Crohn's Disease Forum » Your Story » It's been a very long time but I'm back here again

01-13-2019, 06:14 PM   #1
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EvieBaby's Avatar
Join Date: Mar 2013
Location: Bolton, United Kingdom

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It's been a very long time but I'm back here again

Hi everyone,

I feel like I'm a new member here I haven't been on in such a long, long time. So I thought it best to reintroduce myself because I can see I'm going to be on here a lot more in the coming months.

I was diagnosed with crohn's in 2005 when I was 26, and now I'm 39 and a heck of a lot worse than I used to be. I've had a lot of things going on in my life, but I'm now at a point where I feel like this disease now has control of me rather than the other way round.

Last year I switched hospitals because the one I was being seen at became less than useless, they just stopped being interested in any problem I had and when I used to call them for help they just stopped replying. I've been going to Manchester Hospital since last April and things seemed to be going ok until recently.

I've been on infliximab for about 2.5 years, and I've repeatedly said that I don't feel it's working for me but there doesn't seem to be any option available to me to change this, despite having talks with the IBD team who mentioned other treatments available. For the last 4 months I've been intermittently really poorly, waking up absolutely drenched in sweat, terrible control on my bowels, losing blood, being excessively tired, not able to eat etc, but my GP kept putting this down to urine infections and gave me antibiotics. Because of this I've not had my infliximab infusion since September last year.

I've seen the IBD nurses at the clinic and they think I should see my GP for further investigations, my GP thinks my problems are crohn's related and should be dealt with by the hospital. In the meantime, no one is helping me, carrying out any tests, and I'm stuck at home alone with a 10 year old who I still have to care which is incredibly difficult. I've had to take more time off work which isn't going down very well, I'm finally a victim of the people who think that because I 'don't look ill' that I'm making it up.

I decided I wanted to come back here because I feel like I just really need to talk to people who know exactly what I'm going through, who have experienced what I have and can support me, and I can support them, and get through this really crappy time!

This post was never meant to be this long!
01-13-2019, 07:04 PM   #2
Forum Monitor
cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Hi Evie,

I read the whole thing and it wasn't that long. I'm sorry for what is happening, it sounds like you are being fobbed off. Is there any way to consult with another GI? You know your body best and I hope you can get another doctor to delve further into this. It really sounds as if you need a different medication regimen. you have my support, come here to talk any time.

Best Wishes,


Crohn's Disease Forum » Your Story » It's been a very long time but I'm back here again
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