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New to site and have questions. Help, please?

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Old 05-25-2011, 01:37 AM   #1
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Join Date: May 2011
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Lindy77 HB User
New to site and have questions. Help, please?

I recently joined this site after doing a lot of reading on it. I have UC; however, the doctors are perplexed on my case due to the extreme amount of pain I experience.

I'll try to tell this in a nut shell so I don't bore people, or in case this has been a post before. I was diagnosed in May of 2010 with UC after experiencing horrible IBS constipation issues for years (a colonoscopy with a biopsy confirmed I had UC; previous colonoscopies showed no traces of UC).

June of 2010 I was hospitalized (in Tampa because that's where I was finishing up my senior year) due to the horrific amount of stomach pain, blood loss and inability to carry our daily activities. I received 2 blood transfusions, had numerous tests done (MRI, CT contrast scan, KUB X-ray, all kinds of blood work- obviously my SED rate and CBC were very low- some small bowel study, and an ultrasound) Everything came back consistent with UC, but no one knew why I was in so much pain and was not responding to regular treatment (IV fluids, IV steroids, pain medication, and 2 antibiotics.) The pain medication I was receiving were 2mg IV Dilauded every 4 hours, .50mcg Fetynal patch and 10mg Percocet every 6 hours. Even with that, I was still passing out due to my pain level. The IV Dilauded only lasted me about 3 1/2 hours until I was back in screaming pain.They did not know what to do with me, and they were ready to remove my entire large intestines.

After 2 1/2 weeks in the Tampa hospital, I was transferred to my home town where I was under the care of my local doctors (including my GI) and a better hospital. I received another blood transfusion, more IV fluids/steroids/nutrition/antibiotics and pain medication, but my GI and Colorectal Surgeon were baffled as to the amount of pain I was in. I was there for 2 more weeks while they were running more tests and trying to keep me under control (no surgery needed). They were trying me on different Mesalamine drugs, but I kept reacting poorly to them, especially the enema's. Finally, Dipentum worked. Once all this ended, so did the terrible pain. Apparently, I've been told, UC patients don't experience the type of pain I was in; it was abnormal. It took a while for me to get my strength back, but I did and was healthy for 11 months.

I'm getting over my first flare up currently. This time I caught it soon enough I didn't have to receive any blood, but I did spend 2 weeks in the hospital, then 2 weeks at home in bed. Again, no one knew or understood the horrific pain I was experiencing. I was receiving about the same pain medication as I did the last time. I'm lucky enough to be recovering at home currently, but I wish I could be off all these pain medications (Oxycottin, OxyIR, Neurotin and other drugs aiding in reducing my pain level.) They got most of the bleeding to stop with the IV steroids, and I am now on a slow taper of Prednisone (just like before). They have increased my Dipentum to 8 capsules a day and want me to try the mesalamine enema Rowasa that has previously not worked and caused me a great deal of sharp shooting pain.

I have been told by my GI that this amount of pain and unusual reaction to basically all mesalamine drugs is highly unusual. Several times they have considered sending me to Emory and have talked to Emory about my case. Doctors are still perplexed.

I was wondering if anyone out there experiences this type of pain associated with UC, or has been in a similar situation........... what did you do? How were you treated? What helped? What was your diagnosis? Any response would be greatly appreciated. I'm beyond frustrated; I'm 9 hours shy from graduating college and this is slowing me down. What works for people? Am I, or the Doctors, missing something here? Any, ANY, feedback would be amazing.

Thank you for taking the time to read this.

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