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IBS for 16 years turns out to be IBD

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Posted 3/5/2011 3:42 PM (GMT 0)
I am sure there are others out there with this story, but I just wanted to share.

When I went to my Dr yesterday, I asked him about the fact that I had "IBS" since my mid-twenties. The reason I asked him was because at some point over my prednisone treatments, I said something to his nurse about my IBS, and she said that prednisone wouldn't help IBS. Well, when I was on my higher doses of prednisone, I lived and used the washroom like normal people do; 1-2 times a day, without a hint of "IBS".

Anyway, he said that based on my symptoms from way back then (4-5 times per day, urgency sometimes depending on what I ate, most often loose stool - but no blood), and the fact that prednisone helped improve everything most recently, that I have been walking around with this disease for almost 17 years, and only dx 1.5 years ago.

It helps to explain so much. Funny though, every time I mentioned this to a Dr, including my previous GI, in the past they dismissed it as no big deal.

So, that was quite the revelation to me. In hindsight, I am happier that I was dx later in life. I managed to live my youth, get married, and have children without worrying or taking meds.
Posted 3/5/2011 6:57 PM (GMT 0)
So, did your previous GI ever do a c-scope before you were diagnosed with UC?

Inflammation has varying degrees of inflammation...so it was good yours was at the point that wasn't severe. I'm sure many are out there with inflammation whose doctors say "it's stresss..it's JUST IBS...lessen your stress and you'll feel better".

There's a LOT to be said for diagnosis....actual diagnosis not off the cuff one.

q
Posted 3/5/2011 8:08 PM (GMT 0)
That's pretty interesting. At some time one of your doctors decided to treat your so-called IBS with prednisone. I'm not saying they were wrong because you obviously needed it and I'm the kinda person that thinks "who cares what you call it just fix it".

There is a huge amount of confusion about the differences between IBS and IBD. My doctor even says some symptoms overlap and could be one or the other.

You have a good attitude about it. Glad it wasn't cancer you had for 17 years that was undiagnosed.
Posted 3/5/2011 8:46 PM (GMT 0)
imagardner - no, sorry, my IBS wasn't treated with pred. After my UC dx, they gave me pred. I can't quite remember why the IBS question came up with the nurse, but it was then that I thought hmmmm...maybe this has been UC all the time. My Dr said the same thing about the overlap of symptoms.

quincy - no c-scope. When I first went to him (May 2008), I went for GERD and for frequent loose BMs. He dx IBS and gave me a super high fibre diet to follow. He never scoped me until about a year and a half later when the blood, frequency and full out D showed up.
Posted 3/6/2011 7:42 PM (GMT 0)
Some people have both IBS and IBD. I do. I had IBS for more than 10 years before I got IBD. I differentiate the two depending on symptoms, time of symptoms, and duration of symptoms. For example, I ate a bag of sugarless licorice once by accident. I didn't know it was sugarless. My body overreacted. It produced so much digestive juice that it sounded like a thunderstorm inside my abdomen. I had sever diarrhea and urgency afterward. However, once the licorice went through me, I was all better. With IBD, once the food goes through me, I'm not all better. My condition does improve when I avoid certain foods and eat certain foods. But I'm not all better. Plus, with IBD, I have blood due to ulcers. I don't get blood with IBS.

It could be that you have both IBS and IBD. Many of us do. Try keeping a food journal to distinguish the two. Eating the wrong foods could also trigger a flare for some people; so it's very important to avoid consuming foods and beverages that give you gas, bloating, diarrhea, ...

Some things to watch out for include:
dairy
fructose (honey, melons, apples, pears, peaches, some kinds of grapes, juice, dried fruits, canned fruits; that is all fruits EXCEPT fresh berries, bananas, pineapple, kiwis, and citrus)
wheat
gluten
yeast
artificial ingredients or sugars
regular sugar

As for when I first got IBD, my GI uses the date that I got my first flare, that is the first time I saw blood. That flare lasted six months. But it is possible that you had IBD, and not IBS, earlier than you were first diagnosed with UC. Who knows without a scope.

Post Edited (subdued) : 3/6/2011 12:45:55 PM (GMT-7)

Posted 3/6/2011 7:56 PM (GMT 0)

subdued said...
Some people have both IBS and IBD. I do. I had IBS for more than 10 years before I got IBD. I differentiate the two depending on symptoms, time of symptoms, and duration of symptoms. For example, I ate a bag of sugarless licorice once by accident. I didn't know it was sugarless. My body overreacted. It produced so much digestive juice that it sounded like a thunderstorm inside my abdomen. I had sever diarrhea and urgency afterward. However, once the licorice went through me, I was all better. With IBD, once the food goes through me, I'm not all better. My condition does improve when I avoid certain foods and eat certain foods. But I'm not all better. Plus, with IBD, I have blood due to ulcers. I don't get blood with IBS.

It could be that you have both IBS and IBD. Many of us do. Try keeping a food journal to distinguish the two. Eating the wrong foods could also trigger a flare for some people; so it's very important to avoid consuming foods and beverages that give you gas, bloating, diarrhea, ...

Some things to watch out for include:
dairy
fructose (honey, melons, apples, pears, peaches, some kinds of grapes, juice, dried fruits, canned fruits; that is all fruits EXCEPT fresh berries, bananas, pineapple, kiwis, and citrus)
wheat
gluten
yeast
artificial ingredients or sugars
regular sugar

As for when I first got IBD, my GI uses the date that I got my first flare, that is the first time I saw blood. That flare lasted six months. But it is possible that you had IBD, and not IBS, earlier than you were first diagnosed with UC. Who knows without a scope.


Ditto on all of that. I will start thinking it is wheat intolerance only to see yeast in the ingredients. Without yeast I can eat pasta all day every day no problemo.

But yeah I have both for sure. The time to take action is before I see blood.
Posted 3/6/2011 7:58 PM (GMT 0)
Hi Subdued,

Thanks for all of that info! That is great.

The reason I started to doubt the IBS diagnosis was because after being dx with UC, when they put me on prednisone, all symptoms of everything disappeared. I could eat anything I wanted - included many previous trigger foods - alcohol, junk food etc - without have any symptoms of either IBS or IBD. The Dr. said that if I had had IBS, that the pred would not have helped it and therefore I would still had sypmtoms of IBS, which I didn't.

But, as you say, without a scope it's hard to say. It doesn't really matter to me either way, I just found it interesting. I consider my UC to have started with when I saw blood for the first time too. I am still fighting that same flare. Prednisone gave me relief, but every time I tried to come off of it, I was back in the flare. Fingers crossed, the Remicade seems to be working. :))
Posted 3/7/2011 1:34 AM (GMT 0)

mom2panda said...
Hi Subdued,

Thanks for all of that info! That is great.

The reason I started to doubt the IBS diagnosis was because after being dx with UC, when they put me on prednisone, all symptoms of everything disappeared. I could eat anything I wanted - included many previous trigger foods - alcohol, junk food etc - without have any symptoms of either IBS or IBD. The Dr. said that if I had had IBS, that the pred would not have helped it and therefore I would still had sypmtoms of IBS, which I didn't.

That's interesting. I was on pred only once. I didn't know I was fructose intolerant at the time. Also, I became pred dependent. So I don't know if pred did anything for my IBS symptoms.
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