08-27-2007, 12:41 PM   #1
Coffee and Crohn's

Hello again, group,

Like most of us, I've been having my ups and downs with this latest flare of Crohn's. My doc recently put me on Lomotil to control the diarrhea. It seemed to be working great for a few days. Then I did something really stupid. I drank a big cup of decaf coffee. I was under the impression (wrong, I guess) that decaf was OK. Well, despite the Lomotil, I very soon came down with the Big D, gas and all the rest. Has anyone else experienced this effect with decaf coffee? I knew that caffeine was bad, but didn't know decaf could knock me for a loop, too. I'm a real coffee drinker, and giving it up will be hard, but I'll do anything to get this monster back in its cage.

08-27-2007, 12:59 PM   #2
D Bergy
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Join Date: Apr 2007
I had lots of trouble with coffee also. I had a hard time not drinking it at all but had to give it up completely until I had surgery and was somewhat healed.

Now I drink maybe two cups a day. I used to drink pots of coffee in a day. Low acid coffee is much easier to tolerate for me. It was not the caffeine that bothered me so much but the acid. But mostly I substitute my coffee with Green Tea. The tea also has caffeine but only about half as much and it does not bother me at all. I still like coffee better but tea is OK.

Good Luck

Dan Bergman
08-27-2007, 02:45 PM   #3
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Coffee KILLS me - even decaf. I thought once or twice that someone slipped me regular instead of decaf, and that was what caused my symptoms, but then I got sick even when I made my own, so I know it is the coffee itself. Also, I've heard that there's a small amount of caffeine even in decaf, so that could contribute to it, along with the high acidity (tomatoes also do me in, and those are highly acidic, so I know I don't handle acids too well). Sorry that coffee may be off the list, at least for now! (Though I might have to seek out that "low-acid" decaf coffee for a try...we'll see). Best of luck!
08-27-2007, 07:40 PM   #4
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Hey Chet.. Couple of things. Do you take your coffee black? If not, try a small cup of decaf (pref made via the Swiss method) black, no dairy products or substitutes, and no sugar or artificial sweeteners. If that still gives you the big D, then it looks like you ARE coffee sensitive, and have my sympathies. I can't comment on the acid level of the coffee, or the ph levels of the water you make it with. I have read, in a very old medical text, that decaf typically has (or had at the time the text came out) 1/2 the caffeine of regular. Caffiene is a stimulant, and the effect of stimulants may result in the big D. Perhaps a coffee substitute???

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08-28-2007, 03:08 AM   #5
Thanks for those replies. They sort of confirm what I was afraid of. I've been a coffee drinker for 40 years. Now this. Well, if I can get my Crohn's back into remission by kicking coffee, that'll be a small price to pay, as much as love my brew. Again, thanks.

08-28-2007, 08:39 AM   #6
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Ahhh, if only it were that simple. Avoiding trigger foods should minimize flares, but it won't 'cure' the disease. as a crude analogy, say you were like a lot of people who had allergies. you know, ragweed, pollen, pet dander.. Moving into a hypo allergenic area would alleviate the symptoms, but it isn't the same as a 'remission'.
A change of seasons, or a stray cat, can be enuff to bring it all back with a vengence.
08-28-2007, 12:50 PM   #7
Yeah, I guess I sort of knew that. My Crohn's didn't even give me a twinge for 15 years, until a couple of months ago. I guess that's a "remission," for want of a better word. I'm just glad I found this forum. Helps us support one another. Non-Crohnies don't understand, I think.

08-28-2007, 02:31 PM   #8
Sorry you are flaring and perhaps needing to give up coffee for a while. I love coffee and feel your pain.

I wanted to mention that when I give up coffee I switch to green tea. Green tea is supposed to have healing properties and it does not seem to irritate my gut, despite having caffeine.

Good luck to you!
08-28-2007, 07:52 PM   #9
coffee, decaf or not is really bad for me. Maybe once a month, when I am at a wedding or really craving an fancy iced mocha something, I will have some and sometimes it is ok and other times I really regret it. I also get migranes along with the big D after drinking coffee.
08-28-2007, 08:03 PM   #10
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If I had to give up my coffee I don't know what I'd do. I'd probably be like one of those smokers with bad lungs and a bad heart and drink it anyway. Crohn's has made me cut out everything I used to LOVE to eat like Doritos, Fritos, corn tortilla chips and salsa, corn (creamed, on the cob, plain, fried), popcorn, big salads, crunchy tacos, etc, etc. Coffee's still one of the simple pleasures I refuse to give up to this disease.
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08-28-2007, 11:13 PM   #11
DanSJVDavis, funny you should mention salads. My doc told me to eat a normal diet, and I eat salads all the time. Now, many years ago when I was first diagnosed with Crohn's, the doc I had then told me to avoid salads, uncooked fruits and veggies, other fiber, etc. Now, my present doc tells me, the drill is to eat a normal diet. The thinking along those lines has changed, he says. Have you heard about this? Anybody else?

