Chronic Pain with Crohn's Disease: Seeking Advice and Natural Remedies

Crohn's Disease w/ ileostomy, 48 yo woman. Having constant upper back/abdominal pain, which used to happen only with a blockage, but now occurs every time I eat. Have had small gut dilated twice in last three months, but no relief. Doctors want to do surgery and cut out 10 cm below my 'willy' (stoma), then start remicade or humira. Don't want to do either. Anybody out there with similar experience or have you tried the drugs I mentioned? Also, any natural remedies would be great to know about. Have done pretty well for the past 17 years since my ileostomy surgery, but haven't felt well since August after a trip to Mexico. Thank you in advance. Any info or suggestions much appreciated. Patty

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Hey pattycake i also have crohn's and illeo/ am having middle back pain and am on a course of HUMIRA am having my second injection tomorrow well u get 4 in one go quite painful stuff i am really hping this helps with the back probs my specialist asked always about my back after my 8th op last year have had real bad pain in the back now they ask am i addicted to pain killers

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I said u fix the back i dont need pain medication then prob rehab lol prob REHAB... Have u had a gastroscopy?good luck darl i always thought havin illeo i would never had any probs i wonder wats next hope u gey fixed up sooner rather than later cheers mare from Australia  

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oops mooza

Hi there Patty

I alos have crohns and ileostomy and backpains.  I am also taking remicade every 8 weeks.  My backpains are due to Anklosing spondylitis dur to being on massive amounts of prednisone since my diagnosis in 1976.  The remicade is helping the crohn's (at least thats the assumption since I have not had a flare up since 2001.  Now whether that is due to the remicade or the fact that they removed alomost 200 cm of my small and large bowell.  I have become dependant on pain medication for the backpain (duragesic patch) if you can avoid it do so because it is very addictive, but due to all my problems because of the steroid side effects That is all I have been able to do. so good luck

hope this helps

Jeff

I took a series of Remicade infusions before my colectomy surgery (had UC). It worked well at first but after 4 -5 infusions the UC won & I had to have my colon out. You mentioned your problems started after a trip to Mexico, that immediately made me think of the possibility of a parasite in your bowel. You may want to consult w/ your doc & ask about doing cultures to screen for bugs. Good Luck.

Hello and thank you for your helpful email OVER a year ago! I'm ashamed that I never responded and thanked you back then! I don't get on this site much, but think maybe I should for help with Crohn's related issues. I appreciate your suggestion and comments. I ended up having surgery last October and other than sore skin immediately around my 'Willy', I'm doing pretty well. Did try several Remicade infusions, but started displaying signs of Multiple Sclerosis, so not sure I will continue the Remicade anymore. Seeing neurologist in S.F. in a few weeks. Hope this finds you well. Take care of yourself. Pattycake

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Mooza and thank you for your helpful email OVER a year ago! I'm ashamed that I never responded and thanked you back then! I don't get on this site much, but think maybe I should for help with Crohn's related issues. I appreciate your comments. I ended up having surgery last October and other than sore skin immediately around my 'Willy' once in awhile, I'm doing pretty well. Did try several Remicade infusions, but started displaying signs of Multiple Sclerosis, so not sure I will continue the Remicade anymore. Seeing neurologist in S.F. in a few weeks. Hope this finds you well. Take care of yourself. Pattycake

Hi Jeff, and thank you for your helpful email over a year ago! I'm ashamed that I never responded and thanked you back then! I don't get on this site much, but think maybe I should for help with Crohn's related issues. I appreciate your suggestions and comments. I ended up having surgery last October and, other than sore skin immediately around my 'Willy', I'm doing pretty well. Did try several Remicade infusions, but started displaying signs of Multiple Sclerosis, so not sure I will continue the Remicade anymore. Seeing a neurologist in S.F. in a few weeks. Hope this finds you well. Take care of yourself. Pattycake

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   your willy hahahahaha i hav'ny brrnon for a long time either was on humira last year wen i did the reply/ oh well just started the humira in aug 4/6/2010 lolol bloody crohn's grrrrrrrrrrrrrr