2 rolls of toilet paper today!

Lesley · Post by **Lesley** » Sat Mar 31, 2012 8:20 pm

Does that give you a clue? 8-9 times today. Not watery or firehose, but more of the green, small piece mucousy variety. It's exhausting me. And I don't know what to do now.
I wish I had nice soothing foods I could eat.

JLH · Post by **JLH** » Sat Mar 31, 2012 8:29 pm

Sorry, Lesley. You still doing MRT? Is it what's making you sick?

Lesley · Post by **Lesley** » Sat Mar 31, 2012 9:26 pm

I don't know. But I am certainly MUCH sicker than I was before I did it, although I don't know what's that different. I am not eating anything enterolab targeted for me. Now anything I eat is causing me misery right away.
I think I need to cut out the grains suggested by the MRT and go back to only meat and potatoes.

Lord, I hope this hasn't caused me to become sensitive to anything else.

Post by **tex** » Sun Apr 01, 2012 7:35 am

Lesley,

FWIW, I agree that cutting out grains while you're reacting is probably a very good idea.

Tex

Polly · Post by **Polly** » Sun Apr 01, 2012 8:14 am

Me too. I have always found that I feel best when eating NO grains or pseudograins at all, even if MRT said they were OK. So sorry to hear of your continuing difficulties. How is your weight doing? What meds are you taking? Are you using Imodium? Are you taking any herbs/supplements? Are you alternating between C and D?

I hope you find some answers soon, dear.

Love,

Polly

ant · Post by **ant** » Sun Apr 01, 2012 9:50 am

Dear Lesley

So sorry you are still in such a flare. When that happens to me I cut out everything that in the past my food diary suggested might be a problem. We are all different but for me that left me with lean meat, fish, well cooked carrots and rice.

I do hope things calm down soon, best wishes ant

Lesley · Post by **Lesley** » Sun Apr 01, 2012 10:46 am

How is your weight doing? What meds are you taking? Are you using Imodium? Are you taking any herbs/supplements? Are you alternating between C and D?

I was maintaining, but with the D of the last few days, especially yesterday, when it became watery and I was obviously not absorbing, it has gone down a couple of pounds.

I have cut down on meds drastically, so I still have the seratonin meds also geared to pain relief (nortryptiline and effexor) BP control - nifiderpine (halved over the last few months). pulse control - metoprolol, and HRT (vaginal atrophy). That's it.
I stopped Norco weeks ago. I had cut down to one a day, and then down to one every 2 days, then one when the pain was unbearable, and then none, even if the pain is horrible, like now.
I can't do as much as usual (which wasn't that much) but no more narcotics!
It's been a long time, and was done gradually, so I don't think it's the driving factor behind the D, though, since it might be out of my system now, it could be part of it. Hopefully motility will improve.

I took imodium yesterday when it became clear that I was having a serious flare, with rampant D, horrible cramps etc. Because of my propensity for C I don't want to take it unless and until I have a bout of D again. So far I haven't had it today, but the day is young yet, and I haven't eaten. Plenty of pain, ache in medial lower L quadrant, GERD, weakness and general bad feeling.

When I started MRT I dropped all supplements for 10 days, and only took magnesium as per Meg's instructions, but I have restarted them. I am taking liquid B12, calcium carbonate and potassium gluconate in powder form, glutamine, DGL, and liquid vit D (5000 units).

If I combine the enterolab results with the low green of the MRT, and cut out all grains and pseudo grains I am really left with very little to eat.

Another continuing problem is the GERD and the pain swallowing in spite of taking H1 and H2 antihistamines. I have to get the doc to do an upper endoscopy to check for Barrett's so I can be monitored. He's in no hurry, though I think it should be done ASAP so that I can be monitored.

I am sort of desperate at this point. I really don't know what to do. Any ideas?

Ant - I am down to lean meat, mostly tilapia, potatoes, and I am not sure what veg yet.

humbird753 · Post by **humbird753** » Sun Apr 01, 2012 10:54 am

Hi Lesley,

I am sorry to hear you are still having a difficult time. I was surprised to hear you were having problems with D because you usually have C.

In looking back to when my D started in Aug., 2009, I believe I should have invested in stock for paper products (toilet paper). I have used as many as 3 rolls per day for most of 2 years!

Although I may now know a lot, I do agree with Tex and Polly in that you should eliminate grains until your system has healed more.

I hope things begin to settle down for you soon.

Paula

Lesley · Post by **Lesley** » Sun Apr 01, 2012 12:07 pm

Hi Paula,
I only started grains (except for a little gluten free oats, and a couple of other flours in baked goods, but very minimal - think a thin slice of "bread" a day, which gave me something in addition to meat and potatoes) after the MRT. If you look at my results you will see that potato, that was found to have negligible impact via enterolab, was a fairly high green on the MRT. I was worried I was developing a sensitivity to it. Buckwheat, millet, quinoa were low greens and highly recommended as an integral part of my diet. So I tried it. The results are not good. First HORRIBLE C, and now a really bad D attack.
And yes, I do tend to C more than D, but the reason MC was diagnosed was because of horrible D triggered by IV antibiotics as a result of a bad, indeterminate infection requiring hospitalization.
When that came under control I went back to fighting C, but even when I had a BM it was never Norman.

So grains are out for now!

Forgot - am also taking omegas, vitamin C, folic acid. I think I am covering everything. Any other suggestions?

