Upper Back/Abdominal Pain

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pattycake

Crohn's Disease w/ ileostomy, 48-year-old 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 the 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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mooza

Hey Pattycake, I also have Crohn's and ileo. I am having middle back pain and am on a course of HUMIRA. I am having my second injection tomorrow. Well, you get 4 in one go. Quite painful stuff. I am really hoping this helps with the back problems. My specialist always asks about my back after my 8th op last year. I have had real bad pain in the back. Now they ask if I am addicted to painkillers. I said, "You fix the back, I don't need pain medication. Then probably rehab. Lol, probably rehab... Have you had a gastroscopy? Good luck, darl. I always thought having ileo, I would never have any problems. I wonder what's next. Hope you get fixed up sooner rather than later. Cheers, Mare from Australia. Oops, mooza.

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jeffhucko
Hi there, Patty.
I also have Crohn's and an ileostomy, as well as back pain. I am also taking Remicade every 8 weeks. My back pain is due to Ankylosing Spondylitis, which is a result of being on massive amounts of prednisone since my diagnosis in 1976. The Remicade is helping with the Crohn's (at least that's 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 almost 200 cm of my small and large bowel, I'm not sure. I have become dependent on pain medication for the back pain (Duragesic patch). If you can avoid it, do so because it is very addictive. However, 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.
bamatex

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 with your doc and ask about doing cultures to screen for bugs. Good luck.

pattycake

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

 
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pattycake
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 a while, I'm doing pretty well. I did try several Remicade infusions, but started displaying signs of Multiple Sclerosis, so I'm not sure I will continue with the Remicade anymore. I'm seeing a neurologist in S.F. in a few weeks. Hope this finds you well. Take care of yourself. Pattycake
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 neurologist in S.F. in a few weeks. Hope this finds you well. Take care of yourself. Pattycake
mooza

Your willy hahahahaha. I haven't had a flare-up for a long time. I was on Humira last year when I did the reply. Oh well, I just started the Humira on August 4, 2010. Lolol, bloody Crohn's. Grrrrrrrrrrrrrr.

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