Diagnosis: Chron's disease

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~

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

let's start here :o

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

Quote:

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Originally Posted by 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~

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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

{{{{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. :(

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

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.

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!

((((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.

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 :eek: 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~

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.

Quote:

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Originally Posted by 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.

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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.:o

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!)

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. :)

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.

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~

Quote:

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Originally Posted by LBTC

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....

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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.

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 :p).

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.

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.

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~

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.

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.

Quote:

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Originally Posted by 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.

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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!

So did the tastier aloe juice work at all?

Quote:

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Originally Posted by 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.

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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~

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

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Originally Posted by LBTC

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~

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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!

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.

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~