So frustrated, I just want to scream.

[MulkeyJ]

I do have some insurance, I'm on Medicare too, but my Part D will only pay a certain amount of prescriptions and at two months of Entecort, I'm close to the donut hole, as I also have other meds I take. I tried Lialda and it didn't do anything for me. Granted, I didn't give it much time, but it didn't even slow the D down when I took it. I have gone off of PPI's completely. I do occasionally still have to take a Pepsid AC or Zantac, as I continue to have some serious acid, which makes me sick to the point of vomiting. The thing I have wondered about, but cannot stop taking, is Arimidex. I had breast cancer, and it was estrogen positive. So I have to take Arimidex for five years, I'm on the third year, with ony two to go after October. This constant D started in December after I had been taking the Arimidex from October, so I don't know if they are related or not. But I can't stop taking it, as my breast cancer was 99% ER positive.

I dont' think anything else I take has anything that would cause continuing problems. I'll check with my doctor about Lomotil (sp?), instead of Imodium.

Thanks to you all for the responses and encouragement. I'm just so danged mad that this thing has basically taken away what little life I had left after cancer and it's treatment (went through chemo as I had nodes positive). And it's depressing. Basically, I don't smoke, don't drink, don't live a crazy life, stay at home all the time, and I love food and love to cook, and now that's gone too. Depressing.

[JLH]

I am so sorry that you are going through so much. Arimidex is also chemo, just a different form. I was offered it after Tamoxifen but declined. (I went off Tamoxifen 6 months early.) Arimidex came out years after my surgery.

I had a lumpectomy. I did not have any node involvement.

What I am supposed to have now is BSGI, Breast Specific Gamma Imaging.

Imodium AD Caplets, Advanced Chewable Tablets are in the 2008/2009 Gluten/Casein/ Soy Grocery Shopping Guide by Cecelia's Marketplace.

Keep with the diet and you will see results even though you don't believe it now. I did diet alone, no Entocort or Lialda etc. As Tex says, "You can get your life back." It will not be overnight, although I had a really fast time when I eliminated just gluten, I had been dairy free for decades. After a month or two, though, my symptoms came back. I suspected soy because of the experiences of the PP. EnteroLab confirmed it.

[JLH]

http://www.ceceliasmarketplace.com/

PP who have these books, be certain to check out the ALERTS and cross out the products from your books.

[Gabes-Apg]

maybe the Armidex could be exacerbating the MC - Tex or Polly are the knowledgeable ones on drugs and may be able to help.

it is depressing and overwhelming and at first it does feel like it has taken your life away, but all MC has done is taken away life as you knew it then, the challenge is to adapt to life now, you have got through the cancer, you can get through this.

there are some amazing, caring, knowledgeable people here that can help you. it is day by day.

[Linda in BC]

Hello Mulkay;

Sorry to hear you are having such a bad time still. I don't have a drug plan either and even though I am in Canada, still cannot afford the Entocort. So I tried a couple of different ways to get better. First, I took the amino acid L-Glutamine that Tex talked about. I did notice an improvement in my symptoms with it, although at that time I had not gotten my Enterolab results back and was still eating wheat, corn and soy sporadically. But still, it slowed things down a bit. Then I started taking a drug called Low Dose Naltrexone, or LDN (had to stop the L-Glutamine when I started the LDN) . It does not cost anywhere near as much as Entocort. LDN costs about $45.00 a month, plus shipping here in Canada. It has to made up by a pharmacy in smaller doses than it is pre- packaged at, for the "low dose" treatment, and only certain pharmacies do this. I used on in Toronto. It works via increasing your serotonin levels. I find that much of my problem is stress related, and when I started the LDN at 1.50 mg per night, I immediately saw a difference. Big time. It slowed everything down to one to three BM's per day, in the am, instead of 10 - 15 all day long. I still had D for those , but as I said in one of my posts, "This I can live with". If I eat only chicken and rice and eggs, I am pretty much fine. I have discovered that I have multiple intolerances and have ascertained that for sure, Corn, Casein, buckwheat, potatoe, and tapioca are all no-no's for me, and I also strongly suspect that, my calcium and magnesium pills (which I have always taken at night) are causing me to continue to have D in the am. do you take these supplements? Maybe try stopping for acouple of days and see if there is improvemnt. I am still trying to figure out my other intolerances, and fine tune my diet. So I am not in remission, but I am MUCH, MUCH better.
If you are interested in learning more about LDN, please send me a private message and I will send you more information. Or you can read my reports on this site (trying doing search for LDN... be sure you use the site search engine, not the google bar.)

