Immodium

[Gabes-Apg]

If I am poorly, not necessarily in a flare, but if my immune system is fighting something I revert back to my easy to digest staple, mine is gooey rice, chickenmince, small amount of carrot or sweet potato.

Like Tex said, bland well cooked foods assisthealing. Don't have too many ingredients, ie no more than 5 in the meal.

All my meals are made off a base of my home made bone broth. Bone broth is rich in amino acids and gelatine, all of which are fantastic for helping the gut to heal. I make the gooey rice in it, boil veges in it, poach eggs in it, make soups/stews in it.
I make a big batch every month and freeze it.

Hope this helps.

[annaewa56]

Thank you. Yes it helps.
I just made my first bone broth. It was great. Growing up in Europe, all the soups we ate were made with meat bones.
I have not cooked that way since I came to US over 30 years ago.
Just finished the last bowl of it with sweet potato noodles.

My diet consists of turkey, lamb, beef, fish and some vegetables such as summer and winter squashes, carrots, sweet potatoes.
I can't have chicken or any grains for now, even GF. I also eat apples cooked in water to an apple sauce consistency and cooked frozen blueberries.
Trying to stay away from high histamine foods. This is the most restrictive diet I have ever been on.

My bone broth cooked down to a jar. How many hours do you cook your bone broth? I like the idea of freezing it. Next time I need to make a bigger batch.

[annaewa56]

Another question regarding antihistamine drugs.

Since over the counter ones I tried all give me bad headaches with the exception of Claritin, I contacted my doctor and she is offering
hydroxyzine 25 mg 1/2-1 tab in place of the other antihistamines. They are not familiar with DAO enzyme. The nurse wrote that hydroxyzine can cause drowsiness and dizziness. She also said that I can dose higher than 25 mg, e.g. 50 mg, but will cause more of those side effects. If the hydroxyzine does not help, she advised I follow-up with your gastroenterologist.

I would like to know if any of you have had any experience with that drug.

[tex]

That's a very old (first generation of course) antihistamine. The nurse wasn't kidding about the drowsiness, because in addition to being used to control histamine, it's sometimes prescribed as a sedative to treat anxiety and tension. It's also useful for preventing nausea and vomiting.

I have a hunch that no one here has ever used it. Most of us just use OTC antihistamines, because of the convenience. OTC antihistamines usually work just about as effectively as prescription antihistamines. It's worth a try though, if the drowsiness won't be an issue.

Tex

[annaewa56]

I am afraid of this medication after I have read all the possible side effects. Unfortunately I can't tolerate any of the OTC antihistamines except for Claritin.
But will Claritin alone be of sufficient help to stop the ongoing D? Or do I give this prescription one a go? My gastroenterologist wants me to restart Entocort (9mg) tomorrow.

During the two weeks of this flair up I have lost quite a bit of weight (I am 5'7" and 119 lbs now) and I am scared of the downward spiral I experienced back in January when I postponed taking Entocort for 2 months with the D raging on.

How long can people allow the D to continue without getting extremely sick? I seem to deteriorate very quickly.
As much as I hate the idea of taking Entocort again I don't see what other options I have.

Any suggestions?

Also do you think it is ok to eat cooked apples and cooked blueberries (in water only) or is it too much fructose and too much fiber right now?

[janet]

I WAS DIAGNOSED WITH MC AFTER A COLONOSCOPY, I HAVE TAKEN IMODIUM FOR YEARS IT STOPS EXPLOSIVE D, I THOUGHT I WOULD DO AS MY GASTROENTROLIST SUGGESTED AND TAKE ENTOCORT, I TOOK THE FULL DOSE FOR THE RECOMMENDED TIME, ALAS, I HAVE SERIOUS SIDE EFFECTS, LOST ALL MY LEG STRENGTH, NEARLY ALL MY LOVELY HAIR, I COULD GO ON, SO I HAVE BEEN AWAY FROM THE STEROID NOW FOR 6 MONTHS ABOUT. HAIR GROWING BACK NICELY, LEGS REGAINING THEIR STRENGTH, TODAY I WENT FOR A CHECK UP (I HAVE A YEARLY MEDICAL) AND AM I PLEASED, PASSED WITH FLYING COLOURS EVEN BEEN TAKEN OFF TWO OF MY MEDS, THIS WAS DUE TO A HEART ATTCK A FEW YEARS BACK, I FEEL BETTER AND BETTER.
I NOW TAKE FOUR OR FIVE IMODIUM A DAY, IF I AM GOING OUT I DROP IT TO TWO OR THREE. I HAVE HAD HIS MC FOR OVER 20 YEARS, I NEVER WANT TO POO MYSELF (HAS HAPPENED) I DO HOPE I HAVE GIVEN YOU THE RIGHT LOWDOWN, TAKE CARE, BEWARE OF ENTOCORT, THATS ALL I CAN ADVISE..KIND REGARDS MARIE

