so one day healthy as a horse, next day we develop Crohns/UC? WHY???

I realize its a simplified version of the true question, but I'm in my mid 30s. Growing up as a kid, I was NEVER sick, and my mom attributed it to being breast fed as a baby.

In my mid 20's I was diagnosed with UC, and 5 years later the diagnosis was changed to Crohns.

I bring up my medical history because like everyone else here, its baffles me how one day we're fine the next day not so much.

Has anyone here ever questioned 'why'?
I don't think this is the answer, but growing up there was really on such thing as bottled water, I only started having it during my college days (around 2000) and 5 years later I started getting sick. Maybe my body needed normal water? Just a thought as I sit housebound today because I made the stupid decision of eating Taco Bell last night (smh)

Interesting response. My mom has rheumatoid arthritis.

Also as a kid my grandma would ask me, "how are your bowel movements"? At the time, I didn't know what a bowel movement was, haha. (ignorance is bliss)
keep in mind as a kid I didn't have Crohns/UC or any stomach issues.

As for the eating well, I ALWAYS used to eat salads. I miss having a big chicken Caesar salad. Raw veggies were my favorite.

The year before I got Crohns, I was under INSANE stress. I hooked up w/ this girl (not sex, but everything else, and at the time I wasnt educated on how you could get HIV. I thought for sure I had gotten it. For a year I drove myself crazy thinking about all the consequences, etc. Maybe stress has something to do w/ it.

This has proper baffled me too.

I was another kid who never got sick. Was bottle-fed though, and suffered from chronic constipation until I was about 18 or so. I'm not sure whether the constipation was caused solely by a crap diet, or whether there was an additional psychological component of holding things in. At any rate, in my late teens I heard about fibre and started trying to eat more of it. It worked, and the constipation gradually but completely went away.

I didn't know it at the time obviously, but the next six years were to be the best years of my life, bowel-wise. I had solid, one-a-day BMs, which I would have taken photos of and had framed in gold gilded frames if I had known the future. My glory throne days came to an end two or three days after Christmas Day, 1999. I had diarrhoea. It wasn't very bad and I put it down to the excesses of the Christmas season, even though it had never happened before. I don't overindulge massively at Christmas anyway: I've never been a big binge drinker or eater.

I was doing an access course at the time and finding it pretty stressful. So maybe that, in conjunction with eating more chocolates and sugary foods/drinks than normal, pushed my gut bacteria over the edge and triggered the faulty Crohn's immune response. If I could have foreseen the future, I'd have lived like a monk that Christmas and taken myself off to a buddhist retreat which only served vegan, no-dairy, no-sugar organic food or whatever.

It's capable of driving me nuts if I think about it too much, particularly as I was relatively old when it happened - 24, almost 25. The majority of people get Crohn's in their late teens or early 20s, so I sometimes wonder if I could have avoided getting Crohn's entirely. But probably not.

There's Irish members of my family who have Crohn's, plus a cousin who had it (she unfortunately died of cancer). But the cousin lived abroad and I never knew the Irish side of my family, so the fact that there was a family history of Crohn's was unknown to me. It's clear to me now that I had a genetic predisposition for Crohn's, which could have been triggered at any time. In fact given my crap diet as a child and teenager, I'm sometimes surprised it wasn't triggered earlier. I didn't take antibiotics, smoke, go on birth control, etc., though, so maybe that helped for a while.

Another thing which gets me as well is why, once triggered, that's it, you're stuck with this crap disease for life. I'm not talking about periods of remissions and relapses; yes, Crohn's can go away temporarily, but why does it literally never go away permanently, as in for the rest of your life? I feel like I'm asking a stupid question, but I genuinely don't understand why Crohn's doesn't disappear for good in, if not everybody, then at least some people.

PS: Also got a brother with Crohn's, just to hammer the family history point. His has been really mild though. My cousin's wasn't so mild but not as severe as mine. Tbh, I know so little about her case I don't know if she had small bowel Crohn's or Crohn's colitis.

This is so interesting. My 20 year old son literally was never sick (and was breastfed) until CD dx last year (although he had it two years before telling me and his dad). The only time he went to the doctors was for annual check ups. He only missed school for going on family vacations never for being sick. He DOES have a paternal uncle with CD and a first cousin with UC - which does seem to indicate a genetic link. His GI doctor who is always on the cutting edge of CD knowledge (We are from Minnesota with the Mayo clinic and U of Minnesota) and the latest is that it is bacteria driven which can be influenced by genetics? I was always under the impression it was driven by the immune system?! I would love to know the WHY because then someday there may be a HOW to get rid of it!

We pretty much know that causation is a problem of both a genetic predisposition and an environmental trigger, but they are still learning which genes, and which triggers contribute to it. Thru CCFA, I agreed to participate in a research study through Mt. Sinai Hospital in New york. Ashke**** Jews (Jews of Eastern European descent) are four times more likely than the general population to develop Crohn's. The study is looking at the DNA of Ashke**** Jews with Crohn's and interviewing about environmental triggers. All I need to do is send them some saliva (for the DNA) and give them access to my medical records, so not a lot of effort on my part.
All four of my grandparents immigrated to the US from Poland/Russia, so I qualified for the study. I have no other extended family that I know of with Crohn's, but tons of relatives with other auto-immune disorders. The researcher asked if I was breast or bottle fed and if I was a smoker, or exposed to smoke when I was diagnosed in 2007. I was bottle fed. I have never smoked, but my mom was quite the heavy smoker and I was exposed in childhood to a lot of second hand smoke. I shared this info with the researcher, but she didn't care. (She sounded like a young student just assigned to ask me the questions on her form)

She didn't ask about exposure to antibiotics, or MAPS type diet questions, or stress questions, all which I think might be possible environmental triggers.

