Immodium

annaewa56 · Post by **annaewa56** » Mon Sep 29, 2014 12:46 pm

HI,

I am experiencing another flair up. The previous one started in December and I had unstoppable D for 2 monts.
Ended up in emergency room and had to have many IVs.

I finished Entocort in June.

For the first time I am trying Immodium. I find that it helps with stopping D but also stop all BM.
The package I used over two days said it was ok to use it for only 2 days.

Could you share your experience with this drug in slowing down the motility and how long can it be safely used?

What other advice do you have for what to eat while D is active? I am already on a very restricted diet of some meats (lamb, turkey) and fish and vegetables except nightshades. I am not drinking any coffee or tea except herbal. No alcohol, no grains, no nuts, no legumes, no milk, no soy, no eggs and no chicken.

I am getting so depressed about this disease and my diet six months post eating a very clean diet eliminating all immune triggering foods.

Please share how you are coping with the diet and the drugs and depression.

My gastroenterologist wants me to start using Entocort, 1 pill a day, Zantac 150 mg twice a day and Zyrtec 10 mg at night.
I am afraid of all these drugs. Do any of you have experience with taking all three together?

Thank you.

maestraz · Post by **maestraz** » Mon Sep 29, 2014 5:03 pm

Hello,
I cannot take Immodium more than a couple times a week. I'm not crazy about how it makes me feel, but sometimes it adds a layer of security when I am going to be traveling or in situations with limited bathroom access. In general, I no longer take it routinely.

I have been taking Wellbutrin since my diagnosis. I had previously taken Celexa, but SSRI drugs seem to be a problem for us.

I used Entocort, Zantac and Zyrtec all with no problems (though I did not use them all at once). But I find that Claritin and Allegra work better for me.

Hang in there. It took about a year for me to start feeling like myself again, and to feel like I had settled into the dietary routine. This disease teaches patience, if nothing else.

Try to not get too discouraged. People here will help you figure everything out.

Leah · Post by **Leah** » Mon Sep 29, 2014 5:05 pm

So sorry you are feeling so horrible. This disease sucks.

I took Entocort for 6 months ( slowly lowering the dose) and it worked great for me. Everyone is different. I don't know if one pill is enough to stop a flare. The usual dose is 3 pills ( 9mg.)

After I was OFF the Entocort, and my BMs were still soft ( but only once a day), I decided to try an antihistamine ( like Zyrtec, but I take Allegra). It worked like a charm. Solid BM day after day. I now take an Allegra in the am and a Benadryl in the pm.

As for the Zantac, that is an h-2 antihistamine, but also an acid reducer. I wouldn't take it every day ( because we need our stomach acid to break down our food), but I do have it on hand and take it occasionally when I know i am going to a party or drinking alcohol. It does help.

I hope that helps. good luck
Leah

Post by **tex** » Mon Sep 29, 2014 9:53 pm

I'm sorry to hear that you're having another flare. Imodium is safe to take on a long-term basis, if you want, but if you take too much it will cause constipation. It does nothing however, to stop the inflammation. It's best to take the minimum amount that will do the job, if you choose to use it.

As Suze and Leah mentioned, for many of us, OTC antihistamines seem to work just as well as Entocort. They will reduce the inflammation, because they prevent histamine from promoting inflammation. I'm not a doctor, but in my opinion, if you take an antihistamine that helps, there is probably little point in taking Entocort. As Leah pointed out, Zyrtec, Allegra, and Claritin are safer than Zantac, as far as MC is concerned.

Be sure that your vitamin D level is well up in the normal range. If it isn't, you should be taking a vitamin D supplement. It will help to suppress inflammation in the long run.

Relaxation techniques will help also, because stress promotes inflammation, and unfortunately it's a major cause of MC.

Tex

annaewa56 · Post by **annaewa56** » Tue Sep 30, 2014 4:46 pm

Thank you for your suggestions.

