# Crohn's and Arthritis Support Group



## Charlotte.

Hi fellow Crohnies,

I just realised that there is no Crohn's and Arthritis support group, so here it is!

I hope this can be a place to connect and share thoughts, problems and whatever.


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## Charlotte.

Has your arthritis developed simultaneously to your Crohn's? 

Mine has been diagnosed just two months after I've been diagnosed with Crohn's but my symptoms of Crohn's started 8 years before the diagnosis and I was having reoccurring joint problems but did not pay enough attention to it.


I would also like to know if your arthritis is active even though your Crohn's is quite well?


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## Cat-a-Tonic

I've got some type of IBD (not sure which one yet, not fully diagnosed) and I also have some type of inflammatory arthritis in both hips (that's not fully diagnosed either but my doctors think it's inflammatory arthritis of some sort).  The arthritis symptoms came on about a year after the IBD first manifested.  For awhile it was just in my right hip, then it spread to the left as well.  I think it might also be in one or both of my knees (my left knee in particular can get fairly painful sometimes).  I'm 36 now, the IBD came on just before I turned 30 and the arthritis came on right after I turned 31.

For me, my arthritis seems to act up independently of what's going on in my guts (my IBD is currently in remission but my hips are a bit achey today).  Bitterly cold and/or snowy weather, and sometimes even very rainy weather, are the main triggers for my arthritis pain.  A few years ago we had a huge blizzard, and my hips felt horrendous in the hours before the snow hit, that was the worst pain my hips have had.  My other big trigger for my arthritis pain is not doing my exercises (I went through physical therapy when the arthritis first hit and that helped a lot, and I mostly do well as long as I do my PT exercises regularly) - or, if I do high-impact exercise like jogging, that will really make my hips painful.  Low-impact exercises like bicycling make my hips feel better, but jogging or even fast walking can put my hips in pain for days.  So no jogging for me, oh well.


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## jonique

Hi Charlotte, 

thanks for starting the Crohn's and arthritis club   I have both as well.  The Crohn's started a few years before the arthritis diagnosis.  My Crohn's is currently in remission but the arthritis is causing me a lot of problems for the past few years.  it seems to be resistant to all my treatments.

I have peripheral arthritis but mildly.  the spondyloarthropathy in the neck, spine, SI joints is the main problem.  

My rheumatologist just started me on Stelara so will see how that goes.  Have only had one injection last week.  She is dosing it for the arthritis so it is 45 mg at week 0, then 45 mg at week 4, then 45 mg every 12 weeks.

For exercise, i used to be a gym rat.  now, i can manage stationary bike, short walks, aquafit as long as i don't do too much jumping.  going to switch to deep water aquafit this week and see how that goes.  i do gentle range of motion exercises, stretching, light weights.

will be interesting to see what others are dealing with.


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## ronroush7

November of the year before last, I was in the ER for Crohn's symptoms.  They ran tests on me and told me that one of the tests showed I had some minor arthritis in my lower back.  Just recently, I have been able to feel it.


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## Beachbell

Hi!  I'm new to crohn's and new to arthritis. I was diagnosed with both within the last year. Still trying to figure things out. I'm grateful for this forum and plan to keep an eye out for helpful posts/threads. Thanks!


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## ronroush7

Beachbell said:


> Hi!  I'm new to crohn's and new to arthritis. I was diagnosed with both within the last year. Still trying to figure things out. I'm grateful for this forum and plan to keep an eye out for helpful posts/threads. Thanks!


Welcome


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## Charlotte.

Thank you guys so much for sharing! 
It feels so good to know that there are many of us out there dealing with Crohn's AND arthritis. So mine is supposed to be enteropathic arthritis and flares quite badly when I'm in a Crohn's flare (as I am now), but the symptoms differ. 
In a Crohn's flare-up my right hip joint is very painful, same with the right knee. In general, I have inflammation (checked by ultra sound) in my ankles, toes, fingers. My sacroiliac joint is/was affected as well (still painful), my wrist is painful as well currently. I also had inflammation in my elbow, temporomandibular joint and shoulder. All along with the other joints before I found effective treatment.
My Crohn's has never been in a longer remission, so my arthritis has always been active since diagnosis.
I had to stop any sort of sports, used to be an active person, cycling to work by a road bike, walking to uni from the bus or underground station etc., rowing, dance, Pilates, Yoga. Now: none of it. Feels a bit as if my life is taken away. The only sports that I avoided as well as possible: Swimming. And that's exactly the only sort of sports that I am able to do currently. Joining a swimming club from next week on, hopefully, when I feel well enough. I hope I can start road biking again only low impact on short distances one day.

How are you coping with not being able to choose the sports that you like or even stopping the sport that you loved?
To me, it's pretty tough. Swimming will probably never replace dance and I felt the dance was something that became part of my personality, the way I can express myself, you know what I mean?


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## Colette08

Has anyone on here felt like giving up? I am just not sure I can deal with this disease any longer. It took many wrong diagnosis’s before I was actually given the correct one, which who knows at this point if it is even right. I have had stomach issues since I was 22, I am not 28. I was told I have Crohns about a year ago, before that it was UC. When I was 22 I was told to just go on a better diet. I just seem to not know how people can live with this..? It affects my every day life to the point that I do not have one. I know there are people out there with way worse, but I just do not know how people handle this and be happy. And to top it all off with my diagnosis of Crohns I ended up also getting Lupus from my medication called Remicade. I just joined today because I thought this would help me cope with this horrible disease....


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## ronroush7

I wish I could have done sports but my coordination has always been off.


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## Charlotte.

I'm sorry to hear you are struggling, Colette. So, you have arthritis as well, don't you? In deed that is super tough.
Of course, I have very bad times as well, but what helps me is to connect with people that are affected as well. And that's probably the only thing that does help as even my closest friends can't say much and don't have the slightest idea what I am going through in these moments. I see a local support group regularly. Is there one near you? Is there a helpline that could provide information? I will also see a support group for arthritis soon, as I need someone who does understand when my arthritis symptoms are too much to cope with, not only a group for Crohn's. I made some amazing friends in the local support group, fortunately they have a group of young adults there.
I would really encourage you to write as much as you need in this forum, it's there to help you, it's a super tough disease. Get in touch with the people and read their stories, it's so motivating reading about fellow Crohnies that are in remission even though their disease has been very, very active for a long while. There is so much new medication on its way (google "mongersen" for example), there has been a huge improvement since anti tnf and other monoclonal antibody drugs and there will be much much more available for us in the future. 
Also bear in mind that the disease can have active periods that seem to be endless and better times. 
Maybe you can check for other medication by seeing another specialist in a good IBD centre. 
Have you thought about seeing a psychologist? That might be an option as well. Life is so beautiful even though it's so hard at the moment. I'm in a flare-up as well, and have never really been in remission since diagnosis, so I kind of know what you might feel like.
Stay strong and beliefe in yourself.


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## ronroush7

Charlotte. said:


> Has your arthritis developed simultaneously to your Crohn's?
> 
> Mine has been diagnosed just two months after I've been diagnosed with Crohn's but my symptoms of Crohn's started 8 years before the diagnosis and I was having reoccurring joint problems but did not pay enough attention to it.
> 
> 
> I would also like to know if your arthritis is active even though your Crohn's is quite well?


I have had Crohn's for twenty six years
The arthritis has just occurred recently.


