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WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 4/7/2010 3:41 PM (GMT -7)   
Wondering how many of you have issues with sacroileitis?  What are your symptoms? Are you in pain all the time or just certain times of day, such as laying in bed at night or upon waking?

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/7/2010 4:35 PM (GMT -7)   
I suffer from flares of inflammation in my SI joints. I awaken very stiff in the lower back. During an acute flare, the pain radiates into my buttocks and down the back of the thighs. It takes me 45 minutes of so in the AM to gain mobility in my back. I cannot tolerate sitting due to the pain in the SI joints. It I remain still for any length of time, my back stiffens up again. During acute flares I cannot even stand because of the pain. I have to use a cane or walker during acute flares to help alleviate the pain when I walk.

I normally can tolerate laying down flat and it usually is one of the few ways I can get comfortable. However, during acute flares, every movement in bed is painful. I get my most relief from having steroid injections in the SI joints. Mine are done at an outpatient fluoroscopy suite attached to outpatient surgery at the hospital. I take Simponi which has really helped reduce the number of flares I have.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/7/2010 5:40 PM (GMT -7)   
My husband suffered from a flare up of sacroilitis, knee and neck inflammation last year - it started out as sacroilitis and progressed from there. It was just like Ides described as far as the sacroilitis goes - it came on suddenly, got worse daily, then included other joints (and his knee was filling up with fluid daily!). He had to take prednisone 40 mgs (because he had so many affected joints), and bring his remicade up to every 6 weeks to control it. Rheumatologist thinks it's crohn's related arthritis or reactive arthritis from either the flu shot or c-diff. Hope it never happens again though. It was not good at all. My hubby was basically immobilized because of it, and moving was very painful - he needed pain meds, and just like ides said, every movement, even just shifting in bed, was very very painful.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 4/7/2010 6:35 PM (GMT -7)   
The GI seems to think this is what I am experiencing. I wake up at night and can barely move from pain in my lower back, the pain radiates around the right side of my abdomen and down low on the right side of my pelvis.  I feel like I'm 90 when I get out of bed in the morning, it takes me about an hour before I can stand up straight and walk with some normalcy.  After I'm up and moving though, the pain is pretty much gone until I lay back down for the night. Does this sound like SI to you all?

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 4/7/2010 10:16 PM (GMT -7)   
I suffer from sacroilitis of the lower back and nearly every morning it takes me a good half an hour to get out of bed, on really bad days it's more.I don't generally get dressed for atleast an hour after getting up because I couldn't physically get dressed!Sometimes during the day when I've been sitting for a while, I have to stand up and move around as my back starts aching and I start stiffening up.It does seem to be worse when I'm flaring and the best it has been is when I am on the higher doses of pred, obviously because it helps with the inflammation.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 4/8/2010 5:17 AM (GMT -7)   
What do you do to relieve the pain?
33 year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Unable/Unwilling to use immunosuppressents due to Melanoma history in 2000.
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin as needed, Entocort 6mg for maintanence.
November'09 colonoscopy shows reoccurance at anastamosis and active disease in sigmoid and rectum


crohns@45
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/8/2010 12:50 PM (GMT -7)   
  I had pain in hip & buttock for 2.5 years-- thought it was a groin pull- finally after seeing a neurologist for the chronic pain we discovered it is a flair in Sacroiliac joint .  Worked w/ a chiropracter-- no relief-- finally after going on celebrex-- pain has decreased. 
Couldn't put full weight on right side-- sharp intense pain in morning and all day- limping-
pain shooting to hip and made knees buckle.  Right now on steriods for a flare and it is working w/ the pain also
 
 
 I am 45 and just diagnosed w/ CD last June-- so these issues I think are all related

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 4/8/2010 12:54 PM (GMT -7)   
I did go to physiotherapy for a while, and also used heat pads, I still use the heat pads now and again but depending on the degree of pain doesn't always work. I take cocodomols (codeine and paracetomol) 4 times a day anyway, and sometimes my partner will give me back massage to try and ease it and as my crohns is flaring atm I'm on prednisolone as well which does help a little too.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 4/8/2010 1:23 PM (GMT -7)   
yes, i suffer from sacroilitis and it is just constant pain. Once it was so painful and lasted about 14 weeks. In the end after trying different meds i just took some prednisolone i had in the cupboard and eventually it resolved. I do however still have constant sore back which worsens if i have a flare.

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/20/2010 5:09 PM (GMT -7)   
One of the best treatments I've found for sacroiliitis is Turmeric, a powerful anti-inflammatory spice (not actually "hot" spicy) used in middle eastern and far eastern cooking. It is easy on the stomach, actually can relieve symptoms of GI diseases (it's been used as a treatment for them for thousands of years, and is surprisingly effective), is good for your heart/organs unlike pharmaceutical NSAIDs, and actually seems to work better than they do in my experience.

Other supplements that can help include ginger, bromelain, cayenne, and a few others (look at the ingredients of New Chapter brand's "Zyflamend" for a few....it's a great supplement that combines turmeric with a bunch of others).

Turmeric alone makes a fairly dramatic difference for me. It's nowhere near total relief, but the difference is noticeable within a few days at most, sometimes the same day. It helps with all my inflammatory symptoms, but since my SI pain is one of my worst, it's one of the things that turmeric makes the most dramatic difference in for me.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/21/2010 10:45 AM (GMT -7)   
I was told I had this after my barium swallow. Apparently it is quite common in chronies? Mine only flares every now and again. I had flares of this before I was even diagnosed with crohns and thought I had just injured myself at the gym. My pain was not constant when it flared. Certain ways I moved would just send a tearing pain thru my back. For example I could not lift my leg at all to do a kick because of the pain. But yet if I sat in a comfy position it did not hurt. Just when I moved. Tylenol seems to help a little with the pain for me.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

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