I started taking Claritin because we have it on hand. My husband takes it regularly. I also bought Zyrtec which was recommended by my doctor and I will test that tomorrow. I will take one to see how it makes me feel. Today I feel very fatigued and sleepy all day. It is MC as well as the changing weather. Suddenly it turned cold and dark in Chicago.

Next I will try Leah's protocol. Allegra in the morning and Benadryl at night.

My BM is brown water with undigested food particles but only in the morning.

I am praying I don't have to restart Entocort again.

Want to give it another week before contacting the gastroenterologist who will insist on colonoscopy and will put me on Entocort again. I don't like the idea of taking Zantac.

Have any of you had colonoscopy during a flair up?

Thanks again to all who replied to my post.

Gabes-Apg · Post by **Gabes-Apg** » Tue Sep 30, 2014 4:55 pm

I would give the anti-histamines a few weeks to work and reduce the inflammation to get a good indicator if this is actually the issue before contacting the GI

and as Tex has mentioned above are you taking a Vit D3 supplement, it will help reduce inflammation, increase energy and reduce depression.
most here take 3000-5000iu per day. Others with high stress environment /minimal sun take more than this.

hope this helps

Post by **tex** » Tue Sep 30, 2014 5:44 pm

annaewa56 wrote:Have any of you had colonoscopy during a flair up?

Mine was done when I was as sick as a dog. The worst part about it was trying to get rid of the gas that they pump into you during the procedure. They wheel you into a "recovery" room full of people happily passing gas to their heart's content. When you have active MC that usually doesn't work so well. Naturally I couldn't get rid of any of it.

A nurse told me that I just needed to roll over onto my right side. I told her that if I did that I would need a pan in which to vomit. She doubted me, but came up with a pan anyway, and insisted that I roll over. It didn't take but a few minutes to convince her that I wasn't joking.

I finally gave up and went home and was miserable and bloated for a day or 2 until I finally was able to get rid of the gas. Otherwise the procedure itself wasn't too bad — certainly not as bad as the clean out procedure.

But that's another story.

Tex

megamoxie · Post by **megamoxie** » Sun Oct 05, 2014 6:01 pm

I have found that soluble fiber in the form of organic acacia senegal has helped me with the looseness. I mix a half teaspoon in half a cup of organic unsweetened applesauce twice a day. It is supposed to help with both D and C. The theory of how it works with D is that it helps absorb the excess fluid in the intestinal tract without irritating it.

Imodium usually plugs me up completely for days. I keep use of it to a minimum, but it is comforting to have when needed. I have had a couple of occasions when it has not completely or immediately worked, though.

I have also found a BIG difference between soluble fiber vs. insoluble fiber. For me, the latter is an irritant unless I have it with or following safe foods and in small quantities. I don't usually have noticeable irritation with most foods that have soluble fiber.

All that said, I am not a doctor and everyone is different. I'm just sharing what has worked for me so far.

megamoxie · Post by **megamoxie** » Sun Oct 05, 2014 6:06 pm

Oh, and I also had a colonoscopy during a flare - that was how I was diagnosed.

I barely ate for the better part of a week (partly for the prep, and then I was very slow to add back food afterward). I was in such bad shape beforehand, I figured it couldn't make things much worse and it could hopefully give me some answers. It did, and that answer has led to more questions, and to being here on this forum.

annaewa56 · Post by **annaewa56** » Sun Oct 05, 2014 8:43 pm

Thank you for your input on colonoscopy. I had one done in 2007 during a week long stay in the hospital due to two months of D. I was so sick and I have bad memories of all the testing they did. It was the colonoscopy that revealed the diagnosis of Collagenous Colitis. Colonoscopy scares me especially now during flair up so I keep putting it off.

I am taking 8,000 IU of vitamin D as my last test was in low normal range.

Do any of you taking antihistamines experience any side effects? I took Allegra and Benadryl and have had bad headaches. Or maybe it was caused by Zantac which I took only twice and didn't like. Don't like the idea of reducing stomach acid when I know my stomach acid is low. I have been using Betaine HCL to increase the stomach acid. Or are my headache because of MC? They just started. I am almost two weeks into the latest flair up.