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## Colette08

Thanks for writing to me Charolette, yes I do as well have arthritis. I am not sure if it is due to my crohns or Lupus at this point. It is just so hard because when I get sick they always think its my crohns, but then I find out other news like the new diagnosis of Lupus. If it was not for my hematologist I would have never known I had it. It got to the point of not being able to walk, but it has not been that bad since that time. Although I get scared that it will happen again. Its hard to live with this and maybe this forum will help me and that is why I am trying it out. This is the first time I have spoken to someone other than family about what I am going through, so I guess the next step is to figure out how to deal with it and who can help. I will take your advice and seek other options, I hope we have a support group for young adults around where I live, I will check this out. This disease just affects everything for me and I know life is beautiful, but some days I just wonder if this is how I want to live my life. I keep pushing forward though hoping for some relief, but then I have a horrible day like today and I just don’t know any more. I have not been in remission since having stomach issues, so I do not know what it feels like and therefore this is why I am responding the way I am. I havn’t seen my doctor, because it seems like nothing is working. Humira works maybe sometimes and at about 30%, I do not even know what it feels like to be normal any more anyhow. This round of Humira is not working at all though. I think I need some kind of support/help though because I am just on edge and have had it with this disease. I cannot make any life decisions without think about this horrible disease. Also I have to pretend to my family that I am fine because who wants to be around someone always complaining? Not that they would even understand my pain any way, I think they just think I poop a lot (Big deal huh). Plus with being anemic and having no vitamins in my body does not help either. Taking a humira shot, a b12 shot, iron infusions and so much more, so its just getting to me. I am young and I want to date and go out and do things, but how can I? No guy would understand, trust me I have tried. I cannot deal with this any longer. I have a great offer for a new job, but do I go? How could I? I might get really sick the first couple of days and how would they understand? I go a full day without eating until I get home because of fear. I do liquid diets, but water makes it worse sometimes….I literally want to give up all together, this is just no way to live life. I will just keep pushing through and hope a miracle happen, I guess. Thank you though for your positive outlook, believe me I need it....


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## Charlotte.

Colette, have you tried Ensure, ModulenIBD, Elemental028, Fresubin, Peptamen or enteral feeds like that? At least they decrease the symptoms dramatically, they don't seem to be a long-term treatment for adults, that treats inflammation, but maybe it helps you to feel a bit more normal. I have been on it exclusively for a while but symptoms returned when I went off of it. I started a full elimination diet, adding one food by one, but symptoms returned even without dietary change at some point. Enteral nutrition might be a good way to feel "normal" for a short while, believe me, it also feels good emotionally being normal for a while again, even if it is only short term.
The most important think probably is to find a doctor who wants to help you and does not want to treat symptoms but a human being. I hope you can find a doctor who is understanding and has enough knowledge about the disease. 
If there is no local support group, why not get in touch with the other younger patients in the waiting room or when you wait in a line? My doctor treats many many IBD patients, so there is always someone to get in touch with. Often I just ask: Crohn's or colitis? If there is misunderstanding you know that that person does not have IBD ;-) If not, the rest comes naturally.  
Try not to hide your disease. If you are open with it, people can understand, otherwise they don't know what is going on and think you are absent, tired, angry or whatever. You don't need to go into detail for everyone, but you should with some people. Choose one friend that you talk to first and you will see that it's much easier than you think. Your friends want to be there for you, that's what friends are for, because they love you and they would appreciate the same think if they were in your place. Later, talk to other closer friends. Apart from colleges or people in the work field, I talk to everyone about my disease, but this has not always been the case. I have also hidden my symptoms from my family in order not to see them worried. Your parents are there for you even though you are an adult, you don't need to talk about every aspect but for me it is helpful to let them know. You don't show any weakness or something but it's responsible to talk honestly to them. Of course, it's your disease, but you don't need to carry it all by yourself. Feel free to message me anytime by a private message.


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## Archeogirl

Did anybody's arthritis start as an attack? Nearly six years ago when I was 20, I was having some bowel issues and thought I was lactose intolerant. But I also had a "back attack" twice during this time. It came on slowly after I had a stomach ache and back ache from having a Tim Horton's double double (a cup of tea to all you non-Canadians) and progressed into my back seizing up and feeling like every bone in my back was brittle and breaking. Quite scary. And of course being 20 and busy at university I didn't go to a doctor. Instead I completely changed my diet and eventually my bowel issues went away.

Speed up five years, when I was 25, new bowel issues started in Nov.-Dec. 2014 and blew up in July 2015. I was initially dismissed by a doctor as my bowel symptoms had only just started. He told me to monitor my health. Another doctor in August told me I had IBS. By September I was having other strange symptoms such as waking up in the middle of the night with pins and needles in my legs and hands and then at the end of the month I started to have achy feet which was making me limp a bit, but mostly in the evenings. I thought it was because of my flat shoes but I wore proper supported sneakers at work (I was a very active ESL teacher). So I went for a foot massage. Didn't help.

Then, near the middle of October I woke up in the middle of the night with that same back attack I had when I was 20. I could barely move, let alone breathe. The pain was stabbing into my lungs and chest. I took some Tylenol and tried to go back to sleep. It went after maybe 30-60 minutes, just like the time before. This was worrisome to me, but the worst was yet to come.

A few days later I woke up with a "leg" attack. Both my knees and ankles were in excruciating pain. The only way I can describe it is that my knees felt smashed in with a mallet and my ankles felt broken. I couldn't move them. I lived alone. And I was terrified. I wondered if it was because of all the heavy stuff I carried home from IKEA the night before. I had to pull my pajama pants with my hands to manually move my legs into a sitting up position. Then I tried to get up. I had to use the doorknob to pull myself out of bed into a standing up position but it was almost too much. Having my full weight on my legs was excruciating and I was all but screaming out in pain. Walking to the bathroom was the longest walk of my life. I was worried about falling and damaging my legs when I walked across the living room with nothing to hold onto. It was like learning to walk for the first time but walking with stiff weights on my legs and excruciating pain - very robot-like. I couldn't bend my knee. Going to the bathroom was hell as I had to hold onto the door knob and hang off the tub to bend myself down and pull myself up again.

Slowly over a few weeks this became my life. Pain attacks at night, stiff legs during the day. I couldn't bend down anymore, or climb stairs. Then the pain spread into my elbows and wrist and one finger during night attacks. Then I really couldn't get out of bed. It was like my body was killing myself. I could feel the pain coming on in my arms and hands by starting out as this cold feeling, then pins and needles and suddenly the pain was there and I couldn't use them. Some acupuncture did temporarily help me but in the end I was a cripple within a month and had to return to my parents for a few months to take care of me (I was in Hong Kong and had to come back to Canada). 

The first day on prednisone, I could walk again. The pain in my arms, hands and legs disappeared like that. It's seriously a miracle drug. That's not to say that I could do stairs right away. My knees were pretty weak, the disease had eaten away at my muscle and I was down to 106 pounds after being 126 (then I lost another five to surgery in December). My dad had to help me get up the stairs into the house. It took my about a month to be able to do stairs normally again.

The last three months I have been 95% fine. I did have another back attack in January and then some pain in my spleen/kidney area in February but the hospital was very puzzled about it and found nothing wrong with me. They did an ultrasound last month and discovered that my liver had changed sizes within three months but that wouldn't account for the pain since the pain was in a different area . (Nothing to do with arthritis, but it's pain related).

This was how my friends saw me during this time. They could only see the fact that I couldn't walk /had difficulty walking. I think it's difficult for many to fathom that it's related to bowel issues as I was diagnosed  with Crohn's when I returned to Canada. And then people get weird about bowel diseases. I'm a very open person but it's really an invisible illness unless I get the arthritis. And that's the only thing people can see what's wrong with me. They will ask me "oh how are your legs" but it's not just that. That's just one symptom out of nineteen.

Thank goodness I finally have my life back because not being able to walk really robbed me of all independence. I had to quit my job and lost a lot of money to return to Canada for treatment and while I am still sad about all my previous opportunities, nothing can be more important than good health. And thank goodness doctors took serious action when they saw me in Canada because in Hong Kong, they were just letting me suffer on pain killers and arthritic medication when what I needed was steroid treatment.

If anybody feels like they've had a similar experience with pain attacks, let me know. I feel like my symptoms are different from others and it would be nice to know that I'm not alone. Hopefully they don't ever come back, but it sounds like they do with flares and I'm not looking forward to that. I can deal with bowel stuff, but not the arthritis. It is seriously the worst thing I could wish upon anyone.

