Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I appreciate you doing so. I'm just really worn out and at moments overwhelmed so I have to take a break sometimes from thinking about all this. I look forward to being more cheerful on this board. Caffeine makes me nervous and makes it harder to fall asleep. I tried two small sample cups of decaf coffee at fresh market sometime in the last 6 to 7 months after avoiding it for 16 years... The first time with one sample cup I was fine but the next time I went I had two sample cups and didn't feel so well. Gastritis + if I remember correctly. While I was drinking it it sure did taste good after so many years of avoiding it but I will continue to avoid it now. I remember fondly having lovely espressos in Italy in 1999! I was chubby, eating anything I wanted and drinking wine and coffee back then!
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
Big hot tea (black) drinker here. I've never stopped drinking it flare or no flare. Tough since I"m in the south but I've eliminated iced tea really just to cut down on the caffeine. I drink my 1-2 cups of hot black tea with 1/2 packet of sweetleaf stevia. This is the only stevia I can tolerate. Most have fillers that are problematic.
My opinion to anyone that can't resolve a flare is....
Eat Bland and Drink Bland - this means 2-3 ingredient food for a few days - pick the least reactive you can remember last. That may seem drastic, but there is something in the diet, environment, body/mind that is causing irritation. A short fast should help stop the clock on the intestines, let the individual regroup, rest, and rethink a different strategy for the next coming days.
I feel so sorry for everyone including myself when we hit a rough patch.....but a "put the brakes on kind of approach" will help.
I read to many variables in many peoples stories of flares.... Protein, some carb and safe liquid should be anyone's go to when nothing is working. It's even ok to stop all supplements too
Good Luck Everyone
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dr's office just posted results on the patient portal (talked to a medical assistant there this morning), states all other stool samples were negative.
I'm just wondering what to do now people. I only went to the bathroom 5x yesterday, but it's still watery diarrhea. Call GI office and try and get in there (in like the next 2 weeks...they are hard to get into..), go to the ED and let them admit me and go at it (and redo all the stool tests..), or what????
Stopped the pepto today. Have been taking it for 2 weeks at 8 tabs a day with no results other that black diarrhea...I truly haven't had something like this hang on this long ever. I'm beginning to really worry about myself. I am staying hydrated, have made the hydration drink on an old Polly post from years ago. Just don't put sugar in it. I do pee.. I am eating the basics.
Still gurgly and am starting to just feel generally unwell. Still do my mag spray and the oral VitD at 6,000/day.
Now all my coworkers are concerned, even getting sympathetic texts of support from the 25 year old guys!!! Sweet, by disconcerting at the same time.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
go back to really bland basic eating plan, one or two safe proteins, small serves of 1-2 safe veges with it, same items, 3 times a day with lots of home made bone broth - all well cooked, only cooked with salt
only drinks are water / or the polly recipe for hydration.
do the doses of the cholestraymine to slow motility/reduce water content
if after 3 days this does not reduce the WD / amount of BM's etc. then go to the doctor.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I'm starting to hear panic in your posts.....do you feel well over all?
I ask this because our intuition about ourselves can be the most important thing to pay attention to.
A flare can take time to heal, based on the amount of healing that needs to take place, does that make sense? Any amount of undoing from what ever may have sparked it is going to take that much time plus some to correct it. Patience is so hard during this time.
But if you feel you have a medical necessity going on within yourself then you need to act upon it. I'm not sure there is anyone here who can pinpoint your personal need at this time, only give you lots of different opinions on what may work based on your descriptions.
I certainly hope you find healing soon....please keep us informed of your well being.
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
having parasite / bacteria / virus will make food reactions worse.
mainstream approach is lots of antibiotics
natural is things like olive leaf extract / diatamacous earth / coconut charcoal.
with either approach, it wont make you feel better straight away, you will tend to get worse before you get better as your body clears the parasite/bacteria/virus etc.
I am trying to recall all our previous conversations - do you have mold in the workplace or at home? the biotoxins from mold linked with active MC inflammation could be causing this level of issue. cholestryamine should be helping, but only if you are away from the sources of the biotoxins.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Gabes-
The nurse practitioner asked if I wanted to have her call in a prescription for whatever the generic name for Flagyl is to treat c diff and giardia "empirically". I sent her back an email saying I would like to not treat anything that I'm not POSITIVE about with antibiotics given my MC diagnosis. Dont want to kill off anything good in there (although at this point I'm not sure there is any good bacteria left).