Do you find that mint and chamomile teas are safe to drink? I am told not to drink coffee or green or black tea due to the adrenal exhaustion, low cortisol levels all day long.

Post by **tex** » Sun Oct 05, 2014 9:27 pm

Headaches are a listed side effect of Zantac, and apparently they're a somewhat common complaint. Antihistamines in general can cause vasoconstriction, and that can cause a headache. Second and third generation antihistamines seem to be more likely to cause headaches than first generation antihistamines.

However, back when I was reacting, I had frequent headaches and occasional migraines, so they can definitely be associated with MC. If you haven't had headaches with your reactions previously though, that brings either the Zantac or one of the other antihistamines under suspicion.

Vitamin C is a natural antihistamine, if you can tolerate vitamin C. I believe that Betaine HCL has some antihistamine effect, also.

I've never tried those teas, so I can't offer any insight on them, unfortunately.

Tex

annaewa56 · Post by **annaewa56** » Mon Oct 06, 2014 9:27 am

Thank you Tex
as always you are so helpful

Which antihistamine drugs are first generation?
Allegra, Zyrtec, Zantac, Benedryl all give me bad headaches; back of my head, definitely vasoconstriction.
Would Claritin be first generation? I seem to be ok with it.
The good news is that I am starting to see some slight improvement with the BM.

Regarding natural antihistamines:
has anyone tried Gastrocrom (cromolyn sodium) or
DAO enzyme or
Histazyme (helps degrade levels of food derived histamine

I have read that zinc, omega 3 fish oil, vitamins A, C, E, slippery elm and aloe vera may be of help with histamine issues.

There are antihistamine herbs as well such as
nettles
chamomile
basil
parsley
clove
goldenseal

Does anyone have any experience with any of the above?
I know that we have to be very careful with herbs as they can cause flair ups.

Post by **tex** » Mon Oct 06, 2014 11:55 am

Benedryl is a first generation antihistamine, the rest (including Claritin) are second generation antihistamines. H2 antihistamines (such as Zantac aren't rated by generation classes).

A few members have tried cromolyn sodium and or Histamine, but results seem to be inconclusive. No one has reported any huge successes, that I'm aware of.

It's good to hear that you are seeing some improvement. Hopefully that will continue.

You're very welcome,
Tex

annaewa56 · Post by **annaewa56** » Tue Oct 07, 2014 8:59 am

I wonder if Claritin alone will be enough. I am also taking DAO enzyme. And will try low histamine diet.
Today is two weeks since D started.

When people are successful with stopping the flair up with just food, how long does it take? What foods are best to eat during flair ups?
I know about avoiding fiber. I am not eating anything raw (fruit or vegetable) What other suggestions do you have for what to eat during flair up?

thank you for your suggestions and support

Post by **tex** » Tue Oct 07, 2014 9:33 am

For some reason or other, many of us seem to have better results with other antihistamine brands. I use Allegra (the 24-hour version), for example, because Claritin didn't seem to have much affect on a pollen reaction when I tried it.

Unless you start noticing side effects, dosages can usually be increased, if needed. Allergists use up to 4 times the labeled dosage to treat chronic urticaria symptoms, and they do that on a long-term basis, so obviously it's generally considered to be safe. But I wouldn't take more that needed to do the job (that's true of any med, of course).

It typically takes months to reach remission by diet changes alone during the first recovery period. Subsequent flares however, usually don't take near as long to control, but response can depend on stress levels and cross-contamination issues for most of us. Times vary from a few days to a few months, because we all respond differently to treatment, and we all have different patterns of inflammation.

For most of us, eating a bland, simple diet (avoiding processed foods) and hopefully avoiding all of the foods that cause us to react, is the best that we can do. Sometimes doing everything right is not enough to get a prompt response — we just need more time to heal.

You're very welcome. I hope that you see some significant improvement soon.

Tex