That's my story, sorry it was so long!


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## Christi

I think i might have athritis as all the pain in my hands, feet and knees are pain in my bones and nothing seems to relief the pain i am seeing my GI tomorrow and hope we can get something sorted. When my feet and knees hurt i cant walk and when my hands are a problem i cant even hold a cup


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## ronroush7

Chiropractor helps mr


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## ronroush7

Me


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## Charlotte.

@Archeogirl: Thank you so much for sharing! That sounds like a tough journey and I can relate to your attack-like symptoms. Mine have been quite similar in many aspects, I can also relate to this "robot"-like walking etc. I describe the pain that I have like a big truck parking on my knees and ankles and not moving forward a single bit. In my other joints the pain feels different, brighter, sometimes cramp-like, not easy to tolerate as well. 
Hope you won't have these attacks in the nearer future again and that remission keeps stable for a very long time. And yes, prednisone/prednisolone is such a miracle drug. During my first course of just budesonide, my arthritis pain was gone on the second day :-D and returned on the fourth, as budesonide is just not strong enough for my Crohn's...


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## Charlotte.

@Christi: What did your doctor say? Did he refer you to a rheumatologist?


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## my little penguin

Ds is 12 and has both
He was dx with crohns at age 7
And juvenile spondyloarthritis at age 10.
His is independent of Gi flares 
He takes humira weekly and Mtx for crohns and arthritis

He uses volteran gel daily on his heels ankles knees and neck
He uses paraffin wax on his hands plus resting hand splints
Hot packs /cold packs and swimming weekly help a lot 
He is hla b27 positive


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## Christi

Charlotte my GI sent me for xrays , my knees were so sore on thursday i could barely step on it and climbing stairs were also painfull jeez my hands still gets sore and this makes me so sad for two days now my feet are so swollen i can barely see my ankles


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## Archeogirl

Christi, not sure what xrays will tell you. I had xrays when I had my second knee/ankle attack and they couldn't find anything wrong. They actually said it was probably a pinched nerve in my back, gave me some Tylenol and menthol rub and sent me to hobble home. This was pre being diagnosed with Crohn's though.
 Are you having blood tests to examine your inflammation levels?


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## Christi

Archeogirl yes they took some blood aswell i hope that helps in some way


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## Charlotte.

@my little penguin: You name it, swimming. It also makes a huge difference for me. I had to give up road biking as well, after already having given up all my other sports including dance, yoga etc. Swimming is not fun for me but it's worth it in terms of minimal pain afterwards, especially the better I am in the different styles regarding technique.


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## Jomo73

Hi all. This is my first time on here so reading your stories and all posts it has inspired me to introduce myself. My name is Jo,I'm 43 years old and have had Crohn's disease since 2005. In the last 3yrs I have undergone 4 ops including total removal of my anus and the majority of my intestines resulting in an Illeostomy that recently had to be re-sited due to a bit of a mess from a previous surgery in April of last yr. 
In the last few months I started experiencing a lot of pain in lower back,hips,wrists,knees and swelling of my feet. After being referred to a Rheumatologist I was given an MRI and Bone Densa scan which resulted in the diagnosis of Ostoeopina....which I am told is not as bad as Osteoperosis...I feel for all having being diagnosed with this as the pain I experience results in getting worse by sitting too long and even wakes me numerous times a night!!
My meds have previously all failed so I am now on meds called Salazopyrin which haven't made a blind bit of difference considering they're supposed to help Rheumatoid Arthritis!!! As well as this I have an injection of steroids into my bum every fortnight which also doesn't last too long at all!!!
This forum as well as the others are a great help and sooo informative
Thanks for taking your time to read this and I hope all goes well for all

Kind regards

Jo


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## ronroush7

Welcome.  I am sorry for all you are going through.  I hope they can get you on the right mixture of medicines soon.  Looking forward to hearing more from you.


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## Archeogirl

Jo - it sounds like you've been through hell with all those operations. I too hope they can find the right mixture of immunosuppressants/anti-inflammatories for you. For me, a three month treatment of prednisone saved my life. I am pain free going on nearly six months now and my  joints are strong again. So I have hope that something will be found for you to return your life to some semblance of "normal". 
 xx


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## Johaan458

Christi said:


> I think i might have athritis as all the pain in my hands, feet and knees are pain in my bones and nothing seems to relief the pain i am seeing my GI tomorrow and hope we can get something sorted. When my feet and knees hurt i cant walk and when my hands are a problem i cant even hold a cup


One of my friends also had knee arthritis problem, and she is taking acupuncture treatment from physiomobility Richmondhill, and now she is getting free from her pain. I think acupuncture is the best alternative treatment for arthritis. Many of those who try it find it to be surprisingly effective. I think acupuncture treatment will benefit you too. Just take a try.


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## Charlotte.

Johaan458 said:


> One of my friends also had knee arthritis problem, and she is taking acupuncture treatment from physiomobility Richmondhill, and now she is getting free from her pain. I think acupuncture is the best alternative treatment for arthritis. Many of those who try it find it to be surprisingly effective. I think acupuncture treatment will benefit you too. Just take a try.


I tried acupuncture at a specialist centre for Chinese Medicine and it made my Crohn's worse (cramps and more tight feeling of the muscles around the intestines etc.) BUT it did help some for my arthritis pain, nothing for the degree of inflammation, but the pain decreased for a few days, so I had to go there very very often. As I was working as well, I could not go as often as I would have needed during the weeks, so eventually I stopped seeing that doctor. 
It also “covered" the real degree of inflammation, e.g. in my ankle, so I thought my condition would improve, which was not true. I should have changed medication earlier in order to really address the inflammation, not JUST the pain. If you address both, well done!


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## DEmberton

I've never been diagnosed with arthritis, but over the years I'd get a lot of joint pain that I always put down to just being generally unfit and spending half my life in front of computer screens. When I was finally diagnosed with Crohns and read about the link to arthritis the penny dropped.

I noticed this as an 18 year old, and I remember mentioning it to a friend who then made fun of me calling me "Arthritis Man".:biggrin: That was about 5 years before the bowel issues started.

I'm currently on Budesonide for the second time (and Aza for 2 weeks) and actually have been doing quite well. I had a good week and a half of being pretty much normal, and then I noticed some ankle pain and sure enough the bowel symptoms followed. Then I got better again for another week or so, and today started to feel pain and stiffness and again some loose stools. I don't think in the past I ever had quite this correlation, but this time it certainly seems the two are locked together.


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## Jomo73

I have been on both of those meds and am actually allergic to Aziathioprine! I always did have the odd pain since diagnosis in 2005 but just put it down to my age .... As u do lol. When the pain actually got worse after my latest op Nov of last year I was sent to see a Rheumatologist who after asking symptoms came straight out and said "sounds like ankolosing spondylitis!!??!! As I've said in previous posts I had an MRI and a bone density scan and was finally diagnosed as having osteopina...part of the osteo arthritis family! Am currently on sufasalazine which is actually a drug used for rheumatoid arthritis,,2and a half months in and the pain ,if anything is getting worse instead of better...was only saying to my partner last night that I can't honestly remember the last time I slept all night long without waking up between 3 & 4 times a night,I spose having an illeostomy has something to do with that tho right!!!


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## Charlotte.

@DEmberton 

Sounds a lot like mine currently. Have you seen a rheumatologist? The only “advantage“ that I see in having extrainstestinal symptoms is that you have another chance to monitor the effectiveness of medication by doing ultrasound of the joints. I thought my previous biologic would eventually be effective enough, but my joints proved me wrong. Elemental diet just lead to the fact that I felt quite okay Crohn's-wise, as I was not eating, but it did not help the inflammation in my body.


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## Charlotte.

