Ulcerative Colitis and SAPHO Syndrome

Written by Kayleigh from Ireland:

I have Ulcerative Colitis, but it is part of a larger condition called SAPHO Syndrome, a rare autoimmune disease that means I also have severe arthritis with my UC.
Imagine trying to run to the bathroom during a UC flare 20 times a day but not being able to move because of your arthritis!

Kayleigh’s Story:

I was diagnosed with arthritis when I was 13 – it affects every joint in my body – and with UC when I was 19 (I’m now 24) – it was very sudden! I woke up one night with severe diarrhea and vomiting which lasted a week before I finally went to the hospital. I was kept in isolation in case I had some contagious illness, but after a few days of tests and observation, and a scope, I was diagnosed with colitis.

Just last year all my symptoms were put together by my 2 consultants and I was given the diagnosis of SAPHO.

The past few years have been a real struggle. My weight has fluctuated, I lost my job, I lost friends, relationships broke down, I have felt isolated, embarrassed, exhausted, depressed, defiant, I have had countless flares. Then my younger brother got diagnosed with the same thing a year and a half ago and they are already talking about removing part of his colon.

It’s so scary having this.

But we’re fighters both of us. I’m pretty stubborn and when I decided that this wasn’t going to rule my whole life, I MEANT IT! I have traveled the world (and gained a new appreciation for Irish toilets!), got married, and become an active member of colitis and crohn’s, and arthritis charities in Ireland.

Medication information:

I am currently on mesalazine tablets and steroidal enemas.

I was tried on HUMIRA as it would treat bothmy UC and arthritis but had an allergic reaction to it.

4 thoughts on “Ulcerative Colitis and SAPHO Syndrome”

  1. Good on you Kayliegh!
    Have you tried removing gluten (wheat etc) from your diet? Worked for me and I really recommend giving it a shot for a couple of months.

  2. Your story sounds just like mine. I know exactly what you are describing. You can’t even bend your knees or stand up when you have to use the toliet! Impossible when you have a UC flare :( luckily my severe arthritis comes and goes and it hasn’t been unbearable in about a year, thank God! I’m on remicade infusions along with sulfasalizine, and mesalamine suppositories and/or enemas, as needed. Doctors also think I’m on methotrexate still but I stopped those injections about 5 weeks ago now and I’m ok. I’m scared to death to get bad again…I have 3 young children to take care of and it’s impossible when I’m that bad. You feel so helpless. I still get arthritis here and there, pretty much always is at least one or two joints, but it’s not as severe as it once was. And nothing really helps the pain…I did find that a strong dose of norco takes the edge off but I don’t like taking such narcotics. Have you considered remicade? Do they have it where you are? I’m in the U.S. And it’s becoming a pretty well known treatment for both UC and severe arthritis. Best wishes.

  3. I too was dx with colitis and crohns. Was told I would loss part of my colon. I opted NOT to take any meds and instead, completely eliminated all gluten from my diet. After 3 months of gluten free living, I re-did my colonoscopy and all the damage was GONE. When I have gluten, it’s back to how I used to be all the time. It take about 3 days to get rid of it all.

    Once I went gluten free, my joint paints I had for years had disappeared as well. When I eat gluten, the joint pains come back.

    During the time of going gluten free, I developed PPP (palmoplantar psoriasis) and clavicle pain and inflammation that my ortho can’t figure out what it is. I will be starting the process of getting an offical dx of SAPHO.

  4. Dear Kayliegh,

    I first heard about SAPHO syndrome today. A client in a veterinary clinic had a remarkable result with her dog using EFAC for arthritis. The story is simply amazing. The client had a friend with 2 sons that both had SAPHO syndrome. One of the sons has gained tremendous mobility. Previously he extreme difficulty just putting a shirt on if it required pulling it over his head…in just one week he can now do this. The young mans story was very touching. I would be happy to send you a free bottle if you live in the US…if you live outside the US I would ask you to pay the shipping. As I said I just heard of this condition today and if EFAC can help those suffering i will do my best to help out.

    Kind regards,
    Dr. Kim Vanderlinden

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