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Crohn's Disease / Ulcerative Colitis Message Board
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Old 10-02-2004, 11:24 PM   #1
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Join Date: Sep 2004
Location: Oklahoma
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luvmy5babes HB User
Twisten~ questions about Crohn's disease & chronic pain

Hi there!

I'm brand new here, but have read a few of your posts and I see that you suffer with this horrid autoimmune disorder as well. I hope you can help me out..I need tons of information! Just to give you some history, I was diagnosed with Crohn's disease and ulcerative colitis 12 years ago. I was adviced to have my colon removed, and to wear a colostomy bag for the rest of my life (I was 18 then, so I would have rathered died). I begged to try ANYTHING and EVERYTHING possible to treat my illness. So, I was on large doses of steroids, 6-MP, Interferon, Asacol, Pentasa, etc., etc...of course, not all at the same time, but we tried just about everything out there to put me into remission. The funny thing is (and this is completely off the subject..), I was actually a "trial/study patient" for the Asacol and the Pentasa..they were not even on the market back then. Well, so summarize...I was blessed to go into remission two years later, and I have remained in remission for 10 years. Now granted, I've still not been "normal" with my bowel habits...I fluctuate between severe constipation and/or diarrhea. SO many people think I'm so odd in that I can go a week to nearly two weeks without having a bowel movement, but that is how it has always been for me. Now on to my dilemma......I've relapsed (or, I'm having a "flare"..however you want to put it). I had a colonscopy done two weeks ago and discovered not just a couple or even a few polyps, but literally hundreds. Apparently, this is due to all the scar tissue, inflammation, etc. from my first bout with this disease. My doctor was unable to get up very high, due to narrowing of my intestinal tract, and a partial obstruction. I was scheduled to have a small bowel X-ray last week, but the prep. landed me in the ER for an entire night (after drinking just the first round of "cleansing" stuff, it sat in my stomach for an hour and a half before I finally began to vomit uncontrollably...nothing is going down, it's all coming up....one of the reasons that I weight less than 100lbs at 5'5"). Now I'm not real sure why I'm telling you all of this (haha), other than it's nice to "talk" to someone that can relate and understand what it is I'm talking about. My issues that I wanted to address and get some feedback on are the chronic pain issues I have. First of all, I have severe inflammation of not only my intestines and colon, but my joints as well. Some days I can't even get up to walk due to the pain in my knees (and I'm only 31 yrs. old). I also have chronic lower back pain, pain under my rib cage (right side), and of course..the typical, continuous pain within my abdomen. I'm literally in agony. My gastroenterologist has me on lortab for the pain, but at a very minimal dosage. He is very hesitant to raise my dosage due to the fact that opiate pain control has a tendancy to cause constipation...and he is afraid that this will just create more problems. What he doesn't understand is the extent that I suffer in severe pain each and every day. I am a super active person..I have 5 children and I'm constantly on the go with them, doing things for them, etc. I can't live like this. Would you recommend seeking the advice of a pain management doctor? If so, does he/she have to get approval through my gastroenterologist before setting me up on a pain management schedule? If I had it my way, I wouldn't take anything for pain and I would just deal with it...but if I had it my way, I wouldn't suffer with this disease in the first place, and I would not have chronic pain.

I apologize for turning this into a novel, I just got excited when I read that you might just be able to help me with the million and one questions that I have regarding pain management in Crohn's/colitis patients. I'm sure I will have many more questions to ask, that is..if you don't mind. I'm so very tired right now...but as you have probably experienced, the pain I've been in lately is keeping me up and not allowing me to get any rest. Any input, advice, etc. would be so very appreciated!!!! I look forward to hearing from you..and getting to know you better at that!

 
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Old 10-28-2004, 04:26 PM   #2
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Join Date: Jan 2003
Location: alberta
Posts: 1,148
twisten HB User
Re: Twisten~ questions about Crohn's disease & chronic pain

lUVMY5BABES, I feel so bad somehow I missed this post and came upon it looking for a different post today. I sure hope your still around the boards. In regards to your question about seeing a pain management doc, yes I do recommend that. I've found that GI docs do NOT like to put us on pain meds because of the issues with our digestive systems. I'm just like you constipation wise, I also can go for up to 2 weeks with nothing happening. As per opiates and constipation problems I found that the duragesic patch was the best option as I didn't have bowel problems while on it. I had other side effects though and the cost was too much for me so I couldn't stay on it. The prep for a colonoscopy makes me violently ill also. Sounds like you and I definitely have a lot in common with this disease. I did have a temporary colostomy a few years back and hated it. I really don't think I would ever want to go through that again. Again I hope your still around and if I can answer any more questions for you feel free to ask.
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Crohn's disease, scoliosis, chronic myofascial pain, migraines, Osteoporosis, Trigeminal Neuralgia.

 
Old 09-21-2011, 11:25 PM   #3
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Join Date: Apr 2011
Location: Huntington Beach, CA
Posts: 10
XxVelvetRose7 HB User
Re: Twisten~ questions about Crohn's disease & chronic pain

Oh golly, same w my GI told me
That he don't believe in pain medication so I told my primary doctor that I don't like him at all because they're not
Helping me w this constant pains so they referee me
To pain management and they finally got me an
Appointment on the 28th, I hope they would listen
To me
This time.. I feel you both! I just want my life back and I have a baby girl will be 2 years old, I need to get out
Of my bed to take care of
Someone when no one takin care of
Me being miserable w Uc take over my life
And I'm only 24.. Anyone help me
Out if pain
Management would
Help me and listen to me? Instead of
Ignoring
Me? I
Just write a journal daily to
Show my new doctor how it effect my
Life so you should do that too, how
Your pain scale out of 10 everydays.. Hope this
Help! I'd love to talk
More and help each
Others w same
Problems! Its really good to
Know that im not alone. thanks!

 
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