@Jomo73

Is it certain that it's ankylosing or fusing already or is it “just“ inflammation? Do you know which part of the spine is affected?
My sacroiliac joints are inflamed, but not fusing, normal spondylitis though. Aza is not working in the spine btw, only MTX, Aza would only make sense along with a biological to slow down the process of developing antibodies against the biological. 
Fingers crossed for sulfasalazine! Tried that for my Crohn's and arthritis as well some time ago.
I have osteopenia as well, it did not get worse during the last year, I just had several scans. And I'm quite sure that it does not have to do anything with steroids for me, I always was quite skinny as a teenager and my Crohn's was undiagnosed for such a long time, so I will definitely been lacking of many nutrients for a very long time. Now, that I see a nutritionist and also started eating dairy, fish and eggs again, I'm not worried at all, regarding my osteopenia.


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## MizzSarah

I've had joint problems long before I was diagnosed with Crohn's. I went through rheumatology. Explained to them I started off experiencing severe joint pain in my left ankle.  Eventually the pain started to affect all localized joints. Swelling.. strange rashes etc. They couldn't determine arthritis was a cause so they gave me the term idiopathic pain syndrome as the culprit.  Couldn't rule out arthritis either but they couldn't explain why I was having those issues.

Fast forward 7 years and I was diagnosed with Crohn's. Guess mine started backwards. 

I should make a follow up with a rheumatologist. Maybe they'll find the arthritis now and not give me such a bland reasoning To a 14 year old kid being told it's idiopathic pain syndrome, I figured it was derived by the term 'idiot'  that played with my mind for years. Even now I still have a hard time being told sorry we can't figure out what's wrong with you so here is a diagnosis just to ease you from thinking your crazy...


Sorry guys.  Had to vent


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## EmmaLou

Hello! 

 I developed sacroileitis with my last flare in July. They did surgery a week after I was admitted, and even though the back pain started with the flare on 26th July, the surgeon and his junior doctors were adamant that it was stiffness caused by four hours on my back during the operation on 1st August. Would love to know how that works!!! When my GI consultant came to see me he diagnosed the sacroileitis and said it should have been obvious given my diagnosis of Crohn's. 

 In September I started with stiffness and discomfort in my fingers which progressed to pain in my hands, wrists, elbows and shoulders. It's at its worst in my knees. Climbing stairs and getting up from sitting is very painful  The answer seems to be lots of pain meds and hope the Humira works, but have now been told my white blood count is too low so likely being taken off the Humira. 

 Really feel for everyone dealing with this. The Crohn's is bad enough, without joint pain and associated restrictions to mobility.


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## Abbynormal

Hi everyone, I've come to ask for a it of advice 
I've been suffering with my joints more and more lately and was referred to a rheumatologist. She followed out some test and said that she cold feel swelling in some of my joints and sent a request for me to have a pelvis and spine MRI and an ultrasound on my hands. She said that if it came back showing that I had spinal inflammation she would want to change my vedolizumab to a tnf. I have already failed humira and don't particularly want to swap to remicade as I'm finally reaching the point where my infusion should start working and I don't want to be back at the beginning. I wanted to know if any of you take methotrexate and if you can have it as a combination with other meds like the vedolizumab. If I don't have spinal inflammation then she said she would add sulfasalazine- has/ does anyone take this? Does it work?
Thank you for reading,
Abby


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## jonique

Abbynormal said:


> Hi everyone, I've come to ask for a it of advice
> I've been suffering with my joints more and more lately and was referred to a rheumatologist. She followed out some test and said that she cold feel swelling in some of my joints and sent a request for me to have a pelvis and spine MRI and an ultrasound on my hands. She said that if it came back showing that I had spinal inflammation she would want to change my vedolizumab to a tnf. I have already failed humira and don't particularly want to swap to remicade as I'm finally reaching the point where my infusion should start working and I don't want to be back at the beginning. I wanted to know if any of you take methotrexate and if you can have it as a combination with other meds like the vedolizumab. If I don't have spinal inflammation then she said she would add sulfasalazine- has/ does anyone take this? Does it work?
> Thank you for reading,
> Abby


I failed four tnf. I'm now on stelara and it works quite well for the inflammatory arthritis.  Methotrexate gave me severe nausea and fatigue. Sulfasalaxine gave me severe nausea.


----------



## Maya142

> Hi everyone, I've come to ask for a it of advice
> I've been suffering with my joints more and more lately and was referred to a rheumatologist. She followed out some test and said that she cold feel swelling in some of my joints and sent a request for me to have a pelvis and spine MRI and an ultrasound on my hands. She said that if it came back showing that I had spinal inflammation she would want to change my vedolizumab to a tnf. I have already failed humira and don't particularly want to swap to remicade as I'm finally reaching the point where my infusion should start working and I don't want to be back at the beginning. I wanted to know if any of you take methotrexate and if you can have it as a combination with other meds like the vedolizumab. If I don't have spinal inflammation then she said she would add sulfasalazine- has/ does anyone take this? Does it work?
> Thank you for reading,
> Abby


You can take MTX with Vedolizumab. However, Methotrexate does not work well for spinal inflammation, which is why she is recommending an anti-TNF if you do have spinal inflammation.

CCFA has a good fact sheet about the various kinds of arthritis associated with IBD:

http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

If you have spinal/sacroiliiac joint inflammation, that suggests that you have axial spondyloarthritis. Axial spondyloarthritis is a type of arthritis that affects the spine (and can affect other joints - such as knees, ankles, hands - any joint really).

 Unlike peripheral arthritis, which flares when your IBD flares, it can flare independently of your IBD so it really does need to be treated. It can also cause permanent damage to your joints, which obviously you do not want. It can also progress to Ankylosing Spondylitis.

The only treatments for axial spondyloarthritis are NSAIDs (which aren't an option for most people with IBD) and anti-TNFs. There is some data suggesting that Stelara works too, but it's still in trials. 

Remicade is typically the anti-TNF that works fastest. Even though you failed Humira, that doesn't mean you'll necessarily fail Remicade. 

Good luck!


----------



## Abbynormal

Thanks for taking the time out to reply Jonique and Maya 
I go for an ultrasound on my hands in a couple of weeks. I'm still in a lot of pain and nothing seems to make it better. My hands and feet seem to be taking it in turns to swell and my joints just seem to constantly ache. 
I know the tnf is the best option I just feel it's a step backwards as I feel the vedolizumab has finally started working but it doesn't offer any ease on my joints. I guess I will have to wait and see and hope that it's not spinal inflammation so that I don't have to switch my infusion


----------



## warrior2

hydroxychloroquine sulfate 200 mgs 1 tablet twice daily with food has been helping me so far control the aches and pains of prednisone withdrawal which was 4 months ago when i completely got off it. been on pred over 25 yrs. the colon came out recently and i no longer need the steroid. 

hello, i just joined the grp for sharing and information. IBD and arthitis go hand in hand.. no one found the root of it but these drugs, cant be the total answer. I saw a commercial on t.v. about a pill for arthitis. they proposed pills "out there" treat the symptoms but dont cure the root. this drug they advertised treats the root of arthitis by nurishing the joint. interesting way to sell a product. comments?


----------



## bambamdilla

What's the name of the drug you saw advertised?


----------



## Barricade007

Hello all, Thanks for this support group and am glad i am not the only one with the Arthritis problem as well. Some days the arthritis is worse then the Crohn's. Im new to this thread and am just looking for others experiance and knowledge when it comes to Crohn's and these other symptoms. I was diagnosed last year with Crohn's along with Arthritis in my back. My GI doc said they are linked. With the arthritis I have trouble sleeping throughout the night and am always have to be on my back. My wife has also told me that when I sleep i am breathing very shallow and at times gasp for air. I have not been diagnosed with sleep apnea, but am thinking that is what it is. I am currently on Budesonide 9mg a day, however does not really do anything for my back.

Anyone else share these symptoms and what they have done to help with them? 

After reading this over it sounds like i am 85..... but am only 33...... ugh....

Thanks everyone!!


