Gee. Your story sounds like me. Ups and downs with my pouch for a decade or so, then this insidious low back/upper buttock pain started. In addition, I had sporadic knee pain, plantar fasciitis, Achilles tendinitis, tennis elbow, yada, yada, yada. But this back thing was a real bugger. First hour in the morning, after sitting an hour or so, in the middle of the night, there was this restricting low back pain. 

After 6 months of trying to wish it away (I couldn't take NSAIDs anymore due to pouchitis and liver inflammation- and that was when it got very bad).

My primary MD sent me to a rheumatologist after x-rays showed nothing. She ran a battery of labs and after an exam and MRI I was diagnosed with enteropathic arthritis. I was started on biologics and it changed my life. Not perfect, but much better. That was 10 years ago for me, but I probably had symptoms for a couple of decades before that. This is an inflammatory arthritis that fist attacks the sacroiliac joints. It often takes many years before a proper diagnosis is made. It is related to ankylosing spondylitis.

Read more here to see if you fit the profile:

http://www.spondylitis.org/Lea...pondylitis/Diagnosis

Jan

Wow, sorry to hear your story Jan.  thank you very much for the attached info.  It pretty much fits me to a T.  This pain has be sporadic for me for about a year, but now has been steady since last May. Some days are just so tough..I need to watch  the NSAIDs as well

( had a viral hepatitis which lasted from last November to March )  .  They never could  diagnose what kind , but it kept me quite ill for those four months like some incredibly bad flu.  Lucky for me, my liver enzymes completely normalized .

The crohns and colitis foundation of Canada here in Victoria has been having a lot of success with a food supplement called Moringa.  Have you heard of it? They claim it helps considerably in reducing inflammation and helps in digestion.  A deep sleep is also noted. Something I sure don't get much of.....Im thinking of giving it a try but will run the info past my gastro first.

many thanks for your help

No, I haven't heard of moringa. I looked it up and it appears to be another one of those supplements used to treat a wide variety of maladies, but with insufficient evidence that it is effective. It is nutritious as a food though. My main concern is that in the amounts to be pharmacologically effective it may not be safe. That is something that is unknown. 

That said, there is no real harm in trying it to see if you get any benefit from it. My experience with supplements has been disappointing in regard to my inflammatory arthritis. Since I have to pay out of pocket for it, there is a limit to how much I am willing to spend on them. Glucosamine/chondroitin was a complete bust and I tried it for a year! I really wanted it to work. Apparently, it is mostly for osteoarthritis, not inflammatory.

Let us know if moringa does anything for you if you try it.

Jan

Hi Elly,

I am a k poucher (since 1979) who was doing pretty well for a long time... back/hip pain from scoliosis but it was always manageable with Ibprophen or some other OTC med plus chiropractic and exercise (exercise is what helps the most).

3yrs ago I went back to work full time (I have to climb 1 mile up a steep hill with a heavy backpack to get to the subway or walk a bit further up a mild hill to get to the tramway) and killed my back the first day out.

That's when the pain became 'screaming bad'...and it did not get better...since then I have debilitating, chronic hip/sacroilitis pain on the right side, down the butt, the back of the leg, knee and ending in chronic achiles tendon tendonitis. My right side is in a permanent flare. My GP gives me muscle relaxants and NSAIDs, my rhumy gives me higher and higher doses of Naprosine (up to 1200mg/day) and narcotic and non-narcotic pain meds (narcotic slow my gut too much)...no relief other than the week post-op on i.v. drip morphine. Can't live on that stuff.

The pain is worse in the morning when I try to get up, any time that I sit for more than a couple of minutes or stay immobile. Once I start moving (and pop 500mg of naprosine) things get a bit better and if I go for a nice long walk I almost feel good...keeping active is the key. Yoga and pilates help too (you have to keep those core muscles strong to support your back)

This sping, I tried to get ahead of the pain I went on a 10 day vacation to a spa w/hubby.  Deep tissue massages, swimming 1-2hrs every day +1hr walks on the beach. Nothing...just got worse and worse to the point of desperation and tears...

Then I met an ethiopath (on vacation too) who is sort of like a chiro with slightly different techniques of manipulation and massage.

He put my sacroiliac joint back in...and I got immediate relief...but not permanent...sometimes it works and sometimes it does not but it is still better than nothing...

I just got back from having my whole body cracked and put back together including deep tissue and gut massage.

I feel almost normal (for how long I do not know)...tonight I will sleep.

You may need a good chiro to help you to get things lined up (you have to believe in this stuff) and unblocked. At least for me, it is the only thing that helps at this point.

I refuse all cortisone based products and won't touch narcotics unless in tears.

I am awaiting to see if I can get into a human research study for a new injectable product into the spinal discs to plump them up again but with my medical history I may not their favorite type of candidate.

Supplements can only go so far. Vit D helps a lot, so does good nutrition. I take a collagene suppliment + tons of oligoelements, minerals and silicium...I am not sure if it helps but it doesn't hurt for now!

The sooner you act on it the better the chance to get it under control...you may need to try different techniques or meds. Heat helps, so does hot water.

Good luck and take care

Sharon

Thank you Jan, if I decide  to try the Moringa I will definitely let you know how or if it helps in any way.

Hello Sharon, thanks so much for your reply. Sorry to hear you live with so much chronic pain as well. I agree with you about the massage, chiro, heat and keeping moving. Actually I agree with all that you say. I too take a vitamin D supplement, B12, VSL3,

i try to stay away from narcotics as well. My dr. Suggested amytryptiline but I have been hesitant after reading more about the drug. I started seeing a P.T. who specializes in chronic pain, but then I was hit with such severe vertigo that I needed to settle things there before I could continue with any more therapy. I now have the vertigo under control and I'm back to walking daily for 30 minutes.  Any more than that seems to cause my belly to ache.

  My husband rented a hot tub for me for seven days recently and I thought it was the best thing ever.  I spent  an hour at a time several times a day on low heat.  Wonderful!   I'm not a fan of using the public hot tubs because I seem to pick up viruses and infections quite easily.  My dr doesn't recommend me using them and  to buy a hot tub of my own is just so much money, but I'm really thinking about the great job it does for me which really holds a lot of value.

i sure do appreciate all your ideas and support Sharon . You  have definetly encouraged me to "keep on trucking" as the saying goes.  Many thanks, take care