Soo, it's pointless to blame yourself. Basically, I think we have a genetic propensity, and then an environmental trigger or triggers activate the disease, which is probably true for cancer and many other diseases.

Funnily enough, I have the East European Jew connection through my dad, but there's been no Crohn's on his side of the family (although so little is known about that side of family, I actually can't rule it out definitively). I'd like to partake in a research study, but have never been invited to one.

Those CCFA questions sounded too limited to be of much use, though: there's probably 100s of environmental triggers for Crohn's and they picked out two.

Oh, and the system is a bit dumb - it's blocking out n-a-z-i but not recognising that it's part of a larger word which entirely alters the meaning.

I was pretty healthy as a kid too. Besides the usual kid afflictions. I will say though that my stomach was always very much attached to my emotions. Get excited or upset, and I'd throw up. lol But I don't know if that was every some kind of early indicator.

I started getting sick in my late teens, and yup it happened out of no where. It's very odd how it just hits us out of no where like that.

Gumby, exactly. As it so happens, I do think my Crohn's started in the year I was diagnosed (or at the very end of the previous year), but given that the median time to diagnosis is 2 years (IIRC; don't feel like trying to look it up now!) I'm in the minority there.

Unfortunately it sounds like you got a low-paid, unmotivated graduate who probably didn't even have Crohn's herself. I suspect it's par for the course for telephone research. After a few of my hospital stays I had somebody call me at home shortly afterwards, asking me about my experiences. It was all quite robotic really, and the questions were mostly of a "how satisfied/dissatisfied were you on a scale of 1-5 with...?" nature. I dunno exactly, my memory is failing me here. But there's no way I would have been able to engage in a discussion or talk about things that weren't covered by the small number of questions.

That said, I do think Crohn's research which might have an impact in the future is more important than a short-term hospital stay. Bit disappointing that the ccfa appear to have fudged that one.

I'm a little surprised! I was being treated at Mt. Sinai in NY in the fall and they never asked me about a study. Though my new doc at CUMC already spoke to me about two so we'll see where they go with that.

Billo, do you go to the ibd center there? How do you feel about it? I had a GI from there for about 3 years but he was not associated with the IBD center. I was not too happy with them and I know people who have not had good luck there when it comes to surgery despite its reputation. Curious if your experiences have been better.

I have to say, my experience at Mt Sinai (at the IBD center) was not stellar. First I saw Dr. Larry Cohen (oh hey, remember Joan Rivers?) but transferred to a different doctor when he told me my joint pain was because I was fat and because the IBD serology didn't say I have Crohns, he said I didn't. I transferred before I knew who he was, but my next doctor, while ok, was a jerk in person and SUPER hard to get a hold of. After my MRE, he didn't call me for 3 weeks and then it was a few days before Christmas and my insurance was ending Dec 31.

The endoscopy suite at Mt Sinai was not that nice. I'll find out what it's like at CUMC tomorrow though. I felt like people weren't very nice when a lot of us were nervous for our procedures. The anesthesiologist was SUPER nice though. But the nurse in recovery wasn't. She wouldn't take my IV out until I had some water. I had it but was super groggy and the IV hurt. Then I had to pee and she made me wait, then they didn't let my husband back and I had to make it to the bathroom alone and get dressed while still super groggy. Then I just went and met him in the waiting room. It was all so uncomfortable. I get the impression I'll have better luck at CUMC with my new doc.

If you like the Doc and he is knowledgable then it's worth it I think, though I don't know. I went to one on fifth avenue that was recommended through the hospitals referral system ( obviously a mistake I made right there) he seemed like a nice doctor. He also supported me controlling flares with prednisone each time and supported my extreme fears of the bigger meds which was not helpful in the long run. But during a flare and prednisone taper he would have me come in once a week and basically say not much of anything and send me on my way. I would commute 2 hours and yes, bridge or tunnel tolls and parking was treacherous:(. I always left feeling like some dialogue was missing. I had a colonoscopy done in office, there were no nurses, just him and the anesthesiologist that he got from who knows where. He did it despite me having an open infected fistula and running a high fever. Woke up from the scope and was basically pulled off the table by the anesthesiologist and forced to stumble to a chair before I was even fully awake and sent on my way ten minutes later with out the usual crackers or juice they are supposed to give to raise blood sugar. I left and got just to the bridge on my way home and started violently shaking and feeling terrible but was stuck in traffic. I called the office and they offered no help. By the time I got home my temp spiked to 104 and Tylenol could not get it down. It just stayed there for the whole night and I honestly thought I was going to die but was too sick to do anything about it. Last time I went to him was right after that and he told me to read a ppd test myself and that was around the time I decided I didn't trust him to follow me if I was going to be on the big meds. So make sure you hang around the city for a bit if you have a procedure done there again because it is the worst to be stuck in traffic and feel like death.
I switched back to my old doctor's practice who where at least a little closer and more diligent, got a different doctor in the practice who was okay but he often treated it like it was IBS first and then I would end up in the hospital.
I recently switched to one that is closer to Manhattan, with a hospital that is highly rated for GI and the level of compassion and competence far exceeds what I have experenced anywhere else. You are not sounding like a girl to expect compassion during a procedure. Colonoscopies are invasive and uncomfortable. The hospital I go to now has a nice endoscopy suite and the nurses are beyond amazing and they take every complaint I have seriously given my medical history.

@ thatgirlmarie , hope your scope goes well today and that you have a good experience there. yeah for my first scope at the new place I had been having issues of shaking again after the anesthesia and the doctor told me to hang out for a while until I felt well enough and so that they could watch me, I was some what surprised after my other experiences.