----------



## BeccaB

Hello new to posting here 38 year old female. I have recently been diagnosed with the gene HLA-B27 responsible for the IBD and Spondyloarthropathy. I have always had stomach issues since a kid but nothing horrible until about 8 years ago when I turned 30 (maybe a year or two before that) I keep getting admitted to hospital with horrendous right side abdominal pain, I was in tears it hurt so bad couldn't eat could sit up horrible diarrhea and cramping and nausea. Symptoms have come and gone but they still basically remain. They diagnosed me with IBS-D because every test came back normal. I have been on Bentyl and Lomotil. Now 8 years later this year I have had two horrible flares again one last summer and one 2 months ago (follow but horrible hands and feet arthritis which I have never really noticed having before now) I was also diagnosed this time by stool sample with E. Coli 0157.  I just don't think the Dr's are finding it despite the tests. Gallbladder and Liver are OK also. I am getting the PillCam next week though I demanded it as I heard Crohn's can hide in small intestine sometimes.  My questions I guess for people are my gut feeling this whole time is its Crohn's and NOT IBS, have any of you on here waited years for them to find out you had Crohn's and diagnose you?  My Dad keeps thinking they surely would have found it after 8 years. I any never heard of anyone this sick from IBS.  Symptoms during bad flames horrible right quadrant stomach pain (mostly upper right) nausea, loss of appetite, pain after eating, extreme fatigue. I also take B-12 shots once a week for B-12 deficiency, joint pain, diarrhea, abdominal pain, low energy. After flare I slowly regain normal life and am OK minus occasional stomach issues. But usually still require Bentyl. I take probiotics, gluten free, and LOW FODMAP. I have a long history of medical issues since childhood including joint pains, allergies, sinus issues, and had Lyme Disease back in 1994. I have tired everything, I'm exhausted any replies are really appreciated. Thank you!!


----------



## DEmberton

Hi Becca. I was told "just IBS" when I was 25 after a gastroscopy and sigmoidoscopy (but not a colonoscopy) found nothing. When I was 42 and having got a lot worse and losing a lot of weight over a year they looked properly and I was diagnosed with Crohns. I think it's quite a common story around here.

I hope you get an answer soon.


----------



## MizzSarah

I have a question for you guys that have been diagnosed with arthritis. How was it determined you have it?

I've had joint issues for many years now, I'm sure connecting with the Crohn's. I saw a rheumatologist as a child but I can't recall ever getting blood work to determine if I have a rheumatoid factor etc. Recently had bloodwork done for my referral to an adult rheumatologist and if I am correct---I was positive for HLA B27 and obviously my c reactive protein is an intermediate risk. Would this be enough for a diagnosis?


----------



## ronroush7

I was in ER a couple of years ago for problems related to the Crohn's disease.   They, out of the  clear blue, did an x-ray and found minor arthritis in my lower back.


----------



## my little penguin

Mizzsarah
Hla b27 is more common with spondyloarthritis 
It's common in Crohns patients
It can be dependent which means it moves from joint to joint (mainly lower joints ) during GI inflammation 
Or independent 
Independent flares on the joints regardless of the GI inflammation 

The rheumo will need to exam all your joints and possible do imaging ultrasound /X-ray or MRI 
Most require seeing the inflammation present 
Some require seeing the patient with issues for 6 months prior to officially dx SpA
But may still treat prior to the official dx

Tagging Maya142 

Ds has the kiddie version
JSpA 
His is independent of his Crohns flares

And affects his hands the worst 

http://www.spondylitis.org/Enteropathic-Arthritis


----------



## Maya142

> Recently had bloodwork done for my referral to an adult rheumatologist and if I am correct---I was positive for HLA B27 and obviously my c reactive protein is an intermediate risk. Would this be enough for a diagnosis?


Just being HLA B27+ is not enough to diagnose you with SpA. But if you have other symptoms - such as morning stiffness, pain that gets better with movement, swollen or red or warm joints - then it could certainly be SpA. Usually the lower back (SI joints) and hips are involved but honestly any joint can be involved.

Generally the rheumatologist will examine you and will probably do some imaging. X-rays are the first step and if those are negative, then probably an MRI will be done.

Spondylitis.org has lots of information about SpA. There are two basic types of SpA - axial and peripheral. In axial SpA the spine is involved and in peripheral SpA, the spine isn't involved. Both are usually treated with NSAIDs and if those fail, then biologics. Since most Crohn's patients cannot take NSAIDs, biologics are often used. Methotrexate works well for peripheral joints (joints other than the spine - knees, hands, elbows, heels, ankles etc.) but not for the spine. Sulfasalazine is also occasionally used.

Typically, you either need inflammation visible on MRI or elevated CRP before they will consider biologics for axial SpA. 

Good luck!


----------



## MizzSarah

what makes no sense is that my RF level was negative so now I'm being referred to 2 different rheumatologist. I guess my case requires a two person opinion.

I'm worried they won't find anything in X-rays or MRI's and will give me some title for unexplainable pain and inflammation. As a child before the onset of the Crohn's I had tremendous joint pain  and inflammation. Originally thought to be a result of a bug bite that then progressed to all my joints. They first diagnosed me with reflex sympathetic dystrophy (one ankle was swollen.) little blood flow appeared to be going into my left ankle.(some test they did) Then I got the idiopathic pain syndrome which I still have flashbacks of someone telling me it's derived from the word idiot... 

I just feel like their setting me up for another combination of disappointments. :ybatty:






Maya142 said:


> Just being HLA B27+ is not enough to diagnose you with SpA. But if you have other symptoms - such as morning stiffness, pain that gets better with movement, swollen or red or warm joints - then it could certainly be SpA. Usually the lower back (SI joints) and hips are involved but honestly any joint can be involved.
> 
> Generally the rheumatologist will examine you and will probably do some imaging. X-rays are the first step and if those are negative, then probably an MRI will be done.
> 
> Spondylitis.org has lots of information about SpA. There are two basic types of SpA - axial and peripheral. In axial SpA the spine is involved and in peripheral SpA, the spine isn't involved. Both are usually treated with NSAIDs and if those fail, then biologics. Since most Crohn's patients cannot take NSAIDs, biologics are often used. Methotrexate works well for peripheral joints (joints other than the spine - knees, hands, elbows, heels, ankles etc.) but not for the spine. Sulfasalazine is also occasionally used.
> 
> Typically, you either need inflammation visible on MRI or elevated CRP before they will consider biologics for axial SpA.
> 
> Good luck!


----------



## ronroush7

Sending support,  Sarah


----------



## Maya142

RF levels are always negative in spondyloarthritis. ESR and CRP are sometimes elevated, sometimes not. My younger daughter has an elevated CRP, my older daughter has negative blood work, always.

Most people with SpA are HLA B27+ but it is also possible to have SpA and be HLA B27-.

I would try not to panic. Just take it one step at a time. 

Pain syndromes are very real and are thought to be related to nerves sending pain signals when they should not. My younger daughter has amplified pain syndrome, on top of the arthritis. Her doctors say that because her joints were so inflamed for so long, her nerves just got used to sending pain signals to her brain. Once we managed to get the inflammation under better control, they STILL continued to send those signals and she continued to be in pain. 

Amplified pain syndrome is treated with intensive PT and OT and aquatherapy as well as cognitive behavioral therapy to learn how to cope with the pain. My daughter did an inpatient pediatric pain program that combined all these things. It really helped. She went from being completely unable to function because of the pain to a much more active and happier teenager. She started sleeping through the night for the first time in years!

There are also medications like Gabapentin and Lyrica which really help some people with pain syndromes.

I would take it one step at a time - first see the rheumatologist (or two) and see what they think you have. Then take it from there.


----------



## Maya142

I wanted to add - the inflammation is easily seen on MRIs, so you don't need to worry about that. If there is inflammation, it will show up on MRIs. 

X-rays don't show inflammation, just damage from past inflammation. Damage can take 8-10 years to show up on x-rays, so they are often normal early in the course of the disease.


