Newbie needs to stand up straight.

[Lindy Lou]

This is a fountain of valuable information for this very new Newbie. I have spent the past several days reading all over this site and your numerous links. I have decided for myself I need to start an elimination diet; however, I have just completed my first 30 day GI script of Entocort and and all the pain and problems are returning at an alarming rate.

I am asking for guidance right now on Pepto Bismol (is that 2005 info page still accurate?), and using Imodium, adding an H1 antihistamine, whatever else may help with the abdominal constant pain and the dozens of trips to the bathroom as I try to start eating nothing but chicken and potatoes???? I already do not consume milk/dairy. Right now I only eat what I can look at that does not nauseate me.
*************
history info
First major attack 5/1/14
Diagnosed LC 7/10/14
TIA (mini stroke) 2/2014 for which I am to take 1 325 mg aspirin per day - as I read I should not be taking aspirin?
Hematologist has me on B12 and Potassium

I take other meds that cannot me eliminated at this time.

I certainly read about myself on numerous postings . . . guess I'm lucky to make it to 68 before knocked to my knees. It does seem I am being ravaged by inflammation. You are an uplifting, knowledgeable group I am grateful to have "googled into".

L

[JLH]

Why are you going off Entocort so soon if it worked for you? (It never worked for me.)

Yes, getting MC later in life is better than having it when younger with small children or trying to hold a job.

[Lindy Lou]

Good question. Was under impression from GI to take 1 round, wait 3 weeks till next visit. No reason not to refill, as I assume I am not at any overdosing risk.L

[tex]

Hi Linda,

Welcome to our internet family. I'm not sure which page you're referring to, but the original "Pepto" treatment involved 8 or 9 bismuth subsalicylate tablets (Pepto-Bismol) per day for 8 weeks, in conjunction with a gluten-free diet. Most GI docs who recommend the treatment conveniently forget the GF diet part, because they still don't realize that diet changes are the key to controlling MC. As a result, most of their patients relapse within a week or so after completing the treatment, at which point the doctor pretends to be surprised, and recommends a stronger medication, which leads to the same eventual results.

If you begin to show side effects such as tinnitus or other neurological symptoms, discontinue the treatment. Dr. Kenneth Fine, the GI specialist who originally developed the treatment (because he has MC himself) is the founder of EnteroLab, and he no longer recommends the Pepto treatment because of the fact that a fair number of people seem to develop side effects from the treatment, and because the diet works without the Pepto treatment (it just takes longer to reach remission). For those individuals who do not show side effects to the treatment, it typically provides approximately an 85 % remission rate, after an average of about 2 weeks.

TIA (mini stroke) 2/2014 for which I am to take 1 325 mg aspirin per day - as I read I should not be taking aspirin?

With a dosage that high, you should ask your PCP about clopidogrel (Plavix) or some other alternative to aspirin. I take clopidogrel after 2 TIAs in 2009 and 2010. If you choose to try this, ask for the generic, because Plavix is overpriced (like all modern name-brand drugs).

Again, welcome aboard, and please feel free to ask anything.

Tex

[Gabes-Apg]

Lindy,
A good low inflammation gut healing eating plan is awesome way to start..
Your body will love you for it

Happy healing

[Marcia K]

Hi, Linda. My GI recommended the Pepto Bismol treatment. I took 6 tablets/day for 8 weeks. After several weeks I decreased the amount to 4/day because I was experiencing C instead of D. I haven't had to take any other medication since then. I completely avoided gluten and dairy right away and after reading Tex's book I eliminated several other foods. Recently I had the Enterolab testing and had to eliminate additional food items. It's not fun or easy, but for me this has worked. Prior to my diagnosis I was having 8-10 episodes a day. I am still dealing with inflammation in my body but as long as I'm not running to the bathroom I can deal with it. Good luck as you figure things out. This is a great place to come for help on your journey.

Marcia

[Leah]

HI Linda. I don't quite understand why your doctor took you off Entocort after one month. Our combined experiences has shown us that at least four months is usually needed AND one needs to wean the dose slowly down until you are off of it. If these steps aren't taken, relapse is almost inevitable. It took me 6 months and I have never had to take it again.

And of course, ANY medication taken is only a "band aid" to the inflammation. Diet changes need to be done in conjunction with any medication for a successful remission. Getting rid of Gluten, dairy, raw fruits, and fiber are a good place to start.I eliminated many more foods, but it's a very individual journey.

