Diagnosis: Chron's disease

[LBTC]

Hi, Ladies!

Thank you again for all you've done for me these last 5 months! You've offered support, advice, comfort and encouragement....and not once told me to get over myself and shut up already! Thank you!

Today the specialist told me I have Chron's disease. I was afraid of this, but I am curiously more relieved than upset because this is, at least, an answer. I'm still scheduled for the scope from both ends, but that's not until Feb 28. I hope that the mild drugs he has prescribed, and the research I can do into diet and exercise, will provide a lot of relief and allow me the chance to regain my health and fitness!

In the meantime, if any of you know much about Chron's, from personal experience of your own or someone close, your thoughts, ideas and tips will be most appreciated!

Hugs and butterflies to you all!
~T~

[Trek420]

{({({({({ LBTC)))}}}}}

let's start here

http://forums.teamestrogen.com/showt...ghlight=chrons

[kelownagirl]

Hi, Ladies!

Thank you again for all you've done for me these last 5 months! You've offered support, advice, comfort and encouragement....and not once told me to get over myself and shut up already! Thank you!

Today the specialist told me I have Chron's disease. I was afraid of this, but I am curiously more relieved than upset because this is, at least, an answer. I'm still scheduled for the scope from both ends, but that's not until Feb 28. I hope that the mild drugs he has prescribed, and the research I can do into diet and exercise, will provide a lot of relief and allow me the chance to regain my health and fitness!

In the meantime, if any of you know much about Chron's, from personal experience of your own or someone close, your thoughts, ideas and tips will be most appreciated!

Hugs and butterflies to you all!
~T~

Ugh, sorry you're going thru this LBTC. Don't have any info or advice but can definitely offer hugs. There's lots of info out there on the net. No doubt Trek's link will be a good starting point.

barb

[Bikingmomof3]

{{{{LBTC}}}}

It is weird to be relieved, is it not? I was the same way when I found out I had a stroke and partial paralysis. I was relieved to have a diagnosis. Now I am in the massive tesing phase and medication phase, as you are entering. We have different diagnosises, but should you ever want to talk, PM me. You may go through a lot of emopions. I know I still do.

[Jo-n-NY]

LBTC, I am sending butterflies and hugs back to you. Although I have heard of the disease, I do not have any info to offer you. I glad to hear this brings you some relief. With your upbeat attitude and do as the dr's say, I am know you will be just fine.

~ JoAnn

[mimitabby]

This is certainly not the end of the world, you just have to avoid ahem...
wheat. which is EVERYWHERE.
I know of two folks that have it. They become creative cooks.

and they get healthy when they stay away from the offending foods.

[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!

[KnottedYet]

This is certainly not the end of the world, you just have to avoid ahem...
wheat. which is EVERYWHERE.
I know of two folks that have it. They become creative cooks.

and they get healthy when they stay away from the offending foods.

Mimi- do they have Celiac or Crohn's?
I do the Celiac fandango, which is the dance to avoid wheat, oats, barley, and rye. Not too hard to do, once you figure it out; but I'm a bad Celiacker, in that I still drink the occaisional beer. (and pay for it later!) Tell your wheat-avoiding friends that there are at least 2 wheat-free restaurants in my end of Seattle: The Flying Apron (U District) and the DaVinci Cafe (Greenwood).

oops. sorry for the thread hijack.

LBTC - I dunno about repressed emotions, but I know my gut goes absolutely nuts when I am stressed either physically or emotionally. Whether I've eaten wheat or not. (Caught a cold? Whoops, here goes the Celiac. Broke up with DPITA? Whoops, Celiac city!)

[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.

[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~