----------



## MizzSarah

I was apart of a children's pain program as well and they seemed very eager to discharge me even after I plead that I wasn't ready yet.  Glad to hear your daughter benefited from her program. I hope they weren't pushing her to be discharged from the program so quickly as I was. 



Maya142 said:


> RF levels are always negative in spondyloarthritis. ESR and CRP are sometimes elevated, sometimes not. My younger daughter has an elevated CRP, my older daughter has negative blood work, always.
> 
> Most people with SpA are HLA B27+ but it is also possible to have SpA and be HLA B27-.
> 
> I would try not to panic. Just take it one step at a time.
> 
> Pain syndromes are very real and are thought to be related to nerves sending pain signals when they should not. My younger daughter has amplified pain syndrome, on top of the arthritis. Her doctors say that because her joints were so inflamed for so long, her nerves just got used to sending pain signals to her brain. Once we managed to get the inflammation under better control, they STILL continued to send those signals and she continued to be in pain.
> 
> Amplified pain syndrome is treated with intensive PT and OT and aquatherapy as well as cognitive behavioral therapy to learn how to cope with the pain. My daughter did an inpatient pediatric pain program that combined all these things. It really helped. She went from being completely unable to function because of the pain to a much more active and happier teenager. She started sleeping through the night for the first time in years!
> 
> There are also medications like Gabapentin and Lyrica which really help some people with pain syndromes.
> 
> I would take it one step at a time - first see the rheumatologist (or two) and see what they think you have. Then take it from there.


----------



## Hobbits

*Hello, I have RA & Crohns.  I was diagnosed with RA four years ago, and Crohns this past March, so I am newly diagnosed.  I live in Canada, and dont know if any other Canadians are on here, but hoping someone can offer some advice.  

I work full time, my RA was controlled by was Enbrel, but I believe its now failing.  I will be starting Remicade infusions on Oct 20th to treat both RA and Crohns. 

Can anyone tell me the pros of disclosing medical information to your employer? does it generally help you, or hurt you?

My employer does not know i have RA, too many people are misinformed and dont understand it, this is not something I plan to disclose to my employer unless I have to miss alot of work because of it.

However, co-workers and supervisor are aware I have Crohn's, my supervisor said she has to report it to HR.  So I guess now HR knows.  Should I be contacting HR to clarify as I have no idea what exactly my supervisor told them.  I am awaiting an MRI in November to determine if I need surgery on a stricture, and Remicade infusions are starting soon. I will be missing some work because of this.  

Is it in my best interest to talk to HR myself, and what exactly do you tell them? how much do you tell them?  I dont want my absences counted against me, as they are not something I can help. I also dont want any prejudices or hold backs on my career because of my condition.  I am well liked and respected, but I have seen they way other employees have been handled, and I am kinda scared.
*


----------



## ronroush7

I would make sure of what HR has been told.  I am going to tag cmack.


----------



## my little penguin

Is the US there is family medical leave act 
Hr typically has an outside company 
This protects your job when you need to leave due to Crohns
I would check for something similar 
First before talking to hr


----------



## my little penguin

https://www.ontario.ca/document/your-guide-employment-standards-act/family-medical-leave


----------



## Hobbits

ronroush7 said:


> I would make sure of what HR has been told.  I am going to tag cmack.


Thank you.


----------



## Hobbits

my little penguin said:


> Is the US there is family medical leave act
> Hr typically has an outside company
> This protects your job when you need to leave due to Crohns
> I would check for something similar
> First before talking to hr


Thank you.


----------



## cmack

Hobbits said:


> *Hello, I have RA & Crohns.  I was diagnosed with RA four years ago, and Crohns this past March, so I am newly diagnosed.  I live in Canada, and dont know if any other Canadians are on here, but hoping someone can offer some advice.
> 
> I work full time, my RA was controlled by was Enbrel, but I believe its now failing.  I will be starting Remicade infusions on Oct 20th to treat both RA and Crohns.
> 
> Can anyone tell me the pros of disclosing medical information to your employer? does it generally help you, or hurt you?
> 
> My employer does not know i have RA, too many people are misinformed and dont understand it, this is not something I plan to disclose to my employer unless I have to miss alot of work because of it.
> 
> However, co-workers and supervisor are aware I have Crohn's, my supervisor said she has to report it to HR.  So I guess now HR knows.  Should I be contacting HR to clarify as I have no idea what exactly my supervisor told them.  I am awaiting an MRI in November to determine if I need surgery on a stricture, and Remicade infusions are starting soon. I will be missing some work because of this.
> 
> Is it in my best interest to talk to HR myself, and what exactly do you tell them? how much do you tell them?  I dont want my absences counted against me, as they are not something I can help. I also dont want any prejudices or hold backs on my career because of my condition.  I am well liked and respected, but I have seen they way other employees have been handled, and I am kinda scared.
> *


Hi,

I'm in Canada and if I were you I would not tell them any further details other than what they already know. The first step is to talk to your physician and if they agree that you suffer from a disability, then have them write a letter explaining your situation (permanent disability in your case). This info is between you and your doctor only. After that you need to apply for disability coverage federally. You should call (1-800-ocanada) they will refer you to the proper process and your local facilities where you can apply. Once you have permanent disability status it is your own business and people and businesses face serious penalties for discrimination of disabled people. Don't tell your work at all about your application for disability, everything should remain between the doctor, you and the feds. You are liable to be written off the schedule if they catch wind that you are disabled before you hold that official status. Then you have the right to not be discriminated against.

I hope this helps, if not pm me,

Chris


----------



## cmack

It may end up being provincial but the federal government is where I started and they led me in the right direction. Again, once you get a doctors letter with signature saying you have a permanent disability. Then next you call 1-800-ocanada and they will direct you from there. I'm wishing you the best. It's confidential.


----------



## Hobbits

my little penguin said:


> Is the US there is family medical leave act
> Hr typically has an outside company
> This protects your job when you need to leave due to Crohns
> I would check for something similar
> 
> First before talking to hr


Thank you!


----------



## Hobbits

cmack said:


> Hi,
> 
> I'm in Canada and if I were you I would not tell them any further details other than what they already know. The first step is to talk to your physician and if they agree that you suffer from a disability, then have them write a letter explaining your situation (permanent disability in your case). This info is between you and your doctor only. After that you need to apply for disability coverage federally. You should call (1-800-ocanada) they will refer you to the proper process and your local facilities where you can apply. Once you have permanent disability status it is your own business and people and businesses face serious penalties for discrimination of disabled people. Don't tell your work at all about your application for disability, everything should remain between the doctor, you and the feds. You are liable to be written off the schedule if they catch wind that you are disabled before you hold that official status. Then you have the right to not be discriminated against.
> 
> I hope this helps, if not pm me,
> 
> 
> 
> Chris[/QUOTE
> 
> Thank you so much!


----------



## Hobbits

Hobbits said:


> cmack said:
> 
> 
> 
> Hi,
> 
> I'm in Canada and if I were you I would not tell them any further details other than what they already know. The first step is to talk to your physician and if they agree that you suffer from a disability, then have them write a letter explaining your situation (permanent disability in your case). This info is between you and your doctor only. After that you need to apply for disability coverage federally. You should call (1-800-ocanada) they will refer you to the proper process and your local facilities where you can apply. Once you have permanent disability status it is your own business and people and businesses face serious penalties for discrimination of disabled people. Don't tell your work at all about your application for disability, everything should remain between the doctor, you and the feds. You are liable to be written off the schedule if they catch wind that you are disabled before you hold that official status. Then you have the right to not be discriminated against.
> 
> I hope this helps, if not pm me,
> 
> 
> 
> Chris[/QUOTE
> 
> Thank you so much!
> 
> 
> 
> Does having Crohns mean I have a disability? I'm not sure I would qualify for a disability because I can walk and function. Does a crohnic illness count as a disability?
Click to expand...