Hope you feel better soon
Leah

[Lindy Lou]

Following advice n encouragement thus far provided as I begin this grab for my life. Back on Entocort, have had to add Imodium in order to travel. Got myself pure liquid D3 I add daily to a few ozs of Gatoraid (problem w electrolytes). Eating dairy free, gluten free n organic chicken, gluten free rice chex w sprinkle of rice milk. I tried a little unadulterated pure Kobe beef, n nothing else. Been at it almost a week and today is the worst day ever. Is there a liquid drink like Ensure or Boost that may be safe for us LC/MC's to take? Any other suggestions as I R&R at the beach?
Lindy Lou

[UkuleleLady]

Hi Lindy,

There is no drink like ensure or boost, unfortunately. And as you probably know, those are laden with casein, soy, etc., so we can't drink those.

Many of us drink coconut milk (in smoothies, coffee, etc) which is a good way to get extra fat and calories, you could pick up some cans of that if you find you're losing too much weight (I lost a lot of weight at first but have gained most of it back).

Are you considering enterolab testing? I know it is expensive but can help you to identify your safe(r) foods. I don't want to alarm you, however, some of us react to chicken and rice. I eat turkey instead of chicken and the only grains I eat are quinoa, buckwheat and corn, and I eat very little of those as I seem to do better on a paleo diet.

My advice is to try to incorporate more meats into your diet, perhaps bacon for breakfast, a bunless burger for lunch. Eating more meat provides important protein for healing and slows down digestion.

Nancy

[Leah]

Nancy is right. You may need to try other meats. You may be one of us who reacts to chicken or rice. The problem with stopping and starting Entocort , it seems that with each subsequent re-try, it becomes less effective. That's why it's important to try to stay on it for a few months at least.

Gatorade is not our friend usually. You are better off just adding a bit of salt and a pinch of sugar to water, Look at the ingredients in that stuff. Not good. Coconut WATER is a good thing to try instead.

So sorry you are having such a hard time.
Leah

[Lindy Lou]

Yes, am considering the testing when I return home. Will try more meat, but pretty sure for now I can't tolerate fruits or veggies. Am on the Gulf of Mexico so our fish is BP oil spill and have had just a little since this all started 3 months ago. Thanks for the bacon idea, now that is an idea that does not induce nausea.
LL

[lisaw]

Agree with the previous comments. May want to consider the Gatorade and try some other meats/proteins. If you can do Enterolab, that would be good. Are you eating low fiber? If you are dropping weight, you may want to try adding in more carbs-sweet potatoes, squashes, white rice, and see what you can handle. I haven't seen anyone else comment on this before, but I do fine with rice, but for some reason can't handle more than a few bites of Rice Chex cereal. It can be hard to figure out when you feel like everything is making you run to the bathroom, but your idea of an elimination diet is good-start simple and slowly add in. Hope you improve soon, and can enjoy your beach time.

Lisa

[brandy]

Hi Lindy,

Welcome to the forum!

Gatorade is typically very problematic for us.....too many ingredients in it. Leah is dead on.

Gatorade is not our friend usually. You are better off just adding a bit of salt and a pinch of sugar to water, Look at the ingredients in that stuff. Not good. Coconut WATER is a good thing to try instead.

When you buy coconut water get one with out added ingredients. Label should just say coconut water. Some have a lot of added sugars and flavorings. If you chill the coconut water down it should be very refreshing on the beach.

I've also worked on jobsites when outside temps were 90s and drunk cold boxed chicken broth, Imagine or Pacifica which I think are both gluten and soy free. I put it in my metal coffee kleen canteen thing and I get the one that is NOT low sodium when working outside. Homemade broth is always better for us but if you have to buy boxed broths buy one without chemical names in the ingredient list and should list just real foods.

I was on Entocort for 4.5 months. Most forum users are on Entorcort between 4-6 or 7 months before they can get off and maintain without relapse (and that is being GF and DF etc.)

Keep up the protein. It takes a lot of protein to heal. Early on I found I did best with "uncured bacon."

Have fun on your vacation!

Brandy

[brookevale]

I know this reply is a month later but wanted you to know I was doing great in remission then took one aspirin and had D and abdominal pain again. Luckily it only lasted a day or two but then tried taking one ibuprofen (I have had a severe toothache) and have been in a D and abdominal pain flare for 3 days. I am not a doctor so I can't tell you what to do but I can suggest as Tex did to talk with your doctor about an aspirin alternative. Hope you are feeling better!

[Lindy Lou]

Thanks to all of you for helping me make it through my month at the beach. The one and only GI around does not think diet has anything to do with my feeling better on protein and potatoes. But I am generally a D free pain free protein freak. - Most especially as I am trying to wean off of 2 months on 9 mg of Entocort. I (read whisper) (think I may have made it to 6mg successfully after 10 days, ) but not yet sure and I personally don't mind keeping it at this pace for a month before going to 3 mg. I happen to be off aspirin now in anticipation of a procedure I need to have - And I will need one the end of October - In December I should be stable enough to have all the meds regimented properly - with even the least bit of luck.

This group remains my only life-line
I am appreciative
Lindy
PS I like icy cold coconut water!