Lotronex, Entocort

[Magyar]

Hi,

I'm still following a super strict, Paleo diet (minus fruit and nuts). However, my D continues unabated.

Does anyone here have experience with Lotronex? It sounds relatively safe as long as you don't get overly constipated.

I tried Entocort about three years ago. Despite its exorbitant cost, it did not help me after the first two weeks.

Has anyone found that Entocort helped once you gave it a second try?

I really want to attend my college reunion but the chronic D and stomach pain will make the five-hour drive and various festivities extremely unpleasant.

My GI doc is pretty good about prescribing me whatever I ask for. So, I want to approach him about giving one of these a try.

Thanks,
Magyar

[cludwig]

Hi Magyar,

I am sorry...I haven't tried Lotronex so I have no experience. I may have missed this in the past, but I don't recall your history. If you don't mind a small catch-up...like when you were dx and what you think the trigger was...if you are celiac and so on. Also ...do you have the same D patterns....watery...does it come at specific intervals or is it like mine...only am D?? Have you ever had your stool checked for anything infectious? Do you feel ill in addition to the D?

This is just my opinion but when I see someone young get this I think there is usually a specific trigger. I am wondering if you suspect something is causing someone as young as you are to be suffering with this.

In the mean time I do think eating paleo is going to help. Have you considered doing the diet and entocort at the same time?

We are all thinking about you and hoping things turn around soon for you.

Love,
Cristi

[Pat]

I took Lotronex in 2000 when it first came out. I was afraid of it and didn't take enough at first but when I finally started taking the proper amount it worked! Then they took it off the market for two years. I was still afraid of it so I waited for more 2 years ( I was only diagnosed with IBS at that time) and I tried it again going directly to the dose I had previously had success with. No Luck second time around. I took the maximum dose and no luck. Then I changed docs ( the old one retired) and was given the diagnoses of MC. The Entocort didn't work either and neither has Neomycin or Prednisone. Now I have a new doc, the other one referred me to this one and he is trying to get my old labs and try to help me. Hopefully he will come up with something soon. He did tell me to take VSL #3 and it has helped some. Not as watery! Good Luck!
Pat

[Magyar]

Hi,

I was diagnosed with lymphocytic colitis in 2000 as well as celiac disease. I did great on a GF diet plus Asacol for two years. I went off the Asacol. A few months later I took antibiotics for ringworm and the lymphocytic colitis came back with a vengance.

I have tested negative for dairy and egg sensitivity but I will avoid those. A stool analysis showed that I have no lactobacillius and too much of the non-pathogenic bacteria. I also tested positive for adrenal fatigue. I tested negative for Candida via a blood test.

I'm taking probiotics, Cortef, fish oil, L-glutamine, zinc, folic acid, Candibactin (for bad bacteria), Kaprex AI (for immune health), vit. D, Pantothenic Acid (natural anti-inflammatory). Just today I decided to try Natren Healthy Trinity. It's supposed to be a really good probiotic.

Anyway, my doc refused to give me a scrip for Lotronex, but he is sending me one for Entocort.

Pat, I'm sorry to hear you are still searching for an answer. It's such a frustrating proccess.

Thanks,
Magyar

[Magyar]

Oops. Forgot to answer the other questions.

I have D, sometimes more watery than other times, but always D multiple times a day. Usually five times a day. My other symptoms are a gurgling stomach, stomach pain and fatigue.

I think stress and the antibiotics may have triggered my symptoms. I've tried Asacol and Colazal since, but they've never worked again.

I'm 32, so I don't know if that qualifies as "young."

I know coffee is trouble for me, so I am trying hard to avoid it. It's hard to subsist on meat and cooked spinach for weeks on end without coffee to serve as a treat. I guess there are no treats on this diet.

Thanks again,
Magyar

[cludwig]

Hi Magyar,

I had the same kind of stool profile as you a year ago. I just took another one a few weeks ago and will get the results this week. On my stool profile they tested the bad bacteria against antibiotics and natural antimicrobials and the natural one that came up was caprylic acid pills. These are usually made from coconuts and this fights a lot of bad bacteria and yeast...two for one! I had success with that and the diflucan last year. Now I am taking two garlic pills a day for the yeast and I just added an enteric coated peppermint oil with rosemary and thyme (antimicrobials) and I am now fluctuating...some days normal bm and some days soft formed ...but usually just once a day. Six weeks ago I was having multiple very soft BMs.

Your diet is very restrictive and would be difficult to stick to for very long. Neither the book I read on controling yeast or the SCD is as restrictive as you are doing. The SCD allows some starchy vegetables ...just be careful with the portions. The same is true for the yeast diet that I am following....small portions of starchy veggies such as sweet potato or acorn squash. The yeast diet that I follow allows small portions of brown rice or quinoa. It just makes the diet a little easier to follow for a longer period of time.

My situation is different from yours in that I am not a celiac...my complicating factor ( I believe ) is my endocrine system. Perhaps some of the celiacs here would have better diet advice for you than me.

Also...fresh herbs are a great way to boost and change the flavor of the meals you are eating.

Love,
Cristi

[tex]

Magyar,

Lotronex can only be prescribed by specially trained medical professionals - IOW, only doctors who have enrllled in a special "Prescribing Program" offered by GlaxoSmithKline, should prescribe it, due to it's history of causing ischemic colitis in certain patients. Here's a website for medical professionals, that explains the situation:

http://www.lotronex.com/pharmacists/safety_info.html

Have you tried the old standby OTC remedy that many here have used with good results while traveling, loperamide, (Imodium)?

