Hi Folks..........And Help!

[dablocks]

Hi, my name is Alex and I was diagnosed with Crohn's on the day my daughter was born in 1994.

Since then I have suffered what I would call mild Crohn's symptoms compared to most other people here and have in fact always felt a bit of a fraud as I had it relatively under control with no medicines up until now.

Sure, I have had a wide selection of joint pains, headaches, fatigue and cramps over the years with the main problem being the sudden rush to the toilet but I have always generally either been able to get on with whatever I've needed to do without too much concern or else they have subsided over time.

I've lost count of the number of X-rays on my back, knees, neck, hips etc without showing anything untoward.

So far so good until recently however when I felt within myself that things weren't quite right, possibly due to a prolonged period of stress and poor maintenance regarding food and exercise.

My aches, pains, toilet dashes and general fatigue have became far more intense and frequent and after a long break from the Crohn's clinic I have been readmitted.

My big concern is that I have had test results back which show a Calprotectin reading of 850 as against the norm of 50 and this has thrown me for six in that it's an enormous leap compared to previous levels and has me very worried.

Has anyone experienced this at all?

In addition to this new pains are appearing literally every day.........thumb joints, right hip, shoulders, a vertebra in my neck which causes left side body pain and the most blinding headaches, lower back pain, difficulty in swallowing and discomfort after eating.

Essentially these are all the classic symptoms grabbing hold at the one time I think.

Anyway, it's definitely medicine time now but I struggled in the early days with Pentassa as the side effects for me were too severe so does anyone have any thoughts, as the only alternative my doc has given me is Mesalazine?

Finally, it's good to be on board here now, I should have hooked up long before as there are a lot of inspirational stories here, and I look forward to sharing experiences.

 

[beth]

There are lots of alternatives: azathioprine, methotrexate, the biologics.

While it sounds like you have mild direct symptoms the peripheral joint pains/fatigue/etc are a marker it's not that mild. I'd be prompting the docs to get your Crohn's under control as soon as possible, and ask them about the drugs I mentioned above if they don't bring them up.

 

[Astra]

Hiya Alex
and welcome fellow Brit

Sounds like you've got some inflammation going on there, time to address it, go back to your gastro, get a colonoscopy.
calprotectin is a faecal biochemist test for IBD, which is relatively new and seems to be done instead of a scope, but have a scope just to be on the safe side.
And Mesalazine IS Pentasa, what side effects did you get with Pentasa?
Like Beth said, there are loads of other meds out there, have a read thro the treatment sections on here, get yourself armed with some ammo, things have changed over 16 years!
Glad to have you with us too, enjoy the forum
lotsa luv
Joan xxx

 

[ameslouise]

Hi Alex and welcome! Sorry things are all piling up on you now. I think you might need something a little stronger than the mesalamine. The biologics are also used for RA so maybe they would help with your joint pain - not sure but something you should discuss with your docs.

What are you using to manage the pain now? Remember to stay away from NSAIDS!!

Hope you find some relief very soon - Amy

 

[xJillx]

Welcome Alex! I am so sorry to hear about all the pain you are in! It certainly is time to get some appropriate treatment. Amy makes a great point about the biologics. Check out the treatment forum to do a little homework on your options. I hope you and your docs can find the right route for you and get you feeling better!