09-02-2007, 03:58 PM   #12
First tea has a related compound in it, not caffeine, i think it is called theophiline. Furthermore tea has a bit of tannin which is a very mild antibiotic and astringent. If you use NON DAIRY CREAMER in your coffee and are sensitive to lactose you may want to stop using it. NOT because it has lactose in it but that people who are sensitive to lactose are OFTEN sensitive to caseinate as well, ?a milk protein?, which non dairy creamers are LOADED with.
09-02-2007, 06:23 PM   #13
Cara Fusinato
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Chester said:
My doc told me to eat a normal diet, and I eat salads all the time. Now, many years ago when I was first diagnosed with Crohn's, the doc I had then told me to avoid salads, uncooked fruits and veggies, other fiber, etc. Now, my present doc tells me, the drill is to eat a normal diet. The thinking along those lines has changed, he says.
It totally isn't true to just "go forth and eat as thou wishes." The better adage is "eat, drink, and keep a food journal." Only eat what doesn't bother you. If salads and veges don't bother you, than go for it! My gallbladder was removed a few years ago and things like salads especially and some vegetables don't digest at all. Since I have some strictures, that undigested junk is a bad, bad idea. Diet and this disease is so individual. I, for example, can eat anything dairy on the planet and it's just wondeful. Most people, no. Coffee? I can drink Starbuck's biggest and best, no problem. Many people, no.

Doctors really should say, "TRY to eat as normally as possible and if something seems to cause bowel ills, you MUST cut it out of the diet. The goal is to reduce pain and diarrhea as much as possible."
06-08-2013, 10:09 AM   #14
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I drink 3 cups of decaff and have no problem with it.
Was at gastro doc yesterday.
He said, "Don't listen to other people. Some can have dairy, some can't and so on. You are you and you'll figure out what you can have."

Made sense to me cause my brother eats greasy foods and they make me
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06-08-2013, 10:52 AM   #15
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Coffee is a big no-no for me. As bad as raw onions. And I don't say that lightly, I can pretty much eat must other things.

I don't think it is the caffeine (I have no problem with coke), it is very much the intensity and that coffee is made of burned beans. Having said that, I can drink a coffee in the morning, but I really don't want to. I have been "on" Earl Grey Tea, hot, black, with one sugar since I was 5 years old. Not gonna change now ;-).
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06-08-2013, 07:39 PM   #16
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Coffee aggravates my diarrhea and GERD but I can't give it up. I try to use a little less. I tried the grain coffee alternatives but they taste like tea and don't give me the fix I need.
06-09-2013, 12:11 AM   #17
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It is funny how all of us differ. I can handle coffee in quantity. I'm known as the cafeinomaniac by my close friends. It's 1-2-3 a day. I don't over do it but I'm really lucky and it does not cause me an issue except on an empty stomach where I can get a bit of burning and major growling from it.
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06-09-2013, 08:08 AM   #18
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Coffee bothers me, but I still drink it, just much less than I used to. Usually only have 1 cup per day. Can't do press coffee at all though.
06-10-2013, 11:14 AM   #19
The Real MC
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1) It depends on the brand. Certain brands of coffee work OK in my system; others don't.

2) Strong coffee triggers the big D.

3) based on 1 and 2, the only coffee I can enjoy is what I brew at home. I can control the brand and how strong it is. I have had too many episodes buying coffee at restaurants and coffee houses.

4) if you ever travel outside the US, try the coffee that isn't from Columbia. I found wonderful coffee in South Africa.
06-19-2013, 04:35 PM   #20
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I LOVE coffee so much. I used to drink two or three, sometimes four, shots of espresso before getting to work and then I would drink a pot of coffee at work. I was so sick with diarrhea, nausea, sometimes vomiting.

I gave it up on May 20th (so three weeks off!) and I feel MAGNIFICENT. While I still have minor symptoms, I don't run to the bathroom nearly as often nor do I have the constant nausea/vomiting. My colleagues commented today how healthy I look, compared to my coffee drinking days, when they said I looked like death with sunken, hallow eyes and white as a ghost.

I drink tea now, about 2-3 cups a day. For me, it wasn't the caffeine as much as it was the acidity of the coffee (plus, I was drinking WAY too much of it, though I would have severe symptoms when I drank just a cup or two of coffee). Tea does great for me... I feel so much healthier on it than I ever did on coffee. I understand how difficult it can be for someone like me, a huge coffee lover, to go off of it. I do miss the taste of coffee.

I hope all my fellow IBDers trying to go off coffee (or thinking about it) have a successful transition!
Diagnosed with fibrostenotic Crohn's in April 2012, but have had symptoms since 2007.
06-19-2013, 11:30 PM   #21
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I couldn't tolerate coffee at all until a friend introduced me to Organo Gold coffee. I never thought I'd be able to drink coffee again, but this coffee has an acidity level close to that of your stomach, so I tolerate it well.

I'm a big time morning coffee drinker, 4-6 cups, and giving it up for me wasn't an option, so I'm thankful for the friend that introduces me to a different type of coffee with the same amount of caffeine.

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