially if you're already a bit tender. Same goes for other foods that cause gas (cabbage, peas, beans)
caffeine => dehydrates, which is tough on your mucous membranes when they're already struggling.
And then there are mechanical irritant foods (e.g. nuts) and foods that bulk up make your intestines work harder, which again can give pain. So try going low fibre for a while to go easy on those inflamed intestines.

The good news is, that once the meds have got his guts in remission, he can try tasting his favorite foods again. I've been staying low fibre for months now, but lately I'm ok with the odd tangerine or handful of nuts or a latte at lunch or ... whatever. I just don't overdo it. Yet.

[LBTC]

Thanks for asking, Amanda and for the encouragement, everyone!

It is rather a roller coaster, but who wants a level ride? So far I've discovered that I'm really not good at keeping a food diary, but I am pretty good at putting my meals I eat at work in 1/2 cup containers - I have about three of those plus a banana and some other healthy snacks during the day. Still need to eat every 2-3 hours, but I'm doing pretty well at small portions. (except over the holidays, but that's another story!)

A co-worker who has colitis told me his story just the other day and highly recommended a naturopath in Kelowna. My CW told me that he only saw the NP to get his wife to stop nagging him, and he was totally sceptical and refused to tell him about any food allergies he already knew about. The NP used electrodermal testing to determine my CW's food sensitivities and was dead on accurate. The scale even told him which foods are never, which are almost never, which are seldom and which are occasional once you're back to better health. Not only did the colitis flare he was in at the time, that drugs were not treating, clear, but his colitis seems to have stayed in remission for 5 years (maybe it's longer...). But the cool thing is, this also eliminated his eczema, and virtually eliminated his asthma! Now, looking at this guy I would never have guessed that he has one single health problem...he's a strapping cowboy working in a forest industry job. So there ya go.

I have an appointment with the NP on Jan 29. I've asked for the same testing at the same time as the initial consult since I have to take the morning off work and drive to the next city to see him. I'd like to think I can avoid the elimination diet and food reintroduction by seeing this guy, although I'm thinking I need to try it a little bit.

Have any of you done or heard of electrodermal food testing?

If I'm going to eliminate only one food this coming week, what should it be?

As far as staying active - we are going snowshoeing later today, I rode the bike on the trainer twice this week, the kickboxing place opens on Monday, so I'll check that out. I have pushed through the fatigue a bit, but realize I need to not overdo that....tricky balance, but I'll get the hang of it!

Hugs and butterflies,
~T~