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Since 2016 I have been on Humira, Remicade, Entyvio, and now Simponi.  None of them have done much to help.  I still have a lot of rough days and issues.  I am not sure I have ever expected a lot better.  The 360mg of codeine I have been taking daily for the past 21 years have definitely helped.  Without it, I am not sure where I'd be.  I have been on Simponi for about 3 months and I have not seen any improvement.  I had been told to discontinue the other meds as none of them seemed to help after significant periods of time.

I took a new job in another province in September.  I recently made the approximate 16-hour drive to return home for about a week for winter break.  I had a horrible aching splitting pain in my lower back for the entire trip.  I am now in the middle of my return trip and the back agony is back again!  I drove about 11 hours today and the longer I drove the worse it got.  I tried changing my position several times with no relief.  On my way home last week, I tried putting a pillow behind my lower back but that didn't help either.

Today, not only was my back in absolute agony, but after having a late lunch of turkey sandwiches and fruit, I struggled with all my might to hold out for a restroom while on the highway.  Not once but twice I was in a panic to find a washroom.  The back pain and digestive issues made for a rough day.

There just seems no end to my discomfort.  I have another MRI scheduled for my back in March.  To say that I have had a lot of stress in my life over the past 3-4 months would be an understatement.  I am not sure if there is a simple solution to that.

I am back to square one.  The splitting pain in my back seems impossible to figure out.  I suppose I could always go harder on the codeine and / or other pain killers when needed.  Although I have always been pretty religious about my dosage and have stuck to it without fail 98% of the time.  My rate of diarrhea and the urgency that sometimes goes with it seems overwhelming some days.

Not a clue where to go from here.  I started seeing a new GI about 3 years ago after re-locating.  Although she is very good and very thorough and has tried a lot, I reluctantly admit that I am no better off than I was before I first saw her.

I have never had much confidence in any of the treatments I have tried over the years.  I don't have very high expectations that things will get much better with my digestive tract or with my back.

Suggestions are welcome...  THANKS.

Last edited by capper
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I also tried Remicade, Humira and Entyvio for chronic pouchitis. And Aza, Stelara, Xeljanz. None of them helped me. Now I'm on chronic antibiotics, after two years of trying to take them only for short periods. My pouchitis symptoms are gone and I have a normal digestion for someone with a pouch.

Have you tried antibiotics? You never mentioned them in your recent posts.

I had tried Cipro and one other (forget at the moment) through the years.  Neither ever helped.  And yes, Pouchitis, thank you SteveG for reminding me of the term and the issue that is most likely causing me grief.

As far as my back issues, I am 100% certain that they are systematic and connected to my IBD issues from way back since my 2000 surgery. 

I also neglected to mention that when I arrived home for the winter break on December 20, I stepped on the scale and was 146lbs.  My usual weight through the years has been 160-168.  I'm about 5'8.5" (barely 5'9").  I noticed I had dropped in the 150s during the pandemic.  This is post-surgery weight for me.  It is mainly muscle mass that has disappeared. 

I have to figure out how hard to push the weight nd other training when I feel run down, tired and empty (which is quite often).  Otherwise I see myself spiraling downwards that way.  Fitness is important but difficult when my back is a mess, I have trouble sleeping, and my job is busy all the time. 

Sometimes combination antibiotics work when one alone doesn’t. For me Cipro & Flagyl do the job nicely. Also, you don’t say if you’ve tried psyllium, but it makes a big difference for some of us.

Back pain is tricky - sometimes it’s GI-related, and sometimes it’s an additional, separate problem. When I had a ruptured disc compress my spinal cord the pain was remarkable, and thankfully the (urgent) surgery was quite successful. One of the things that hurt the most at the time was trying to poop.

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