Crohn's Disease Forum » Your Story » Newbie and suffering

04-01-2012, 02:59 PM   #1
New Member
Join Date: Apr 2012
Location: UK
Newbie and suffering

I was diagnosed with Crohns in 2003 when I had a flare up. After that I remained well and was never better when I was pregnant in 2005. In 2006 I had a flare up which was controlled almost instantly with Prednisolone. I have had a few flare ups since all contolled with Prednisolone.

The most recent flare up was in Feb this year. I was put on Prednisolone reducing eventually to 5 mg for the last 3 weeks. Majority of this time I was sympton free until the end of last week and over the weekend when my smptons have been getting prgressively worse. At the moment I have severe cramping running to the toilet regularly, pain in my shoulder and my hip and down my leg, flu like symptons (shivery, aches and spiking temperatures). I am currently on 2g Pentasa granules daily and have been for sometime.

Tonight I feel like rubbish with hardly any energy but I know I have to go to work tomorrow as I have a meeting which cannot be missed and right now I know that it is going to be torture to get through. I will ring my GP first thing in the hope to get an appointment tomorrow afternoon.

I am not keen on going back on Prednisolone as I am only off a course of these. Anyone any ideas of what else could be taken?
04-01-2012, 06:47 PM   #2
Senior Member
Join Date: Mar 2012
Location: Australia

My Support Groups:
Entocort....Iv been on Pred many times, and am going to have to stay on it (only 25mg thank GOD cos I wasn't handling the higher doses and tapering, which is normal apparantly, even to develop psychosis), but once I wean and am on humira and 6mp only, if it flares, I plan to ask for entocort. It's costly, but it's a steroid which works the same way as Pred on your bowels, without half as many side effects. If you've only just weaned though, it's common to have bad side effects, coming off of Pred, so maybe speak to your GI, you might not need to go back onto steroids, just an imune suppressant like azathirorine, which works well for many people with crohns.
Best wishes, hope your feeling better soon xoxo
Diagnosed crohns disease 6 yrs/candida
Temorary illeostomy, 70+cm bowel recsection, ulcerated bowel...currently stricturing.
Meds: failed Infliximab, azathiroprine
Currently on long term prednisone,6mp,humira, nizoral, and vit supplements,b12 shots.

Love the forum
04-01-2012, 09:22 PM   #3
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi clarabella and welcome to the forum

I don't have any specific advice but wanted to welcome you. I'm really glad you're getting an appointment with your doctor soon. Please keep us updated as to how you're doing.

I wish you well!
It's good to be back
04-02-2012, 12:56 PM   #4
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hello and welcome to the forum What you're experiencing could be the tapering off the steroids although the running to the loo could be indicative that the Pentesa can no longer keep things under control on its own. Have you been able to speak to your GP today?

Hope you can be feeling better soon


DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
04-04-2012, 04:53 AM   #5
New Member
Join Date: Apr 2012
Location: Singapore
Take a Codine or panadol to get you through your meeting first. Then proceed by going to your doctor or calling him or her. Take care and all the very best

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