Diarrhea: SIBO, C. diff or ?

[hilary1617]

Sorry you and Charles have been unwell. May there be many walks on the beach during your RV adventure!

 

[DianaCox]

Thanks - I'd also like to make this a bit of a cautionary tale for those of us who are older. I have now not exercised in a month. I have almost not left the house at all - hell, I haven't put on a real bra in a week. I'm quickly becoming physically deconditioned to an extent that is alarming. Bending and reaching to unload and load the dishwasher leaves me needing to rest. And Charles is equally in bad shape. I've got 3 weeks to get my ass in gear or I don't even know how we're going to be able to load the RV up and get the house ready to sit unattended for almost 3 months (we have a house-sitter coming, but there is a lot to do, including emptying the fridges of perishable things, battening down the outside for the monsoons, putting the car and golf cart we're leaving up on something in the garage to keep the tires off the concrete floor, etc.). I'm getting exhausted thinking about it. Once we're underway, it will be fine (especially since I'm not driving), but getting ready is going to be a challenge.

 

[Spiky Bugger]

Thanks - I'd also like to make this a bit of a cautionary tale for those of us who are older. I have now not exercised in a month. I have almost not left the house at all - hell, I haven't put on a real bra in a week. I'm quickly becoming physically deconditioned to an extent that is alarming. Bending and reaching to unload and load the dishwasher leaves me needing to rest. And Charles is equally in bad shape. I've got 3 weeks to get my ass in gear or I don't even know how we're going to be able to load the RV up and get the house ready to sit unattended for almost 3 months (we have a house-sitter coming, but there is a lot to do, including emptying the fridges of perishable things, battening down the outside for the monsoons, putting the car and golf cart we're leaving up on something in the garage to keep the tires off the concrete floor, etc.). I'm getting exhausted thinking about it. Once we're underway, it will be fine (especially since I'm not driving), but getting ready is going to be a challenge.

“Oh, dear,” she replies, feigning horror! “Three whole weeks!?!?”

Take your calcium, y’all, a watch your labs and MAYBE* Dexascans. I’m at the “essentially housebound and unable to bend over since last May” point.


*MAYBE, because my Dexascans say my spine is fine. X-rays and MRIs disagree.

 

[DianaCox]

I’m sorry - I was already being sarcastic about being able to recoup and regroup in 3 weeks, but at least so far I’m only dealing with muscle fitness. Knock wood, I’m only slightly osteopenic - and reasonably vigilant about supplements. DEXA every two years.

By the way people - I have been told at two different facilities that it is important to have your DEXA scans done on the same machine each time - they are not comparable to accurately measure the change between scans otherwise.

 

[Spiky Bugger]

I’m sorry - I was already being sarcastic about being able to recoup and regroup in 3 weeks, but at least so far I’m only dealing with muscle fitness. Knock wood, I’m only slightly osteopenic - and reasonably vigilant about supplements. DEXA every two years.

By the way people - I have been told at two different facilities that it is important to have your DEXA scans done on the same machine each time - they are not comparable to accurately measure the change between scans otherwise.

I was being sarcastic, too. No apology needed.

But this Dexascan shit. I have twice inquired as to why, when we know I have compression fractures in my spine, my Dexascan shows my spine as being just hunky-dory. And I have twice been told something along the lines of “osteoporosis can disguise Dexascan results.”

Well then...what TF good is a Dexascan?

Anyone out there have any input on this?

 

[DianaCox]

I’m guessing if your vertebrae collapse, it makes them look denser?

 

[Spiky Bugger]

I’m guessing if your vertebrae collapse, it makes them look denser?

Probably. You always figure this stuff out.

But still, the reports I got were VERY misleading. I think that the average bear (like me) would think “well, my spine is okay, so this back pain must be muscle pain...or maybe it’s just my SI joint irritated again and I need the steroid injection again...” and so on, ignoring the whole osteoporosis issue.

 

[DianaCox]

Saw the GI doc yesterday. Discussed remaining symptoms, which are slowly getting better (middle of the night pooping is still annoying, but usually only once/night plus wake-up call a little earlier than I’d prefer to wake up), but consistency almost back to normal. I’m pooping 4-5 x/day and I’m eating better (nausea mostly gone). Colonoscopy and endoscopy deferred for now.

May switch back to Aciphex for PPI - this has been a pattern with me - PPI stops working after 2-3 years, so I switch back and forth between Protonix and Aciphex. I take 2/day and they may have some effect on both diarrhea and of course osteoporosis. But I need them, so I manage the side effects.

Still not sure why he thought I might have developed bile salt diarrhea, which is why he prescribed the cholestyramine (that didn’t work), but I assume that an imbalance of the gut environment caused by something else can result in irritation from bile. The Xifaxan seems to have worked - or I was finally getting better anyway.

When I told him about the $400 cost, he said I should have contacted him - he could have helped with samples, or a request for a waiver of some sort. Live and learn.

 

[Spiky Bugger]

Saw the GI doc yesterday. Discussed remaining symptoms, which are slowly getting better (middle of the night pooping is still annoying, but usually only once/night plus wake-up call a little earlier than I’d prefer to wake up), but consistency almost back to normal. I’m pooping 4-5 x/day and I’m eating better (nausea mostly gone). Colonoscopy and endoscopy deferred for now.

May switch back to Aciphex for PPI - this has been a pattern with me - PPI stops working after 2-3 years, so I switch back and forth between Protonix and Aciphex. I take 2/day and they may have some effect on both diarrhea and of course osteoporosis. But I need them, so I manage the side effects.

Still not sure why he thought I might have developed bile salt diarrhea, which is why he prescribed the cholestyramine (that didn’t work), but I assume that an imbalance of the gut environment caused by something else can result in irritation from bile. The Xifaxan seems to have worked - or I was finally getting better anyway.

When I told him about the $400 cost, he said I should have contacted him - he could have helped with samples, or a request for a waiver of some sort. Live and learn.

Promising news.

My next fun activity at the GI doc is a Sucrose breath test. I mention it because I did a previous breath test for SIBO diagnosis. I recall that there were some old articles about how less-than-perfect that test was, but maybe they are better now? Anyway, if they ARE any better than they were ten years ago, maybe they can be used to pinpoint the origin of some of your issues.

 

[JackieOnLine]

I'm glad you are getting better, but wish it wasn't such a slow process.

 

[DianaCox]

Two weeks before we leave for CA for 2.5 months. Charles - who refuses to see a doctor - is still struggling with gut issues. The first part of our trip is an 11 day caravan with our RV club. Although we don’t drive THAT far each day of travel, we’re supposed to be the tail gunner for our group. I don’t think we’re going to be able to fulfill that role if he has to stop frequently to poop.

His problem - I’m going to let him explain that to the wagon master.

 

[JackieOnLine]

he wants to set off on this long trip not knowing what is wrong with him? what the heck?

the tail gunner for our group

what does that actually require him to do?

 

[DianaCox]

Yeah a but we’re going to where our old docs are, so if he gets sick, he can see them. After driving 60 miles each way.

It just means we’re the last one in the group, making sure we are aware if someone else gets in trouble, I think. We’ve never actually participated in a caravan before. Last time, we went up and back (it was only 100 miles away) on our own. We all use walkie-talkies - again, we have them, but never used them.

 

[Sheanie]

Heh heh. I would also let him finger this out on his own. I find that "helping" my husband is not appreciated. Plus, I love saying I told you so. Its what loving spouses do.

 

[DianaCox]

“Not appreciated” - AHAHAHAHAH! More like violently objected to, with varying degrees of hissiness. Infuriates me.

He would be so much better off if he just complied.