My Story

58 years old Brit living in France diagnosed last year after a year of problems. I get by on Pentasa 2g (double for flares) and have always kept very fit (cycling, swimming,gym etc.) which helps me stay on top of it. At least when I am working out there is no nausea or stomach pain. I eat sensibly.

Now my strategy is compromised by neck pain and there is a real problem with a disc (C5,C6) pushing on the nerve, but the symptoms should not be so bad as the pain I get so the obvious suspect is Crohn's inflammation.

I'd really be interested in other peoples experience of non-intestinal problems caused by Crohns and how to manage this other than by painkillers or steroids. Basically I thought I had won the battle but I am beginning to realise it's for life.

And I'd like to fess up to being a mature guy who knows there are others in worse shape but still feels sorry for myself and sometimes cries, and it makes me feel less tense!

I don't know about others, but in my case my extra-intestinal issues always seem more or less linked to my gut. If my gut is healthy, then, more or less, so is the rest of me. This doesn't necessarily go for things like my neck and shoulder, though, which are ground smooth due to low bone density and a habit of rolling/cracking I've had for years.

While pain in your neck MAY be Crohn's, it also may not be. Below the waist is more typical for joint issues.

I have ankylosing spondylitis/ reactive arthritis. This can effect the spine and SI joints. I mainly have it in my upper back. I in-fact only have non-intestinal problems. I do take pain meds (Tramadol), I am also on Humira because of my eyes. You might want to try Physical Therapy. Talk to you GI doc, they might have an idea or know of a rheymatogist that they work with.

HI paul, i have the same problem in my neck and lower back with DD(deterioration Dics) to the neck C4-C6 and and back L4-L6. you can get celebrex for this and in mean time use hot and cold compressions. rotate them it will help with the swelling.The worst thing about crohn's it causes arthritis. best regards

scott

Hi Paul!

I have a lot of back pain, joint pain, fatigue, as well as other problems that I believe are all connected to my Crohns. When I am ill, my back and other problems all start up along with the Crohns symptoms.

I also need a good cry from time to time, as does my non-Crohnsie husband! Sometimes a good cry is the best way to get your feelings out. Welcome to the forum!

Thanks to everybody who responded to my story. My wife is great about the disease and massively supportive but sometimes its like the scene in Airplane when one passenger is boring the other so much that she mimics getting out a knife for hara kiri or a rope or something. Now I have the forum I feel able to let off some pressure without guilt.

I think I have to stop being a virgin about things that might help like antidepressants to lift the mood, as many of the posts seem to say that the Crohn's upsets the serotonin balance and this would seem to tie in with my weepiness - despite the fact my core self is tougher than that. I've been clinging on to an idea of getting better and I will, but knowing it comes back is hard to deal with - as many of you know better than I.

Anyway, if it is not too trite to say it I think I have grown up a bit. Nothing like a nice bit of suffering to make you a stronger person deep down!

Thanks again, I'm going to think about ways to help people out there as well as myself.

Hiya Paul
and welcome

I have horrific neck pain! I've had physio, acupuncture, seen an osteopath, chiropractor and had steroid injections.
The osteopath said I've got Occipital Neuralgia aka Arnold's Neuralgia.

http://en.wikipedia.org/wiki/Occipital_neuralgia
Are your pains like this ^ ??

So, on Thursday I'm seeing a neurologist in Liverpool about it.
At first I thought it was cluster headaches, then I thought migraine and so on.
Hopefully we'll get it sorted on Thursday.
I'm on 25mg Amitriptyline, this is an anti depressant at higher doses, but works as a nerve blocker at lower doses.
If you're considering an anti depressant,consider this one, it's been a Godsend for me!
It knocks me out at bedtime, calms belly spasms and keeps me calm whilst on steroids!
I totally empathise with you over neck pain, it makes me cry too, bucketfuls of it!
lotsa luv
Joan xxx

Hey Astra,

My wonderful fabulous supportive wife is from the Wirral. She's seeing her parents in Oswestry now and flies back from JLA to Nice on Saturday.

(Why doesn't my picture come up on the profile?)

Anyway, thanks for the info on Amitriptyline. I stopped taking it because I thought he'd snuck in an antidepressant. If I take those I had thought it should be an SSRI. However, now you have explained about its other uses I understand and 5 drops a day probably won't kill me. And as I said before its time I stopped being a virgin about these meds.
The problem with being in France, my French is good but when you are in the doc's and feeling shite you don't always understand fully. Hello again, nerve-blocker! Though maybe I'll wait until after my eight rounds of remedial physio which is so far doing me in completely!

Anyway I haven't got the same thing. The MRI scan shows the disc between C5 and C6 pressing on the nerve, so there is a reason for it, just that the pictures would not normally correspond to the degree of pain I am getting so we think the Crohn's is putting the boot in at a weak point. Getting used to wearing a cervical collar sometimes.

Don't you sometimes feel like if you could just kill that bloody alien living in your body you'd win the war, instead of fighting a defensive action all the time.

Eh voila, I feel better again for saying all that. Thanks and lets keep talking. Love.

Wow, the Wirral, not so far from me!
and my sister lives in Oswestry.

Aw, you keep your spirits up Paul, hard I know. I'm feeling rough too, neck, and now I'm flaring after so long in remission, the alien is really getting on me tits now!
Hope you get something sorted soon
xxx

The remedial physiotherapy seems to be working for now. I privately call the guy "Swelter" (from "Gormenghast") because it is August in Southern France, there are machines all over the shop chucking out heat, he is a big guy and works on you hard. In between clients he shuts the shop and goes out to the cafe at the front for a beer. Between Swelter and Paracetamol and Clonazepam and a Cervical Collar at night, we are starting to get a result - I must believe!

Hang in there kid.

I've been thinking about if I should suggest a Crohnie Knighthood scheme. Nothing to do with ethnicity or religion or wars or anything, just about nobility. I mean the real nobility which so many of younger people on this forum demonstrate through their courage every day. Old farts like me would have to be content with being King Alfred or something.

Maybe we could ask for nominations of kids who inspire us and award them honorary knighthoods. The idea needs fleshing out more but it might just bring a glow to a few kids who could do with some pride in their fortitude.

Who would I go to with the idea?

What a lovely idea! Put the idea to David
There are loads of inspirational kids on here, but me? I'm an old fart too! (nearly 48)

I remember the telly show with Swelter! Richard Griffiths who played him to a tee, he's one of my favourite actors!
You hang on in there too
xxx

Thanks, hon. Who's David? I don't know anything about the structure or who is behind or runs the website.

Yeah David, he's the Head Honcho!
The Administrator
Start a new thread in the site suggestions, open up where it says new thread on the left, put a new title in, and David will see it.

here -

http://www.crohnsforum.com/forumdisplay.php?f=6