[tex]

Anna,

If Claritin is your only option (other than Entocort), and 1 seems to help but is not enough to control your symptoms, then I would try 2 if I were in that situation. Antihistamines work quickly, so you will know within about 24 hours if it's going to help. If it doesn't help, then it is probably time to consider a regimen of Entocort. Unless you have serious side effects from it (like Marie), it will at least give your body (and your brain) a break from the symptoms for a while.

And there is a chance that as long as you maintain a good, safe diet, the next time you wean off the Entocort you may be able to remain in stable remission because your diet should be more refined by now.

Some of us react for years before finally finding a solution, but we are all different, and some of us deteriorate faster than others. In general, IMO it's always best to do whatever we feel is necessary in order to get the D under control as quickly as possible. Just the stress of relentless D is enough to prevent some of us from achieving remission.

It's probably OK to eat well-cooked apple and blueberries, but they should be peeled (it may be difficult to peel blueberries, but at least the apple should be peeled), and cooked almost to mush, to make them easier to digest. You might need to limit quantities, because while apples contain both fructose and sorbitol, research indicates that fructose is the biggest problem when test subjects develop digestive distress after ingesting apple juice.

Tex

[annaewa56]

Yes, thank you. I will postpone Entocort for another week.
Will try Claritin twice daily.

Has anyone tried Walgreens Wal-Finate Allergy Relief Tablets?

This morning no D!!!
I am so excited. Maybe I need to give the antihistamines another week!

[tex]

That's encouraging news, to say the least.

Tex

[Gabes-Apg]

Woo hoo! great news that there is already improvement!
we love progress!! and if it can help enough that you dont need the steroids that is fantastic

I slow boil the bone broth for about 3 hours. I use split lamb shanks and chicken drumsticks.
I make about 10 litres which is about 4-5 weeks worth. over time the containers i have used for bone broth do stay oily so these are now the dedicated containers just for the bone broth
I only use himalyan salt when making the bone broth. Keep it plain as possible for times that I might need bland meals.
for the last 4.75 years I always make sure I have good supply of bone broth and individual portions of chook mince or veal mince in the freezer, for any time that should i be unwell, or unable to get the shops that i have enough basics to keep me going for a week.

Hope the improvements and wellness keep happening

[annaewa56]

Thank you guys. You are great. Your support is so helpful and I finally figured out how to post and get notifications of replies on my iphone.
Will see what happens tomorrow.
Happy to be able to postpone Entocort.

I am taking a generic antihistamine called AllerClear twice a day.
It is loratadine, 10 mg.; I guess it is a generic version of Claritin.

[annaewa56]

My Colitis flair up seems to be calming down with the OTC antihistamines but my thyroid is acting up.

This whole week I have horrible insomnia, inward trembling, heart palpitations, anxiety. I sleep only 4 hrs a night from 5 am to 9:00 am.
I have lost eight pounds during the four weeks of D.

Do many of you suffer a severe weight loss during the flair up? I wonder if it is also related to overactive thyroid. None of my doctors are interested in monitoring my thyroid. They send me home and want to retest the thyroid in four months. Should I order my own blood thyroid panel in one of those online labs? I am thinking of doing that next week.

My gastroenterologist who is the head of the department at one of Chicago's largest hospitals tried to tell me on Friday that my weight loss has nothing to do with D but all to do with my too restrictive diet. He implied that I am the cause of the weight loss due to avoidance of many immune triggering foods. He told me not to believe in the Enterolab testing results and to only avoid gluten and soy.

He made me furious! He said that there are no malabsorption issues with MC because the nutrient absorption takes place in the small intestine. Didn't want to do any blood test. The only thing he recommends is colonoscopy.


I am still putting off taking Entocort since BM is improving and would like to hear from those of you who have thyroid issues as well if this steroid will help with the calming down the thyroid. The doctor wants me to take 9 mg for a month and contact him for the next step instructions.

