Hi fellow sufferers,
I was diagnosed in May 2007 with left sided colitis up to the splenic felxture and was put on steroids which worked well at high dose, I was also put on Pentasa granules, it seemed to be going ok till I got down to lower dose steroids and then I had a flare again when I got to around 5 mg or less of steroid. I was told to go back to the high dose of sterpoids again, am taking mesalazine enemas and Asacol. I also take omega 3 in high does, vitamin E, Vitamin C, Zinc, DHEA, MSM, psyllium husks and VSL#3 probiotic powders. I came down to around 5 mg of steroid and flared again and I have an 88 year old dad with cancer to look after and a 80 year old mother with dementia to deal with. I am at the point where I have tried both immuran and 6mp with extreme side effects and was "offered" tacrolimus, I id research and saw the incidence of side effects were horrendound very high, maybe 50 to 75 % incidence of them happening.
I am here for advice abouyt surgery, I am so low that I do not believe I can suffer any longer, I sweat badly, have bone pain, eyesight problems and skin problems when in flare up and I just have no will to live left. Apparently they believe I had this for 4 years undiagnosed. I know this must seem defeatest to you guys but I feel unable to fight any longer and am tired of life like this, I don't go out, am unable to eat many things and believe that it is not worth living like this. I am now on Asacol as I couldn't swallow the granules, they made me puke.
Any help in what decision I should take ?. I get very ill on the immuno suppressants and keep flaring when down to 5 mg of steroid. I have now been on steroids since May 07 with just a 3 week break before I broke again.
I don't know how you guys have managed to suffer so long and admire you for your fight. I am 44 and just feel beaten, depressesd and in great pain with suffering.
Please help if you can, I think I need to make a decision soon as I am unable to cope with the terrible suffering and lack of life.
Thank you in advance
Julian, Bristol uk