----------



## Hobbits

cmack said:


> It may end up being provincial but the federal government is where I started and they led me in the right direction. Again, once you get a doctors letter with signature saying you have a permanent disability. Then next you call 1-800-ocanada and they will direct you from there. I'm wishing you the best. It's confidential.


Thank you for the information. It is very helpful. I have no one who knows about or understands these things.


----------



## cmack

Hi, Hobbits

You need to have a talk with your doctor about how your diseases CD and RA are affecting your life and work in general. Then the doctor may decide to support you with a letter regarding disability status. Since CD and RA don't go away, only into remission, I think you would be considered to have a type of permanent disability. It's not like it's going to make it so you can never work again, but you will be covered somewhat if you miss time at work due to flares or other medical issues like pain from the RA. It is also a way harder to be "let go" because of absences if you have disability status.


Best regards,

Chris


----------



## Ih8crhns

Hello peeps! Looking for a little advise. Diagnosed Crohn's spring of 2016. Pretty hard headed so really did not do any thing until after x-mas 16. Got tired of crapping in the woods walking my dogs Started remicade and it was working great then came June and it was not a couple of weeks after an infusion and my joints started going nuts. Hands ankles knees elbows neck feet wrists, ect. Called GI and he wanted nothing to do with it. Next came my Rhuemy. U have Crohn's Arthritis. i mean i could hardly move. my stomach seems fine no urgency pain none of that. So Doc jumps Remicade from 6 to 8mg? every 8 weeks still. Had infusion Aug 25. maybe had 1 week of solid releif. Had infusion 10/25. Still have pain. Tired of thinking Remicade is going to work. Should i not be pulling the plug on Remicade? Need some dam releif. Feels good to get on here and vent. Few! I swear there is smarter people on here than some of these Doc.


----------



## ronroush7

Ih8crhns said:


> Hello peeps! Looking for a little advise. Diagnosed Crohn's spring of 2016. Pretty hard headed so really did not do any thing until after x-mas 16. Got tired of crapping in the woods walking my dogs Started remicade and it was working great then came June and it was not a couple of weeks after an infusion and my joints started going nuts. Hands ankles knees elbows neck feet wrists, ect. Called GI and he wanted nothing to do with it. Next came my Rhuemy. U have Crohn's Arthritis. i mean i could hardly move. my stomach seems fine no urgency pain none of that. So Doc jumps Remicade from 6 to 8mg? every 8 weeks still. Had infusion Aug 25. maybe had 1 week of solid releif. Had infusion 10/25. Still have pain. Tired of thinking Remicade is going to work. Should i not be pulling the plug on Remicade? Need some dam releif. Feels good to get on here and vent. Few! I swear there is smarter people on here than some of these Doc.


I would as ask the doctor about other medicine instead of Remicade.   I might consider seeing a rheumatologist.


----------



## Ih8crhns

i am seeing a Rhuemy. His thoughts were to optimize the remicade. My thought is the remicade has always been there. Why is it not working!? Could it be the culprit? prednisone does not even touch this garbage.


----------



## ronroush7

Ih8crhns said:


> i am seeing a Rhuemy. His thoughts were to optimize the remicade. My thought is the remicade has always been there. Why is it not working!? Could it be the culprit? prednisone does not even touch this garbage.


I wonder if you have built up antibodies?


----------



## cmack

I would consider another opinion, also it may take time to see improvements from the dosage increase.


----------



## Ih8crhns

ronroush7 said:


> I wonder if you have built up antibodies?


I had the Prometheus test. No Anti bodys.


----------



## More Than Pickles

I had almost the same situation. Joint pain that started after starting Remicade in late ‘16. Saw a rheumatologist.  Started on MTX injections once a week, maintained the same 5mg per kilogram of weight of Remicade every 6 weeks. Within 6 weeks I started seeing improvement. I still get joint pain from time to time, on week 18 of MTX, but no where near what it was before. You need to stay on the Remicade. Just add something for the joint pain that comes with Crohn’s! Yeah ..... best of luck.


----------



## my little penguin

Tagging Maya142 

Ds was on humira when joint pain started
Rheumo added mtx pills to humira
This helped the joint pain


----------



## MizzSarah

I also am in Canada. I still work but had to put in an absence leniency accommodation through my job. Basically as an assurance that I could not be let go due to illness etc. The only people that know is the disability liaison through HR who basically lets whoever needs to that I have an accommodation. No details of my actual conditions is told but they do verify that I have an existing accommodation. (It's a pain to have to renew this every year though) 

I always advise people to never disclose your medical condition unless there being no way around it. If you do persue getting permanent disability keep it strictly need to know basis. It's always great to have as a back up plan.


----------



## MizzSarah

I had arthritis mimicking issues long before I was diagnosed with CD. My joint pains have only intensified since diagnosis. I now have a narrowing spine. Saw a rheumatologist who says it's Crohn's related arthritis but it's concerning to the extent of how quickly my joints are deteriorating that she wants me to up my dose of Humira. I'm 24 years old. Recently had to quit one of my physically demanding jobs as a result of the quick deterioration. I've always made sure to have vitamins evetydsy since I was a young child and unfortunately even that has not helped.  

I have two MRi's to examine the extent of damage but besides that I'm pretty much at a loss. 

Definitely get a second opinion while you can. Do everything you can do before it worsens. The CD we eventually learn to cope with but once your joints are shot it's hard to come back from. 




Ih8crhns said:


> Hello peeps! Looking for a little advise. Diagnosed Crohn's spring of 2016. Pretty hard headed so really did not do any thing until after x-mas 16. Got tired of crapping in the woods walking my dogs Started remicade and it was working great then came June and it was not a couple of weeks after an infusion and my joints started going nuts. Hands ankles knees elbows neck feet wrists, ect. Called GI and he wanted nothing to do with it. Next came my Rhuemy. U have Crohn's Arthritis. i mean i could hardly move. my stomach seems fine no urgency pain none of that. So Doc jumps Remicade from 6 to 8mg? every 8 weeks still. Had infusion Aug 25. maybe had 1 week of solid releif. Had infusion 10/25. Still have pain. Tired of thinking Remicade is going to work. Should i not be pulling the plug on Remicade? Need some dam releif. Feels good to get on here and vent. Few! I swear there is smarter people on here than some of these Doc.


----------



## Whit

Hello all and I am very grateful for this support group. I have been dealing with Crohns all my life and in the past few years my ankle subtalar joints have lost most of their cartilage making it very difficult to walk. 
My digestive health doc says I can take celebrex along with the MTX I am presently taking. Before I fill the perscription I thought I'd check with the forum and find out about other's experiences with celebrex.
Thanks in advance.
Whit


----------



## my little penguin

Going to tag Maya142 

My kiddo has arthritis as well as Crohns 
He is currently on Celebrex/mtx and Stelara 

Other nsaid do bother my Ds stomach 
He just had a scope past week 
No damage from the Celebrex


----------



## Maya142

> I have been dealing with Crohns all my life and in the past few years my ankle subtalar joints have lost most of their cartilage making it very difficult to walk.


My daughter has both Crohn's and severe arthritis - Ankylosing Spondylitis. Because her arthritis is so severe, she is allowed to take an NSAID. Through trial and error, we figured out that there are MANY she cannot tolerate at all because they cause stomach pain, nausea, gastritis etc. but there are a few she can tolerate.

Celebrex is one of them. It is easiest on the GI tract. She does need to take a PPI with it to prevent gastritis, but not everyone has to.

I also wanted to ask if you have osteoarthritis or inflammatory arthritis (spondyloarthritis or Crohn's related arthritis/enteropathic arthritis)? Because if it is inflammatory and you have so much cartilage loss on MTX, then you probably need to be on a biologic.

In terms of walking, have you tried orthotics? A podiatrist can make them for you - custom orthotics are much better than using the kind you buy over-the-counter, because they are built specifically for your problems. My husband has significant damage to his subtalar joints and he says orthotics really help. Wearing supportive shoes (sneakers for example) also really helps. Using a cane can help if one side is worse than the other.

