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Confused About Crohns

I’m 48 and was diagnosed with IBS in my thirties. I was also diagnosed with HS, stage 2.

My GP at the time told me to ignore the blood in the toilet after BMs because I was just scaring myself. I struggled with episodes of frequent, urgent diarrhea, anal fissures, bloating and gas every few months for several years, but I never had unexplained weight loss.

I don’t seem to have a gluten or lactose sensitivity or food allergies. A blood test (ANA?) for autoimmune diseases was negative. Everything got better for a while around my mid to late thirties (only an episode here and there as opposed to every few weeks) so I figured I had just been responding poorly to stress.

I got well enough that I was able to work outside the home again and even went back to school. And then the whole thing started all over again. I also started having frequent heartburn and periodic absolutely debilitating heartburn. During an episode a couple of years ago, I had to be hospitalized and have an emergency endoscopy because I couldn’t swallow anything without unbearable pain. I was diagnosed with GERD and prescribed Karafate (sp?) for a month and told to take the Protonix I was already taking twice per day instead of two. That didn’t help much. My follow up endoscopy also looked bad and my gastroenterologist sort of acted like it was my fault—like I wasn’t following the treatment or something. I was!

The really bad heartburn doesn’t respond to any medication and seems to have no connection with anything I eat. It’s often accompanied by arthritis, severe fatigue, dizziness, and either watery stool, frequent stool, bloody stool, or all of three together.

And 24 to 48 hours later, an HS nodule rises above my skin. It happens so often like that that my husband knows I’m going to have an HS flare because my heartburn is bad. I told my dermatologist about this the other day (I was also had a sore on my tongue) and she said I should get tested for Crohns.

I saw my new GP immediately and she referred me to a gastroenterologist (same guy who thinks I must be eating poorly and not following directions) and I have an appointment next month.

My question is, although, from what I’ve been reading, if I’ve had Crohns for 17 years or so—wouldn’t I be much worse off? I’ve never had any obstructions or anything like I’ve read about others having.

Thank you for any help! I’m worried that I’m worrying about nothing and all of this is just a bunch of random things that seem like one thing. At the same time, my husband, best friend, and I have often wondered if I do have some sort of “syndrome” or something weird going on.
 
I also have esophageal ulcers. And, happily, HS seems milder the past few years—just one nodule at a time. It still follows the crazy heartburn, though.
 
Location
San Diego
It's possible to Crohn's for 17 years without it progressing to strictures, obstructions, and fistulae. There is such a thing as mild Crohn's.

I had Crohn's symptoms for somewhere between 10 and 15 years before I was finally diagnosed with Crohn's. And it wasn't until another 5 years after diagnosis that it (an extra-intestinal manifestation) finally got bad enough for me to be put on a biologic. I still haven't had a fistula and only a couple of mild strictures that have't required surgery or caused any problems.

In any case good luck. You may well have more than one thing wrong with you. It may take some time to figure it all out and get appropriate therapy.
 
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