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I relocated this summer from west to east.  A new job and a new opportunity.  Separated for over three years, it's been official for just over one.  My 15 yo daughter has been living with me for over 3 years and my son is away at university.  My spouse has been abroad in her home country for over a year.

I have been taking Simponi injections for about 3 years, and I don't think it's doing much.  I have been on 360mg of codeine daily since 2001.  Without that, I don't want to think where I'd be.

At the best of times, I have 4-6 bowel movements a day.  For the past few weeks, that number has probably doubled, and sometimes more.  It seems everything runs through me at a much quicker pace.  I often can't eat a good breakfast and have my next bowel movment in mid afternoon like I often used to be able to do.  Now I am often going to the toilet 3-5 times through the night.  At the best of times it was usually only once a night.  I am suffering from the really loud bowel movements if that sounds familiar.  Uncomfortable, like a motor accelerating.  Unless I am at home where i alwaya use my bidet toilet, (which is rare during the day), I only sometimes use a hand-held bidet at work.  My ass goes on fire regularly these days.  More liquidy diarrhea than what's usual.  I often feel like I have to go, but can only output a small amount and it's loud and uncomfortable. Then a short time later I have to repeat this...  This is obviously inflammation, pouchitis, ot whatever you want to call it.  I only moved here 6 or 7 weeks ago bit I managed to secure an appointment with a GI's assistant in the nation's capital early next week.  The doctor is away right now so the assistant will see me to start the process of helping. I am not sure what to do because nothing has ever worked from a medication standpoint.  It doesn't seem to matter what I eat or drink, I have the same issues. 

I'm not writing this post for pity...  Just trying to figure out what to do.  It is definitely making my life difficult. 

To complicate things, just a week or so after our move, I started suffering from horrible acute lower back pain.  I was in total agony and suffering terribly.  I went to the ER and got a Toradol shot.  It seemed to help and settled down back to my usual chronic lower back pain that I have had for many many years.  Not sure if I injured myself or what caused the agony.  I think it was my sacroiliac joint...

I just can't seem to shake this non-stop diarrhea and horrible state i've been in.   Usually when things get worse it goes away on its own and goes back to the normal hell I deal with.  But for weeks it's been.way worse than that...

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And...  I had a scope last spring.  It showed some inflammation but nothing too bad.  Even if they find inflammation, then there doesn't seem to be a solution. It simply aggravates me badly for a week or so with the process of cleansing myself and going thru the procedure.  Then what?  Not sure what to eat because everything just seems to run through me at a fast pace.  These days, less digestion occurs than normal.   

Not seeking treatment because nothing has worked to date isn't the solution. There are other biologics I mentioned- have you discussed with your GI the mechanisms of action of the various biologics you have tried and which failed vs. the mechanisms of action of those you have not tried? Those are the conversations you and your doctors should be having. You need to keep trying and not accept the new baseline you have described.

I can't disagree.   That said, I have never seen proof of any medication actually working for me.  I believe that when I've gone through these bad times, I eventually just get through them.  Unfortunately, this time around, the tough times don't want to pass as they usually do at some point within a few days...

Hi,

have you ever tried budesonide? It’s a steroid for the gut. It’s been a miracle drug for me, I’m taking it until they can find the right biologic that works. You should ask about budesonide, When I’m not taking it I have liquid stool and go about 14 times a day, but when I’m on it my stool is almost formed, and I go 1-2x  a day.
good luck, I hope you find something that works for you

I’m sorry you’re going through this. The timeline is a bit confusing. Before this last-few-weeks worsening were things relatively okay (4-6 BMs/day), as you described, or were you in an intermediate kind of trouble? A sudden worsening makes me think of possible infectious causes (e.g. C. Diff or Giardia), which should at least be ruled out. Also, are you using any fiber supplement to try to get the stool consistency more tolerable?

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