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Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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Rose
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Post by Rose »

Jean,

Are they still in Orlando? My in-laws live in Lake City, Fl and my parents are in Vero Beach. It is really hard not seeing family, I know, I miss my mom and dad, brothers (6) and sister.

My In-laws have a camper and the kids love to sleep in that when we visit them instead of sleeping in the house. My dh says that it will be the only way we can travel, like you said personal bathroom, kitchen and sleeping arrangements.

I can't even imagine driving a 32 foot motorhome, but I see the big ones on the road all the time. I think that it would be great for families b/c the kids aren't so confined. We always get "are we in Florida yet?" from my son.

Love,

Rose
Jeanie
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Post by Jeanie »

Rose,
Yes, they live in Winter Springs which is a part of Orlando. Kari went to college in Chicago. She met her husband in Chicago and they got married. After a year, her company opened a branch in Orlando and she applied for it and they moved to Orlando. I just wish they weren't so far away.

I still marvel that I used to drive our 32 foot Winnebago. My husband was having enough problems so that he no longer drove. At least I had him along. Like I told my friends, you only have to drive the front end and the back just comes along! :-) Actually going around corners you could never forget how much room it takes. And backing up our driveway and spotting it between the garage and a tree - look out for that overhang! - now that was tricky! I loved it.

Our kids were sort of young when we bought the first motorhome. My husband said it would be good for them to have more room. My reaction was - now they just have more room to fight in!

Love,
Jean
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Rose
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Post by Rose »

Jean,

At least you had the room to separate them. Mine do very well together. My son is older (11) and the worrier of the two. He won't even go on a field trip unless I pick his sister (turned 8 today) up b/c he is afraid that she will get on the wrong bus (which she actually did last year, but they caught her b/f the bus took off from school). I think that was b/c he kept telling her not to get on the wrong one all week b/f his field trip. Don't get me wrong they fight but more so when they are confined to a car.

I told my dh about your rv's and now he has the bug again. We looked in to renting one, but it is way too expensive.

Love,

Rose
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Post by lwalker »

Hello
I hope this finds you feeling better, yes I agree finding this website was a godsend, and my GI did not know about the site, I informed him in the hope he would recommend the site to other patients diagnosed with MC..........I have been on Entorcort, and have now cut it down to one a day 3mg, and Asacol 1-2 twice a day,,,,my life is better than it has been in months, hang in there the Entocort was the med for me, at least for now,,,,I did go wild and have nacho's with cheese and peppers, well that was not a good thing to do , but sometimes you have to live on the wild side..........I try to stay more low fat, eat 1-2 meals a day, the more I can stick to low fat the better off I am, no gluten allergy here..........Best to you and this is a group of caring people that help me out ........
LW
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Jeanie
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Post by Jeanie »

Hi LW,
I have been busy and not getting on board here lately! I celebrated my birthday last Wednesday by going to a dinner theater. It was a great evening. Then I had to dive into my taxes and I got them done so now I'm trying to catch up on other things.

Tomorrow I see my GP and I'm going to ask him about going on Entocort. I had taken it in the summer of 2006 (before I knew about the MC.) They said I could only take it for a few weeks. It did help but as I recall I gained some weight and it raised my blood sugar. I have Type II Diabetes so have to be careful. I understand there is also a question of bone density. So far my bones are okay but I don't want to jeopardize them. But it would be so wonderful to get some relief from the constant D. I was so happy last Friday when I didn't have the watery stuff and it was actually formed. However, the next day it was right back.

Today I told my chiropractor I was considering going on it but he was quite skeptical. :roll: Does it seem that it would be okay to try it for awhile? It really seems to be the thing to do. My chiropractor is more knowledgable about medicine and supplements and diets than most doctors. However, I don't know how much he is aware of the MC situation as I have other things to consider than his average patient.

Also, I'm wondering what kind of pain pill is okay to take. I have stayed away from Ibuprofin and Aspirin since hearing they were bad for MC. What about Tylenol?

I would appreciate any advice anyone can give me.

