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Diagnosed After a Few Years of Symptoms

E

escere

So I was just diagnosed in January, after having a terrible flareup starting in August. I've probably been having flareups since high school and was diagnosed with h pylori, celiacs, ibs, etc and pretty much told that it was just anxiety. Turns out it's not.
Anyways, I'm 23. Currently trying to get it under control. I'm now taking Humira and Mercaptopurine. I still have near-constant exhaustion and I want food because I'm tried, but I can't stomach most foods. My GI is going to up some of the meds to see if that helps and I'm trying to see is any supplements help. Next, I'm going to mess around with my diet and try to see what foods help.
I am getting enough sleep and I'm trying to do some exercise every day. But mostly I just want to sleep all day. And eat chocolate.
 
2

24601

Location
London, UK
Hi!

So sorry that you're dealing with Crohn's. Welcome to the forum though! You are at least in the company of people who know exactly what you're dealing with here.

Yep, Crohn's is definitely not anxiety...that was one of my early diagnoses too. Did you get a confirmed diagnosis of celiac disease?

It's good that your doctor is adjusting your meds. I hope that works well for you. The fatigue is exhausting in itself and when you can't eat properly that just makes everything harder. Are you having supplemental drinks? How's that going?

Hope you can find the right combination of meds and diet to work for you
 
E

escere

I never got an "official" celiac's diagnoses. After I was treated for h pylori, I was told that it take a year for my body to heal from everything and to start to feel better. When I didn't, it was suggested that I try eating gf since I tested positive on the blood test and my grandmother had celiacs. So I stopped eating gluten, and felt better. Then didn't, so I stopped eating soy and dairy, and felt better, then I didn't.

And I'm one of those people who gains weight during a flare, and my doctor (who I changed after all this went down), pretty much decided since I looked "healthy" and I wasn't having consistent problems with vomiting, there was nothing wrong.

Though personally, I'd rather do as much as I can with diet and supplements because medication doesn't always work on my the way it's supposed to.

I haven't tried supplemental drinks. Really, my GI pretty much told me to start taking a bunch of meds, and to avoid eating fiber. Which is why I continue to turn to the internet (and the library) for my information needs. But I'm seeing a nutritionalist in a couple weeks, so I'm hoping that she'll have more suggestions.
 
2

24601

Location
London, UK
I definitely have experienced doctors taking my disease less seriously because I was a healthy weight...until I wasn't of course and then they very suddenly got extremely anxious. But it's really not uncommon for Crohnies to be a normal healthy weight or even overweight - especially when you factor in steroid weight gain for quite a lot of us. And it's sort of surprising that doctors don't realize that when you only need to meet a few people with Crohn's to realize that there is that variation - but it doesn't necessarily indicate that there is nothing bad going on inside.

I also didn't have the 'classic' Crohn's symtom of diarrhea so I think my doctors early on always underestimated the extent and severity of my disease.

It's interesting to hear what you say about excluding gluten and then soy and dairy. I think that diet can be so helpful with Crohn's (although I tend to believe that most of us seem to need meds too unfortunately, and at the very least that was the case for me) but it is really difficult when you find yourself needing to exclude more and more. That's how I was when I was pursuing a dietary approach to Crohn's and for me I think it was not a successful case of managing to restrict my diet to things that controlled the disease but whittling the things I could eat down to almost nothing - just the few things that didn't exacerbate my increasing symptoms. I was I suppose accommodating the disease rather than treating it. But seeing a nutritionist is a great idea so that you are sure you're still getting a balance of nutrients and enough calories.

Has your doctor suggested avoiding fibre for any particular reason? Do you have strictures?

Hope you start feeling better soon
 
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