A Little Frustrated / Helpless Feeling

Most of the changes you are describing sound like pouchitis. When was your last scope? Need to talk about that when your GI returns.

Short term you probably need cipro and flagyl, long term a change to a different biologic. And a scope with your new GI. Remicade, Entyvio, Stelara and Skyrizi might all be on the table for discussion.

Thanks CT.  I have tried Flagyl and Cipro in the past with no success.  I have been on Remicade, Entyvio, snd one more biologic I can't remember the name at the moment, before Simponi.  Nothing ever seemed to do anything for me quite honestly...

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?

Scott, when I was at 4-6 or 7 BMs in 24-hr spans, I was in the hest possible situation I believe.   But it was still far from a ideal way of living. 

I woke up once last night with 'burning diarrhea'.  Then more this am.  So I think it was only 2 wakeups last night, might have been 3.  But the 🔥 burning, having to really really push is normal ti ofthe clean out the pouch.  But the burning is unusual as is the frequency (a lot more than normal).  I will monitor it closely.

I will also look into Budenoside, thanks YTCrickpot for that info., never heard of it.  I'll see what the doctor's assistant says about it.  Just can't seem to get back to the normal grind as it is intefering way more with my life than it does in 'normal' times.

Also, intense exercise is a huge help.  I need for force myself to do it even when I am so week and tired.  I officiate hockey, so hopefully it will allow me to continue that without too much trouble.  Once I get into games and start working hard and sweating, it makes me feel a lot better overall.

Budesonide might be a good idea. It is a cortisone that has mainly local effect in the bowel. You can take it long term if it helps. I do for more than 10 years now, at reduced dosage after initial therapy.

Have you tried Cipro and Flagyl in combination (not only one at a time)? Seems to have the best effect.

Get your blood levels checked at the doctor's, inflammation (CRP), liver, kidney labs, electrolytes like sodium and potassium if you had severe diarrhea. Perhaps also a stool test for infections as Scott mentioned.

I would also recommend changing to a new biologic. I had to try many before I had luck with Skyrizi now. If your doctor attests 'indeterminate colitis' you should have no problems to get either medicine for UC or Crohn's. A therapy with budesonide or even prednisone can help to alleviate inflammation till the new med takes effect.

Further to my current condition...  This is one of the main issues I am dealing with these days.  I just ate a big lunch.  About 90 minutes later I started feeling a desperate need to have a bowel movement.  I went to the restroom and instead of having a large pastey bowel movement, it was extremely loud and gassy, messy but a limited amount of output.  In better days, it would be a larger BM and nowhere near the amount of gas and noise to go with it. 

I assume this is the result of inflammation in my pouch or rectal cuff etc...  I suppose my small bowel could also be inflamed, but apparently my last scope didn't show that. 

Anyway, bottom line is that instead of being able to "empty" my pouch and feel better, I have been suffering from excessive amounts of really loud gassy bowel movements.  This seems to be a continuous thing tnhat hasn't subsided in a few weeks now.  It's not an enjoyable thing to deal with day after day...

Can anyone relate?  Can anyone suggest (a) what's wrong with me and (b) any options that haven't been discussed yet?

When my life started to be dominated by gas (that of course I had to get out of my pouch frequently) my doc diagnosed SIBO. A couple of months of doxycycline took care of it. These days a shorter course of rifaximin seems to be more common, and has fewer side effects.

For the burning - there is an oral medicine that absorbs the acids in your stool to stop the burning. It is called cholestyramine powder. When I first had my pouch, things just would not heal because I had such acid stools.  My doc prescribed it and it worked wonders. I was able to heal and get off the med.