Thanks,
Jean
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tex
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Post by tex »

Hi Jean,

A number of members here have been taking Entocort for several years, with no significant ill effects. The point is, once you achieve remission, you can reduce the dose to a level that you can safely use for many years, with little to no effect on your bone density. The malabsorption problem that goes with MC, has a much greater negative impact on bone density, than Entocort, because once the Entocort has allowed you to achieve remission, then you will be much better able to absorb calcium, again, which should allow your bones to get stronger and denser.

Tylenol is the only OTC pain remedy that is safe for someone with MC. Some members say that it is not very effective for them, but some of us, (including myself), find that if we take it with a meal, as soon as the pain begins, (and take enough of it), it is quite effective. I have found that boswellia, (a natural remedy), seems to work for me, but I need to do more experimentation with it, to figure out the optimum dosage, etc.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jeanie
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Post by Jeanie »

Thank you, Tex. I saw my doctor and got the prescription today. I shall start taking it and hope that it goes all right.

I'm sure that the years of constant diarrhea has made it very difficult for my body to assimilate the good out of my food and vitamins that I take.

On Wednesday, my chiropractor checked my blood pressure lying down and then again immediately upon my standing up. He said it should go up when I stand, but mine went down. They checked it twice with the same result. He put me on Adrenal support. I asked my GP today, and he said that is true for people that are not on meds. But because I take several blood pressure meds, it would be different for me. I hope my GP is correct on this one. I'm really tired of taking so many meds and vitamins. And VERY sick of the D!

Jean
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tex
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Post by tex »

Jean,

I hope the Entocort works quickly. Once you get rid of the D, and start feeling better, it will be easier to sort everything else out.

One of the problems with meds, is that some of them can affect the way that others work. If you take enough of them, all sorts of things can happen. Your GP is probably right about that.

I hope you start seeing some improvement within a week or two.

You're very welcome,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jeanie
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Post by Jeanie »

Tex,
I got my Entocort on Thursday and took the first pill Thursday evening. I actually felt some difference on Friday. My stools started to form. Today especially they are looser. I really didn't expect much success so soon. Now they are light colored and floating. I'm always scared to add any more medicine since I am already taking so much. I have been taking 3 Entocort each day and hoping it will really help. When I took it for 8 weeks (nearly 3 years ago) it did help and also my rash cleared up. I was just looking at some pictures from before I took it in 06 and my arm really had a red rash. I've had problems off and on with exzema and wonder if that is part of the digestive problem. I have also had impetigo two or three times. The first time when I was in grade school. It was really miserable then. It would make sense if the skin reacts to a bowel problem. The chiropractor seems to think that my subluxations have a great deal of influence. (Of course he would.) I do hold out hope for the work the biochemist is doing. First getting rid of parasites, then molds, etc., next heavy metals, amalgams, and now chemicals. Man, I must have been a mess. :roll: Now my new concern is if the Entocort could affect my bone density, my blood sugars, or cause me to gain weight. Always something isn't there!

Thanks for all your wise advice. What a blessing you are!

Jean
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tex
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Post by tex »

Jean,

I'm glad to hear that the Entocort seems to be helping, already. Since only about 10 to 15 % of it is absorbed into the bloodstream, it will take a while for it to clear up any skin problems, but yes, in the long run, it should definitely help to clear up skin problems, also, since those are autoimmune reactions.

The newest vitamin recommendations show that we need much more vitamin D than the old recommendations indicated. Vitamin D is vital for growing new bone tissue. If you will take 2,000 to 4,000 IU of vitamin D3, daily, (as suggested by the newest guidelines), then you may not have to worry about any bone loss due to taking Entocort.

Since we all seem to react differently to various medications, some people gain weight while taking Entocort, and some don't. Hopefully, you won't have any significant side effects.

You're most welcome.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jeanie
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Post by Jeanie »

Oh my goodness, I didn't realize it has been this long since I last posted. For some reason, I have managed to keep a bit too busy. I did get the Entocort and have just finished the first bottle. After a few days, the D quit. I had a few soft stools but nothing like before. It's a relief but now unfortunately I have a new problem! After the many, many years of D plus some scar tissue from a fistula surgery I had many years ago, the opening is very small and I have to strain to have a BM. Never thought I'd complain about it, but last night I even had to use a suppository before I could go out. That took care of it, but I'm not sure if it's okay to do that. In some ways I am more miserable than before.

