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I am beside myself...so much pain

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Crohn's Disease
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Posted 3/3/2011 12:15 AM (GMT 0)

Hi all,

 

Just touching base, I went to my gastro yesterday after being so achey in my joints for nearly a month (thought I had the flu) Turns out my rhematoid factor is high, I have arthritis, which apparently is from the crohn's or apparently we are more likely to get this then people who dont have crohn's. I am beside myself. I posted a month ago if some of you may remember about how I thought I had gastro? Well the gp did bloods did not notify me of my results until I went back on monday beside myself as I can hardly move and he said "oh your inflammation markers are high, your wcc is high". I saw red nono   why did he not call me back so I could have made an appointment with my gastro? My gastro had not even been sent these results! I am flat as anything and must admit since diagnosis at 16 have not felt this depressed until now. So immuran has commensed, continuing with Pentasa and have a colonscopy for the 18th as an MRI from dec shows thickening in my large bowel as well as my small bowel. Just needed to vent and thought no better place then here where you all get where I am coming from. Where do I go from here? I quit my job on monday before I found out as I was so overwhelmed with my aches and didnt want to keep letting them down. They did not accept my resignation but have told me to have time off and when I am ready to come in and I can drop some of my shifts. I dont know guys I am at the end of my feather... shakehead

Posted 3/3/2011 12:24 AM (GMT 0)
When I was diagnosed with CD at 18yo which was 22 years ago no one said anything about the other illnesses that can go with it. So was hell of a shock when I came off steroids the next year after ileo surgery to suddenly not be able to move any great extent without pain. After tests showed as CD arthritis. It did settle down after a while and now is only really bad after heavy exercise or it winter when very cold and wet.

Hopefully they can refer you to revelant dr who can recommend medication that will help you get back to normal. What I would say is that you have to keep moving, I know it is painful but with help of pain relief gentle exercise keeps the joints mobile and worst thing to do is stop doing things.
Posted 3/3/2011 12:33 AM (GMT 0)
Hi Stripey,

My mum suggested going to the pool and just doing gentle walks in the water. I think I'll give that a go. Your right I didnt know what other things came with this disease, did we sign up for extra? :-) Its hard because I want to work, I want to run around with my 5 year old and be a good mum. My husband is supportive the best man ever! I wont be having any more children as It took 4 years to get my beautiful girl, and flared up heaps while pregnant nearly losing her on several occassions. So I want to beable to enjoy the fun run around times to. Well Ill be seeing a rhematologist (if thats how its spelt) not really with it at the moment. Thanks xx
Posted 3/3/2011 12:36 AM (GMT 0)
Maybe you could go and see a rheumatologist, they could perhaps get you on the right kind of medication.
My son has RA and is having some success with methotrexate.
I hope you find some relief soon!!
Posted 3/3/2011 1:36 AM (GMT 0)
Using the water is a good idea as it will take the weight off the joints but allow you to exercise. I used to play waterpolo for ladies county team in UK and only gave it up when I had ileo surgery as despite it being supposedly a non contact sport, it is very physical and lost count of number of injuries that can be inflicted on you under the water where umpire cannot see! That kept me moving after the arthritis was diagnosed as I trained 4 nights a week in the pool and gym.

Good luck.
Posted 3/3/2011 1:49 AM (GMT 0)
when i was flaring, i had such terrible arthritis that i couldn't even lie in my bed with my knees touching. of all the crazy things i tried to control the pain, the only that things that really helped were either dilaudid (obviously not practical) and icy hot. i went through TUBES of icy hot, it sounds crazy but it really helped me.

what did NOT help me, however, was capsascin topical. in fact, it burnt like hell, and when i tried to wash it off, it burnt even MORE. but maybe i'm an outlier.
Posted 3/3/2011 2:05 AM (GMT 0)
I have tried things like deep heat and the like and for some reason have never had the lovely burning warming feeling you're supposed to get when you apply them. Odd, think it must just be me. We do have things like pads that heat up on contact with air that you wear for 8 -10 hours and throw away. They are meant for temporary, odd day relief but if my back and hips are playing up I will wear one at work and as they just stick to a vest top or t-shirt are easy to wear and move around with.
Posted 3/3/2011 2:20 AM (GMT 0)
thankyou all, those heat packs sound alright, I actualy remember awhile ago seeing them advertised. I phoned work today and have gone casual, hard decision to make but this way I wont feel I am letting anyone down. I am also studying so having trouble with the CD, work balance, study balance and being a mum and wife has taken its toll all at once I must say but has been brewing a long time and I have kept going. My mum and hubby told me that if you dont listen to your body and slow down your body will make the decision for you hence it has certainly done that! Will keep u updated on the upcoming colonoscopy and appointments. xx
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