Tex

[Pat]

Magyar,
I also meant to tell you Lotronex is very expensive too, just like Entocort.

How many bacteria are in your probiotic? The VSL#3 has 225 billion live lactic acid bacteria per serving which is 2 caps per day. It says on the bottle to take 2 - 8 per day.

What I have decided is that this MC is caused by more than one thing. And it might be different for each of us. We just get the same or similar symptoms.
Pat

[Matthew]

Magyar

I noticed that you are eating meat and spinach.

Their was quite a discussion years ago on the old board about spinach. The crux of the discussion was that research showed that it contained acids that might be disruptive for anyone as many at the time felt it was a problem. Don’t remember the name of the acid but others might find links.

For me it was not a good idea. Far better choices when i first started were butternut squash, well cooked carrots , well cooked green beans , or well cooked zucchini.

Later I quit eating the green beans in that they are lectins and it made a sudden and vast improvement.

If you try the zucchini buy the smallest ones you can find. Less than six inches. In that they have not developed seeds that might be hard to digest.

The first year of my recovery was really a lesson in paying careful attention to my reactions and honing my intuition . If I was still having D every day then I was eating something that was not right for me. So I moved on to something else and watched for a reaction. Slowly honing intuition , slowly getting results.

The best thing I ever did was eliminate all grains high carb foods and the really dark green vegetables.

The blessing of having gotten in touch with myself is that I can now eat many of those things that were a problem years ago.

Don’t give up on exercise. Oxygen is needed for every function of the body and is a great way to moderate the immune system. Walking every day when I was at my worst gave me a sense of well being. I feel that it was an important part of my recovery to do some kind of aerobic exercise every day .

To your recovery

Matthew

[tex]

Matthew,

You've got a good memory - I had forgotten about that. I'm pretty sure that you're referring to oxalic acid. It also inhibits the absorption of calcium and iron, by the body. I rarely eat it, since reading about that.

http://www.answers.com/topic/oxalic-acid

Tex

[Matthew]

Tex

Thanks.

That was exactly what I was referring to.

Yes, I have experimented and it still does not work for me. :-)

It has been a while since the last discussion. Thanks for the reminder.

Matthew

[Magyar]

Hi,

Thanks for the input. Since my current diet is extremely low-carb, cooked spinach and green beans are among my few options for non-meat foods. I will try cutting back on the spinach and green beans and substitute asparagus and zucchini instead. Nothing is breaking down anyway and I'm having to get up in the middle of the night for the D. I always seem to do worse on these low-carb diets, but I'll keep plugging away. If I'm still not better next week, I'll try adding squash. I would welcome the change!
i found an interesting article:

http://www.mercola.com/2003/sep/13/infl ... isease.htm

By the way, it would be really helpful to read a summary of the diet each of you used to get well.

Thanks,
Magyar

[tex]

Magyar,

Here's the diet I used for roughly three years, while my gut was healing. At the time, I was intolerant of gluten, dairy, (including casein), corn, peanuts, almonds, most fruits, including bananas, and many vegetables, (especially lettuce). All sugars except for maple sugar, bothered me, in anything more than trace amounts - even honey was a problem. Beef caused some symptoms, such as bloating, body aches and pains, and headaches, but not D.

Eggs, either hard-boiled or poached

Pork, including pork sausage

Chicken

Potatoes

Rice, only occasionally, except that I ate the chocolate chip cookies several times a day

For treats, I ate a lot of chocolate chip cookies, (made with rice flour), and occasionally pure maple sugar candy. Also, I sometimes made smoothies, using half a frozen banana, frozen strawberries and blueberries, either apple cider or coconut milk, and a few pieces of maple sugar candy, to add sweetness. I had to be careful not to overdo the bananas, though.

I suspect that I'm a celiac, and I also suspect that I may have had a SIBO problem at the time, which might have caused so many foods to be a problem for me. Now that my gut is healed, I can eat pretty much anything I want, other than gluten or avenin, without any problems.

Tex

[Pat]

Magyar,
I take immodium and it helps me get by. I have tried Lomotil and it helps too, but is prescription. I get the immodium at Costco and it is much much cheaper. It is callled Anti-Diarrheal (Loperamide hydrocloride 2 mg)My GI doc said to take as much as I need to help me, just don't get constipated. I am taking 6 -7 daily and I am not constipated. Make sure you are drinking plenty of water so you won't get dehydrated.
Pat

[bobh]

Has anyone found that Entocort helped once you gave it a second try?

Yeah, it worked for me a 2nd time. I had "D from hell" for a decade, with a severe 6 month flair that was HALTED with a stiff dose of Prednisone and followed by Entocort, 2 to 3 a day as needed. Worked so well that I went off it after about 3 months.

then got a bad flu in February, and the "D" came with the illness, and stayed. I began 3 entocort a day and it was gone within 48 hours. My Dr used to say to remain on Entocort until there was no inflammation for 3 months, but when I saw him last Tuesday he said it wasn't that big of a deal, and he has seen people go on and off it without a problem. I don't think you build immunity to it or anything. He also said you can take more than 3, and I think the prescribing instructions allow considerably more. I would play with that to get formed stools.

Entocort really fixed me, even with the "D" episode between doses I was having dry farts, so it didn't get that out of control.

I wish it wasn't so expensive, I have no insurance. But it works, and it is hard to remain employed without a solution.