My doctor wrote the prescription for one refill so I'm not sure what he has in mind. I have a visit coming up on Tuesday (with the GP.) I had my Blood tests done last Wednesday. I had been concerned about my blood sugar but what a pleasant surprise. My A1C went from 7.5 three months ago to 6.4. I wasn't surprised because :cat: :cat: I had been testing much lower in the morning than previously. In fact, I've had several hypoglycemic episodes and so I have to eat carbs as I get really shaky. Which doesn't help my attempt to lose weight. My cholesterol did come down but it's still too high. The doctor seems to be quite concerned about it. The good news is that my triglycerides were down to 62. Three months ago, the count was 172 and one year ago it was 246. The doctor suggested that losing weight might help. I'm down about 10 pounds from a year ago but seem to be at a standstill. with the diabetes, gluten problem, cholesterol, etc., eating is difficult. I just finished with the biochemist who did some detoxifying for several things. I have now ordered a better multivitamin and am taking a lot of supplements along with my eleven (yes eleven) drugs that I have to take! Oh yes, there's the Arimidex too. I wonder how that plays out along with all the rest of this. I'm sure the doctor will want to put me on some additional cholesterol medicine. I'm taking Niaspan even though I've had some nasty reactions to it, but I told him I refuse to take the Lipitor (or any other statin drug.) I also take Red Yeast Rice which is why the count came down from the last labs. Who knows how much interaction all of my meds have. I would like to quit taking the Prilosec but whenever I don't take a pill, I start getting the heartburn. I've read a little on it but don't know how to wean off of it without causing more problem.

One more thing - I have read on some posts that some people manage the MC with just drugs and others manage it with diet. Diet alone hasn't worked for me. Now that I'm on Entocort, what would happen if I did eat gluten or dairy? (When I'm out, for instance.) Would that mess things up for eventually weaning off of the Entocort?

Sorry to throw out all of these problems but I'd appreciate any help!

Thanks and Hugs,
Jean
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tex
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Post by tex »

Hi Jean,

Well, It's good to see that you have the D under control, but I'm sorry to hear that now you have the opposite problem. You're not the first to have that problem, after having D for many years, and then getting it under control. Maybe you can help that situation by adding more fiber to your diet. Your body should eventually adapt again, but it might be a good idea to help it along with a stool softener of some type, or just add more fiber to your diet.

As much as your triglycerides have come down, it seems strange that your cholesterol did not come down more. I notice that one of the listed side effects of Arimidex is to cause some patients to have an increase in cholesterol, so maybe that is the reason. Yes, many drugs do have adverse effects on other drugs.
Jean wrote:Now that I'm on Entocort, what would happen if I did eat gluten or dairy?
That's a tough question, and I'm afraid I don't know the answer. It depends on how sensitive you are to gluten and/or casein. A few people are able to eat just about anything they want, while taking Entocort, while others still have to be very careful. The biggest risk is that it takes time for the gut to heal, from gluten damage, so if you stop taking Entocort, and your gut hasn't finished healing, (because you have been eating gluten), then you will relapse, and you will have to start over with the healing process. Dairy is not as risky, because it doesn't seem to do long-term damage to the intestines, the way that gluten does, so the healing period is very short, for any damage done by the casein in dairy products.

Remember that for most people who take Entocort along with the diet, (because the diet alone did not bring remission), eventually, they are able to stop using the Entocort, and maintain remission by diet alone, after the gut has had sufficient time to heal. Healing seems to take a year or more, for most of us.

I've forgotten if you told us whether or not you have hypothyroidism, but many of us do, because hypothyroidism seems to go along with other autoimmune diseases. Hypothyroidism can cause you to gain weight, so if you are hypothyroid, and you are not being treated, or if you are being undertreated, then the hypothyroidism could be causing you to gain weight, or it could keep you from being able to lose weight.

You're very welcome.

