Undiagnosed because someone would have to admit fault.

[vocalartillery]

I have been waiting and fighting for a diagnosis for over 4 years....Ironically when I look back at my childhood I can see scattered events that bring me to this conclusion.

The worst part about being sick is that your self esteem and ego get thoroughly damaged in the process. If someone tells you it's all in you head and you need a hobby and papaya juice, those things tear you down...because even through they sound assanine you try them!

So here I am sitting in my GI doctors office waiting to hear about this ameboia I contracted. I know how I got him...my husband made a stupid mistake and used the wrong hose on the RV, and that's how the cookie crumbles.

Anyways, the thing is...she better not tell me this is the underlying cause of all my symptoms. I may very well lose my mind and walk out....I can't handle any more ignorant answers.

 

[Ttoz]

I know exactly what you mean!! Doc in Bellingham said UC. He had to because he took out my large intestine. Doc in Seattle said "classic for UC" he was involved and did the J pouch. Doc in Eugene said "hard to say because you didn't have any symptoms leading up to the total colectomy". A radiologist in Florence said "no way you had UC, maybe food poisoning or e coli" (his dad was diagnosed with UC at 60 so he spent a lot of time researching it and I gave him my pathology reports). The doc in Boise said "you have CD because of fistulas" (and put me on Remicade for 4 months and had no response then put me on Humira.. did not respond to that either). The last and most recent doc at university of Utah said if you really corner them and pin them down they will say they don't really know. Maybe it's really hard to diagnose? Might be almost impossible? I think it's more of a comparison with like syptoms compared to others that have been "labeled" vs. the 7-10 tissue samples they have taken from me. I feel your pain

 

[vocalartillery]

It is sheer misery. Here I am now taking more antibiotics for a MONTH. A normal 7-10 day regime kicks my ass.

My aunt had Crohns. Hers was so evident no one could say otherwise. Then there is me where my stomach won't empty and if it manages to get through my small intestine without being vomited up, it is then suicide rollercoastered out in diarrhea that makes me think I should be skinny as a rail. Come to find out my stomach is distended and I'm so malnourished my body can't tell what to do so it converts everything to fat.

Where are you located, if I can ask?

 

[Ttoz]

I'm just south of you in Nampa ID. I remember a time when cipro was awesome and worked really well for me, but that was over 15 years ago. Now it does nothing but cause acid reflux and constipation. Have you thought about a diet and stick it out for the long haul? I can digest meats really well (like a paleo diet) but now I just don't eat anymore gluten. Yes it was really hard to get used to but now it's just normal and I don't care about all the things I used to be able to eat. Plus my wife has been gluten free for about 4 years so it made the transition a little easier. I eat steamed vegtables, eggs, bacon, chicken, steak and ground beef/ground turkey (with taco seasoning -on corn shell tacos). I try to stay away from too much dairy and starches like potatoes. It's hard to stick to in the beginning but you will get used to it and I would bet you'll feel better too! I don't have much luck with doctors, just like mechanics, there's not many really good ones out there and they're getting harder to find!

 

[vocalartillery]

Unfortunately for me I have to have a basically liquid diet. I can't digest meat or salad....or much of anything lol. I can eat popsicles, periodically yogurt with granola. Even though I've yet to get a diagnosis for this I have so many other ones coming out of the woodwork.