Finally! Someone who is looking at the big picture! I was lucky also, that my rheumy was a thorough history taker and gave a thorough exam before looking at labs and x-rays, which did not indicate other causes of my pain. 

While it does not feel great to hear you have another chronic, incurable illness, it is far better than thinking you are nuts.

Good luck with your future treatment!

Jan

sharon

arghhh, more problems for you.  simply exhausting running this way and that to the docs.  yes, good to know what it is and be on a treatment plan.  what is AS?

i too have lumbar pain, both scoliosis and stenosis.  in may of 14 a spine surgeon wanted to fuse seven vertebra and snip out six discs.  ouch, i asked for a PT script and have religiously been doing my exercises.  anyway, point is that i always contended that the lumbar pain influenced my j pouch functioning and EVERY doctor blew that idea off as crazy.  maybe, maybe not.

i hope you find some pain relief and can continue to swim and stay active.  do you meditate?  many find it helpful.  i certainly do.

two weeks and i'll be on the eve of surgery.  am very anxious that there will be some problem and i'll end up with the bag, after all of this extra effort.  gives me something to worry about!!  

be well, sending you white light.  janet

AS= ankylosing spondylitis

There is a related disease, enteropathic arthritis, that is associated with IBD.

Jan

Hi Janet,

I’m sorry to hear about the back problems you have and can personally relate to the pain and disabling issues it presents.  My back condition appears to be somewhat similar to yours and did not cause me any problems until I was hit by a car in a crosswalk.  Although I experienced severe pain, I do not feel that it caused any adverse effects with my j pouch over 12 years.  I had a comprehensive examination by a back specialist at the Medical College of Wisconsin who gave me a complete explanation of her findings and explained the major surgery that could be done.  She stated that the chance it would result in improvement was under 50% and there was a possibility it could make things worse.  The recovery time would be about 1 year.  Her advice was to not have surgery, to keep physically active and do back exercises.  Although I still have pain, which is severe at times, I have been able to live with it and continue doing many of the activities I enjoy.

It seems unlikely that back surgery would have any negative effects on your pouch unless the surgeon accidentally severed nerves that control the sphincter muscles.  Also, you might experience some problems in sitting on the toilet and emptying your pouch while you are recovering from surgery.  These are appropriate questions to ask your surgeon along with his/her expectations on a successful outcome.  I would also consider getting a second opinion.

I hope things work out well for you.

Bill

thanks for input.  the only surgery I would consider for my back is a shaving of the facets at L4L5.  At that joint the pressure on the nerves cause me to drag a foot, often trip and occasionally fall.   I do over an hour of pt exercise every day plus walk or bike several miles and then there is the four flights of stairs in my house.  Yes, I agree stay active and avoid surgery. 

Ill be getting the K pouch in two weeks so no more concerns w the J!  Janet

I find that the more active I am the better I feel.

I told the rhumy that I wake up feeling 90, by noon (when I am running around like a nutcase, walking, climbing and teaching)  I feel about 25 and by eveing I am 70...

If I sit on the sofa, lay down for a while or sleep I fell 90 again.

He laughed

The problem with inflamation is that it likes activity and hates sedenatrism...the more you move, the better you feel.

I live in a valley (funny enough no matter where I walk, it is uphill....I have never found the downhill entrance!) and as I climb up and out I hurt (back, knees, lungs...those last 60 steps are real killers) but by the time I reach the top I fell great. Everything is nice and warm and squishy (I hold my abs in tightly during the whole climb and do deep breathing exercises too)...at night, coming home if hubby doesn't pick me up I have to walk downhill (yes, I found the entrance) and that is worse on the hips and knees than the uphill.

The good news is that holding my abs in helps my pouch and pelvic floor. 

I just found out that you cannot mix ibprophene and naproxin...he freaked when he found out that I was taking the naproxin 500gm in the morning and the robaxin which is ibprophen at night...he said either one or the other but the mix is toxic (for what?)...so I have stopped the robaxin and am sticking to the naproxin twice a day.

I am not giving up yet.

By the way, happy holloween...

Sharon

Sharon, I don't think the Robaxin (not an NSAID) directly conflicts with the naproxen. OTOH the Robaxin is bad for folks with seizure disorders.

I think one way that activity helps get us past pain may be similar to a "runner's high." The body produces natural pain relievers, and when we push through the pain we get some help naturally. I don't think the activity reduces the inflammation itself, unfortunately.

Scott, I think the robaxin she takes. Is a combination drug, not pure robaxin. I take robaxin myself at bedtime, but mine does not contain ibuprofen.

I agree with her rheumy- don't combine NSAIDs! Bad for the gut, the liver, and kidneys.

Jan  

Yes, you are right Jan, mine is a combo thing with robaxin and Ibprophene...so I have stopped it...on strait napoxin 2xs/day...don't know if it is helping but it sure isn't hurting (for now).

Sharon

ps. Rhumy gave me a script for the ethiopath, not sure if my insurance will take it or not but I will try...it gets very expensive very quickly (65€/treatment)...

Being sick is so darned expensive...please stay healthy!