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Meds stopped by doctor and no treatment.

Mon, August 27, 2018 4:20 AM

Recently diagnosed with Crohn's at the ripe age of 40. Was taking Octasa (mesalazine) 400mg daily and 5mg Prednisolne when needed for flaure-ups. I've been managing quite well until now my consultant decides to stop all medication. I've had no mediaction for over a year now and I'm suffering quite bad with IBD and fistulas. Doctors will not give me any medication as consultant has added notes to my records not to prescibed anything. The prednisolne (5mg over 3-5 days) was the only drug that seemed to help me greatly and would restore my energy levels when I felt like hell in a hole. Doctors won't prescribe it to me because of side effects and not a treatment for my condition. But when I say it helps me get through flare ups and I feel well enough to get out of bed, my doctor isn't interested and say that is not good for me. All of the information I have on IBD and Crohn's say that prednisolne is known to help many people with this condition, but my doctors say otherwise. Don't know where to turn now and no help or treatment from doctors other than take Paracetamol. I'm now feeling more depressed and stressed by the wasted visits to to see the doctor's just to be ignored.

Any advice anyone ?

carluk
Joined Aug 27, 2018

Sun, September 16, 2018 9:10 PM

Reply posted for Hutchy.

Diet and stress are now helpful but do not cause a flare of the disease. Certainly if you are under stress your coping mechanisms will not be fully operational. IBD was thought to be a psychosomatic disease in the 1950's. That was largely disproven.

rproodmd
Joined Sep 15, 2018

Sun, September 16, 2018 9:06 PM

Reply posted for carluk.

Steroids have their place for short term treatment of flares. If you are needting to take steroids on a regualr basis your disease is not under control. Steroids do not maintain remission. If your gastroenterologist will not escalate treatment find another physician. Steroids have long term down sides including cataracts, bone effects and effecting joints such as the hips and if you are prone to be diabetic you may be diabetic on steroids.

rproodmd
Joined Sep 15, 2018

Sun, September 16, 2018 12:48 AM

Reply posted for carluk.

Look in to medical marijuana if it is legal where you live(or if you don't care about legality...). Also, if you don't already, start a food journal and record every thing you eat and drink, and when. You should also look for a new Dr, this one doesn't seem to be very concerned about your health. Diet, and stress are two of the biggest contributors.

Hutchy
Joined Sep 16, 2018

Mon, September 03, 2018 9:23 AM

Reply posted for carluk.

Prednisone was the only thing that helped me and I was on it for a long time but the side effects are awful. I had weight gain, osteoporosis, cataracts and when I went off it I broke out in hives from head to toe. None of the other medicines worked.

charbs
Joined Oct 31, 2016

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