I would love to expend my food options and also wonder what symptoms people have when they add a food they have been avoiding for 6 months. I would like to try an egg. Is it diarrhea, headaches? What are the reactions? If there is no visible reaction is it ok to eat that food in moderation?

I have added GF bread, rice, potatoes to my diet; all in an effort to gain some weight. I am painfully thin now; 118 lbs, 5'7"
Still taking antihistamine pills but stopped avoiding high histamine foods. Do people not eat high histamine foods in addition to taking antihistamines?

Your helpful advise is desperately needed. Thank you.

[Gabes-Apg]

I would wait as long as possible before adding any new foods,

Like when you break a bone, it takes at least 8 weeks for the body to heal. With our gut, and if you have had longish period of symptoms it can take longer for some quality healing to happen.

Let the body adjust to all the recent changes. Give it some time.

I will let others more wise on thyroid issues comment.

Of note, gut inflammation/leaky gut leads to adrenal fatigue which affects the thyroid..
Following the diet, lifestyle requirements for long period of time to let the gut heal, will help your whole body.

[tex]

This whole week I have horrible insomnia, inward trembling, heart palpitations, anxiety. I sleep only 4 hrs a night from 5 am to 9:00 am.
I have lost eight pounds during the four weeks of D.

All of those symptoms can be caused by an overactive thyroid, including the D.

Doctors who try to put the blame on the patient usually don't know what they are doing, and when their treatment recommendations don't work, they blame the patient in order to save face. It's a shame that your doctors are so incompetent. That's really frustrating.

I am still putting off taking Entocort since BM is improving and would like to hear from those of you who have thyroid issues as well if this steroid will help with the calming down the thyroid. The doctor wants me to take 9 mg for a month and contact him for the next step instructions.

Corticosteroids are claimed to lower the TSH, but I'm not sure whether they actually lower the TSH, or simply lower the results of a TSH test. If they actually lower the TSH, then that should reduce the production of thyroid hormone, and that should reduce your symptoms.

I would love to expend my food options and also wonder what symptoms people have when they add a food they have been avoiding for 6 months. I would like to try an egg. Is it diarrhea, headaches? What are the reactions? If there is no visible reaction is it ok to eat that food in moderation?

Why did you stop eating eggs in the first place? If it was because of an EnteroLab test result, then it may be too soon to reintroduce eggs, as Gabes mentioned. If you stopped eating eggs for another reason, it's possible you might be able to tolerate them, but if you still have D, it would be difficult to tell the difference.

Do people not eat high histamine foods in addition to taking antihistamines?

Yes. At least they try to reduce their intake of high histamine foods so that they don't overdo them on any given day.

Your thyroid seems to be your main problem. You need to find a doctor who will diagnose and treat your hyperthyroidism.

Tex

[megamoxie]

I no longer have D on a regular basis. When I have a flare-up, I take Imodium and once it takes effect (30-60 min), it plugs me up completely for a few days.

I am also afraid to eat much. I follow a restricted diet of known safe foods pending Enterolab results, and I have been losing weight every week since this whole thing began with months of D for me. During the worst of the D and while on the 6-food elimination diet, I lost 15 pounds in 2 weeks. I needed to lose some weight, but I am now within the normal weight range for my height (5'8") and I have about 15 pounds to go before I'd be underweight. I am still losing 2-4 pounds a week over the last 4-5 weeks with 2 episodes of D, that lasted less than 24 hours each with Imodium. I lost more during the weeks with the D (probably double), but when I have a flare-up, I eat very little. So, I think the weight loss could be a result of both the D and the diet.

I also drink herbal teas. Since I am first generation in US born of British parents, it was very hard for me to give up my tea! I enjoy both ginger tea and chamomile tea on a regular basis. Sometimes I even drink plain hot water. I consume these herbal teas even when I have D, as long as it appeals to me. If something doesn't appeal to me, I don't ingest it. I have had bad reactions to both echinacea and goldenseal in the past, so I won't take those (but I have bad reactions to most medications, also). I also don't drink peppermint tea because I have heartburn, and peppermint makes it worse.

I have taken Zantac for heartburn since long before I received the MC diagnosis, and none of my doctors have even suggested that I should no longer take it. I cannot take PPIs, I react to all of them. I would eventually like to stop taking all regular medications. What alternative is recommended for heartburn when you also have MC?