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Crohns/colitis they can't figure out what's wrong with me??
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diagnosisunkown posted:
Hello, This is my very first post to any blog site ever. I'll introduce myself. I am a 29 year old single mother of a CRAZYYYYYY almost 3 year old son. I have had gastrointestinal problems my entire life! I can remember as a little girl sitting on the toilette just crying and screaming from pain while I begged my mom to call the dr as held my hand and draped me with cold towels. Then we thought oh it's just gas pains if must be something I ate, ugh I'm getting the pains just talking about it! It COMPLETLEY made my childhood awkward, not many sleep overs, always looking for a bathroom. A child shouldn't have those fears. Anywho, move forward to age 19 and I'm finally diagnosed with IBS. Lose my insure shortly after so I do looooots of research and find a homeopathic way to treat. Fast forward to current. October 5 I rear ended someone, totaling my car, no one else was injured thank goodness. I spent 8 days in the hospital with black stool full of blood and a pain that I compared to labor contractions, but unlike contractions it is a constant pain. My gastroenterologist showed up, game me an endoscopy and colonoscopy the next day. I had gotten my first colonoscopy and endo the august prior with my colon looking fine minus the spasmatic IBS, my esophagus was bad on the border of Barrett's disease. Well after this colonoscopy and endoscopy he said I had full blown Barrett's disease and my colon was in his exact words " I have done this procedure over 5400 times and you are in the top 20% for the worst condition." He took over 80 biopsies, his pathologist could not figure out what condition it was because there were so many different strands all throughout my intestine. So he then set them to Johns Hopkins and they couldn't figure it out either! I then was referred to VCU gastro specialist, and was completely mortified at the way I was treated! He sat down opened my file, flipped one page back, flopped it on the table and said he can't do anything for me, to go back to my gastroenterologist, he dosnt see drug seekers! I was completely taken a back, my heart just broke. My mother and I had ride up to Richmond and got a hotel room just to make sure we weren't late for this appt. I cryed all night because I was so happy to be seeing a dr that has some answers, and THIS happens! My heart crumbled. I get home and go back to my gastro he appologizes and tells me he thinks it's Crohn's disease or an extremely rare form of colitus. These drs pumped me up with morphene, dilaudid, percosets and want to tell me I'm a drug seeker??!! I'm the one that stopped taking the dilaudid they insisted I was to take, I took it right back to the dr and asked for ultram because I didn't want if to get to the point that I needed these drugs to fiction. Welp now I have been referred to pain Managment. I'm terrified how I am going to be treated and my gastro said he really hopeful for the appt because they never help crohns/colitis pts. That it's an abdominal pain and they just send us away almost as soon we walk in. Well it's not JUST abdominal pain, it radiates thru my back so bad some time the only thing I can do is lay in bed with a heating pad, bent over. This disease, whatever it is has completely taken over my entire body I have at least 2 days a week that it invades every muscle and skeletal piece of my body. It feels like extreme arthritis, I've never felt anything like it. I'm extremely stiff and feel like I can't move. I'm writing because of what my dr told me, that the pain Managment dr will just send me away. I'm controlling my pain now with tramadol, and there's days I have to take 12 or even more. Can someone please suggest a stronger non narcotic that might work better than ultram? And please give me some advise about my pain Managment appt? Any advice at all would be greatly appreciated. Thank you kindly :..)
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annette030 responded:
I am unaware of anything stronger than tramadol that is non-narcotic.

That said tramadol information says not to take more than 400 mgs. per day. Unless your doctor knows something I don't he would say your pain is NOT controlled by 400mgs. of tramadol a day. If for some reason he has told you to take 12 pills a day, please call the company that makes your tramadol and ask them why they recommend what they do.

Take care, Annette
 
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fibrofran17 responded:
Hi diagnosis, were you tested for Celiac Disease??? they should've done a biopsy during the endoscopy??? ASK, cause all your symptoms are what I experienced from childhood till age 60!!!!! before I was diagnosed.....go to a new gastro, they sound like idiots,
good luck,
fibrofran
 
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diagnosisunkown replied to fibrofran17's response:
Thankyou FibroFran, I've been thinking about going to a different gastro. He's a great dr, just really buisy! And yes he has tested me twice for celiac disease and even just a gluten allergy, and I didn't have it, HOWEVER when I got out if the hospital I went gluten free for 30 days, and felt better, as soon as I had gluten I had a flare up! Also I see the Fibro part of your username, is this fibromyalgia? When I was released from the hospital, it was on my discharge instructions of what to do for fibromyalgia but no one at the hospital ever even mentioned that?! I do get extremely bad like deep muscle and skeletal pain..it feels like I have clothes on that are too tight and I can't move. I just figured that was from the possible Crohns?
 
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ctbeth responded:
Hi, and happy new year.

I hope that 2014 is the year that you get answers and pain management

I'm not familiar with the specification VCU gastroenterologist. What does the VCU mean?

What you're going through sounds crazy! Your GI doc tells you that your intestine is in the top 20% of bad, yet he/ she isn't treating you. Why not?

Are you being treated for the Barrett's Esophogus? Has the MD who treats your Barrett's offering you any further help?

I hope that you get some answers and pain relief both.

Please let us know how you're doing.


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