Lomotil- absolutely not the answer

Gabes-Apg · Post by **Gabes-Apg** » Sun Oct 22, 2017 4:16 pm

Deb
the hormone situation is a very strong contender as main issue.

my gut has been way better since i have fixed lifelong PCOS/hormone issues (nutritional balancing fixing methylation cycle etc)
my whole adult life i never menstrated normally - now at age 48 thanks to the support of my great functional practitioner I have a normal, minimal symptom 28 day cycle.

key contributers to resolving these hormone issues were:
- magnesium
- B6
- zinc

in line with the zinc suggestion, Lilja recently posted about having better poop after having zinc - and found a study about zinc and iloelical valve
further to this zinc is also key to balancing stomach acid
https://www.livestrong.com/article/5091 ... flux-zinc/

hope this helps

Gabes-Apg · Post by **Gabes-Apg** » Sun Oct 22, 2017 4:26 pm

another article that talks about zinc, magnesium, B6 etc and hormones
https://www.livestrong.com/article/4504 ... -hormones/

Zinc increases the conversion of this fatty acid into prostaglandin E1. Other nutrients in this process include magnesium, vitamin C and pyridoxine, which is a form of vitamin B6

.

DebE13 · Post by **DebE13** » Mon Oct 23, 2017 8:27 am

I have a co-work who had a fecal transplant due to ongoing C-diff. I did some reading on the idea because it makes sense given my history, although it seems like my case wouldn't be eligible since it's not c-dif related. I will have to keep reading on it. I saw info on the UC sites as a means of treament but many of those people did it at home. It did make me chuckle to ask my husband if I could have his poop. Now that is true love.

He seems to be a good candidate from what I've read so far. He is one tough guy with no real health issues (that we know of) aside from aside from high cholesterol that we're working on. I will have to look into the screening because it does make sense that a healthy person could carry pathogens that they have no problem fighting off but could wreak havoc on the recipient. I did find it interesting that it was advised to find someone with a similar body type because a heavy donor could cause a thin recipient to become fat. He is quite a bit heavier than me but that is due to the side effects of his love of beer. I wonder if that matters? We used to wear the same jean size- men and women carry weight differently. He is the same except for a beer belly whereas I would have plumped out all over if I enjoyed spirits of any kind. I'm not sure of what my GI's reaction would be to the question. He returns this week so I probably won't hear anything until the end of the week.

Thanks for the reminder about splinting at work. I don't like to draw attention to myself but since I do a lot of heavy lifting and building pallet for delivery it would make sense to wear them.

Thanks for the links Gabes!

I'd like to find another functional medicine practioner but I'm a bit gunshy since I've gone to three and ended up getting worse. Without the health insurance coverage it makes it tougher to give it another try.

My vit D levels are on the high end and I was told I should back off to 2,000ius instead of the 4,000iu.

I know my B12 is actually over the high range recommendation. I'm not sure about the others.

I am looking forward to reading up on the zinc.

DebE13 · Post by **DebE13** » Tue Oct 24, 2017 11:33 am

Got the call-my GI is back in the office..... Going to try another two weeks of doxycycline. Mixed feelings.

sunny · Post by **sunny** » Wed Oct 25, 2017 10:21 pm

Tex,
I had a fecal transplant in Portland, Or. with a Naturopath....he was working with regulatory authorities.....he had been treating UC , Crohns , etc...but was shut down...only authorized for Cdiff.
He was having amazing results with patients with aforementioned gut issues, but all his notes of documentation, patient records , etc. were brushed off. It didn't meet the protocol of Gastroenterology......
Sigh.....
So all those patients were left high and dry...can't help wonder if that's a missing link...all his patients had tried "everything" that Gastroenterology experts had to offer....
Just throwing that in there...FWIW...
Sunny

DebE13 · Post by **DebE13** » Thu Oct 26, 2017 2:54 am

Thanks Sunny- that option has been on my mind.

After doing a little reading on it(mostly UC related) I decided not to bring it up to my GI. They are just finally accepting that food can be a factor in MC

I ended having an out of pocket bill of almost $1,000 for my endoscopy. I’m glad we checked for all problems again but it’s hard when all I got was everything is all good, which of course, is a good thing.

It’s a little nerve wracking to think of doing it on my own but really seems to be a quite simple process.

I wonder how much Big Pharma has to do with it? Heaven forbid we find an effective treatment for some people that doesn’t involve lifelong medications.

Post by **tex** » Thu Oct 26, 2017 8:11 am

Sunny,

Thanks for the information. I'm pretty sure that the reason why fecal transplants are being swept under the rug is because of Big Pharmas lobbying — they can't figure out how to make any money out of fecal transplants.

Tex

Lisa_D · Post by **Lisa_D** » Thu Oct 26, 2017 10:08 am

Deb,

I'm new to the forum, but my diarrhea got much worse when I started taking topomax, and my GI believes there's a connection there. I'm not sure if you're still taking that medication, but if so, you might want to discuss that with your doctor and see if you can switch to another med.

lisaw · Post by **lisaw** » Mon Nov 06, 2017 3:48 pm

Hi Deb:

I know you've posted quite a bit of your history here, but I thought that you were on a low dose of Budesonide the last few years, and it kept your D to first thing in the morning? Has it changed to more frequently through day again? Like you, I don't ever get to remission. For me, doing well is the D being limited to the first couple of hours in the morning, and I'd be thrilled to be there again. Had a terrible flare this year, after getting a stomach bug earlier in the year, that set me off and could not get back on track. Went back on Budesonide about 3 months ago, and am doing well now It slows me down which is fantastic, but certainly not close to "normal". I am hoping to bring the dose down eventually to 1 every other day, and that I can maintain adequately on it, knowing I'll lose some of the improvement. Don't want to stay on it long term, but am also scared to get off of it.

