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12-06-2016, 01:55 PM   #1
ebee
 
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I think I am going crazy

Hi everyone my name is EBEE. I just saw the fifth gastroentorologist of my life and he diagnosed me with IBSD, but he also doesn't want me eating gluten or dairy, nuts or seeds. I have had chronic diahrrhea since I was an infant. I am now also having abdominal side pain and exhaustion. I am pretty sure it is Crohn's but the doc referred to a colonoscopy I had five years ago that showed inflamation but nothing else. Is this normal? I am so frustrated and I am tired of having to deal with this. Isn't IBS just a catch all for crap we don't know what's wrong. I even brought a list of what makes me have this happen which is just about everything. But I also have PCOS so I have weight issues not typical with Crohn's. He did tell me I am not usual for the symptoms since I have so much going on. HELP ME! Thanks for letting me vent all
12-06-2016, 02:08 PM   #2
Cat-a-Tonic
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Hi, welcome to the forum. First and foremost, you are not going crazy. Having doctors tell you that they can't find anything wrong with you can certainly make you feel crazy, but you are not. It's not all in your head, you have a legitimate physical illness, so don't let them tell you otherwise.

Secondly, there are a fair number of overweight Crohnies, it's less uncommon than you'd think. The illness presents differently for everyone, and although it's more common to lose weight/be thin with IBD, it's definitely possible to be overweight and have Crohn's. So also don't let that get in the way of a diagnosis.

What tests have you had done besides the colonoscopy 5 years ago? I would recommend you have another colonoscopy, with lots of biopsies, if it's been that long and particularly if you're having new symptoms. With the exhaustion, have you had bloodwork done? Deficiencies in things such as vitamin D, iron, folate, and vitamin B12 can commonly cause fatigue and are very common with IBD. I had an iron deficiency last year which made me horrendously fatigued, but fortunately iron infusions made a world of difference for me - so it might be an easy-ish fix for your fatigue as well. Definitely get that checked out.

When they found the inflammation 5 years ago, did they give any indication as to why you were inflamed? Inflammation doesn't happen with IBS so I would be questioning that. I'd also be questioning why the doctor has recommended that particular diet - have you tested positive for any food allergies or for celiac disease?

If it were me, I'd be pursuing another doctor (it sounds like this one you just saw is brushing you off if he diagnosed you with IBS without doing any tests?) and I'd be pursuing a lot of testing. Blood tests, stool tests (fecal calprotectin), another set of scopes, and imaging tests (either CTE or MRE).
12-06-2016, 02:17 PM   #3
ebee
 
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Thank you so much. They never did explain the inflammation all I got was we know something's wrong. I have had a lot of blood work, I have low iron and anemia that comes and goes that they think was related to horrendous mentrual cycles which are no longer an issue as I had a hysterectomy in October. I take anxiety meds and have PCOS which is why the weight issues. I was tested for celiacs and I do have a gluten intolorance. Darn I can't spell...anyway, I also have the added hurdle of having no family history due to the fact that I was a closed adoption. The doc did say he will do a new set of tests in a month if nothing improves or things get worse. but I wasn't even sure what kind of blood tests to get. The forum has really helped with that. I will push to get those sooner. I will also look into a different doctor. The insurance is always a hurdle but I am a single mom with an Asberger's kiddo so I know how to fight. Thank you so much for the advice and taking the time to respond.
12-06-2016, 03:52 PM   #4
Cat-a-Tonic
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Oh goodness, I'm sorry you've been through all that and that you've had to learn how to fight the insurance companies, but it's good that you're a fighter, it's unfortunately a skill you're going to need time and time again. I was so meek and shy before I got sick, I had to learn as I went how to fight and advocate for myself.

As for what other blood tests to get, I'd also recommend you have your CRP (C-reactive protein) and ESR (elevated Sed rate) checked. Those are both measurements of inflammation in the body. For a more specific measurement of inflammation within the digestive tract, there's a stool test I mentioned in my earlier post called fecal calprotectin which I'd also highly recommend - CRP and ESR look for inflammation anywhere in the body, whereas fecal calprotectin is only looking for inflammation within the digestive system.

I agree that it's a good idea to push for bloodwork to be done sooner - at least then you'll have some idea of what's going on and can use that as a jumping-off point for further testing.
12-06-2016, 03:55 PM   #5
ebee
 
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Luckily my primary care doc asked to have me go for blood today and I asked the GI to order the CRP and an tTG-Iga test to see about celiacs as well. It is such a struggle, half the time doctors make you think you are nuts, or a hypochondriac when all you want is answers. I'll see if I can get the ESR added as well. Thank you for all the advice, it is super helpful!!
12-06-2016, 04:16 PM   #6
Cat-a-Tonic
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Yes, I know that feeling very well, having to basically prove to doctors that you are sick. And it's that much more difficult when you're undiagnosed (for the record, I'm technically undiagnosed myself - sick for 7 years now, all tests have been normal or inconclusive so far, but my symptoms fit IBD and I respond well to IBD meds and we've ruled out most everything else that was a likely suspect, so my doctors generally do treat me as though I have IBD, but it's still sometimes a fight as I am still undiagnosed, and I can never be complacent about it). Don't let the doctors treat you like you're a hypochondriac or brush you off as having "just IBS", find a doctor who takes you seriously - that's the most important thing. A doctor who doesn't take you seriously is not worth one second of your time - you are paying them, after all, and you're entitled to find a good doctor who is worth your time and money and understands that you are legitimately in pain and suffering and need some answers and relief.

And it sounds like you do have a good primary care doc if he's doing bloodwork already? If your GI won't order the CRP and ESR, your primary care doc should be able to. They should be able to order some other tests as well, such as stool tests (my primary care doc even does colonoscopies). So do use your PCP as a resource as well, especially if you're looking for a new GI.

And no problem, I'm happy to help. Like I said, I'm undiagnosed myself and I hate to see my fellow undiagnosies suffer or go with a lot of unanswered questions.
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