Uc related inflammatory arthritis

Nearly three out of four ulcerative colitis (UC) sufferers (73 percent) responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse (64 percent), their sexual relations (75 percent) and their emotional state (82 percent).
How do you cope with colitis ? Are you struggling with the emotional effects ? Even if a problem shared isn't a problem halved it may help to discuss it with people in the same situation.

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rogalin47
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What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Gloucestershire

Uc related inflammatory arthritis

Post by rogalin47 » Sun Jun 04, 2017 9:43 pm

I wasnt sure where to post this tbh as its not a uc rant but an inflammatory arthritis rant..... Even tho its a uc related condition.

Ive always suffered with joint pain which always got worse during a uc flare, most of the drugs used to treat uc are also used to treat inflammatory arthritis so my rheumatologist and my gastro consultants liaised with each other over the years regarding my treatment. I had my colon removed four years ago which in effect cured my uc but unfortunately I still have the auto immune disease which causes both the uc and arthritis. With no colon to attack the disease has now focused itself on causing merry hell within my joints. Despite being on the highest dose of methotrexate every joint in my body is swollen and painful. My fingers are so swollen my hands look like bunches of bananas :lol: and dont get me started on the state of my feet!!! Ive also now been diagnosed with ankylosing spondylitis which is arthritis of the spine.....the one joint up till now which remained free of the disease :shock: This is causing extreme pain and stiffness in my neck and giving me pins and needles in my arms and legs. Im waiting for an mri scan to assess the severity of the inflammation.

My methotrexate is being changed from tablets as Im not absorbing enough of the drug by taking in orally to weekly injections plus weekly injections of adalimumab. Im not looking forward to learning how to self administer these. My meds havent yet been changed as my rheumatologist wants to see just how bad things look on the mri before any meds hopefully improve the situation. I'll have another mri 6 months after the first one so she can compare the results. That obviously makes perfect sense but i havent actually got a scan date yet and each day is more painful than the previous one so to say im pretty damn miserable right now is an undetstatement

What I really wanted was advice/support/suggestions from anyone who is also dealing with uc related inflammatory arthritis..... Its really not bloody fair to still be dealing with uc complications despite having no flippin large bowel :whip:

Apologies for the self indulgent rant but I am feeling pretty crap at the moment and struggling to get through each day. I am very conscious that my poor hubby bears the brunt of my incessant moaning so to jot all my concerns down on here really does help. Thanks for letting me offload.

Rogalin


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

philayl63
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Date first diagnosed with IBD: 0- 2-2001

Re: Uc related inflammatory arthritis

Post by philayl63 » Mon Jun 05, 2017 4:26 pm

Hi Rogalin, sorry to hear of your further problems, but you won't believe the coincidence, I too like yourself, suffer from arthritis in hands, knees, hips and feet and have been on Methotrexate tablets (8 a week) for about three years, I have just this minute returned from the hospital rheumatology dept with a bag of Methotrexate injections after attending a session on injecting myself, I was surprised how easy it is, it is a pen type. Hope the injections help you, I will let you know how I get on. Phil
p.s. I know what you mean about the hands, one good thing though is when it's my round I can't get my hand in my pocket!
Have look at this site, might be useful. https://www.ra-coach.com/



rogalin47
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Posts: 1015
Joined: Mon Aug 09, 2010 4:28 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Gloucestershire

Re: Uc related inflammatory arthritis

Post by rogalin47 » Mon Jun 05, 2017 6:06 pm

Hi Phil
Good to hear from you, thanks for your reply. I always said we had more in common than our sense of humour!! It is interesting that your methotrexate has just been changed to injections I'll be very interested to hear how you get on doing them and also whether you find they work better than the tablets. Im on 10 metho tablets a week which ive been told is the highest dose so cant go any higher and ive tried pretty much every other oral meds available with no success. I wonder if us being gutless means we do absorb less of any oral drugs than those who still have a fully intact digestive system?! Have you ever tried adalimumab and if so how did you find it?

Unfortunately us girlies tend to carry our money in handbags so I cant use your excuse when it comes to buying a round in :devil:

How are you and the 'missus' doing?
Rogalin xx


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

rogalin47
Power poster
Posts: 1015
Joined: Mon Aug 09, 2010 4:28 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Gloucestershire

Re: Uc related inflammatory arthritis

Post by rogalin47 » Wed Jun 07, 2017 8:32 pm

Quick question Phil, where do you inject? And dont say in the pub :lol:

Is it tummy or thigh?


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

philayl63
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Joined: Wed Aug 25, 2010 6:07 pm
Date first diagnosed with IBD: 0- 2-2001

Re: Uc related inflammatory arthritis

Post by philayl63 » Mon Jun 12, 2017 3:21 pm

Hi rogalin, sorry for the delayed reply, I updated my Windows and the computer went to trash, I have had to wipe and re-install everything. I've never tried adalimumab so can't comment, I can't inject on the right side of the abdomen or else it goes right through the bag! The left side is occupied by a deep hole where I had the fistula, that leaves just the thighs, I find that in the time it took me to get the tablets out of the packet I can do the injection and stem the gushing blood afterwards (only joking). I've only done it twice up to now but find it much easier, as long as you don't have a fear of needles you will be ok. Phil



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