But really Gabes. I am scared at this point. This all started and I was just feeling bloaty between diarrhea bouts, then moved to rumbly, now I just feel sort of not quite crampy, just constant "disturbance in the force" gut wise ALL THE TIME. So this is why I don't think I'm going the right direction. I was almost wanting those stool samples to come up with something, and I know they can be wrong, but like I told her...is it worth doing more and waiting another week to get results back??
I don't want to go to the hospital and spend a ton of money but if that gets me some answers then that might be where we go. I won't even be able to eat
at my own hospital!!! Isn't that sad??? What then??? My worst nightmare has come true, I've wondered about something like this happening before.
I understand that gut stuff is going around my department. But you would think I would be getting some better by now. I am basically only eating turkey/lamb/elk and white sweet potato/acorn squash, way overcooked carrots/zucchini/butternut squash. Did a banana this morning with some sunflower butter on it. I am not hungry but I know my body is starving to death. ..... Oh, and black tea (darjeeling). Is 3 more days of this (cutting out banana, nut butter and tea) going to change anything???
Sorry, just venting. I have never been in this situation before and it scares me. I have no more weight to lose here Gabes. And I am tired of feeling shi**y.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
my thoughts are
- you were still working at the start of when your body tried to fight this ?? issue, so not resting when you body needed rest has maybe contributed to the issue
- things like trying the coconut water, having the nut butter etc, may also hindered any improvements
- you also stopped the cholestraymine at this point as well??
(if I am wrong with any of this let me know)
the combo of fighting a ??issue, adding new food/drink items and changing medication protocol and throw some hormonal issues into the mix - yes that is reason enough for things being so bad.
and sadly, mainstream medicine has limited scope to confirm and help you with these issues.
your body is not starving to death - yes it is struggling.
I know you are scared, as not being able to 'fix' or 'control' this is unsettling, but that is part of issue. We don't get to fix or control everything.
based on my 7 plus years on this forum (and the few years on other health issues forums) my suggestion is;
have blandest eating plan you can, safest protein, 2 safest veges as soups stews. take the cholestryamine and consider spending money on functional testing for hormones (not mainstream has to be functional) minimise contact with variety of toxins (turn off the wifi, sit in the sun for the day in a place with the lowest amount of possible toxins)
other options
- do functional testing of poop (not mainstream) to look for rarer issues
- look at coconut charcoal, and/or diatomaceous earth as this will treat rarer bacteria/parasite/biotoxin issues with or without testing for them.
aside from this I don't know what else to offer
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have been following this thread. So sorry you are still dealing with this.
I agree with Gabes about the blandest diet possible and continuing the cholestyramine (if you SHOULD by some chance have C. diff, the cholestyramine will help to remove its toxin - it is often used along with antibiotic as treatment)). I would also stop the Pepto for now, if you haven't already.
BTW, another easy way to get potassium is by using a salt substitute....most of them contain potassium chloride.
What about Entocort? And, in some cases, one needs a "jolt", like a course of oral prednisone, to quell the flare.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thanks guys-
I am starting to get desperate. Gabes, I started working at my hospital 3 months after it opened, brand new building. Unsure about the mold situation there, more concerned about what you can pick up from patients and coworkers!!! Like I said, patients are there sometimes a few days before they are even flagged as c diff + and put on contact precautions. Still doing 3 packets of cholestyramine/day. I've read up on diatomaceous earth but wouldn't that be sort of abrasive to an inflammed gi tract at this point??? And getting worse before getting better!!!! Yikes I have some food grade DE a friend recently brought over but I am actually afraid to dabble in it right now. My townhome is about 16 years old now, who knows about mold. I do have one cat left...
Erica-ya, I get it about the eating/inflammation thing. I have basically been in a flare for over a year. Have been gf/df/sf since October of 2011, got more Enterolab testing done July 2016 with what I figured was crazy results. How could I have been even functional for all those years with all the stuff I was reacting to???? That was my first thought. So, I went pretty hard core at change late last summer but did do the "least reactive" of the 2+ category on occasion. Tried rice a time or 2 with bad results (that was my 3+)....I truly believed that cholyestyramine was a miracle drug when I first started it as it settled things down once I got to 2 packets/day. I have been up/down on it since. Was improving enough to try cutting down on it a month ago, about a week later is when this all started going downhill....coincidence??? Who knows.
