Hi new to the site

[Eilidh]

Hi all, we'll was diagnosed with Crohn's disease in 2004 after 2 years of hell! Started on Pentasa and Mebeverine was on and off steroids all the time, last bad flare up was in 2008 tried IV steroids starting @60mg but didn't make any difference until 3 weeks later, was given IV Infliximab but took severe allergic reaction (very scary) was told if the steroids didn't start working surgery was my only option, being 26 and newly married this thought terrified me. Was prescribed Azathioprine and haven't looked back. Having a wee flare up the moment nothing too bad, started 8 week course of steroids today (last time I needed them was 08) to nip it in the bud. Hate the jittery,whizzy feeling they give me, feel like my heart is racing and need to run a marathon to get rid of the energy!

 

[Angrybird]

Hello and welcome to the forum

I am sorry to hear the tum is acting up again on you. What dosage have to been on for the Aza, will the plan be to increase this now you have flared on it or is another maintainence med being recommended? Are you able to get in contact with your doc easily to let them know about how you are feeling on the steroids - is it prednisone? Also have they have put you on a calcium supplement whilst you are on these?

There is plenty of helpful info and support here so do have a good look around.

AB
xx

 

[Grumbletum]

:welcome: (waves across the water)
Hey there! Very glad you made it here, but sorry it's cos you have CD. This place is a godsend and I would have been lost without it when I was first diagnosed. I hope you can get your current flare under control without too much hassle. Do the consultants go over to Barra, or do you have to travel to Uist and/or the mainland?

 

[annawato]

Welcome Eilidh, sorry to hear about your flare up but welcome to this wonderful group.

 

[Eilidh]

Hi everybody. I have to travel to Glasgow to see my consultant who is fantastic. I see him every 6 months but I have his phone number and whenever I have any problems or concerns I just phone him. Due to see him again in April but because of current flare he says he might want to see me sooner. Thankfully it is not a bad flare, I just wanted to nip it in the bud because I now have a 2 year old wee boy, if my flare was any worse I would have to go to hospital in Glasgow, last time I was there for a month and I couldn't cope with being away from the wee one that long!! Currently on 125mg of Azathioprine, was 150mg but have steadily lost 17kg over the last 18 months which was weight I had piled on from my last 8 month course of steroids and baby weight so had to reduce as the dose is based on weight. I have been feeling great for 3 years so disappointed this has happened. I actually did a google search to see if any one else had this horrible 'high' feeling I get with Prednisone and found this site, glad I did .

Thanks for all your replies, do you live in Uist Grumbletum? Do you Have to go to the mainland to see your Consultant? I go to the Southern General and Consultant is Dr Suzuki, he has been my doctor for 5 years now and we get on great, I think it helps when you have a good friendly doctor it helps when you have to go in there and go into details about your symptoms!! I feel very comfortable talking to him about it. My best friend has UC which means I have someone very close to me I can talk to, my sister has also just been diagnosed with Crohns and just had surgery.

 

[Grumbletum]

Hi Eilidh. Yes, I'm on South Uist. I go to the Western Isles Hospital in Stornoway or to Raigmore in Inverness. Depending what's happening, sometimes the consultant from Stornoway comes over to Uist. I know what you mean about leaving the wee one - except mine is 17 now!! I went over to Inverness for a couple of tests and they recommended surgery and did it there and then, so I was in for three weeks.
Hope you sister is doing well after her surgery.