A couple of questions

[Beth]

Hi everyone,

So, this flare-busting weekend is proving a bust. Not only am I not getting better, I'm getting worse. I've had to run to the bathroom 7 times already today, and I've lost five pounds in the last five or six days. I asked my husband to go out and get me some electrolyte enhanced water - didn't want to do gatorade with its high fructose corn syrup and dyes. I'm wondering if this water is making me worse. It has calcium chloride, magnesium chloride and potassium bicarbonate. I looked at the list in the food section to see if any of those might be triggers, and it says "calcium anything" can be a problem. Do you think this could actually be hurting rather than helping?

Also, I have a kind of gross question to ask. When I've been running to the toilet today, I'm getting pure liquid, but at the same time I also feel constipated. That is, I feel like there's more waiting to come out but it just hasn't been turned into water yet and so it won't escape until it goes through some water reduction process or something. Have any of you experienced this? What is it about?

I've decided that I'm definitely going to do the medication route. I am losing SO much money just by cancelling my students for five days. There's no way I can keep doing this, financially or physically. I certainly can't afford to lose a whole lot more weight. So, I'm on the hunt for a GI right now. I don't think any of you are in Boston - but does anyone know of a good GI in my area? There are lots of them, I know, but I'd really like to deal with someone who will look at my situation more holistically rather than just as another throat to shove a pill down.

Thanks,
Beth

[bobh]

When I've been running to the toilet today, I'm getting pure liquid, but at the same time I also feel constipated. That is, I feel like there's more waiting to come out but it just hasn't been turned into water yet and so it won't escape until it goes through some water reduction process or something. Have any of you experienced this?

Yeah, when I was having BAD FLARES, there was a lot of explosive gas. Your situation may be totally different, but I would feel like there was "more to come" but after blowing out some "pressurized paint" with a "fog horn" signaling it was done (release of gas), that was it for that "episode". And yes, it would feel like there's more waiting to come out.

For me, part of that was a generalized "pressure" in the digestive tract, gas rumbling above the descending colon, PLUS A GENERALIZED INFLAMMATORY CONDITION throughout the intestines, which translates to a feeling of "unrest".

Dr. Fine's "Pepto Bismal" remedy, 6 to 8 pills daily for up to a month or so, helped immensely, but it wasn't a cure. And the final 6 month flare that led me to meds was not responding to that either. But again, it explained to me why the urgency was there, and it "often" turned off with the Pepto due to its ability to sooth and calm down the guts (it had very little effect compared to the steroids - they STOP the source of inflammation). When the gas-propelled paint was really bad, I would get "some" relief from charcoal pills with Pepto, AND immodium as needed but it only helps for about 2 days. Dr Fine says that immodium only "delays" the "D", but when you are suffering, it can help get you through a bad episode.

[tex]

Beth,

I don't see any reason why the ingredients you named should cause problems as far as intolerances are concerned. I don't believe that they are derived from "suspect" sources. They are merely sources of calcium and magnesium, and the last one is a pH adjuster, (acid neutralizer).

I agree with Bob's explanation of the "constipated" feeling that's so common with MC - it's just the nature of the disease. The phenomenon of being able to pass only water, while feeling severely constipated, is pretty common during MC reactions. It can also occur due to a blockage in the colon, but I doubt that is your problem.

Wayne

P S I'm sure that there are many GI docs in your area, but finding a "good" one, that is, one who is "MC-friendly", may turn out to be a pretty good trick.

[Beth]

I just realized what's going on and why I'm having so much D - the magnesium in the electrolyte water. Magnesium is in epsom salts - and remember how when I was in NYC I reacted so badly to my (over)dose of that stuff? I'm getting the same reaction now. I just took two immodium pills, but I read somewhere on this site that it has gluten in it - is that right? And should I be drinking something else to replace my electrolytes? It seems like everything I put in my body is going to make me react. I can't imagine Gatorade would be helpful with all the ingredients in it. And pedialyte has dextrose. Any thoughts about this? I've barely eaten anything for the past three days - I've only one and a half bananas today so far. Just don't want to eat, but I know I need to or I'm going to get even weaker. God, this is the pits.

