Just Checking In

[tex]

Rose,

I hope the weather there doesn't get out of hand. We're supposed to have to deal with similar weather on Sunday, which I'm not looking forward to, either.

Did you notice my post two days ago about the Colestipol? Here is the gist of it:

I did a little more checking on Colestipol, and found that there is apparently a difference in ingredients, from brand to brand. This one, for example, does not appear to contain any objectionable ingredients:

http://www.rxlist.com/colestid-drug.htm

You may just need to discuss this with your pharmacist, since they are usually familiar with ingredients of various drugs, and the problems connected with intolerances. One thing to remember about the cholesterol-sequestering drugs, though, is the fact that they often/usually interfere with the absorption of certain other elements of one's diet. For example, it is sometimes recommended that one take a multivitamin when taking Colestipol, because it makes the absorption of vitamins much more difficult. Also, it retards the absorption of things such as certain steroids, (hydrocortisone, for example). I have no idea if that would also apply to budesonide, though.

Anyway, you might want to take another look at another brand of colestipol, such as Colestid, just in case your new GI's treatment utilizes synergism, (IOW, it might work far better when every component is included).

Obviously, though, you can disregard my comments about the combination possibly working synergistically, since the Xifaxan is definitely out.

Love,
Tex

[Rose]

Tex,

I did see your post the other day, thanks for reposting it. What we have decided to do is try the Colestipol and see what happens. At least if I have a reaction, I can call there office and tell them that this didn't work as well. I don't want to come off as difficult (I'm not really), I am just leary of taking anything with gluten in it b/c I know what the out come will be (no pun intended). I took one this am and my gut is churning, but I will solider on.

BTW, we had a lot of lightning, rain and wind, but thankfully no hail or tornados here in Knoxville.

Love,

Rose

[tex]

Rose,

I long for the day when GI docs wake up and realize that what we put into our digestive systems can actually affect the way they operate, (how difficult could it be to recognize that connection?), and pharmaceutical companies figure out that adding "inert" ingredients that cause adverse reactions for many people, to their high-priced formulations, is just plain dumb.

I'm glad the weather didn't get abusive.

Love,
Tex

[Rose]

Tex,

I hope the weather is not bad for you tomorrow.

BTW, starting this afternoon my vision is getting blurry even with my glasses on. So I guess the Entocort is on its way to being checked off of my list too.

I have gotten the impression that my new GI has the same mentality as the other when it comes to cc and diet. I mean I can look cc up on the internet and even the Mayo Clinic site says to eliminate gluten first. I think that he is better than the other b/c at least what he told us made sense, it is just that I don't tolerate medication very well (never have). I guess we are going to have to purchase a conversion van with a potty. Hey maybe the GI's are really car dealers in disguise.

Love,

Rose

[tex]

Rose,

Since you added the Colestipol today, (or, at least you were considering it), I checked it out, but I don't see blurry vision listed as a possible side effect, so you are probably correct about that being due to the Entocort.

I get the impression that most GI docs dislike the internet, because it inspires some patients to ask questions about their treatment, that they wouldn't otherwise be asking. I suspect that precious few of them ever use the internet as a source of information on new developments in their area of specialization. Interestingly, the few GI docs who blog regularly on the internet, seem to be light years ahead of their non-blogging cohorts.

Some of us used to joke that, based on their treatment methods, a lot of GI docs probably own stock in toilet paper manufacturers.

Actually, a van with a built-in potty might not be such a bad idea, especially for trips. Hmmmmmmmm.

Love,
Tex

[Rose]

Tex,

I totally agree with the GI's and the internet. They just keep rolling their eyes and we just keep going to the bathroom.

The Entocort is now making me dizzy and the Colestipol is awful. I have very painful gas, bloating and nausea. Oh yeah and conference calls. My husband wants me to get a CAT scan b/c he was watching some show on Discovery Health Channel last night and this woman was having the same symptoms and she ended up with a tumor in her intestines and the GI's missed.

I always thought that an investment in Charmin was a good idea.

Love,

Rose

[tex]

Rose,

I'm so sorry that everything you take, seems to cause an adverse reaction. You certainly weren't exaggerating about not responding well to meds, in general. Those do indeed sound like common side effects of Colestipol, probably including the D. Are you going to continue taking it? If it was prescribed to reduce the D, I would think that it should begin to work very quickly, (as soon as it gets to the small intestine), so you should see results within 25-30 hours, (even allowing for normal transit time). I'm sure you noticed that, interestingly, both D and C are listed as possible side effects.

It's certainly not impossible for doctors to overlook even rather large tumors, but one would think that the hospital would have checked your stool sample for occult blood, (since that's also a possible marker for C. diff), but, as we discussed, if they lost the sample, that might be a moot point, of course. If you have recently had a series of barium x-rays, that should have defined any tumors, and I suspect that's why they use that test for most of us, but I've forgotten how long ago you went through your diagnostic tests. Your diagnosing GI doc certainly should have ruled out that possibility. The very first test they gave me, was a series of CAT scans, but that's because both my GP and the GI doc he sent me to, were convinced that I had a tumor, when I complained of uncontrollable liquid D.

Love,
Tex

[Rose]

Tex,

Dh and I discuss my meds this morning and I told him that "if I was going to live in the bathroom than I want to at least feel good instead of feeling like garbage." He finally agreed and told me to get off the drugs esp since they were not helping the situation.

