New member

[Jetlange]

I am new to the group wish I found you all months ago! I have been battling with D for a year now plus always had issue most of my life with these issues. I had endo & colonoscopy
was diagnosed 12-23-13 w/ LC and put on Questran 3x daily. Then in April I got a flu and everything went out of control. My GI was in surgery so was prescribed Prontonix, Zofran,
Carafate, & drink Questran 4x daily. Needless to say things spiraled was on IVs twice. Got in to see my GI finally was put on Entocort in May. It been a life send I lost 30 lbs. I could hardly function. I am weaning off the Entocort & she wants me to go back on Questran.
I really want to manage w/ diet & probiotics. Anyone have a history w/ Questran?

[nerdhume]

Welcome to the group. Glad you found us, sorry you had to.
I have no experience with Questran but did take Welchol for several years for excess bile acid WD. It worked for a the time I took it and then stopped working, at that time I believe the WD was caused by MC and not excess bile. I'm not sure if Questran is considered effective for LC, someone more knowledgeable will be along shortly.

[tex]

Hi,

Welcome to our internet family. I certainly can't blame you for not wanting to go back to Questran. Some/many GI docs who don't understand how to treat MC prescribe bile acid sequestrants because of one of their side effects, namely constipation. Some doctors even mistakenly believe that the diarrhea associated with MC is caused by excessive bile flow. They're confused, of course. Unfortunately, bile acid sequestrants do nothing to address the inflammation that actually causes the D. For some patients, they will stop the D, but the inflammation remains. And as long as the inflammation remains, we have an elevated risk of developing additional autoimmune diseases, cancer, and eventually, cardiovascular issues.

The proper way to stop the diarrhea is to stop the inflammation that causes it, and the only way to do that is to remove all of the foods from our diet that cause us to produce antibodies. When we do that, most of us don't even need to take any anti-inflammatory drugs, because our inflammation will fade away, and stay away, as long as we avoid those foods.

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

Tex

[Gabes-Apg]

Hello,
Welcome to the group, and sympathy that you have MC, having issues and had to find us.

I was Dx'd late 2009, my specialist prescribed questran etc.
only when I got to the pharmacy did the pharmacist give me good information about it, and then I found this group of people and learnt a whole lot more.

Long story short on questran;
Yes, it can slow motility.
BUT, if taken a few hours either side of meds and food, it reduces the absorption of those foods and meds.
It is very harsh on your tooth enamel.
And as tex has stated above, it does nothing to reduce the inflammation in the gut, nor help you heal.

In line with what tex mentions above about diet, the questran with Imodium, managed to get me get through work days with minimal accidents, while I sorted out diet.
Within a week of reading the posts here, that the various med protocols helped some people, and were not effective in the long term, diet was the key to long term wellness and healing, I knew what I needed to do.

I identified all the major and medium triggers in 6 months. Followed a low inflammation, low fibre, gut healing eating plan. Strict GF, Df, YF, SF. Only took the questran for 3 months or so, was on small dose for most of this.
A scope and biopsy 18months post Dx, the MC was technically in remission, albeit there was mast cell issues which was an indicator of other inflammation issues.

As tex also mentions, and it might sound scary, ongoing inflammation is a big issue. With something like MC 'awake' in our bodies, ongoing inflammation affects every organ, system, muscle and joint of our body, and many end up with multiple health issues.
Removing all major triggers, minimising contact with medium/minor ones is imperative. Giving the body the right nutrients and adequate time to heal is also important.
Triggers are mostly food related, they can also be non food items like chemicals, mould, pollen, hair dye, ongoing stress (physical and/or emotional and/or mental) etc.

Hope this helps.

Re the probiotics, hold off for now, my observation of the hundreds here that have tried them, they only work once inflammation is minimised and some good healing of the gut has occurred.
Down the track, when you are stabilised with your eating plan, maybe try single strain.

If you want further info on diet, eating plan etc let us know.

