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New and worried

D

Davey

Hi.

I'm new to forums but will give it a go at explaining what's going on. Sorry if I struggle with the terms and hope I don't waffle on to much.ha.
I got diagnosed with Crohn's disease in 2006. Until may 2013 I hadn't experienced many problems at all. Since may I have gone down hill and don't know why. I had a lot of pain and passing blood so the doctors put me on azerthriaprine and prednisone.

In September my symptoms got worse I got sepsis and had a series of fistules which cause them to operate 4 times and put some setons in place and a long stay in hospital. In that time I got took off the azerthriaprine as it wasn't working. In November I started some humira injections every two weeks but I have still no joy or relief. The only bright side is I haven't had another fistula.

Last week I had to return to the consultant to see if the humira was having an effect but after having a colonoscopy have found that it's still seriously infected with the Crohn's throughout the colon down to the anus. He has now told me that he will double the dose of humira to once a week but if it doesn't improve in the next 4 weeks that there will be no alternative but to remove my colon and give me a permanent ileostamy bag. I'm now really worried and don t want to go down that route and have a permanent bag but they have tried everything. What do I do apart from cross my fingers and hope the humira works?

Nice to meet you all

Davey
 
G

grt73

Location
aylesbury,
Hi Davey
Welcome and sorry to hear you are having a crap time at the moment.
Try and stay positive, I know that's easier said than done, the meds may well kick in and turn things around, one thing for sure is that worrying about it is not going to help your recovery! The thought of having an ileostomy is daunting whether it be permanent or temporary. I was scared to bits when I had surgery but I woke and found I had no option other than to have one. We still don't know if its temporary or not yet.
Months passed and I got and am still getting used to it. What's more important though is the way its given me my life back, the old crohns cramps and chronic D have gone, I have managed to put a bit of weight back on and am overall feeling a whole lot happier than I did.
It's a big thing to deal with mentally but we do, you get up dust yourself down and wait for the next drama!
Try and weigh up the quality of life you have at the moment and the way you used to be before crohns. Even if you could achieve somewhere Inbetween I would have bitten its and off, having a bag has given me exactly that.
Good luck and don't rush into making the decision
 
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D

Davey

Thankyou for the advice really appreciate it. Sorry to hear what you have been through too. It helps me to hear that the bag has brought your standard of life back. I have the stoma nurse coming round this week to explain the process so will have to see what she has to say.
 
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