I have enteropathic athritis from Crohns

dalek
dalek Member Posts: 32
edited 20. May 2017, 09:59 in Say Hello Archive
I registered with this forum because when I searched as a non-member I found there are 3 more people in this universe with the same condition as me plus I have never met anyone under the age of 60 with arthritis. Now I can't find the forum search facility???? so I can't reply back

I am hoping the moderator will send me an 'idiot proof' screen print on how to search forums

Also will people be notified if I reply back to their posts?

Arthritis itself is an extremely isolation condition and it doesn't help when search engines for enteropathic always pull up articles which say something along the lines "enteropathic arthritis doesn't damage joints" or "will go away" after a few years. If I read any more of these I may fling my laptop across the room.

*salazopyrin*methotrexate*ifliximab infusions*
*right hip replacement at 30 yrs old*probably going to have left ankle fused*

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. As I understand it Crohns is one of the many auto-immune inflammatory conditions, I was born with eczema, developed asthma aged seven for when my inflammatory arthritis began thirty years later it was no great surprise (I have psoriatic which in turn has led to OA and fibromyalgia). Over the years you name it, I've tried it and accepted that I will never have what I want because it's not there to be had. I am currently on injected meth and humira for the PsA, pain relief for the OA and rest for the fibro.

    I am not very technical but I think that if you go click on the User Control Button next to logout you should be able to set up notifications. Clicking on the search button to the top right of the board should lead you into that mysterious world.

    I think that PsA is of the enteropathic kind in that it damages in a different way to RA but I've never been a great one for detail about my conditions. I'm not medical and have little curiosity, it is what it is and it will do what it will do - and it does. :wink: DD
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello dalek
    please see the two picture below.
    So first click on the search link on the right hand side in the pale blue functions bar.
    Next enter your search terms, keep it simple as it will search for each word on an individual bases.
    Then click submit.
    Your search words will be highlighted in yellow so you can scan for them quite quickly.
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello dalek and welcome from me, too. I hope that Sharon's detailed instructions have enabled you to use the search engine. However, we only get notifications of additions to our threads if we have asked for them.

    I'm sorry you've found it so hard to make contacr with other people with enteropathic arthritis. I recall being in hospital with one such lady many years ago. She was having a very hard time of things. Unfortunately, it's not rare for people umder 60 to have arhritis, though. Many of us with autoimmune types have had it since childhood or at least early adulthood. You will find many younger people on here with arthritis and I hope you'll feel we are supportive and understanding. As for the Crohns - we do get people on here with it from time to time. just not many.
  • SooBee48
    SooBee48 Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi Dalek,

    I was diagnosed with Crohn's in 1971, aged 21. Had a resection removing 18".

    I started to develop joint pain about eight years later, and struggled with it for years. (In the meantime I was diagnosed with osteoporosis.) It finally got to the point about six years ago when I really could barely walk. Getting help was to say the least, difficult! I finally got very angry and was referred to a rheumatologist. She xrayed my back and said I had degenerative arthritis of the spine, sponylolisthesis and scoliosis. She recommended I was referred to a surgeon. That took another eight months. When I saw the surgeon he suspected my hips were also involved and xrayed them. (By this time I was in constant pain and in a wheelchair.) Apparently they were pretty bad.

    Around about the same time my dentist said she suspected I have Sjorgren's Syndrome, which I believe is also connected with these things!

    In the meantime my Crohn's went into overdrive and almost obstructed so I was told I needed another resection. Another couple of years passed and I had the resection in April 2015.

    Another sixteen months passed and I had the first hip replacement. By the time I had the second in February this year my right leg was permanently 'flexed'. The radiologist who looked at the xray prior to the hip replacement said he didn't think he'd seen worse. So, bad six weeks after the op but now I'm pretty much mobile again, and things are much better. I do now have one leg slightly shorter than the other but it is manageable.

    If there is any connection between my various 'problems' none of my doctors have ever mentioned it, or obviously think it important. Until I finally had x-rays to prove I did have arthritis, the only advice I ever had was 'just keep moving, it's fatal to stop moving'. As I did all the housework, gardening, decorating, bred dogs, rode and showed horses, hill-walked, swam, walked, etc, I felt this advice was a little superfluous! 😩😀😆
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello SooBee48,

    It's lovely to meet you, and how wonderful you were checking out our forum and found you could empathise with a forum member. It sounds as if your conditions are/may be 'under control', do let us know if you have any concerns for yourself- just in case any of us can help you at all.

    Now you are here have a look at our other threads, Chit-chat has non-arthritis threads, lots of friendly places to stop and chat for a while.

    Looking forward to seeing you around

    Take care
    Yvonne x
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello and welcome SooBee48.

    Unfortunately, I have to be brief as we have guests but I can throw a little light on part of your problems. Crohns and Sjorgrens are both autoimmune conditions as are some forms of arthritis. That's the only (I believe) connection. I have two autoimmune conditions - RA and asthma. I think one inherits the 'autoimmune disease' tendency but whether or not that translates into none, one or more problems seems purely random.

    It's odd that you have developed osteoporosis after leading such an active life. I don't think there is any autoimmune connection with osteoporosis other than what I was once told ie its the less active life that we lead, and the meds that we might take (especially steroids), which predispose us to it.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    The osteoporosis might have been due, at least in part, to the Crohn's affecting absorption of calcium and VitD, - the resection would presumably have further reduced absorption? Coeliac disease can be a cause for the same reason and fortunately the medics are getting more clued up about such connections.

Who's Online

32
Baloo
Baloo
gazrobbo
gazrobbo
toady
toady
+29 Guests