Good luck for your wellness journey

[Jetlange]

Thanks so much everyone!
This has been a life altering process but I have found folks that get it! Unfortunately so. When, as I refer to it the perfect storm happened I had a lot of time to sit & read.Ha!! I was on the BRAT diet, FODmap, sometimes all Liquids (Ensure, Gatorade, etc.) the acid reflux along with 10-12 trips to the bathroom sent me to the ER. Where most of the internist would just say I was stressed(ya think)! Would love to get off of Entocort & Zantac having some side effects from it but scared of not taking it too! Used to love to cook & eat I'd try anything now I don't even like to go out to eat. Thanks for any advice, Julie

[Gabes-Apg]

Julie
the sucky part of MC is that there is no one med that will alleviate all the issues, or one diet/eating plan that will resolve the issues.

on a general note, high percentage are Gluten and Dairy Free, majority have multiple intolerances, and have to exclude eggs, soy, yeast, etc
when the gut is inflammed, reactions are intense, the smallest amount can induce large reaction.

some do modified paleo, some do modified fodmaps etc etc.
so, there is no right way or wrong way, there is your way. You have to figure out the eating plan that works for you.
(affordable, sustainable, suits lifestyle/family/work etc)

your symptoms (acid reflux etc) is an indicator of deficiencies. Vit D3, will help alot. Good quality lingual version will absorb better and work faster to help inflammation and reduce symptoms. things like magnesium, vit C are also good for reducing inflammation.

Once you have your staple eating plan, and there has been good healing you can expand the ingredients, and there are safe places to eat out. You can get your life back.
loving to cook will help, as you can tweak and modify receipes to make 'Julie safe' yummy meals and treats!

[nerdhume]

Julie said:

I was on the BRAT diet, FODmap, sometimes all Liquids (Ensure, Gatorade, etc.)

Unfortunately a lot of us have tried all that...and the other things we have always used when we had the 'stomach bug'....hindsight being 20/20 now I know.
BRAT maybe ok if you forget the toast (gluten)
Ensure? Dairy, Soy, Sugar, lots of preservatives and additives,
Canned soup? Soy! also maybe dairy, gluten, etc depending on the variety.
Crackers & 7-up? Gluten & sugar
Gatorade is mostly sugar with preservatives, colors & flavorings (which many of us react to)

As Gabes said no one diet will work. Most of us are sensitive to gluten & dairy, I am also more sensitive to soy than anything. It's trial and error figuring out a few safe foods to eat while healing.

[Leah]

Welcome! This is going to be a long journey, but there is light at the end of the tunnel.

As for the Entocort, I was on it also, and it helped tremendously, but if you don't get your diet in line at the same time you are taking it, you will relapse when you wean off. It's important with that drug to stay on it for at least 4 months and SLOWLY wean the dose down as your symptoms get better. For me it was 9mg. for one month, 6mg. for two months, 3mg. for another two months, and the last month was spent slowly weaning off. Don't forget, that I was strictly NOT eating GLUTEN, DAIRY, RAW FRUITS AND VEGGIES, SPICY FOODS, ACID FOODS ( like tomatoes and citrus), NIGHTSHADES, COFFEE, TEA, much SUGAR… and only using olive, safflower, and coconut oil. When I was on a low dose of the drug, i realized that I was also reacting to soy and it's relatives ( like peanuts and legumes), so I dropped those . My diet was based on meats, eggs, cooked well digestible veggies, sweet potatoes, white rice ( and it's products), Chex cereal with almond milk, corn tortillas and chips, avocados, olives, cashews , almonds, and a little apple sauce. I even stayed away from processed gluten free products for those first 6 months. It was hard, but soooo worth it.

Since then, I have been able to add many things back into my diet. I tested each food for three days straight. I can now eat spicy foods, white and black beans, small salads, potatoes ( yay french fries), dark soy free chocolate, more sugar ( like jelly bellies), decaf black tea and decaf coffee, GF bread, and very small quantities of some fruits… and white wine! Why just white? Well, I discovered that high histamines were an issue with me, so once I started taking an OTC antihistamine,I got even better. Red wine is very high in histamines. I still prefer vodka( soda/ lime).

You night want to buy Tex's book. Lots of good info in it. Just click on the picture of it on this page.
Ask anything and keep us posted on our progress
Leah

[Jetlange]

Thanks again everyone for all the info!
Having a bad day today as you all know those!
I am not sure of all my triggers. I've been DF, GF since April but not soy or eggs.
I also am on the weaning off of Entocort process 3mg every other day. I started to flare up
again but I'm not sure why. I was on so many drugs before that I don't want to go there again!
I did order Tex's book just the few pages online made me want to cry (but) in a good way!
Is there a link for the testing?

Keep fighting the good fight- Blessimgs, Julie

[JLH]

Www.enterolab.com

[Leah]

Hang in there. This process takes time. The Enterolab testing can give you the answers you are looking for. If you can afford to, do panels A and C
Feel better
Leah

[DebE13]

I tried cholestyramine when I was first dx. It didn't help at all. Just like drinking a glass of sand with an added perk of a stomach ache. Although, that was my experience, whereas others have found it helpful.