Or you could do your own research on the web about it, which is what I did, although most of the information is about using it for MS ( Multiple Sclerosis), and there is virtually none for Colitis. There is a website called www.lowdosenaltrexone.org/, and another called www.ldnscience.org/ which have info you can take to your doctor. Most doctors are not familiar with the drug being used in low doses for auto-immune related illnesses so it can be challenging to get them to agree to give you a prescription. I was fortunate that my doctor was willing to let me give it a try. You can also get it from pharmacies abroad (like from India, sent via the US) at a much , much lower cost and without a prescription. You have to dissolve the 50 mg tablets in 50 ml of distilled water and then take your dose in liquid form. This how I am taking it now. For me it has made a world of difference in my life.. I am not chained to the bathroom anymore. I can leave the house and not have to know where the next bathroom is. It is not a cure but, along with the diet changes, it has made the disease bearable.

Don't give up hope yet, nor give up on the diet... there are a few other ways out there that you can try. What works for some does not work for others, but there is a wealth of knowlege on this site and surely someone will suggest something that will work for you.

Best regards, Linda

[JLH]

http://www.perskyfarms.com/phpBB2/viewt ... sium+spray

I started using it, too, so I wouldn't have to experiment with pills causing D.

I don't know if it is the magnesium oil or not but I've noticed a little fuzzy hairs at my temples. I wish it were all over, though.

[tex]

Mulkay,

I don't know if Arimidex is affecting your MC symptoms, but it can have a lot of side effects of it's own, that are very similar to some of the symptoms of MC, so it's certainly possible that these could be causing some of your discomfort:

What side effects can this medication cause?

Anastrozole may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

weakness
headache
hot flashes
sweating
stomach pain
nausea
vomiting
loss of appetite
constipation
diarrhea
heartburn
weight gain
joint, bone, or muscle pain
breast pain
mood changes
depression
difficulty falling asleep or staying asleep
nervousness
dizziness
vaginal bleeding
vaginal dryness or irritation
pain, burning, or tingling in the hands or feet
dry mouth
hair thinning

Some side effects can be serious. If you experience any of these symptoms, call your doctor immediately:

chest pain
sore throat, cough, fever, chills, swollen glands, or other signs of infection
swelling, redness, or warmth in hand or arm
difficult, painful, or urgent urination
blurred vision or vision changes
yellowing of the skin or eyes
pain in the upper right part of the stomach
skin lesions, ulcers, or blisters
rash
hives
itching
shortness of breath
difficulty swallowing or breathing
swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs

From:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000982

Even if it is causing you to have D, though, the diet might help to minimize the symptoms. The good news is that those symptoms seem to go away after the drug treatment is discontinued, so at least it doesn't seem to cause permanent problems.

A google search turned up this thread from our archives, where another member mentions that she is/was taking Arimidex, (post number 12 by Jeanie, in the following thread), but she doesn't say much about it.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10548

Tex

[Bifcus16]

Mulkey wrote :

I love food and love to cook, and now that's gone too. Depressing

I found it an interesting challenge to find recipes within the bad day diet restrictions. Some of my favourites:

Black glutinous (sticky) rice. Boiled to a porridge with palm or brown sugar. Serve with lightly salted coconut cream. The rice is available cheaply at asian grocers. The coconut cream is optional of course, but a tiny bit makes the world of difference. It is also often served with custard - which can be made from any form of non dairy milk.

Home made stock.

Then use that stock to turn into interesting soups. Try italian style straciatella (sp) with eggs beaten in (skip the cheese). Or simple pureed vegetable soups if you are up to that.

Cook rice in stock and turn it into congee (overcook white rice in stock, then serve with some poached chicken (or an egg) and a drizzle of sesame oil or maybe a tasty olive oil). Add some spices to the stock to give a different flavour - a cinnamon stick, aniseed star, or go the italian style herbs.

Puffed Quinoa pancakes. 1 cup puffed Quinoa (puffed rice would probably work) with one beaten egg, add flavouring (sugar and cocoa powder or cinnamon, or salt and some savoury herbs) and cook like pancakes.

Potato cakes.

Perfect the plain omelet and poached egg.

Caramelised banana.

Obviously, eggs aren't a problem for me. You will probably come up with a bunch of much more interesting things to suit your taste and what your gut can handle without making you worse.

Dee's kitchen has lots of recipes - have a look for some you think you might want to try. google for things like the black rice recipes.

Your range of ingredients may be limited, but that doesn't mean you can't experiment.


Lyn

[Gabes-Apg]

now that i have got over the initial barrier of MC and the changes in my life, i have started (Thanks to the plenthry of info in dee's kitchen) to convert my existing receipes to suit my current intolerances.

i think there is somethng about MC and your tastebuds, it seems my tastebuds have changed or have been reprogrammed

[harma]

MulkeyJ, have you tried mesalamine, one of the 5-ASA drugs. A recent study shows that this can work for MC patients too. Results up to 85 and 91% is quite promising and results in about two weeks. The part below comes from this link: http://www.medscape.com/viewarticle/717156_2.