Thanks!

Post by **tex** » Sun Apr 01, 2012 12:57 pm

Lesley,

I'm not saying that this is your problem, but as you are aware, with this disease, almost anything can be suspect. For example, common side effects listed for potassium gluconate include diarrhea, nausea, stomach discomfort, vomiting, etc.

When I was recovering, I had to cut out vitamin C, because all citric acid caused problems for me, even though almost all citric acid in this country is made from corn.

I'm guessing that the buckwheat may have kicked your antigliadin antibody level up a notch or two, and it's taking a while for that to come back down.

Licorice is probably generally safe for short term use, but may not be safe for long term use:

Consuming 30 grams or more of licorice daily for several weeks can cause severe side effects including high blood pressure, low potassium in the blood, weakness, paralysis, and occasionally brain damage in otherwise healthy people. In people who eat a lot of salt or have heart disease, kidney disease, or high blood pressure, as little as 5 grams per day can cause these problems.

http://www.nlm.nih.gov/medlineplus/drug ... l/881.html

Good for you for weaning off the Norco. I understand how difficult that was.

Tex

Polly · Post by **Polly** » Sun Apr 01, 2012 1:00 pm

Oh Lesley,

What a dilemma. Okaaaaay, let's see.......I'm putting on my thinking cap.

Keep in mind that having D does not necessarily mean you are malabsorbing. My test for malabsorption was negative, despite weeks of D 10-15 times a day or more.

Regarding meds - have you called the manufacturer of each of your meds/supplements to make sure they contain no gluten, dairy, soy, etc.? This is very important. As you know, HRT can be a cause of MC - is it something that could be put on hold for now?

I would recommend holding off on all supplements at present, unless you have had tests that indciate you are deficient in them, like maybe B-12. Of course, I am a vitamin D fan in any case, so long as the prep contains no sensitivities. We MCers tend to react to many things in supplements - colors, preservatives, etc., besides our usual food sensitivities.

On to food. I don't think you need to worry too much at this point about developing new sensitivities. You first have to find those foods best for you - then you can figure out how to rotate them. I'm happy to hear that you are dropping all grains and pseudograins - IMHO, a "thin" slice of bread a day is like being just a "little bit" pregnant. LOL! Because you are having such difficulty, I would recommend as restrictive a diet as possible for now - no grains, pseudograins, dairy, soy, legumes, and possibly no nightshades (except for the white potatoes you seem OK with). What does that leave you with, according to Dr. Fine and MRT and your recent experiences?

Hang in there. You will figure this out.

Love,

Polly

Lesley · Post by **Lesley** » Sun Apr 01, 2012 6:30 pm

I just wrote a whole reply, but somehow it got lost.

Polly - The only time I say malabsorbtion is when I can see all the food in the toilet. Otherwise, even if loose, I know I have been absorbing. Then I don't lose weight.

I checked all the meds and supplements I take for gluten, soy or corn. I have only used recommended ones.
If you think I should stop all of them I will.

HRT - I have always been so constipated I never thought of D with this. I was using an internal estrogen ring, but I found it difficult with my gut problems. I am always nervous of stool getting into the urinary pathways and giving me an infection (which I got every month pre surgery) so moving the ring in and out as needed worried me. So I left it out.

dairy, soy, legumes, and possibly no nightshades

I haven't eaten these in a year.
What's left? Meat, potatoes, well cooked apples, pears, maybe carrots, maybe spinach (not sure yet) olive oil, coconut, white fish (mainly tilapia) vanilla. That's about it right now.

This is where good meat is important to me, because it has great flavor and I don't need more than a little salt and pepper.

Tex - I am taking the potassium and calcium with Vit D for the GERD as recommended by you and Gabes.
I am no where near 30 grams of DLG. It's measured in mgs. Very little. I am struggling with the GERD.
I think the flare was caused by the buckwheat. I am not going to eat it, even when I heal!

Today no D, but cramping, pain and exhaustion. My back is agony., but I am not taking Norco.

Thanks guys

Nancy · Post by **Nancy** » Mon Apr 02, 2012 7:11 am

Just a thought, but were you tested for any parasites? That was what my doctor tested for first.

Lesley · Post by **Lesley** » Mon Apr 02, 2012 11:13 am

Yes. All parasite tests were done. Negative.

I had a day of horrible D, and yesterday I had cramps and gas which could have powered a rocket! I have now reverted to the beginning of C, which I have to ward off. I have NO idea if what I do will stimulate D again, especially since my gut is clearly inflamed.

Thanks again!

humbird753 · Post by **humbird753** » Mon Apr 02, 2012 5:32 pm

Hi Lesley,

As usual, I have no advise. You have the best giving that.

I wanted to comment on the malabsorption you believe may be occurring because of the extreme D. Even after over 2 years of going 25-30 times a day, I had a CBC plus 2 other types of blood tests done to check all my levels. Believe it or not, I am absorbing nutrients, and all my tests were in normal range. My D is extremely watery and all foods (except meat) are recognizable. So I agree with Polly when she is telling you that D does not mean malabsorption. IMO it also makes sense that you would lose a couple of pounds because of the fluid loss.

I will be having blood tests done again within the next month or so to make sure all my levels are still in normal range.

I hope things are improving since your last post, and also that it doesn't go the other way (C).

Hugs,
Paula