I think there is too much emphasis on this forum that you can get to remission or live comfortably with it, with diet alone. What I'd give to be back to several times in the morning, without medication.

I'm sorry you continue to have so many issues, and hope things improve.

L

Polly · Post by **Polly** » Tue Nov 07, 2017 9:45 am

Oh Deb,

Lurking today and sorry to see your continuing saga. Don't really have that "magic bullet" for you, unfortunately. Remind me again about your experience with cholestyramine. I was diagnosed about 18 years ago and tried for years to control the MC with diet. I had partial success but never complete control to the point where I didn't have to worry about an accident whenever I went out. Cholestyramine literally gave me my life back 2 years ago when my GI doc urged me to try it. I keep bringing it up because it takes some tweaking to find success and the right dose with it. You need a trial of at least a month (maybe more) and you may need as much as 2-3 packets twice or three times a day initially. Once you become constipated you can begin reducing. Right now I am on 1/2 dose once a day. It is an extremely safe med. and you can easily time it so it doesn't interfere with absorption of other meds.

I always experienced formed stools with Cipro. And I believe my MC was precipitated by a several week course of doxycycline that I took for suspected Lyme disease. Of course, we are all different, probably due to the unique composition of our intestinal florae. Probiotics never did anything for me, and I actually question the basic theory of using them......because it artificially is building up certain strains at the expense of others.

I worried over those many years that my very restricted diet was further altering/damaging my intestinal flora. Of course, we know it helps to avoid fiber until some gut healing has occurred, but I always worried about avoiding it because fiber serves as the best natural prebiotic for the intestinal flora. One of the good things about cholestyramine is that it has allowed me to eat almost anything again. I will never again eat wheat or soy, but I can eat almost everything else, including lots of fiber every day. I think the experts now believe that up to 50 gms/day may be more in line with what our paleo ancestors ate.

I did Lomotil, too, at one point, and had the same experience you did. I see absolutely no advantage for Lomotil over Imodium. In fact, Lomotil can be dangerous, because its therapeutic dose is too close to its toxic dose (that's why they lace it with atropine - so you won't overuse it).

Keeping fingers crossed that you will find relief after such a long and miserable haul.

Hugs,

Polly

DebE13 · Post by **DebE13** » Tue Nov 07, 2017 12:47 pm

I took all the meds for migraines in 2006 and prior. I've had no issues with them since I eliminated all the crap from my diet. Too bad it took hitting rock bottom in order to figure it out.

I took budesonide for many years on and off and at a high and low doses.... Like a roller coaster. It did help to manage night issues but that was it. It's always been WD and it eventually got worse. It kind of sneaks up you. I put my MC on the back burner for many reasons throughput the years. Life in general, family obligations, being tired of dealing with it. Not really good excuses by any means but a reality. I didn't gove up my change in diet and don't ever plan on it but I stopped looking to my GI for help. I spent over three years floundering with my thyroid. Thank goodness for the support of this forum. I do believe it is what kept me sane.

Polly, I've tried cholestyramine powder two separate times and also tried the colestipol pill. I would have to go back and check my calendar as to how long I stuck with it and what the side effects were, if any. I'm not sure if I took it for as long as a month.

I had a test done many years ago by the functional medicine doc I saw and I had virtually no beneficial gut flora which was confirmed again with the UBiome testing I did not too long ago. I am a big believer in the dietary modifications for MC even though I haven't ever achieved remission. I can tell when I eat something I shouldnt and it makes a big difference. There is more to it, in my case, and I'm sure my thryoid issues still plays a role in things. It's the perfect storm for poop havoc.

sunny · Post by **sunny** » Tue Nov 07, 2017 2:11 pm

Deb, I'm so sorry that you have such an ongoing problem....my daughter started the Plant Paradox diet promoted by Dr Gundry. The main difference to the way I'm eating now....( basically Autoimmune Paleo ) is removing LECTINS from my diet...I got his book at the library and researched plant Paradox on this forum and decided to try it...I've tried everything else! I'm back on Budesonide ( my Cardiologist insisted cuz he wants the diarrhea to STOP ! It's impacting my heart and kidneys...he said he didn't care about the side effects!
I'm having much better results since starting the PP diet and avoiding lectins....I had no idea how many fruits and veggies have lectins! Most of my diet was full of lectins! There are videos on YouTube and articles online....
The other thing I changed was to start drinking RESTORE... a liquid they claim helps restore tight junctions in the gut plus other things...it's tasteless and I take 3 tsp daily.
I know this is problematic since I don't know which is helping, No lectin eating or Restore.... maybe both?
But I'm like you...desperate to put a stop to the MC diarrhea...it appears my life depends on it...( not to be too dramatic...) but I feel awful with my worsened heart failure....no energy...no endurance....extreme fatigue....
We are experimenting with cardiac 80/58 at the lowest....seem stable now at 100/58...
so you can see why I'm willing to try almost anything to find those answers on why diet isn't helping....especially since I was diagnosed in 2008.... some good months, followed by longer bad months....
Sunny