After 15 years, diagnosed with early Crohn's

[Saralr]

I'm so confused right now. I have been having stomach pains and bathroom issues on and off for the last 15 years. I have always been told it is IBS.

My latest episode started a year ago with me being unable to pass gas without poo splatters. The pain got worse and worse and the doctors had no answers except that I had some sort of inflammation and would do nothing until I fought hard enough to get a referral to a GI. She immediately ruled out IBS.

Since then they found patchy inflammation in my colon during the colonoscopy and the biopsy showed symptoms of a chronic colitis. They also did an IBD Serology blood test. That came back normal. The doctor believes I have the early stages of Crohn's and is going to treat me to see if it improves.

What confuses me is how can I have issues for 15 years and be in the early stages of Crohn's. Why have I had pains for so long if IBS and IBD are not the causes? Can you have Crohn's that long without scaring?

 

[2thFairy]

By IBD serology, I am guessing you mean the Prometheus test? If so, that test is not very accurate and many people with IBD get negative results.

As for your other questions, I don't have answers, but I can tell you that I had major chronic symptoms of ulcerative colitis for about 18 years before it was finally correctly diagnosed and treated.

 

[yosemitegirl]

Saralr... A long time to suffer without answers, but it isn't an uncommon story for many of us, unfortunately. I was sent to psych all the time. Didn't even have the dignity of IBS. But that was 45 years ago, and finally, a Crohn's diagnosis. Still, even in the ER, few could even spell it. Not very encouraging.

Everyone seems to have their own process with Crohn's. Some for abscesses, some fistulas, etc. I have always scarred over despite anti-inflammatory drugs and immuno-suppressive drugs. All strictures eventually leading to the 10 surgeries.

Sometimes I swear it has a life of its own despite what I do, think, eat, change. Very discouraging because if I found a correlation to something I would most definitely stop whatever it was making me worse. Loss of control a terrible thing. Nothing after 45 years... with more questions than answers. And after decades like this the medical profession has thrown it back in my lap... nothing left to do.

I hope for you a much better outcome. Take care... Michele Lea

 

[Saralr]

Thanks. I see my doctor today, which I'm looking forward to after a long painful weekend. I think what makes me the most nervous is that my daughter has stomach problems too. She is 9 and was not tested for Crohn's because she's normal sized. They automatically ruled out Crohn's.

Just so much all at once and nobody in my family really understands it. I think seeing the doctor may help some of my fears.

Thanks again. Its nice having people that understand.

 

[yosemitegirl]

Saralr... the most important question you asked is a great one. How can you have symptoms for 15 years and not have scarring? Assuming you had active inflammation going on and no abscesses, fistulas or strictures, it still is possible. Anything is with Crohn's, I have come to learn. Many people fit into the "norm", if there is such a thing, but many do not. I believe that my guts were messed up long before I had noticeable symptoms taking me to the doctor. I blew it off as nerves, a really dysfunctional family, the 60s, whatever. I remember having terrible constipation and an always upset stomach a decade before the diarrhea and other stuff set in. Took laxatives and antacids like there was no tomorrow. Possibly the beginning of Crohn's? Hard to say.

If it truly is an auto-immune disease as they believe, then maybe it is always there on some sub-level. I know the disease process can be seen under the microscope even in patients with few symptoms and the intestine looking normal to the eye. And if it is genetic, then maybe we have never been quite right. I tend to believe both of those explanations.

Which brings me to your concerns for your daughter. My daughter, now age 40, has had intestinal problems since 5th grade. Since I have definitive Crohn's, they always looked for a clinical confirmation with her symptoms. None ever found. Yet to this day they believe she has some form of Crohn's. Though for awhile they thought she might be externalizing some of what she heard from me. I have always tried to keep it low-key, no drama queen here. But even hiding a lot of the awful, my family was obviously affected. If you are affected, then they are.

All you can do is validate your daughter without overly dramatizing anything, which we all try to do with anything involving our kids. Either it will manifest or go away. Time will tell, unfortunately. Not a great answer when you need one.

I wish you the very best. Having an answer is better than being sick and feeling crazy without one. (I think of all the times I sat in psych with diarrhea, running to their bathroom... thinking I was mental.)

Take care... let us know. Michele Lea