My story

[shazamataz85]

my story

hi all
newbie here currently going through a flare up
started get ill in 2000 after 3 years of every test imaginable finally got a diognosis of crohns .
tried every medication going nothing seemed to work then after my first ct scan had resection operation ( 15 inches of bowell removed ) felt fine for about 6 months then started up again back on every medication my consultants suggested still didnt work.
so my consultants asked me what i think they should do with me and to be honest lost total faith in them so i said goodbye and would manage myself and for 6yrs no medication and no hospital visits or addmissions all seemed to be going well.
until the 18th of december 2011 got admitted to hospital and told after a ct scan got 3 strictres and would most prob need surgery very soon stayed in hosp till the 22 of december and discharged myself as couldnt be in hosp over xmas couldnt do that to my children scraped through xmas ( wich turned out to be fantastic ) but had to go hospital on saturday to be told all they can do for me is to put me on steroids wich i disagree with as in the past steroids had a bad affect on me i dont like the side affects or the health reprucusions that come along with steroids . i know some people would agree / disagree. and im
not promoting the non use of steroids just telling my story


shazamataz85

 

[chrisnsteph1022]

Welcome to the forum. How did you manage for 6 years? Were you in remission, or were you able to control it with diet?

I feel the same as you about steroids. If it came down to steroids or surgery, I'm honestly not sure which I would choose. Probably surgery. I really cannot tolerate steroids (though Entocort I don't mind-just against pred).

 

[shazamataz85]

Hi chrisnsteph 1022
well i just managed myself with diet and of course still had bad days where i spent all day or night in the bathroom and didnt eat when it was quite bad just didnt eat for a few days then start life as normal . and if i was to choose between surgery and steroids i would pick surgery as well

 

[Angrybird]

Hello and welcome to the forum :bigwave: I am on the pred and the moment and whilst I am not thrilled about it I am happy that it got me through xmas and new year's - I was able to eat without worrying about being sick within half an hour. I had my op in Sept and then the worst flare up I have experienced in years a little over 10 weeks later.... therefore I am still 'bitter' enough about it to say that I will take a tablet over a knife that isn't even going to do the job anyday. I may get to a stage again when I will look at surgery more objectively but right now I just see it as another way to get even more scar tissue that is going cause me grief at some point in the future. I do think though that you must do what you feel is best for you. I think that I have an easier time of it than most on steroids - I only have to deal with a few spots and an increase in appetite and weight (although so far I have been on them for 3 weeks and have actually lost a couple of lbs), some poeple really do have a horrendous time of it. What is happening now for you? Can you recall all the meds you have been on so far? You never know we might be able to come up with one you haven't tried yet

 

[shazamataz85]

hi angry bird . ive been on predisalone, methotrexate , azathropine , pentasa ( please forgive spelling mistakes) also had imixiflab .
now im back at the hosp they told me that in the 6yrs ive been with out meds that theres new meds on the market so will wait and see what theyve got to offer.
im glad steroids work for you its unfortunate they dont agree with me had taken them in the past and they did work to start with but then they stopped working and at 1 stage made me worse and after a long disagreement with my consultant he came up to me and said i was right to take myself off them . currently got 3 strictures wich is causing lots of pain and the lovely gurgling cant tolerate food so on jelly and soups at the moment but like in the past the signs ive got are a start of a bad road i know theres more signs to look out for hopefully they wont appear. for the past 6yrs ive managed to keep my weight at a healthy level.

shazamataz85

 

[xJillx]

Hi shazamataz85 and welcome! I am sorry you aren't feeling well and are back in the hospital. You've tried many of the treatments, but one biologic you haven't tried is Humira. I wonder if this will be an option your GI suggests. Some people have had some great results with the drug. If you try it, I hope it works well for you.

Please keep us posted! Hang in there!