Confused

[Lena]

Hi All,

I'm sooooo confused. I was diagnosed in Jan 2008- I had flare up and spent 3wks in hospital. Since then my whole world became one 'sick life'. I've spent the last 3yrs on 3000mg pentsa & 100mg azathioprine. I get chest infection all the time, someone has to sneeze and I've got it, everything I eat bloats me, my right side hurts all the time and at least twice a week I have spasms that paralyze me for 5/10 mins coz the pain is too much and I'm always always tired I could sleep for days.

I have told my doctor this but he says I need to deal with it sends me for an mri then sends me a follow appointment in 6mths time to ask how you feeling? In which I want to reply (excuse the pun) like shit, literally.

But when ever I read about crohns everyone goes to the toilet yet I don't go. for days, sometimes for 2wks. As a result, I get grumpy and argue with everyone, and no one understands... I love having 'poopie' days they are the best days ever.

So what do I do? Eat nothing? I know no two people with crohns are the same but I need to eat something... I'm just a baby (32) I'm too young to be taking pills left right and centre. I've read about ppl coming off their meds I wanna come off them all and be healthy again. I hate not being able to eat properly I love food...

I wont lie I am scared. I'm scared that they're gonna start cutting me up soon then I'll never be able to have a normal life...

I just want it to go away- is that so much to ask for.

 

[xJillx]

Hi Lena! I am sorry you are feeling so poorly. I don't like that your doctor is dismissing you and your symptoms. I am not sure how your healthcare works, but are you able to switch doctors to get another opinion?

I know taking medicine is a bummer, especially being so young (I am 27). But please don't stop taking your medication without speaking to your doctor first. I have read so many stories of people regretting stopping their meds, because it caused their disease to progress rapidly. I don't want to see that happen to you.

 

[Lena]

Hi Jill,

Thanks for your reply ...

I asked my General Practitioner about 18mths ago that I wanted to be seen by another doctor, but this is England and all hospital are pants!

However, I wrote to my General Practitioner (not my crohns doctor) this week asking him to refer me to a doctor who specializes in Crohn's as I feel that I entitled to get the best possible support and advice. In fact, my neighbour told me that less than 5miles away from where I live is St Marks Hospital (Harrow) which is a national and international referral centre for intestinal and colorectal disorders. So I've pretty much demanded that I get sent there to see a more compassionate doctor than the moron I've had to deal with for 3 years!

What are your symptoms like? How do you cope?

 

[Paddy]

Lena

I was referred to St marks in harrow and they were great, keep demanding to see them and if you live so close make sure you continue to see them. I live up north so had one appointment and had to have their suggestions fillers up locally. Was still very useful though. Dont take rubbish from your own dr either!

Good luck
P

 

[AshleyElaine87]

I had the same thing happen. I ended up having a resection, and I still don't go to the bathroom, but I feel a lot better! I had to fire two of my GI doctors and finally found a good one. Keep fighting for yourself!