Do I Belong Here?

[RunnerInPink]

So...I don't think I have Crohn's...

Let me explain.

I'm 27 right now, female, if that matters...In 2007, shortly after my first half marathon and during a time of insane stress in my life (relationships, money, and graduate school stress) I got sick. Kinda like the stomach flu but couldn't get better.

Test after test after test...finally had a colonoscopy and I have some intestinal (either polyps or ulcers...mom and I disagree on what the doctor said) something's. So....he said he thinks its Crohn's but didn't diagnose me with that because it would lead to insurance issues? I'm not sure. I really don't even know what my diagnosis is...

At first they had me on Pentasa and that made me insanely sick. Switched to Asacol...had a hard time at first...but my body got used to it...and was pretty much ok for the last 3 years. I can eat whatever I want, run half marathons, 5K's and do triathlons. No problems.

Occasionally I get gas. Rarely I get diarrhea, rarely constipation. Mostly I'm fine.

In December 2010 I noticed every time I took my Asacol...my stomach would BURN...and I felt like crap. I started thinking about it...and I hadn't really felt back to normal for a long, long, long time.

I quit taking my Asacol. I'd been going off of it gradually...because my insurance didn't cover it and it's like $400 a month...and I teach high school. Cannot afford that.

Basically...haven't been on Asacol since December 23, 2010. No problems. I can eat anything. Nuts, onions, fruit, seeds, fried foods, dairy, chocolate, anything but super-spicy stuff and I never ate that anyway. Sometimes I get a little nausea/indigestion....never get bad diarrhea...haven't thrown up once *knock on wood* so....are there cases out there like mine where it IS Crohn's but it's not that serious??? I do notice I get sick if I eat TOO MUCH dairy or TOO MUCH fried food....but not majorly sick and I can still eat quite a bit. Also no weight lost at ALL. If anything I think I've gained weight....but I'm at a normal/healthy weight.

I'm planning to get another colonoscopy this summer and then maybe get another doctor and a second opinion. I really...don't think I have Crohn's.

Just wondering if anyone out there is similar to me...or am I just odd?

If it matters...my mom has IBD/IBS (I forget which) related to stress.

Any thoughts appreciated. And yes I know I'm bad for going off my meds without Dr supervision. I'm just not a big fan of drugging myself. I'd rather change my diet and treat the cause, not the symptoms...if possible. Plus... $400 a month just isn't possible for me. No way, shape, form. Not with student loans and rent and such.

So...anyone else out there that's basically medication and symptom free?

 

[billyjoel]

I have a case similar to yours and I was in denial for 3 years before accepting that I did have Crohn's. I live a healthy life like you do, but I still have Crohn's, there are varying degrees of severity with this disease, and also symptoms are much different from patient to patient. I *recently* developed arthritis related to my Crohn's. I also have frequent eye inflammation and weird skin bumps associated with Crohn's. Just because you are lucky enough to eat almost anything this does not mean you are Crohn's free, you may exhibit symptoms and not even realize it. I am not trying to be a downer just informative and realistic. You need to study more up on your disease, because you will realize you may have more symptoms than you think. I am one of those guys who hates to admit that I have a chronic disease, that I am somehow different, but I finally accepted that it is true. Alcohol does a number on me now, where before being diagnosed I could drink quite a bit with few problems. There are other things that I am sensitive to as well that I avoid, but for the most part I can eat almost whatever I want. Except when I am flaring and then my food sensitivities are more pronounced.

 

[RunnerInPink]

Hmm.

That is interesting. What...exactly is a flare up? I've heard of these but...I never know what one is like. I assume it's different for every person...but...what would it be like if you have a...milder form? I don't know if I've ever had one, haha! Can it be just...like some gas?

Thanks for the post!

 

[Jer's Girl]

Hi Runner! Not everyone on this site has a diagnosis or even has Crohns, but we are a community none the less. Our cases are all different here, and all are welcome!

It does sound like you are in a bit of denial, but if you can’t afford your meds, you can’t afford your meds. Just be aware that the reason that you don’t have too many symptoms could be because you are on them. It is really a waiting game for each of us to see what works or doesn’t. I wish you all the best, whatever you decide.
Welcome to the family!

 

[tiloah]

It's possible the drugs put you in remission. Which is great, but it also means you might worsen off of them. Is it possible to see your GI and ask if there is a more economical treatment? Or look in to some financial assistance for the drugs you're taking?

I would also try to talk to the GI to see what the basis for his "diagnosis" was, I think it's worth knowing.

 

[RunnerInPink]

I haven't been on the meds in almost 6 months...really more like a year since I only took them at partial dosage before that.

I feel better now than I have in the last 3 years being on the meds. I have noticed the more organic and clean my diet, the better my life is. This includes meats, fruits, and veggies.

If I do get an upset stomach I take a ginger tablet or probiotic. Usually that's all I need to feel fine by the afternoon!

I do plan to ask my GI what exactly he found the first time...and see what this next colonoscopy shows.

 

[billyjoel]

I have been off my meds a year. I eat well and run 30 minutes a day and lift once a week. I am always gassy routinely have joint pain and eye inlammation. Sometimes I get the big flares and miss work.

 

[tiloah]

Well to be honest I hope you don't have Crohn's. Nobody should! I hope you keep feeling better whether you take the meds or not. Although I know what I would recommend.

I would be really curious to hear what your GI has to say. It has been the experience of a lot of people (from what I have read) that it is really hard to get a diagnosis - even when Crohn's seems really likely doctors seem to be really resistant to diagnose it. So it seems unlikely to me that your GI would be wrong or would have made that diagnosis without reason to do so. Although I'm sure it's not impossible.

 

[ameslouise]

Hi Runner and welcome!

If your doc put you on Pentasa and then Asocol, he must have thought you have CD b/c I don't think any good GI doc would put you on those drugs without either a CD or UC diagnosis.

I would go back and ask for your medical records from you doc and see if you can clear up what he thought you had at that time. And if you are feeling wonky and not well again, definitely pursue it with more tests - a small bowel follow thru and/or pill cam would be the best place to go after a colonoscopy.

Hope you continue to feel well with the diet and probiotics, etc.

- Amy

 

[lookame]

I agree you should have a look at those colonoscopy results, I have a copy from my first colonoscopy which helps bring the diagnosis into the light, even though I know my crohns got worse since that colonoscopy. It's also possible the medicince put you into remission which is awesome. It's also possible you have a very slight case of crohns or UC. When I'm on medicince I often fell like I'm disease free, just have a reminder every morning when I wake up and have to take my medicine...and when I make my daily trips back and forth to the bathroom.

I'm not in the same situation as you since if I skip a day of medicine my crohns has a feild day and the blood and iarreah and everything start comming.

Flare up-when you are symptomatic(diarrheah, blood, mucous, soft stool, stomache cramps, ect)
Remission- disease is inactive, not showing symptoms