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I was on a steroid taper all through January, and things were great.  No issue going to the bathroom, no seton in for my fistula and no pain with it.  Things were great.

 

Last steroid was 1/22.  Since about 1/27, the uptick of difficulty passing stools has increased.  The fistula drainage has decreased way down (indicative of when I'm "swollen" down there; less drainage when things are not open). 

 

Still, I can pass my dilator fine, and I had my husband glove up and check, and he was able to pass through past his first knuckle into the pouch, so it doesn't seem like a stricture at all... just what I think is inflammation that causes things to swell up down there, I suppose. 

 

I'm on Humira, but I'm losing any hope that it's going to be my savior at this time... but why do the steroids work, but not the biologic? 

 

Broke down and grabbed a Canasa today, and used it.  I do have messages in to my GI guy, hopefully tomorrow, I'll get a call/idea of what to do next.  I had used Canasa without issue while I had a seton for about a month... but then, I developed some irritation in the canal.  However, even after stopping it, the irritation continued.  Seems that when I had my one seton, I developed some irritation from it rubbing on the other side of the canal, and it probably wasn't the Canasas fault at all.  But we never went back to the suppository, because I started Humira. 

 

The stool isn't particularly overly thick, just can't get it out.  Have to strike poses, and doing a "squatty potty" pose worked best.  This happens to me from time to time, and I'm just getting sick of it.  When things are good, it's like I'm afraid to breathe, for fear of these times when things just aren't. 

 

Seriously, I think if I could Bewitch it, I'd just create an ileostomy and be done with this pendulum.  I mean, I have good function *most* of the time, and truthfully my pouch always looks good during scopes, but it's this cuff or canal or fistula that's my biggest issue.  Annoying that, what, all of very few inches of my GI tract are causing me all of these problems!!  Just tired of it.  Thanks for listening, and any support or ideas. 

 

And yes, to the guy who wants us to use things to drain our pouches, I end up using a Fleets bottle and "thinning things out" to get it out.  I'm really not interested in catheterizing my pouch all the time, when I DO have the ability to be passing things just fine when things aren't inflammed or whatever is happening. 

 

*sigh*

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Since you do so well with steroids, how about hydrocortisone suppositories when you are flaring? They also make budesonide enemas/foam (not sure if they make suppositories). You'd get even less systemic absorbtion with that.

 

The other thought is that Humira may just not be your best biologic option. When I was taking it, I had to do weekly injections. Every other week just did not do it for me. I had better luck with Simponi, but even that began to lose efficacy after 4-5 years. That's why I'm on Cimzia now. I just keep reminding myself that nothing lasts forever...

 

Jan

 

 

I was going to suggest hydrocortisone suppositories as well.  I've been using Anusol-HC - 2/week, and canasa 2/week, and things are running more smoothly while on them.  As a bonus, they're smaller than the canasa, easier to insert.

 

I don't recall if you have a bidet, but when used full force (or as full force as you can handle), they do act like an enema, but are more convenient.  Very helpful in clearing things out.

 

 

 

Yeah, that's why I went to the Canasa, to see if it would do something.  My message to them includes that question, as well, about something like a suppository or enema to get to the source, perhaps.

 

I was really, really easy on my gut yesterday, with foods I know break down completely.  Drank a lot, too, along with that small dose of Miralax.  Things moved pretty well. 

 

My appointment is 2/16, so I do see him soon...

 

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