Ok, will chill a little girls. Don't want to start antibiotics needlessly. Will give it a day or 2, cut out tea and sunflower butter/bananas. Just talked to PCP's office a minute ago, she wants me to wait a little too as my diarrhea has gone from 15x/day to like 5x/day. Not better consistency wise, but better number wise. And she thinks as long as Im hydrated and eating that the hospital wouldn't do much for me at this point
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Laine
I don't mean to scare you but new buildings are still a risk for mold and other contaminants. current day building practices are about profit, not about healthy long term builds. numerous hospitals in Australia have mold issues (recently one had to close the ICU as a patient died) and a newly built hospital that has not even started to be used, has major lead contamination in all the pipes, water supply throughout the whole place is toxic. Another used mold infested panelling was installed on an extension that has now impacted older areas of the hospital.
the thing with mold, the new build might be ok, but all the equipment, paper records etc that came from previous locations can bring mold with them.
I don't think mold is the root cause, but given your work environment, contact with patients with various viral, bacterial, parasitic issues, the impact of the events of the last 18 months (personal life and health) and the impact on your adrenals, immune system etc, along with hormonal etc - the toxin load on your body is causing mega inflammation and making reactions to safe foods worse.
any medication has a limited scope of success when the toxin/trigger load is too high. Sadly for MC'ers excess WD is our main symptom.
reading your last response that being away from work you have gone from 15x to 5x a day is one indicator that workplace may be contributing to the issues.
I too have had to embrace career changes, moving towns etc to lower toxin load etc. I get it, it is HUGE to even contemplate.
from my own journey, no amount of medications / supplements / eating plan changes helped until I lowered toxin /trigger load in my life. for me it was a combo of mold, EMF/Wifi, emotional stress, physical stress, and smaller items like fixing hormone issues (functionally) avoiding fluoride in water supply, reducing exposure to cadmium, (via not working in aerospace and reducing coffee intake) it has taken me 3 years to get 'good healing' from a chronic stage of multiple AI issues.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Down to 5X from 15 is a big improvement. Maybe you did have have a virus on top of everything else, and that complicated matters. Even C. diff usually runs its course, and the fact that you've never had bloody stool suggests that you may not have C. diff.
Personally, I think the mold risk is overrated. Yes, we had a neighbor who died from it when it caused an infection in his heart, but usually there are special circumstances involved. Living on a working farm with grain storage facilities means that I'm exposed to a lot of mold, year-round. So personally I don't rate it as a particularly big problem. Mold is all around us. I get hay fever if I get too much of it, but no major effects. I noticed last night when I watched the local weather report on TV, the allergy report rated mold as "high", as it often does, and it was just another, day, nothing special about it. So everyone in this part of Texas is exposed to that mold level. But I'm having no allergy symptoms. Yes, black mold in a building is a serious problem, but the people who have problems with it are probably especially sensitive to it. But that's a risk with a lot of things — like people who are allergic to wasp stings, for example.
Some food for thought — just thinking out loud.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
just like people can have genetics that make them more likely to have IBD's, reaction to gluten etc, the same applies to mold triggers.
Mold is just one of a multitude of triggers. And as we have seen here over the years, everyone is different. When I see people having ongoing issues that are not improving with the bland diet, medications, and supplements - I mention things like mold, hormones etc as a possible item(s) causing the increased toxin load on the body
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Wow Laine, a flare for around a year You must have superhuman strength to go that long I admire your perseverance.
I'd seriously stick to the cholestyramine gig with the real sugar not the fake sugar one, and I'd focus on the prescription dose of scoop morning and night. If you've been doing it keep at it! I know it may feel fruitless but you may need a few more months of this type of healing if you were seeing results even small results.
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Caffeine makes me nervous and makes it harder to fall asleep. I tried two small sample cups of decaf coffee at fresh market sometime in the last 6 to 7 months after avoiding it for 16 years... The first time with one sample cup I was fine but the next time I went I had two sample cups and didn't feel so well. Gastritis + if I remember correctly. While I was drinking it it sure did taste good after so many years of avoiding it but I will continue to avoid it now. I remember fondly having lovely espressos in Italy in 1999! I was chubby, eating anything I wanted and drinking wine and coffee back then! 
when we hit a rough patch.....but a "put the brakes on kind of approach" will help.
I have some food grade DE a friend recently brought over but I am actually afraid to dabble in it right now. My townhome is about 16 years old now, who knows about mold. I do have one cat left...
You must have superhuman strength to go that long I admire your perseverance.