----
Uncontrolled retrospective series have suggested symptomatic improvement in up to 50% of patients with MC treated with mesalamine (5-ASA).[24, 29, 48] A recent randomised trial of 64 MC patients compared mesalamine (800 mg tid) to mesalamine (800 mg tid) and cholestyramine (4 g/day).[49] Treatment resulted in resolution of diarrhoea in 84% overall after 2 weeks. If treatment was continued over 6 months, clinical and histological remission was achieved in 85% of those with lymphocytic and 91% of those with collagenous colitis. The number of relapsing patients after 6 months of treatment was low, and symptomatic relapses could be successfully retreated. Overall, the combination of mesalamine with cholestyramine was slightly superior.[48]
----

Also in the MC lecture (http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12067) mesalamine is mentioned as an alternative or a second choice drugs for MC patients who can't afford Entocort. I have no idea what mesalamine costs and if there are generic versions on the market. But maybe it is worth to do some research on it and if affordable ask your GI or PCP to prescribe you this drugs.

[MulkeyJ]

I haven't tried anything but Entecort and Lialda. Truly, my gastro told me if neither of these worked, there was very little else he could do for me. He truly told me I would have to just 'live with it' and try to get some help from Immodium. My regular doc prescribed Lomotil for me yesterday after I called and told them how many weeks I've had the big D. He said if the Lomotil doesn't help he wants to see me. I'm losing weight without trying at all, after years of trying. It's becuase of the D I know. But I've lost 10 pounds in just a few weeks, and I'm taking in alot of water, because I dont' want to deal with dehydration, but I know I'm dehydrated, because I'm exhausted. When I say Immodium, I mean Immodium Advanced. Finally this morning after days on Immodium, I'm not just all water. I slept until noon, something I haven't done since I was a teenager, and that's been 40 some years ago. So now I'm worrying about why I'm sleeping so much. Geesh..it's a never ending circle...

Thank you so much all of you for your posts and your encouragement. This disease is very hard to live with and when in the world are they going to find a cure for it? Surely, with all of the allergy things they have out there for allergies to this and that, they can find out how to counteract allergies to food? I just don't get why they aren't there yet? Good grief, they are right on the cusp for a cure for cancer and they can't find out exactly what's causing the MC? That just doesn't make sense to me :(

[harma]

But still wouldn't is be an idea to print out the article or try to find the summery of the mesalamine MC trial, take it to your GI and ask him for a prescription and try it out exactly the same way as done in the trail. It seems like your GI knowledge on MC is not up to date, which is quite normal. Self management please a key role in dealing with this disease, not only when it comes to diet, but also for medications. It is besides pepto bismuth and entocort the only medication that has been tested on groups of MC patients. Really give it a try. The life you are living now is terrible. Losing weight, and d, d and explosive d. I have to admit I find it not easy to read your message, you living in a first world very rich country, suffering so much from this horrible disease, while there is a very simple cure. Have you actually tried out pepto bismuth (maybe I write it wrong). As far as I know it is an over the counter medicine in the US, so easy to get. Why don't you give that first a try. You have nothing to loose only to gain.

And of course there is also still the possibility of ordering the Generic version of entocort on line. I think, if you need the full dose, the costs are something like a 100 to 120 dollar a month. If have you considered that option? There are other members here that use this generic version.

I hope you will find the energy and try them out, so your life will improve.

good luck with it

[MulkeyJ]

Pepto Bismol actually made my D worse. So no more of that for me. I've tried it about three times and every time I get extreme gas, and explosive D.

I'll ask my regular doc about that article, who at this point I think is more willing to work with me...I think my gastro has kind of written me off because he doesn't know what to do with me.

Also, we live from month to month, so $100 to $120 is out of the question. I'm lucky if we get to the end of the month and have something for the husband to eat, let alone for me.

[harma]

I am so sorry MulkeyJ you have to live under such difficult circumstances at the moment. I hope better times will arrive for you soon.

[tex]

Not everyone can tolerate Pepto-Bismol. That's why Dr. Fine stopped recommending it as the first line of treatment for MC.

Lialda is a brand of mesalamine. I have no idea what the copay with plan D might be for mesalamine, but most of the name brands of that medication are approximately the same price as Entocort, without insurance, which is way too expensive to even consider.

For the record, the cost of a full one-month supply of generic Entocort EC, [90 capsules], is $40.50, plus shipping), from this overseas supplier. The product is called Budez CR 3mg:

https://www.alldaychemist.com/1283_Entocort-EC

Several members use that product. I have no idea how much shipping costs, but I'm sure that it's not cheap, since they're located in Cyprus.

The price of name-brand Entocort EC, from foreign-based, online pharmacies, is about $175.00, for 90 capsules, (plus shipping), which is still too expensive, for many people. The generic, mentioned above, is the only practical option.

Tex