[Polly]

Hi Beth,

You've gotten great advice so far. I would be suspicious of the magnesium - it is used to treat constipation - good old Milk of Magnesia. That definitely could be making the D worse. Also, it is possible to get diarrhea from starvation.

I think you have made the best decision for now given all of the facts - to go on medication. Why don't you call your doc tomorrow to see if s(he) is amenable to Entocort? There are some studies you could print out and take to your doc if there is any hesitation to proceed with the Entocort.

Love,

Polly

[Polly]

HAH Beth!

Our last posts just crossed! Great minds think alike................

Also, check in the newbie/overview sections - there is an article there that addresses dehydration and electrolyte imbalance.

Love,

Polly

[tex]

Magnesium is a vital electrolyte. Epsom salt is magnesium sulfate - we're talking about two different chemicals, here. I wouldn't think that a drink designed to replace electrolytes would contain ingredients that commonly act as a laxative - that would be counterproductive, since it would lead to more dehydration.

That said, it's certainly not impossible that your gut could be affected by it, as sensitive as your intestines are, right now.

If you don't want to try the homemade drink listed on the page that Polly suggested, just the salted potato chips and water, along with the occasional banana that you are already eating, (as also suggested on that page), may be sufficient to get you by until things get better.

Wayne

[harvest_table]

Hi Beth,

I'm glad you have made the decision to try medication in order to find some much needed relief. I had very good luck with Entocort but in hindsight, I'm thinking that a 2 month round of pred I took just prior to starting Entocort helped speed things along quicker. Bobs experience with the Pred/Entocort regime has worked wonders for him.

This is a quote from my medical profile.

GI then suggested Prednisone since things were so out of control and I needed relief. I took it for 2 months and found relief instantly- within a few weeks was having normal bowel movements, better appetitie, less muscle and joint pain and I just felt like a million bucks. As with many, my symptoms returned as soon as I went off the Pred so I began controling the D with Lomotil 3 times a day. Lomotil worked well. I did not really have any noticable side effects from using Pred. for 2 months.

Within a couple weeks after this 2 month round of pred I started Entocort and dieting and things just kept improving from there.

I think, if your looking for a quick & for sure way of easing your symptoms in the shortest period of time that you may want to consider Pred into the mix somehow.

Sorry your having such a hard time of it, we understand that's for sure. Relief is right around the corner so keep the faith!

Love,
Joanna

[Beth]

Wayne - I tried that homemade electrolyte drink last night. I could barely get it down - too sweet, and such a weird mix of salty and bitter with the sugar! I just tried eating a little avocado and some cooked carrots with salt. Will try another banana later if I can.

Thanks, everyone, for your support about the medication. I'm simply amazed at what my body is doing, and I'm really not interested in watching this continue any longer than it has to. So, I'll be on the phone first thing tomorrow to try to find a good GI. Good luck to me. Geez.

[Polly]

Hi again Beth,

My, you are having a time of it, aren't you? I am wondering what sports drink you used and what the magnesium concentration was?

The good old standbys like Gatorade or Pedialyte do not contain any magnesium......they mainly focus on the two major electrolyes (sodium and potassium). I really don't believe there is any reason to add magnesium to rehydration fluids, since it is such a minor electrolyte in the blood, with a concentration averaging 0.81 mmol/liter (while sodium is 135 mmol/liter and potassium is 4 mmol/l).

Also, it is known that magnesium causes diarrhea in some.

I am also wondering what else may have been in that fancy drink. Gatorade contains citric acid (can be a corn derivative). Of course, anything with high fructose corn syrup can be a problem if one is avoiding grains. Did the drink have any "natural" flavorings or colorings or other unusual additives?

I saw on the internet that they have electrolyte chewable tablets. I wonder if anyone has tried these? Of course, it would be crucial to drink adequate amounts of water along with the tablets.

I have found that best philosophy for me is the fewer supplements/additives/preservatives/colorings the better. In fact, since I have never found a commercial rehydration fluid without my intolerances, I have always used the old (plain) potato chip, banana, and water routine. It has always worked for me, luckily.

Good luck tomorrow. A thought - do you have a good GP or internist? Maybe s(he) would prescribe the meds for you while you hunt down a GI. No harm in asking.

I will be so happy to read a post one day soon that you are on the mend.