An ankle brace also might help. You can get them online or OTC at a pharmacy.   

Steroid injections can be done, but are only a temporary solution. However, they can help a LOT with pain, and sometimes last a long time. My older daughter has had them done in her subtalar joints and they helped her a lot. Both my daughters have had many steroid injections directly into joints (hip, knee, ankle, jaw, SI joints) and they have almost always been very successful.


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## jonique

Whit said:


> Hello all and I am very grateful for this support group. I have been dealing with Crohns all my life and in the past few years my ankle subtalar joints have lost most of their cartilage making it very difficult to walk.
> My digestive health doc says I can take celebrex along with the MTX I am presently taking. Before I fill the perscription I thought I'd check with the forum and find out about other's experiences with celebrex.
> Thanks in advance.
> Whit


Hi Whit,
i have Crohn's and inflammatory arthritis and have been taking Celebrex consistently for about 3 years without any problems.  I've tried other NSAIDS but they upset my stomach.  i have no side-effects with Celebrex.

Over the years, i have taken it with MTX as well as various biologics, without problem.

Good luck!


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## CodeBrown

Hello All!  I was dx with CD in 2009 and shortly after started having problems with my left CMP joint (thumb).  I didn't really do anything about it and just figured I had injured it somehow doing some home renovations.  My regular doctor would always tell me it was just arthritis and that a lot of patients with CD get arthritis.  In Nov of last year, I could not longer handle the pain and asked to see an ortho.  I was diagnosed with mod-sev arthritis with bone subluxation (coming out of joint).  The only option at this point was surgery (steroid injections would only help with the inflammation), as there was bone on bone contact and it would only get worse with time.  At the same time I was having really bad shoulder pain on the left side and after MRI was diagnosed with a rotator cuff tear.  I was also having problems with my elbow and was told I had carpal decubitis syndrome.  It seems that in the past six months to a year, my body is deteriorating quickly as far as joints/tendons go.  I am just wondering how to cope with all of this?  I'm only 47 years old and I feel really old!  I hurt all the time.  I went to see a Rheumatologist, but she said my CD was out of control and I had to get that under control before she could treat me.  I am not currently taking anything for CD.  I tried Cimzia, Humira, and Entocort (as well as Prednisone) in the past, but did not achieve relief and wound up having a bowel resection.  Prometheus test indicates I have a very aggressive form of CD, but I am not sure how to get it under control.  I'm scared of taking a lot of the medications because of a family hx of lymphoma and I am afraid that the Humira has somehow messed with my heart (I am now having a lot of CHF symptoms - no family hx of HD - seeing a cardiologist).  My brother also took Humira (for psoriasis) and is having the same problems.   

Does anyone know of any therapies that I could try that do not involve medications that can potentially cause lymphoma?  Has anyone tried any natural therapies that work?  I am also wondering how those of you with CD related arthritis manage with the arthritis?  Do you have just arthritis symptoms or are you having other problems (with tendons, bursitis, etc.)?  Will this ever get better? 

Sorry for the long post and thank you in advance for taking the time to help a fellow Crohnie!


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## cmack

I hope you get answers soon. I'm sorry to hear of all the troubles you are having, you have my support.


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## MizzSarah

Joint issues started long before the tell tale Crohn’s signs. My GI was convinced genetic history and joint issues should have at least been enough to get me tested way back then but they focused on the arthritis for me for 10 plus years. Then they looked into Crohn’s and voila, of course. My dad had the joint issues too long before his Crohn’s issues surfaced. I believe there’s a connection but most people I’ve talked to with Crohn’s had the Crohn’s and then developed arthritis. 

Since the diagnosis though my arthritis was become way worse then before. I literally thought as a child the arthritis was at its worse but now I look back and think how much a whimp I was. I have a herniation in my spine and my spine in narrowing at an alarming rate. Lack of wrist strength. The list continues.  I have already been told by my team—-at 24 years old—- start thinking about what you’ll do when you can’t work at your job anymore.


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## ronroush7

I have arthritis in my lower back and am wondering if I have it in my right wrist also.


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## rrhood1

I have had enteropathic arthritis (yes, there’s a name for Crohns arthritis) 3 years before I was diagnosed with Crohns and it’s got progressively worse over the years. Remicade has now got me into remission in my gut but the joint pain is still very bad. I’m on opioids through a patch for the un-relenting pain. Some of the large joint pain has decreased with the Remicade so my GP thinks there’s another cause for the arthritis. Possibly psoriatic arthritis, maybe rheumatoid arthritis. My rheumatologist and I are going to have a long discussion about this. I may try marijuana once it becomes legal in Canada. My GP is in full support of that.


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## Maya142

I'm guessing you're still on MTX, right rrhood1? Have you tried an NSAID? They will sometimes let you try Celebrex if your IBD is under control and your joints are the bigger problem. My daughter has severe arthritis but relatively mild IBD and she needs an NSAID + immunomodulator+ biologic. 

We also use a LOT of ice. Voltaren gel might be an option if Celebrex isn't - it's topical so it won't hurt your gut (and it's OTC in Canada I believe).


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## rrhood1

Thanks Maya142 - I am still on Methotrexate. My GI is adamant that I not take NSAID of any kind. However, my rheumatologist may have other ideas.  We will see in about a month. Ice doesn’t help nor does Voltaren. So far the only thing to bring it under some control is the butrans patches. We also may try CBD oil.


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## Maya142

My kiddo is on pain meds and trying CBD. Unfortunately, we haven't seen any improvement with the CBD but we are still working on finding the right dose for her.

Enteropathic arthritis is a type of spondyloarthritis (SpA). It can affect any joint. Psoriatic arthritis is also a type of spondyloarthritis. They're both associated with the HLA-B27 gene, as is Ankylosing Spondylitis (which is what my daughter has and is also a type of SpA).

You sound very similar to my daughter - anti-TNFs worked wonders for her Crohn's but only helped her arthritis a little. 

Large joint arthritis generally runs parallel to IBD - they flare when the IBD flares, and get better when the IBD gets better. But the small joints (fingers, wrists for example) tend to be independent of the IBD. So do axial joints - the sacroiliac joints and the spine. They tend to flare completely independently of the IBD.

There are a few things you might ask your rheumatologist about - increasing your dose of Remicade, increasing MTX, adding something like Leflunomide or Sulfasalazine, convincing your GI to let you try an NSAID (there is a new study showing that NSAIDs don't make IBD flare).

Alternatively, you could switch biologics and see if your joints respond better to Humira or something else.

Remember that having uncontrolled arthritis can cause significant damage to the joints. My 21 year old is having major surgery on her jaw this summer because of joint damage. This is her third surgery in a year on her joints. 

My husband (who also has AS) has had multiple hip replacements and has significant damage in his ankles, and SI joint and spinal fusion. 

Enteropathic arthritis, if it affects just the large joints, probably wouldn't cause a lot of damage. But it sounds like you have more than just that. If your lower back is involved, you likely have axial spondyloarthritis.

I would check out Spondylitis.org for more info.


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## ronroush7

When I was about thitteen, I broke my right arm.  Lately, I have been experiencing pain in the right wrist close to that same area   Could I be experiencing arthritis in the area where I broke my arm or wrist?


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## rrhood1

Ron - it’s very possible.  I broke both my knee caps - I have arthritis in both of them. Wear and tear my rheumatologist calls it.


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## ronroush7

Thanks


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## Maya142

It could be due to the broken arm or just could be just regular osteoarthritis. It is common as we get older unfortunately. The cartilage gets worn down, which causes pain. Once you are bone on bone, a replacement may be considered. Obviously hip and knee replacements are most common but other joints can be replaced too.

If it's really bothering you, then seeing a rheumatologist would be a good idea. If it's just occasional pain, I'd try ice and heat and maybe a supportive brace while writing/typing.


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## ronroush7

Thanks


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