back and scar tissue pain : I have crohns and... - Pain Concern

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back and scar tissue pain

Paininbackandlegs profile image
8 Replies

I have crohns and had my large bowel removed last year now have scar tissue pain at chronic levels then they did an mri scan and found I had a prolapsed disk and a disk bulge also x2 tumours in my back and mechanical spinal Disease degenerative this all makes my legs go numb and I get pins and needles in my legs and unable to walk very far or much I’m on some pain medication that helps a little but still waiting to see the pain clinic 8 months later just feel disheartened and disbelieving me and my crohns dr is just dismissive to all this and really annoyed me I have to live with this not him

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Paininbackandlegs
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8 Replies
strongmouse profile image
strongmouse

That sounds like a difficult combination. Are you on any medication for the pain?

I've had emergency bowel surgery, and adhesions and have spinal issues, plus have issues from another operation. I take cocadamol and nortyrptaline. The nortyrptaline is a low dose and helps with the pain I get down my legs. They help me to manage the pain. a better. I have been on a pain management course which helped, but only alongside the medication.

Can you change GPs? I'm fortunate to go to a GP Centre with several GPs there and have found one who listens. Perhaps you could keep a pain diary for a week or two, noting the level of pain, where it is and how it makes you feel and how it effects you - a simple chart with days and a list down the side - and then take it to the GP so that you have something more concrete for him / her to see. I found some physiotherapy exercises which help when the back pain flares. They help to loosen the muscles around the pain (heat can help too) and strengthen core muscles.

One of the problems with pain is that it is invisible. Part of pain management should be to aim to bring the level of pain down. I don't know much about Crohns but have heard people say how horrible it is. There is a "Crohns and Colitis Organisation" in the UK which has a helpline and some local networks. You could phone them for support and perhaps help with talking to your doctor.

crohnsandcolitis.org.uk/inf...

Getting support, staying as active - even gentle short walks or exercises - as possible and discovering things you enjoy within your limits. Hope you find some better treatment and support soon. It's hard living with long term pain.

Paininbackandlegs profile image
Paininbackandlegs in reply to strongmouse

I can’t walk due to all the issues I use a stick in the house and wheelchair when I’m out and a scooter all so and waiting for pain clinic referral to get back with a date for that yes I’m on gabapentin oramorph tramadol paracetamol and some other meds for things injections for my crohns as they now found the crohns spread to my small bowel now so not great I’m having physio but not really working but they said it might not work for me Cus how complex all my conditions are x

strongmouse profile image
strongmouse in reply to Paininbackandlegs

Sorry to hear that. Pain and chronic health issues can be so debilitating. It knocks you back when something you have worsens. The phyisotherapy did take a while to help me, but it can be difficult when there's pain in the same area from different things. Not simple for sure!

Paininbackandlegs profile image
Paininbackandlegs in reply to strongmouse

ye physio did not work for me at all they said I might not work

Les_r28 profile image
Les_r28

Oh I am so sorry you are going through so much with little helpCan I ask you to look at prolozone therapy and there is prolotherapy

I have been told is very good you would need to pay for it but I would pay if it got me back to normal

This doesn't work for crps as I have already looked into it but think would definitely work for you

I don't know where you live the main clinic is in Bedford and the man is called Oliver he is very knowledgeable and there is another clinic in Liverpool

I would definitely recommend you speak to Oliver

prohealthclinic.co.uk/treat...

Good luck

Paininbackandlegs profile image
Paininbackandlegs in reply to Les_r28

oh ok I’ll look into this thanks and in Northampton so not far from Bedford at all thanks

AML80 profile image
AML80

If you have transport and can get to the Hospital at short notice phone the Pain Clinic and ask to be put on the cancellation list.

Paininbackandlegs profile image
Paininbackandlegs in reply to AML80

yep on that list already still waiting haha x

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