What did you know about Crohn’s before you were diagnosed?

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mikeyarmo

mikeyarmo

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What did you know about Crohn’s before you were diagnosed?

I personally knew next to nothing about Crohn's Disease before my brother was diagnosed. I knew that I had a cousin who had it, but since this disease really had no effect on my life I did not learn much about it. Once my brother was diagnosed, I learnt more about it. Then a few years later I got to experience everything I had learnt first hand :).

Did you know anything about this disease before you were first diagnosed?
 
Yep, same. Knew absolutely nothing!
Ofcourse, once you have it...you tend to learn fast!
 
I knew absolutely nothing, and neither did the Doctor's for that matter. In 1978, they had no clue...all they new is that I had a bad case of Diarrhea, and didn't take any tests. Of course because of this, I hemmoraged from the bowel and almost died. One year later, they finally could put a name to my Disease. Crohns/Colitis...double whammy, :eek:
 
I had heard of CD but not UC. Now it appears everywhere. I've met a fair number of people with it through very strange channels.
 
Never heard of it. My GP diagnosed me. All I knew about was IBS which was my initial diagnosis, and before that myself and my doctors had always chalked it up to unusually bad seasonal allergies and the GI symptoms from mucus drainage (even though it affected me all year). Then the GI I was sent to accused me of shopping for a crohn's diagnosis.
 
I didnt know anything... had never even heard of it before I had my first serious flare and my Aunt (a registered nurse) suggested I be tested for Crohn's disease.
 
I knew nothing and had never heard of it before. Odd coincindence that my best friend's nine-year-old son came down with it the same year, poor kid.
 
I'd heard of "Crohns" and heard it was a digestive disease, but it was limited to that, I think I'd only heard of it from all the nutrition reading I did from lifting weights and needing to know everything you could about food and the biology of it all. Then my gf had some ailment of sorts in 2005 and Crohns even came up, but it turned out to be something much more simple and treatable (an acid reflux based issue with some chest pains)....UC though, I'd never heard of before.
 
Wow! I'm in the same boat as many of you. I had never heard of UC or CD. In fact, I was relieved to have figured out what I had....duh! That didn't make it better.

This just reaffirms that we need to increase awareness about Irritable Bowel Disease. With so many people facing these diseases increased awareness would make the days, weeks, and months after diagnosis a little less confusing and overwhelming.
 
I'm unaware of "irritable bowel disease" Amy lol, it's Inflammatory Bowel Disease and Irritable Bowel Syndrome, just to clarify...of course if you set off on a crusade to spread the word on "Irritable Bowel Disease", out of boredom, I might just help you. :tongue:

How's the swimming?
 
I was diagnosed so long ago I don't think ANYONE had really heard of Crohns, including the Doctors, unfortunately. They had me pencilled in for a whole load of weird and wonderful diseases (over a space of about 2 years) before they settled on Crohns. For some reason they kept me on a psycho geriatric ward rather than a children's ward (I was 15 going on 16). They also told me I'd never lead a "normal" life... well, they got that right, but not in the way they intended!
 
I never heard of it before.I had a friend who suffered from UC, so I knew he used to bleed a lot but that was that!
 
i had heard of it, because one of my friends had it - i knew very little about what it actually was though, or did to you... i just knew she was on steroids & had a bowel condition.
 
I didn't know anything about Crohn's or UC; had never heard of either. So when I was diagnosed with Crohn's, something I'd never heard of, and my doctor in the hospital told me I'd be back to normal in a few weeks, I believed her--especially considering the media, at least in the US, act as though medical science has conquered pretty much everything except cancer and a few other diseases.

I thought I'd take the drugs I was given and be done with Crohn's in a few weeks; I wasn't told anything about it; I didn't know it was an incurable disease I'd have the rest of my life, barring a cure.

A few weeks after I was hospitalized and diagnosed, my symptoms were getting much worse--most likely because my doctors in the hospital, even though they continually told me "diet doesn't matter," advised me to eat ice cream due to its "softness." That my symptoms were getting worse, that was a surprise because the doctors in the hospital acted like Crohn's was a minor ailment, something that the drugs would take care of and I'd be done with it forever. So my mom called the hospital. A nurse relayed to a doctor what was going on. The doctor couldn't be bothered to speak with me, but did, apparently, tell the nurse I probably had toxic megacolon; she said I needed to see this doctor--five hours away--right away, because I would probably die if I didn't.

I ended up not having toxic megacolon. The doctor decided this just by talking to me. And at that point I still wasn't told much of anything about Crohn's, but at least, because I was told I was going to die, I knew it was serious.
 
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I was aware of the disease in a vague sense. I really only knew it was an intestinal disorder of some kind.

I learned really fast through some dedicated research. My experience with a couple other diseases and alternative treatment methods helped me out quit a bit.

I still do not understand everything about the disease, but I learned enough to bring the symptoms to a halt. Time will tell if the improvement is of the lasting sort, but I am happy to be normal again. Well, as normal as is possible.

Dan
 
Op.28/18, I had a similar experience with my original GI. He did tell me it was incurable but kept emphasizing that I would lead a "normal" life and said it didn't really matter what I ate.
 
I knew very little either. I found out a friend had it after we went out to eat one day and he wasn't eating anything and later on a mutual friend told me what he had and I started doing research on it before I was diagnosed.
 
