Enteropathic arthritis effect on my future

johnnyb

Hi everyone,
This is my first time here as I have just been diagnosed and naturally enough I have so many questions I was hoping for some information or advice.

I am 32 and father of two kids aged 9mths and 3yrs. When I'm not entertaining them I am either playing music or practicing jiu jitsu.
A year and a half ago I was diagnosed with non specific colitis and have it pretty much under control and took it in my stride really as my overall lifestyle was largely unchanged. However I have now been diagnosed with enteropathic arthritis and I am utterly terrified.
So far it seems isolated in my wrists and knuckles but I'm getting increasingly worried that it will get worse and spread and could prevent me from doing all the things I love.
I guess I'm just wondering if anyone here has the same conditions and has it effected your ability to train in jiu jitsu or play music?
Any help is much appreciated.
Regards
John

lizzy100

Hi john. I have ulcerative colitis and entoerpathic arthritis too. like you my colitis is pretty stable and i haven't had to change me diet or anything (till now). but then i started getting joint pain in pretty much all the joints in my upper and lower limb. my hands and hips are the worst, and feet. I literally couldn't walk, it hurts to drive. i am just about managing to keep working although iv had to reduce my hours. Im on methotrexate and humira for it.
however there are two types of IBD arthritis- type 1 and type 2. 1 parallels bowel inflammation. and 2 is independant of bowel activity -which im guessing like you, you have. Type 2 is quite rare. The specialist i see has written papers on it and is really good. type 2 is meant to last for a median of 3 years, so hopefully it will go at some point.

this paper is good http://gut.bmj.com/content/42/3/387.abstract

and ECCO guidelines under special circumstances - peripheral arthritis.
https://www.ecco-ibd.eu/images/6_Publication/6_3_ECCO Guidelines/2012_UC_Consensus_3_Special_situations.pdf

as i said its quite rare and noone really understands it. rheumatology didnt get it with me, which was why i had to see a gastro specialist to get a diagnosis. mine is pretty severe with is aparently unusual. so i hope yours wont be as bad.
good luck

dreamdaisy

I have psoriatic arthritis (which I believe falls into the enteropathic group of inflammatory conditions). I began mine aged 37 and am now 54. It's changed everything for me but everyone's version of arthritis is unique to them. None of us have a crystal ball - I could get run over by a bus today and then arthritis may be the least (or even the last) of my worries.

Arthritis-related changes don't generally happen overnight. I began with one affected joint, now it's up to thirty-nine and that's taken a good few years. Hopefully you will soon begin some medications that should slow the progress and therefore reduce the risks of joint damage. I was not offered any meds until I was seven years in (long, boring story) and I am paying the price for that. This shouldn't be the case for you. Take each day as it comes, that's all we can do. DD

stickywicket

No-one can reassure you about your future. Even people who are 100% healthy can suddenly get something that changes their life. I guess it's hard when you're wondering if the disease will take away all that you enjoy. It certainly took away piano-playing for me. I learnt to make damn sure that, whatever it took away, I'd find something just as good to substitute. I've had 53 years of this and, on the whole, they've been good ones. Arthritis has closed some doors and forced me to open others. Live in the day. Enjoy what you have when you have it. Then move on.

johnnyb

Thanks for the replies everyone. I've already noticed I cant play the guitar for as long and work is becoming difficult at times. I guess I'll just have to take it as it comes.

StatsGirl

So does this mean it may go away after a few years? I assumed it would be a lifelong thing?

I'm still awaiting full diagnosis, but I too am terrified. I'm struggling with work (too much typing) and can't really exercise anymore at the moment.

Why is there so little online about this?

dreamdaisy

In my experience an auto-immune arthritis doesn't go away, I am now in my eighteenth year of it and it's been a gradual deterioration all the way through, adding OA and fibro to its little bandwagon to boot. Others, however, get away with very little trouble and find that the entry level meds are enough to keep their disease under control.

It seems unreal in this day and age that there is a group of diseases for which there is no cure but that is the situation with arthritis. It's not easy to live with or accept. DD

stickywicket

To the best of my knowledge there is only one form of arthritis that can go away. That's Reactive Arthritis which comes on as a result of an infection. Even so, it can re-emerge as RA.

