Xifaxan and now tears

DebE13 · Post by **DebE13** » Tue Oct 17, 2017 7:32 am

Well, the week trial on xifaxan didnt change a thing. I read it could take up to ten days to work so maybe it wasnt enough time but Id think my GI would know that. There wasnt even a slight improvement so maybe a week was long enough.

I left a message with my GI and now they want me to try entocort and colestipol. Ive tried them both. Neither work. Now I was on varying does of entocort when I tried the colestipol so would an increased dose of entocort make the difference? It doesn't seem likely. Am I wrong?

The next step was to comtinue with 9 mg of entocort which I have already told them several times I had discontinued before my colonoscopy. Do they not read my chart? I've told them it does not work and hasn't for the past 5-7 years. I am at my wits end. Why do we keep trying all the drugs I've tried before and failed?

Oh, and to make it all the better, my GI is put of the country and wont be back until next week Tuesday so there is no guarantee when they will get back to me. I am getting up a couple times in the middle of the night in addition to the 5-8 times during the day. Would that not get your attention?

Am I SOL? If I am, I'd rather they just say they have no idea what to do with me instead of jerking me around. No wonder I avoided them for so many years.

The steriod for the fissure isn't working well since I never know when it's safe to use. No use putting it up there just to turn around and flush it down the toilet.

I am sad to think I need to change doctors. I'm not sure any will be different.

Post by **tex** » Tue Oct 17, 2017 7:54 am

What can I say, I agree with you. Doing the same thing and expecting a different outcome is, according to Albert Einstein, the definition of insanity. You seem to be living in a medical care desert.

Tex

DebE13 · Post by **DebE13** » Tue Oct 17, 2017 9:06 am

Yeah, I’m in a rather dark mood today. It will pass.

I started doubting myself with the bike acid binders. Questioning if I did it right or gave it enough time. I just can’t see wasting more time. It reminds me of when I first cut out gluten and soy from my diet and continued to slip up and cheat. I remember standing in front of the cupboard with the door open thinking “maybe this time I won’t get sick if I eat this.” Finally I was able to accept how stupid that was.

I just sent a message to my PCP asking if he feels comfortable taking on my MC. It’s not really what I want and he may decline and suggest a different GI but he was a great help getting my thyroid meds where I wanted. So far, even though he frustrates me at times, he looks at my whole health picture and relates my thyroid to my GI issues. Throw in the fibro (but no official dx- failed the test) and maybe he can come up with something. It makes me nervous because the specialists should have the expertise but so far three of my endow and three of my GIs have me wondering.

Post by **tex** » Tue Oct 17, 2017 9:30 am

I think you are on the right track to find decent health care. In general, most physicians (especially specialists) are not as technically competent as their patients believe (or hope). IMO a doctor who doesn't necessarily understand all the details of your situation, but who listens and is willing to work with you (and think out of the box when necessary), is worth way more than any specialist who pretends to understand (but really doesn't) and who won't listen or work with you. The doctor who listens and cares, is thinking of you. The doctor who makes it clear that it's his way or the highway is thinking of himself (his or her career).

At least that's what I believe.

Tex

DebE13 · Post by **DebE13** » Tue Oct 17, 2017 9:57 am

I just got a call and now they want me back on 9mg entocort and Three tabs of pepto a day until my GI gets back. The pepto doesn’t work. They said to resume the entocort since I said it helped stop night issues. It does nothing for the WD or the other numerous trips to the bathroom throughout the day.

I want to give them credit for trying but I can’t. The nurse or whoever makes the calls is clearly frustrated with me.

DebE13 · Post by **DebE13** » Tue Oct 17, 2017 10:03 am

So does the fact that the doxycycline caused my first Norman In Ten years (no exaggeration) mean anything or is it just a fluke?

sunny · Post by **sunny** » Tue Oct 17, 2017 10:23 am

Deb, no wonder you are so frustrated! I've alsomhad doctors who didn't listen to me and just insisted on following "protocols" that didn't work for me....I'm so sorry you are still going through this nightmare....
Sunny

Post by **tex** » Tue Oct 17, 2017 11:57 am

So does the fact that the doxycycline caused my first Norman In Ten years (no exaggeration) mean anything or is it just a fluke?

I'm sure it means something — I'm just not sure what, because normally it should cause D.

It may represent the effects of a sudden shock to the system, caused by a sudden rearrangement of the gut bacteria population.

Tex

Erica P-G · Post by **Erica P-G** » Wed Oct 18, 2017 2:43 pm

Just throwing this out there, ....but I am on a long road to fixing something...not sure exactly what but I'm leaning towards gut bacteria since I got a Candida Albicans break out on my face.

I'm pretty sure I topped out my histamine bucket in July.....it presented itself with Candida Albican overload....it has been giving me wheals and unexpected pressure urticaria hives when I least expect it. I put myself on a regimen of 35 billion probiotic by Mercola and I can see small 2 steps forward one step back while doing this....I'm going to stick with this protocol and monitor my need for cholestyramine again this Fall/Winter like I did last Fall/Winter. I just shake my head at what small things can blow up to huge proportions when our gut isn't capable of handling something.

So back to your situation....it is quite possible that your gut flora is reeling out of control and becoming unbalanced, hence why nothing you are trying is working like it used to.

Believe me I'm just as stumped about all this as you are right now....I wish there was an easier way to determine what our guts needed and what we do or need to do to get back on track when they get side tracked.

Hope you find something that works soon :bigbighug:

Janie · Post by **Janie** » Wed Oct 18, 2017 5:05 pm

Deb, I don't know what to say but I put in my prayers every night!

brandy · Post by **brandy** » Thu Oct 19, 2017 5:51 pm

Deb....support to you....Brandy

DebE13 · Post by **DebE13** » Fri Oct 20, 2017 4:51 am

Thanks for all your kind thoughts. Another lesson in patience.