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Hello

Hi,
I was diagnosed with Crohns in 1990 i was 20 at the time, but i had been ill for about 2 years. I found it very hard to get my GP to believe i was ill.
I have had 2 resections and currently on Cimzia. Consiultant suggested to me last year to think about a stem cell transplant...but im too chicken to go throug with it...only because i was reading someones blog and it got to the point of killing the imune system off and there were no more posts...so not sure what happened...eeeks
Currently going through a bad patch and in lots of pain nearly everyday...i take TARGINACT for the pain and it seems to help.
I hate colonosocpy and dilation....i had 2 dilations last year....NEVER AGAIN.
I have the most wonderfull Crohns clinic here in UK. A great team are looking after me especially one Dr who is a complete gem and will do anything he can for his patients...but hes the one who did my dialtion...so hes now officially Dr Scary.
I have 3 teenage girls and a hubby...not working at the moment as i really cant cope with the pain at the moment.
Im quessing this year i may have more surgery and im a bit scared of having a bag...no one has said i would....im just scared of one...
Im so grateful to the NHS for treating me all these years and i have had first class treatment from everyone involved. I have never had to wait in A&E to be seen and crohns clinic are brilliant in seeing patients quickly.
Im a very lucky girl x
 

Angrybird

Moderator
Hi Piccie (again :)) Well it sucks that things are not going well for you at the moment :( Now you have mentioned Azathioprine in another thread and Cimzia but what other meds have been tried for you? What is your GI currently sorting, are you going to have to have more tests done or has enough been done already to indicate that surgery is coming up again?
 
I have tried Infliximab, Humira, 6MP, Methotrexate and steroids..im sure there is some other one but cant remember...i have reacted to them all apart from the Azo which my husband reacted to and the cimzia which is not doing much for me at all. Seeing my consultant in 3 weeks, if i can wait that long. He will then tell me what his next plan is. Another consult wants to operate but the other one wants that to be the last resort. He thought the dilation would help. But it hasnt. I think deep down i need surgery...i spent new years day in Spanish A&E due to sever pain and sickness which i couldnt cope with. So im thinking surgery is my only option....or carry on with the pain
 
Hello. How long can a person live with Crohn's without treatment?
My husband says he's had symptoms since he was 19. He is 47 now. He has had one test that says he doesn't have it. But now they want to do another test that is more thorough. He hasn't had the money to pay for it yet. If he's had Crohn's disease this long wouldn't have been diagnose already? Wouldn't they have figured it out by now?
 

Angrybird

Moderator
Hi Piccie, I would perhaps get onto the GI/IBD nurse and see if they can bring your appt foward as 3 weeks is a long time when you are feeling like this. I would say there is a risk that they may suggest another colonosopy so they can see how things have changed since last year, MRI's can pick up narrowing of the bowel but these are very expensive scans so they may not suggest this so quickly.... Let us know how you get :hug:
 
I will let you know how it goes and your right i should bring my appointment forward...last colonoscopy was Dec 23 with dilation so im hoping i dont need another one.
Ms concerned...i expect it is possible to have crohns and not get treated but i would imagine that he would have been in alot of pain at some point and needed help. Everyone is different and react to illness in a different way. Best get that test done and find out whats happening
 

David

Co-Founder
Staff member
Hi Picci! Welcome! :) If your doctor is suggesting a stem cell transplant, I suggest you start reading here. We've had some members who have done REALLY WELL with it and it's a very exciting treatment option. If you're eligible, it's something you should really consider and not let a single blogger scare you off. For all you know, they stopped blogging because they felt so good they decided to go raft the Amazon ;)
 
David i know your right,i shouldnt let bloggers put me off and your right they probably feel so good they are actually getting on with life....its still a frightening thing for me, im not sure why but im scared. I shall give it some thought though
 
hi picci and welcome to the forum, sorry to hear things are a bit crap at the moment. Being scared of having a bag is perfectly natural, and whilst I'm not wishing it upon you, having a bag changes a lot of peoples lives in a very positive way. I actually dont know much about the whole stem cell transplant thing so im quite intrigued, what is it?

hope you are feeling better soon and don't end up needing any more surgery!
 

David

Co-Founder
Staff member
Oh believe me, I'd be super scared to get a stem cell transplant. But if that was the best option for me and my doctor was suggesting it, I'd do it. But good god would I be scared. So I feel ya. :hug:
 
OOOH David
If i was 20 id just jump in and do it...im now 42 with 3 teens going through exams...i have a wonderfull husband who really looks after me...but thats it...no mum or dad or brothers and sisters to help out, so no support for my husband on my ill days...im allergic to most medicines and that scares me...just seems a huge deal killing off your imune system...infections are everyhere...or maybe im finding excuses not to do it...but i will have another word in Feb when i see my consultant
 
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