Love,

Polly

[tex]

Beth,

I've never tried that formula, but I can see how it might not taste very appetizing. Anytime I was in your position, I just tried to make sure that I was getting enough salt and potassium. The first time I went to the ER with uncontrollable D, I was anemic, and very low on potassium. ( I suppose the anemia was due to a vitamin B12 deficiency, because of a severe malabsorption problem, and I was short on potassium, also because of the malabsorption problem, and the fact that bananas made me sick).

Please don't shoot the messenger, here, but there's a logistics problem with your plan, that we've been overlooking. Frankly, I don't believe that you'll be able to find a GI who will prescribe either Prednisone or Entocort, without personally doing a colonscopy, first. That will probably involve about a two week scheduling delay, plus another two weeks for a follow-up meeting, at which time you might get a diagnosis with a script, or the GI may want to schedule another test. Most GIs don't seem willing to accept another GI's prior diagnosis.

You might have better luck with a GP who is willing to work with you. A GP who is familiar with MC might be willing to write a prescription on the basis of the prior diagnosis, even though it's been 3 years since you've had a colonoscopy. Anyone knowledgeable about MC will recognize that it can recur at any time, without continuous treatment. That's not good enough for most GIs, though - they always want to see for themselves.

Maybe Polly, or someone else has some thoughts on this, but I haven't found GIs to be a practical source of instant relief. It took my GI almost 3 months to give me every test he had available, but he never came up with a diagnosis, (he didn't take biopsies during the colonoscopy). I weighed about 160 pounds when I went in for my first test. 3 months later, when he told me that there was nothing wrong with me, I weighed about 125 pounds, and was weak as a kitten.

You might be much more fortunate - I'm sure my case is a rare exception, but the point is, GIs don't seem to get in a big hurry to offer relief. Their general opinion about MC, since it's not normally life-threatening, or anything of that sort, is, in a nutshell, " it's just a little diarrhea". I'm not kidding about that - I believe that several members here have been told that by their GIs.

Wayne

Edit: I see that Polly has posted while I was writing this response, so rather than rewrite parts of it, I'll just say that it appears that we're thinking along the same lines, with the GP, (in the interest of expediency).

[Beth]

Hi Polly,

The "fancy" water I was drinking is called Smart Water, made by Glaceau. It doesn't have anything in it except the few electrolytes I mentioned above - no food coloring, no flavoring, just water. That's why I thought it would be a good choice. Apparently not! I don't know what the ratios are, though - it doesn't say on the bottle, and the website doesn't say, either. It's going back to the store, though.

Thanks very much, Wayne and Polly, for your thoughts on the GI. That is great advice. I really don't have time to wait for a GI to come up with his own diagnosis, and I really don't want to have to do a colonoscopy. I had a sigmoidoscopy done when they diagnosed the MC, and that was bad enough. I do have a PCP who will probably be willing to prescribe prednisone. I really appreciate your telling me about the whole GI process - tomorrow I'm going to ask my doctor to prescribe the same thing Bob took to get over his flare. It may be excessive, but at least I'll be able to function!

Thanks again,
Beth

[bobh]

Hi again Beth... A thought - do you have a good GP or internist? Maybe s(he) would prescribe the meds for you while you hunt down a GI. No harm in asking... Polly

Bob agrees 100%. I was at the end of my rope, threw in the towel, and decided I would do meds. Called the Gastrointestinal Dr (hadn't seen for 2 years) and he was booked for 3 months, plus the receptionist became arrogant, saying they wouldn't see me unless I was "referred" by my normal Dr. I'm not talking about Insurance red tape - I don't have health Ins.

So I called my normal MD, an Internist, they had a cancellation for the next day, he knew all about my grief, and when I asked for Entocort he said "Let's to a short run of Prednisone first, I have seen it really help people stop flaring - so the Entocort can maintain the remission". He was GREAT.

[Beth]

P.S. So, Wayne, how did you figure out what was wrong with you? Did you go find another doctor? Your experience sounds absolutely horrible!

[tex]

I'm wondering if it might be a good idea to take a printout of Bob's dosing schedule along with you, just in case your PCP isn't familiar with this type of use, and asks for details. I wouldn't volunteer the printout though, unless she/he asks for details - just thinking out loud here.

Good luck tomorrow,
Wayne