Pancreatitis attacks from Crohn's Disease

[Jenny06xx]

Hi all I'm Jen 25 married with 2 girls 7 and 4
I'll try an keep this short lol
Had my gallbladder removed 2003 an had pancreatitis since then 6 years of hell with constant diarrhoea and mild stomach pains which hardly bothered me as I was controlling my diarrhoea with codeine 30 mg up to 8 per day.
This last year my pain became unbearable I have been told for 7 years I had ibs I kept going to the hospital to be sent home hours later with co codamol an blood test apparently normal in total 9 times since jan this year My last visit still got me sent home but I had my gastroenterologist appointment a day later he took one look at me and admitted me to hospital where I stayed 3 weeks and got diagnosed with crohns disease after a ct scam and colonoscopy. I was do relieved to finally know what the pain an diarrhoea were from and told my previous surgery and pancreatitis attacks are all symptoms of crohns also . So now I'm on prednisone was 40mg tapering now at 25 mg and reducing 5 mg per week I've noticed that at my now dose my pain is returning even though im taking 400mg per day tramadol 8 c x paracetamol 8 x buscopan plus all vitamins etc, the diarrhoea never went away I'm still loosing weight I'm 7 stone at the moment not good!!! I'm nervous and shaky all the time getting no sleep am exhausted and have 2 young children to look after I don't have an appointment till the 29th nov an I really don't know what to do I avoid eating as I know it causes my pain to get out of control I'm living on soup and ensure plus and calshakes it's the pain that is driving me mad I can't take anymore . Do any of you have any advice for me is there anything I can do other than go back to hospital

 

[Jenny06xx]

Anyone ??

 

[Rebecca85]

Did you get any relief when you were at 40mg of Pred? If so, you could phone your doc and ask if you can increase your dose to tide you over till your appointment. If not you probably need to go to hospital. At your appointment you also need to ask about long term medications, something to stop you becoming ill again.

 

[Dexky]

Jenny, I wish I could help! My son was quickly helped with pred early this year. There are several members who have symptoms again when they drop below a certain level. I think Rebecca has the best idea. If the GI can't see you sooner, perhaps he'll let you up the dose to see if the pain responds. Is the lack of sleep due to the pain or the pred? We were told to give it to EJ early in the morning. Good luck!!

 

[Jenny06xx]

Thanks both for your replys.
The lack of sleep is a new one for me and I'm sure it's a side effect of the pred also night sweats.
I'm managing slot better today as I haven't eaten for 2 days luckily I've god loads of ensure plus drinks on hand yuk but needed ! I think your right about the pain coming back due to decreasing pred because also the noises from my bowels are back so I will not reduce my dose tomorrow as I am supposed to an I will phone my gi on Monday to ask what to do. Fair play the tramadol are fantastic they make you feel a bit weird but without them I know I'd be back in hospital on morphine again.
My gp said I'm going to start a long term imunosuppressant does that mean anything to you all ? Not really sure what to expect
Thanks Jen xx

 

[Rebecca85]

Yup, he probably means azathioprine or 6mp. There are a few of us here taking those (myself included). Although immunesuppressant sounds a bit scary, since the immune system is usually overactive in Crohn's, it seems to balance things out rather than actually reduce your immune system.

 

[Rebecca85]

Forgot to say, check out our wiki if you haven't already done so www.crohnsforum.com/wiki/crohns-disease There's loads of information on meds and tips for dealing with the disease.

 

[Squadinho]

The lack of sleep is a new one for me and I'm sure it's a side effect of the pred also night sweats.

Yep, that sounds like a normal Pred side effect.

 

[ameslouise]

Oh, yes the night sweats! They are lovely!

Good luck with the new meds - I was terrified of going on an immunosuppresant. I have been on Humira for 6 months now and haven't had any increase in illness, colds, etc. I agree with Rebecca that I think it brings the immune system back to "normal" in those of us that have overactive immune system.

- Amy