I take it you still haven't got a firm diagnosis though 'inflammatory arthritis' is firm enough. No need to freak out. Take each day as it comes. There is life after a diagnosis of arthritis.

dalek

lizzy100 wrote:

Hi john. I have ulcerative colitis and entoerpathic arthritis too. like you my colitis is pretty stable and i haven't had to change me diet or anything (till now). but then i started getting joint pain in pretty much all the joints in my upper and lower limb. my hands and hips are the worst, and feet. I literally couldn't walk, it hurts to drive. i am just about managing to keep working although iv had to reduce my hours. Im on methotrexate and humira for it.
however there are two types of IBD arthritis- type 1 and type 2. 1 parallels bowel inflammation. and 2 is independant of bowel activity -which im guessing like you, you have. Type 2 is quite rare. The specialist i see has written papers on it and is really good. type 2 is meant to last for a median of 3 years, so hopefully it will go at some point.

this paper is good http://gut.bmj.com/content/42/3/387.abstract

and ECCO guidelines under special circumstances - peripheral arthritis.
https://www.ecco-ibd.eu/images/6_Publication/6_3_ECCO Guidelines/2012_UC_Consensus_3_Special_situations.pdf

as i said its quite rare and noone really understands it. rheumatology didnt get it with me, which was why i had to see a gastro specialist to get a diagnosis. mine is pretty severe with is aparently unusual. so i hope yours wont be as bad.
good luck

I think your Specialist needs to review his paper . I have had enteropathic arthritis (from Crohns) for 20+ years on and off. I had episodes of Crohns in 1995 but the real problem has been arthritis. I am surprised he or she would make such a sweeping statement about a disease of the immune system. if the humira is not controlling it, ask for ifliximab. You need to get on top of it, ignore the internet articles that say enteropathic arthritis doesn't damage the joints. Had hip replacement at 30 and now facing left ankle fusion

DaveJ5

dalek wrote:

lizzy100 wrote:

Hi john. I have ulcerative colitis and entoerpathic arthritis too. like you my colitis is pretty stable and i haven't had to change me diet or anything (till now). but then i started getting joint pain in pretty much all the joints in my upper and lower limb. my hands and hips are the worst, and feet. I literally couldn't walk, it hurts to drive. i am just about managing to keep working although iv had to reduce my hours. Im on methotrexate and humira for it.
however there are two types of IBD arthritis- type 1 and type 2. 1 parallels bowel inflammation. and 2 is independant of bowel activity -which im guessing like you, you have. Type 2 is quite rare. The specialist i see has written papers on it and is really good. type 2 is meant to last for a median of 3 years, so hopefully it will go at some point.

this paper is good http://gut.bmj.com/content/42/3/387.abstract

and ECCO guidelines under special circumstances - peripheral arthritis.
https://www.ecco-ibd.eu/images/6_Publication/6_3_ECCO Guidelines/2012_UC_Consensus_3_Special_situations.pdf

as i said its quite rare and noone really understands it. rheumatology didnt get it with me, which was why i had to see a gastro specialist to get a diagnosis. mine is pretty severe with is aparently unusual. so i hope yours wont be as bad.
good luck

I think your Specialist needs to review his paper . I have had enteropathic arthritis (from Crohns) for 20+ years on and off. I had episodes of Crohns in 1995 but the real problem has been arthritis. I am surprised he or she would make such a sweeping statement about a disease of the immune system. if the humira is not controlling it, ask for ifliximab. You need to get on top of it, ignore the internet articles that say enteropathic arthritis doesn't damage the joints. Had hip replacement at 30 and now facing left ankle fusion

I wish I had read that 13 years ago, that is how long I have had enteropathic artritis I was put on sulfasalazine but had to stop when I got pain in my gut and had to avoid all salicalates so have not been treated at all. I now need two knee replacements and my wrists, hands, feet and one ankle are going as well. My GP and rheumatoligist won't believe it is the EA that has caused it they just say it is Osteo arthritis.

SarLoWills

I have ulcerative colitis and have just been diagnosed with inflammatory arthritis. My rheumatologist knows I have UC but hasn’t really stated that they could be linked. Perhaps it depends on the type of arthritis?


t98243

DaveJ5

I would say it is highly likely to be related as 20% of colitis sufferers get arthritis. I was lucky in that I saw a gastro registar who had just finished a rotation in rheumatology and refered me to them.

They say most arthritis is only active when the colitis is, but in my case it has been active all the time since I was diagnosed 13 years ago. The first stage of treatment for me was to swap from mesalazine to sulfasalazine which did work but caused a reaction to all salicalates so now I cannot take either and have had to manage with just pain killers. I now have damaged joints I believe because of the enteropathic arthritis but the doctors are just calling osteoarthritis.

I hope you can get on better with treatment than I did and your problems are short lived.

DaveJ