Op.28/18 said:
I didn't know anything about Crohn's or UC; had never heard of either. So when I was diagnosed with Crohn's, something I'd never heard of, and my doctor in the hospital told me I'd be back to normal in a few weeks, I believed her--especially considering the media, at least in the US, act as though medical science has conquered pretty much everything except cancer and a few other diseases.

I thought I'd take the drugs I was given and be done with Crohn's in a few weeks; I wasn't told anything about it; I didn't know it was an incurable disease I'd have the rest of my life, barring a cure.

A few weeks after I was hospitalized and diagnosed, my symptoms were getting much worse--most likely because my doctors in the hospital, even though they continually told me "diet doesn't matter," advised me to eat ice cream due to its "softness." That my symptoms were getting worse, that was a surprise because the doctors in the hospital acted like Crohn's was a minor ailment, something that the drugs would take care of and I'd be done with it forever. So my mom called the hospital. A nurse relayed to a doctor what was going on. The doctor couldn't be bothered to speak with me, but did, apparently, tell the nurse I probably had toxic megacolon; she said I needed to see this doctor--five hours away--right away, because I would probably die if I didn't.

I ended up not having toxic megacolon. The doctor decided this just by talking to me. And at that point I still wasn't told much of anything about Crohn's, but at least, because I was told I was going to die, I knew it was serious.
Click to expand...

That's awful. How long ago was this again?

Amy you're fine. Probably a typo.
 
When I was diagnosed in 2006, I had a vague knowledge of the disease. Talk about a crash course in learning...
 
Ghostwind said:
When I was diagnosed in 2006, I had a vague knowledge of the disease. Talk about a crash course in learning...
Click to expand...

Exactly! Same year and same vague knowledge as I.
 
Diagnosed in 1990. Had no idea what was wrong with me until the morning after my emergency surgery -- minus a gall bladder, appendix and resections in two places. I was a real mess.

Sat in the hospital bed not knowing whatsoever what this Crohns Disease was. Had never heard of it before. Of course my mind raced without access to any material or anyone to explain to me what is was.

I was 27 at the time. I thought I was going to die.
 
GoJohnnyGo said:
Diagnosed in 1990. Had no idea what was wrong with me until the morning after my emergency surgery -- minus a gall bladder, appendix and resections in two places. I was a real mess.

Sat in the hospital bed not knowing whatsoever what this Crohns Disease was. Had never heard of it before. Of course my mind raced without access to any material or anyone to explain to me what is was.

I was 27 at the time. I thought I was going to die.
Click to expand...

That's a hell of a way to find out you have Crohns :eek2:
 
The funny things is that I wasn't feeling so good right before I got diagnosed and kept seeing a commerical on tv that was for some reason advertising Prednisone as some miracle drug for people that had Crohn's disease and I was like "I wonder what the hell Crohn's disease is?" lol , go figure.....:yrolleyes:
 
"Miracle drug" my foot... Maybe for some, but anyone who advertises it as a "miracle" is crazy. If it had no side effects and could guarantee remission, THEN I would believe them.

I had heard of Crohn's, but had no idea what it was. I did some Google research, figured it out and went "Oh my God, I hope I don't have this!" Too bad!
 
BWS1982 said:
That's awful. How long ago was this again?
Click to expand...

It's strange. It seems so long ago and it also seems like yesterday--it was about 2 1/2 years ago.

The worst part is that the doctor used the visit to put me on even more drugs and increase my doses of others (pred up to 80mg) even though I had just been diagnosed a few weeks prior. (He obviously wasn't listening though, as is clear from my medical record; he had it that I had been diagnosed in October, not December.) This doctor also still acted like the drugs were safe, without side effects, and that they'd solve everything. I really wish I had never take those drugs, at least at those doses.
 
I didn't know anything about Crohn's (of course I was 13)...but I [/I]was[/I] convinced that I had leukemia (all the weight loss and everything). I was actually relieved when it was "just" Crohn's.

Seems funny now...wasn't as funny then.
 
Op.28/18 said:
It's strange. It seems so long ago and it also seems like yesterday--it was about 2 1/2 years ago.

The worst part is that the doctor used the visit to put me on even more drugs and increase my doses of others (pred up to 80mg) even though I had just been diagnosed a few weeks prior. (He obviously wasn't listening though, as is clear from my medical record; he had it that I had been diagnosed in October, not December.) This doctor also still acted like the drugs were safe, without side effects, and that they'd solve everything. I really wish I had never take those drugs, at least at those doses.
Click to expand...

That's an atrocity in the medical field, that quacks like that retain their right to practice (odd that the word "practice" is used, because some of these people will never get it right). 80 mg is awful.
 
Hmm let me think, I had RLQ pain for 7 years, no diarrhea, +swelling noted on CT and NOT one Physician could find a cause till my Laparotomy/Appendix day. I even worked in a Level One Trauma Hospital as a Paramedic, no-co-workers had any suggestions.

I was admitted 4 times for "VIRAL PERITONITIS!!!"


rotf.....I knew nothing, nada ZERO, NIL.....etc...

Just like the medical community, which is very sad...
 
didn't no anything about it, hadn't even heard of it before. when i first realised id lost a stone in weight and had no appetite my mum was convinced i had anorexia!
 

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