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The Urgency Is So Frustrating

Introduction:

I’m a 42 y.o. doc diagnosed with UC 3 years ago. I’ve definitely been frustrated with the healthcare system – and have never shared my story before.

My Colitis Experience:

Hi everyone. I’ve never shared my story…and just want, finally, to share it.

I was in complete denial in the summer of 2009. I was going 20-40x a day…and finally, once I saw lots of blood…couldn’t deny it any longer….I got a colonoscopy – pancolitis. I remained in denial – and tried an antibiotic, xifaxin – for 6 months. Result – total disaster – became completely incontinent – weight loss….etc. Finally, I hit rock bottom, and gave up, went on a course of prednisone and started taking Lialda. The flare finally stopped, but…. my rectum just seemed completely shot. I tried 6 months of canasa supp. and even tried some steroid foams. Is that what everyone else experiences? Went to see multiple GI docs – and they all said that the rectum is very hard to heal – and that this may be my baseline. Those rectal spasms, known as tenesmus – so evil. Like everyone else, my mornings are rough…. The appetite battles – queasy one moment, starving the next…. My diet: bananas, chicken, shrimp, tuna, cereal, bagels, spinach, carrots, s quash….and that’s it.. no kidding.
Does anyone else have those issues…it makes the thought of traveling difficult to say the least. I also want to get more calcium in my diet, but maybe I just have to bite the bullet and start adding some yogurt to my diet slowly? I have been eating a teaspoon of Parmesan cheese every day or so.. Oh, how i miss eating cheese..wow! I guess, though I may be in remission at times, I’ve never felt back to normal. I must admit, its wonderful when you realize that you have forgotten for a few hours that you have UC – what a gift those moments are. I know I’m still one of the lucky ones, that it could be so much worse. Just wish I had more than 30 seconds – definitely not ideal when you are stuck in a plane during take-off.

Every morning I take 2 or 3 Lialda, an Align probiotic, and a Pearles IC probiotic, and an essential multivitamin. I’ve done that for a few years now…. and still the ups and downs…

Thanks for letting me share.

I am ever-searching for a way to fix this –

and the instant I find something that truly improves things –

I look forward to sharing it with you all!

Regards,

T

submitted in the colitis venting area



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