I had my small bowel series done at the end of May and as I was looking at the path report yesterday it said that all they noticed was a slow transit of barium through the small intestine. Besides the new GI actually gave me an exam and felt my stomach (which the other one never did) so I think that I am ok.

Back to the old drawing board.

Love,

Rose

[tex]

Rose,

Hmmmmmmm. Slow transit time in the small intestine can increase the risk of acquiring SIBO, though I don't have any idea if the increased risk is significant, or not worth mentioning. Part of the reason for that is because slower transit can/will increase the possibility of fermentation of food that is incompletely digested. Fermentation is common in the colon, but not in the small intestine, and obviously, it involves bacteria that normally reside in the colon. Though it's very likely that there are often small numbers of those bacteria in the small intestine, as long as food is properly digested, and moving properly, they never get a chance to propagate sufficiently to create an "overgrowth" condition, because their "food" is flushed away before they have time to do much with it.

Can you tolerate probiotics of any kind? Just in case you might have a SIBO condition, contributing to, or even causing your D, I'm beginning to wonder if regular use of a good probiotic might help to nip that problem in the bud, without having to use any antibiotics. There is a difference in probiotics, of course, and you would need one with a set of bacteria designed to do the job. There is another fly in the ointment, in that some people get violently ill, when they take probiotics, or at least certain probiotics. Polly, for example, had an adverse reaction to a very popular probiotic. I have never tried a probiotic, because when I was recovering, I tried an enzyme supplement, and it made me so sick that I decided not to try to mess with my body chemistry, unless I had no other choice. Because of that, I can't offer any personal advice, but I wonder if starting out slow, and slowly increasing the dose, might work better than starting with a full dose. Maybe someone else has some pointers on this. There are several options, but this thread might give you an idea of where to start. Note that VSL#3 is the one recommended by Dr. Lewey, (the food doc), in case you are familiar with him, and his blogs.

http://ibdsupport.dragonpack.com/parent ... 40880.html

Love,
Tex

[Rose]

Tex,

Thanks for the information. To tell you the truth, I have never tried probiotics. My MIL suggested them about 2 months ago, but the only ones I ever hear of are the ones in yogurt. I will have to look into it more. This is the same reason why the GI wanted me to take the antibiotics. He believed that the slow transit could be causing SIBO. Can you purchase them at a HFS? The ones listed in the tread were by prescription. B/c of the mentality of the GI's I have been to I don't know if they would prescribe any.

Love,

Rose

[tex]

Rose,

Yes, health food stores usually carry a selection. Usually, the best probiotics are kept under refrigeration, but I don't recall how the VSL#3 products are stored. They make a number of different products. I would assume that pharmacies also carry products such as these, (they would certainly need to carry the prescription version). Note that most of the "better" probiotics contain lactose, which is why Dr. Fine recommends taking a good probiotic, but no longer recommends a specific brand, because at last report, he hadn't found one that met his criteria, because of the lactose issue. Some may also contain gluten. Please read this, for information on which ones are safe to take. Note that insurance will usually pay for the prescription version, and the only prescription version is the double strength formulation, (at last report):

http://thefooddoc.blogspot.com/2008/01/ ... -free.html

You may find some of Dr. Lewey's other blogs to be very interesting reading, also. He specializes in celiac disease, gluten sensitivity, and related issues, and his wife is a celiac, so he speaks from experience, and he has a totally different view of these issues, when compared with most other GI docs. He's a very open-minded thinker, and researcher.

Most of us have found that we have much better luck getting prescriptions written by GPs, rather than GI docs, even for meds such as Entocort, and Prednisone. Once you have a diagnosis of an IBD, GPs usually don't hesitate to write such related prescriptions, if a patient requests them. IOW, they are usually more understanding, sympathetic, and easier to work with, than GI docs.

Love,
Tex

[Rose]

Tex,

Thanks again and I will check it out. The lactose issue was a concern for me (as well as gluten), but I do agree with you on the GI vs. GP thing. I find that my GP is very concerned (more so than the GI) about the d and the frequency and want me to get it under control. If I have to I will go that route first.

Thanks again,

Love,

Rose

[tex]

Rose,

Another thing to consider, in case you ever need to choose a probiotic, or a med, based on the lessor of two evils, (either gluten or lactose), remember that gluten does much more physical damage to the intestines, than lactose is ever likely to. Autoimmune reactions are triggered by proteins, (such as gluten), while lactose is a sugar. The "reaction" caused by "lactose intolerance" is simply due to the gas and bloating that results from the lactose fermenting in the colon, after it failed to be digested in the small intestine, because of a deficiency of the lactase enzyme. Many of us are also concerned that lactose may contain traces of casein, and therefore might trigger a form of autoimmune reaction, if enough of it is present. However, pharmaceutical grade lactose should be pure, and therefore free of casein.

Also, if you ever need to choose between a med that contains either gluten, or any other protein intolerance, always avoid the one that contains gluten, because gluten will usually cause long-lasting damage, whereas the other food intolerances may cause you to feel just as sick, in the short run, but they will not result in long-term residual damage to your intestines, the way that gluten will, (as a general rule).

Love,
Tex

[Rose]

Tex,

Thanks, I completely forgot about the damage that gluten can do to the intestines.

Love,

Rose