Hi Everyone!

[Rick62]

Being new to this site it's great to hear other people's stories, and how they are coping with this disease. I first knew I had crohn's back in 1968 when I had to go to A&E due to constant vomiting (I couldn't keep any food down). I had a bypass procedure where they gave me in effect a dual pathway near the start of the small intestine. Since then I've been told that I have further strictures around the same area but thankfully not needed further surgery.

Because of the site of my crohn's I seem to suffer a lot from excess acid and in 1994 I was rushed to hospital with 2 burst Duodenal ulcers. I avoid dairy foods (I drink lactose free milk), and have e.g soya yoghurts instead. I love fruit and vegtables but tend to get pain if I eat them. It's a little better if I remove skins first so it's possible in moderation.

I think probably my main problem now is that I'm finding it difficult to reduce my doseage of prednisolone. Everytime I try to reduce the dose I feel yuk!, perhaps it's because I've been on them so long my body can't cope without them. Any suggestions would be most welcome. Anyway, thanks for reading and what a great site.

Medication:

Prednisolone 12.5mg
Azathioprine 150mg
Ranitidine 300mg
Nexium 40mg
Multi-Vitamin
Iron

 

[Linney]

Pred, we can't live with it we can't live without it ! I hate taking the stuff but once I get down to 15mg the symptoms come back. Fortunately I don't suffer with sleeplessness on this dose (quite the opposite in fact) and that weird spaced out feeling isn't too intense so I manage. I am currently waiting to go onto Remicade so I am hopeful that Pred will be a thing of the past, and I can get rid of some of the weight (sorry to all who can't put any on, I never lost any even when I spent all day in the loo !) I also avoid dairy (have soya products) eat little veg (all peeled even tomatoes) and fruit except melon is a definate no no ! Good luck

 

[Crohn's 35]

HI Rick, Welcome... you have had alot of ups and downs, but as Linney says, Pred is a love hate drug. The best thing to help nowadays is remicade or Humira or Cimzia. A lot of people are in remission from it. I would talk to your Gi about your options, Pred is an evil drug and has so many side effects.

 

[Astra]

Hi Rick
and welcome

Yes, it's evil alright! But, it's excellent for healing massive flares and saved my life 4 months ago! Everytime I tapered, I got symptoms back too, but just kept upping it, then tapering again by 5mg each week, I persevered and finally did it, took 4 months!
glad you found us, lots of support here, any questions, just fire away
lotsa luv
Joan xxx

 

[ChefShazzy]

Welcome, Rick;

Maybe you can do a really slow taper of pred and that would help? I see that you are on 12.5 mg... A lot of people get issues once they taper below 20mg. How much are you tapering each week, 2.5mg?? Maybe you can go by 1mg a week, that might help reduce the side effects of pred withdrawal.

 

[Silvermoon]

Sorry I missed this post... but a belated welcome anyway, Rick! :redface:

The support here is absolutely amazing! Even if you are not one to post in the Support Forum about what you are going through, just reading the overwhelming support the group gives each other can be quite helpful (I have found anyway... just reading reading the encouraging words others write when i am having a really bad day does wonders for me).

Sounds like you have been around this disease for quite a while, so looking forward to hearing more of your experiences as well!!

Take care!

 

[DustyKat]

Hi Rick and :welcome: