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Ulcerative Colitis
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Posted 10/6/2009 7:12 PM (GMT 0)
hi everyone, i often read read the posts hear but its been a while since i posted myself, hope everyones well. here is my current situation

i was doing really well up until august when things started to go wrong, more bm's, blood and urgency gradually got worse. i had a colonoscopy on aug 27 and that just made it much worse, it always does. was given 30mg prednisolone a day but it didn't help, so was upped to 40mg a day, but still had around 12 bm's a day with lots of blood and lost a lot of weight. i was admitted to hospital for a week where i was on iv steroids for 5 days and was given iv potassium. that got me back on my feet so to speak and i'm now on 40mg prednisolone a day and having around 6 bm's but with much less blood.

when i was in hospital the doctor said i should consider surgery because i've had uc for 14 years now (i'm now 28) and the cancer risks go up etc. this is my first severe flair since i was diagnosed, i generally have 1 minor flair a year which can be controlled with pred enemas. i'm currently on 150 mg of azathioprine. asacol and the like dont seem to suit me at all.

its a tough desicion to make and i was just looking for other peoples thoughts?

how long before enough is enough?

thanks for reading, rob

Posted 10/6/2009 7:37 PM (GMT 0)
I personally won't consider surgery until all the meds have failed me and my quality of life is suffering or until there is a real cancer threat (biopsy results showing cancerous cells).
Posted 10/6/2009 9:51 PM (GMT 0)
That is the million dollar question for all of us who chose surgery over continued medical treatment. For me the decision was made when I reconciled that I was steroid dependent and I became more fearful of long term side effects of prednisone than I was of surgery. Honestly, like many who have walked before me, I wished I would have surgery sooner rather than later. However, you are at a different crossroads as you have other medications to try BUT you have also had the disease for 14 years. This is a tough call and probably deserves more thought and research.

Sue
Posted 10/7/2009 12:26 AM (GMT 0)
i waited out 8 miserable years before having surgery, and like most wish i would have done it sooner.
To me it was better to get better and not deal with all the meds and the possible side effects. It ws better to beat the disease.
But its a personal choice and you may be able to find a combo of meds that keep you in remission.
Good luck
Posted 10/7/2009 10:24 AM (GMT 0)
thanks for the replies! smilewinkgrin

it seems like theres no other meds to try. i've tried asacol and that made me feel terrible. can't get remicade on the nhs. now even prednisolone doesn't seem to be working like it used to. azathioprine was helping, maybe it will help more now they've upped the dose to 150 mg. 3 months ago surgery was the last thing on my mind but hey ho thats the way this thing works 

Posted 10/7/2009 5:59 PM (GMT 0)
thanks rob for you hey ho. it makes me feel more confident. i think that i have a slighly wonky colon with a funny bend to it. it doesent help my situation. i am experimenting with this diet but i still had a slight flare which i am treating with a pred enema. well at least i finally got some medical advice from the docotors. it was so hard i really had to push, i could have ended up in er. im lucky. the diet has helped in that, i had no medical attention for years, no scopes and only asacol, gps would not perscribe the meds. ive been though a medical night mare, crying that i couldent receive any help, sorry just a rant. the diet has helped, no pain no urgency, no fevers no joint pain, which is what i was getting, and with no medical help i had to try something, any way i think that surgery can be a better option if meds are not working. I did ask the doctor about it but this is what she said dont do it unless it is absolutly nessary, surgery can be hard and although some are fine others are not. she gave me an example of a 19 year old, she said said she had surgery but had complications and the bags started leaking. the strage thing is that the doctor told me she had two bags, i thought you would have 1 so im confused about that. oh well i know you will do the right thing for your body. if you want any diet advice i can do that, i had more diet experince than what the doctors were helping me with, stupid nhs :(
Posted 10/7/2009 6:27 PM (GMT 0)
she may have had a bag for her urine.
Posted 10/7/2009 7:57 PM (GMT 0)
While in the hospital you have 2 bags, one is the ostomy the other is a catheter for urine. This is normal and every surgery patient has this. But it is removed once the patient can get out of bed on their own.

Sue
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