Everything has failed....anyone know the pepto protocol?

Marie · Post by **Marie** » Sun Aug 11, 2013 1:27 pm

I agree, hormones are a toughie. My MC issues started in '07 with my first pregnancy so hormones are highly suspect. Doctors were not diligent; they said "IBS". Finally, 5 years later I got the MC diagnosis. My GI from back then told me it was like having a bum knee, nothing a little Asacol couldn't fix. Ha, I wish! There should be a list of PCPs/GIs to NOT see. ;-)

Feel free to PM me anytime if you want to commiserate more. Take care!

Fiona · Post by **Fiona** » Sun Aug 11, 2013 1:29 pm

Susie, one thing I should add...the Pepto DID help very quickly. I went from watery and what I call "angry" D four or five times a day to what is mostly "soft serve" once a day. I do still get D on occasion, but it's only in the morning, never more than once in a single day, and of the much more "gentle" variety, if that makes sense. It's just that I don't want to act like it's a miracle solution or anything, especially because I'm taking it at the same time as going GF and DF with my diet, so it's hard to say what's responsible for what given how early on in the healing process I am at the moment. And because I'm not an MC veteran, I don't know if my day-to-day bloating, fatigue, etc. are due to the illness or the treatment, because it could go either way based on what I've read here. In addition, I live in Austin, Texas, and it's HOT right now. I'm originally from Cleveland, Ohio, and I only moved here three years ago, so I'm not used to it yet and don't know if I ever will be. I find extreme heat to be very draining, and what's considered room temperature here would be considered a hot summer day where I come from!

So, just didn't want to blame my blah feeling on the Pepto. I do believe it's helping me, but I'm keeping my expectations realistic. And to your point about eggs, soy, etc., if at the end of the Pepto treatment things aren't shaping up as they should be, I will start eliminating foods in addition to the gluten and casein, even though my EnteroLab results didn't show sensitivity to eggs or soy.

Anyway, best of luck to you. I sure hope the Pepto gives you some relief.

Fiona

UkuleleLady · Post by **UkuleleLady** » Sun Aug 11, 2013 4:28 pm

Fiona wrote: Prior to that colonoscopy, I was told I had a virus followed by "Post-Infectious IBS," as all the stool tests for C. Diff and whatever else came back negative. The only reason he even performed the colonoscopy was because my older brother had polyps removed before the age of 50, not because he suspected MC. I've since come to realize that "Post-Infectious IBS" is a euphemism for "Good luck with that."

Fiona,

I can't help but think we have the same doctor! I am your age and they gave me that silly Post-Infectious IBS diagnosis at the get go.. then I was told repeatedly how odd it was that I have MC as I am so young.. What a load of hooey. I have been repeatedly dismissed by my GI. He is impossible. He must really hate his job.

If you find a doctor you like in Austin, let me know. I will do the same, as I am going to be finding a new doctor when I'm done with my entocort.

tlras · Post by **tlras** » Sun Aug 11, 2013 4:36 pm

Hi Susie,

Just wanted to wish you luck with the Pepto treatment...I really hope it works for you. I was having D 3 to 5 times a day and the first day I started the Pepto I went into remission. At that time, I took soy out...had already taken out dairy and gluten and D persisted. The Pepto was a lifesaver for me....took 7 pills a day for 2 months then slowly weaned the 3rd month. I'm surprised I did so good on it as I had to take the chewables which have artificial sweeteners in it....may have been why I still had a little bloating while taking Pepto or just hadn't healed enough yet. I've now been free of Pepto since December and only get bloated if I overdo the fiber/sugar.

So I'm keeping my fingers crossed for you and please keep us updated. It's a shame that one drug that works so well for some doesn't for others. You've had to give up a lot of foods and I'm praying the Pepto will be your lifesaver as it was for me. It's just unfortunate that you can't take it daily forever!!

Take care,
Terri

Fiona · Post by **Fiona** » Mon Aug 12, 2013 9:54 am

UkuleleLady: Sounds like a plan!

Fiona

terre · Post by **terre** » Mon Aug 12, 2013 10:38 am

[Dr. Fine, was based on 8 tablets (or the equivalent dose) of bismuth subsalicylate per day, for a period of 8 weeks. In his published trials, the average time to remission from D was approximately 2 weeks,]

Tex, do you stop taking the Pepto if you reach remission at some point before the 8 weeks....or continue even if you reach remission?

Terre

Post by **tex** » Mon Aug 12, 2013 12:52 pm

Terre wrote:Tex, do you stop taking the Pepto if you reach remission at some point before the 8 weeks....or continue even if you reach remission?

No, don't stop taking it just because you reach remission, because Pepto-Bismol actually has antibiotic properties that help to heal the gut. If you stop taking it permaturely, you may relapse, because it takes time for the diet changes to heal the gut sufficiently to where it will remain in a state of stable remission.

On the other hand, if you begin to develop constipation, then you should lower the dosage (as needed) until C is no longer a problem. Just listen to what your body is telling you, as you go.

Tex

DebE13 · Post by **DebE13** » Mon Aug 12, 2013 6:57 pm

I'm going after the hormone issue on Friday. When I'm frustrated I'm tempted to say "screw the diet I feel like sh** no matter what I do." But I know how foolish that is. I have come a long way by eliminating gluten, soy, dairy, and eggs and limiting high histamine foods and legumes so for me, diet is the first step. At the same time I am not able to discontinue entocort despite my best efforts. I definitely have other issues going on and am hoping to figure those out and get control of my D. However, I fear I may not be able to eliminate meds but will keep trying because I hope determination will eventually get me where I want to be. It's always a toss up between perseverance or acceptance of something I cannot change. I've tried every type of treatment and nothing has helped. Changing my diet was fundamental - I wish I would have started with that first, had I known then maybe I would have had more success with other treatments.

I am saddened by the years I have lost of my son's childhood yet I did the best I could while feeling lousy. He is off to college in a few weeks and that window of time is now closed. I did not choose this illness and do the best I can to look forward at what I can do instead of what I've missed out on. I take the brief moments of happy times as treasures and try not to dwell on the rest. It's easier said than done but my values have changed.

Susie, I hope you find something hat gives you some relief. I couldn't imagine my morning without coffee either. I gave it up for a couple months in hopes it might help- ooh, didn't like that at all.

Good luck!