Hugs,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jeanie
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Post by Jeanie »

Tex,
Thanks for your quick and knowledgeable reply. I had to go to my files and check about the thyroid test. I have long thought that I might have hypothyroidism. I did have a test done last August. TSH w/Free T4 reflex. My value for the TSH was 1.49. The standard range is listed as 0.4 - 5.0 mU/L. It seems that I read somewhere about the tests given are not as accurate in diagnosis as they could be. I still have to wonder if my thyroid could be a problem. I have cut back on my eating but it doesn't seem to matter. I did lose 10 pounds a while back but can't seem to go down any more. Also, I don't have the energy I feel I should have. Is there any other type of testing that can be done?

I just looked at my records. On 11/2/07, my total cholesterol was 278 and the LDL was 194. (I have had quite high cholesterol for many years.) I started the Arimidex on 12/3/07. On my next test on 4/17/08, my cholesterol was 422 and the LDL was 286. Another question - the tests are done fasting, but I wonder if what I had eaten in the two or three days preceding the test would have an effect? On the last test I took I goofed and ate some steak the night before.

It just seems weird that the tests done 3 or 4 months apart should be so vastly different. Well, I really don't want to take any more drugs. I'm wondering what other things I could do or take in lieu of that. BTW, only a small portion of our cholesterol comes from food anyway. The body makes the rest. So how do I tell it to stop already? :-)

Again, thanks and Hugs,
Jean
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tex
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Post by tex »

Jean,

It's true that those tests leave a lot to be desired, for diagnosing thyroid problems, and most GPs don't know enough about interpreting them, to do their patients justice, but your TSH value looks pretty good, so your thyroid is probably working normally, (provided your free T4 was OK). My TSH was mid-range, but my Free T4 was below range, so I've been taking thyroid hormone supplement, for a couple of years, now. If your thyroid is working normally, then taking a thyroid supplement wouldn't help. You would have to take a dangerous overdose, in order to lower your metabolism enough to affect your weight significantly, (a significant overdose can cause serious heart issues). I'm not aware of any other type of tests, that would be better for assessing thyroid function.

Looking at the records that you mentioned, it's pretty clear to me that the source of your cholesterol problem is the Arimidex. You should point out those test numbers to your doctor - maybe he or she doesn't realize what is going on, with that drug.

Eating something the night before a fasting blood test should not be a problem. Normally, about 8 hours of fasting before the test, is considered to be more than adequate. Also, the fasting is really mostly to allow the blood sugar level to settle down. The blood glucose level jumps after a meal, and waiting 8 hours before doing the test, gives it time to go back down to a "normal" minimum level. I'm sure that you're familiar with all that, because of the diabetes issue.

Cholesterol may vary a little during the day, but not much. It also varies during the year, (it's usually a little lower in the summer), but normally, that shouldn't be a very large effect. The Arimidex obviously had a huge effect on your cholesterol level, and your doctor wasn't on the ball, if he or she did not notice that, at the time. After you started taking Arimidex, in only four and a half months, your cholesterol increased by 52%, and your LDL increased by 47%. That's a huge increase. Trying to bring down your cholesterol level by taking drugs, when drugs were the reason why it was elevated in the first place, is a little like trying to lose weight, by eating more food, of a different type. Arimidex appears to me to be a bad choice, for your overall health, but I'm no doctor, of course.

You are correct that the body manufacturers cholesterol, (it's necessary for existence). Cholesterol is the basic raw material from which your body makes many major steroid hormones. Sometimes diets, (or medications), send the wrong message to the body. When the body feels that it is being "starved" for cholesterol, (or the elements used to make it), it tries to make more, to make up for the shortfall. Or, if your liver thinks that the ovaries need more cholesterol to produce estrogen, for example, it produces more cholesterol, bundles it with a protein in the form of an LDL and sends it into the bloodstream. Once that LDL leaves your liver, any cell that needs it can claim it. To reclaim unused LDLs, your liver bundles cholesterol into HDLs, which circulate throughout your body, and collect stray LDLs. When these lipoproteins return to the liver, the liver recycles them, or uses them to build bile acids, which the intestine absorbs for use in digestion. When things don't go as planned, then the cholesterol level can get out of balance.

Hugs,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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