c diff finally gone...now flaring!

This will be a venting session and an update, I hope that's okay.

I finished my long course of vancomycin for c diff on June 1st. Right around that time I started getting symptoms again, which got worse slowly but surely from that point on. Increased frequency, urgency, and blood and mucus for the first time in a long time, which really scared me. My doctor hadn't planned on testing me for c diff again so soon, but we had no other choice, so I gave a sample on Saturday. Over the last week I felt more and more certain that it was still c diff and that he would either recommend Dificid or I'd have to get the FMT.

To my utter surprise, the test came out negative. For the first time since, well, before I got it in December. You'd think I'd be happy about it. I'm not. Because this means I'm flaring. We've been planning on doing a colonoscopy soon, but something always happens that throws off our schedule.

Dr. is having me go back on Lialda for a week to see if I improve. I think that's weird since the doctor at the University of Chicago said it wasn't doing anything for me. As a reminder, I'm already on bi-weekly Humira and have been since August. But he wants to see if adding Lialda back will help. If not, he may prescribe Uceris. Since that's not a permanent solution, I'm not sure what's next. Maybe increasing the Humira. I don't know if my biologic is still not enough or if it stopped working or what. My doctor doesn't like 6mp, which is probably why he hasn't brought it up yet.

So now I'm struggling through every work day, skipping lunch and panicking when I suddenly have to find a private bathroom, over and over and over again. My bms are *extremely* loud right now. And they're always incomplete. As soon as I think I'm done and nothing else is coming out, I have to go again.

I know a lot of you are fans of rectal meds. I don't miss them and am not eager to go back on them. I don't miss that feeling of fullness in my rectum and not being "allowed" to go for the rest of the night. And this is gonna sound ridiculous, but I have a paralyzing fear of bugs and the only place I can really do those is on the downstairs bathroom floor. It's summer now and I'm terrified of laying there and all of a sudden seeing a bug, which is highly likely based on experience. *shudders* But yeah...I realize that if I need to do it, I need to do it.

I should ask, does anyone have tips on doing laundry after one has finally eradicated c diff? I have all these colored clothes and linens that I can't use bleach on. I need to do a big thorough cleaning of everything now...yay.

I know I'm not alone when I say that I'm a bit fed up. Yeah, I'm new to this disease, but in the last year and a half, I've had maybe two months of sort of being able to trust my body and live life. It took me forever to get rid of my infection and now I'm in a flare? Or maybe the test was wrong and I still have c diff? Ugh.

P.S. I've been getting really irritated with coworkers bugging me about skipping lunch. They do not understand what it's like living with this condition and trying to get through the day. Leave me alone, I'm not starving myself to lose weight. They know what I have, but they just don't get it.

Glad you got rid of the cdiff. Hopefully you will get the flare under control quickly.

Enemas do make a difference. I do mine laying in bed on a towel. That way I can just go to sleep and not move around after I do it. I get the enema to body temperature by slipping in in my bra for a while before bedtime. Then I make sure to gently squeeze the bottle to get rid of all the air (I hold a paper towel near the tip to prevent a mess). Until I learned those 2 tips I had an awful time holding them for very long. Now it's not uncomfortable at all. Give them another try!!

I agree with iPoop. You should get tested again, at least once, if not more> i've seen a lot of people have incorrect results. I am so sorry you're struggling with work. you sound exactly like I was. I never ate and people would always pressure me. it's just no way to live, but you have tons of options. when are you going to get scoped? I think I would push for 6mp. it's silly to give up that option because your GI doesn't "like it". I'd definitely try to figure out how to do the enemas standing, or use a suppository at least. Foam enemas are very easy to administer standing... I don't liek to lay on the floor of a bathroom either, even if it's my own. Feet/shoes gross me out and they are all over the bathroom floor.

iPoop said...
Sorry to hear that you're struggling. C diff tests do get false negatives, so you might want a second test.

Yeah normies are the worst when it comes to understanding uc. We're just struggling to do our job and not have an accident, and that's overwhelming enough to handle as it is. Either you try to educate them or ignore them.

You can get your humira levels and antibodies checked through Prometheus labs. I think weekly humira is a thing.

Yeah, I wonder if it's a false negative. Exactly, since I'm not going to broadcast that I have accidents, I guess I can't expect people to assume that's why I can't eat. Oh, I didn't know you could get those checked through Prometheus. I've done some of their tests before but I think that was before Humira.

juststud said...
ya, why are you slipping the juice in laying on the floor ? just like cc said - lying in bed, insert, squeeze, remove & lites out -

Slipping the juice in, bwahaha. The reason I don't do it in bed is because that's really far from the bathroom, and if I suddenly had to "let it all out," I would most likely have an accident.

iPoop said...
I'd administer enemas over the toilet. First sit on toilet, lift your butt up enough above the seat to reach your hand underneath and administer the enema. As a bonus, any dripping/spilling of enema fluid just falls within the toilet water. No mess to cleanup with spills which is good as Mesalamine stains horribly. No laying on a gross floor. No worry about bugs on the floors.

Interesting. Would I have to keep sitting on the toilet for a half hour or move somewhere else after that? I would think that sitting on the toilet would send a very strong signal to my system to "poop now!"

GloGirl504 said...

juststud said...
ya, why are you slipping the juice in laying on the floor ? just like cc said - lying in bed, insert, squeeze, remove & lites out -

Slipping the juice in, bwahaha. The reason I don't do it in bed is because that's really far from the bathroom, and if I suddenly had to "let it all out," I would most likely have an accident.

well then, pretty much sounds like you need to move - a house or apt with a master bath is the ticket - that way you're just a few steps away from the perfect letting go place !

or there's the ever popular porta-potty - always there when you need it most

Glogirl504 said...
Interesting. Would I have to keep sitting on the toilet for a half hour or move somewhere else after that? I would think that sitting on the toilet would send a very strong signal to my system to "poop now!"

I'd sit there only briefly until the initial urge to evacuate passes (a minute or so), and then go lay on my left side in bed.