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Rebecca,
I too am astounded to read what you have been thru and are continuing to endure all with a positive attitude....kudos to you!!
I truly hope you get some relief from all of this soon, to where as you can get to the end of a day and say, hey, that wasn't to bad.....I truly wish that for you!!!
Hello everyone,
I am still around and struggling with WD all darn day & night, I have had no change in my problem and have been gluten & dairy free for 3 weeks or more, How long does it take?
Maybe the soy in my TPN is the problem. I have had new issues with nerve pain in my face and have been on a drug for that.
Maybe that is causing issues with WD.
I just can't seem to get a grip on this in anyway. I thought the frequency was better but really it's the same and worse if I eat. If I don't eat I have less WD, if I take anything in, plain white rice or just filtered water I have several bouts of WD.
Stanford called in a steroid for this problem, which I won't take.
So I am sick of it all, lots of accidents, lots of laundry, chained to my house for 6 months now.
Grrrr... it's getting old.
It sounds as if you are reacting to a major trigger (I know that sounds like a no brainer, but now it is going to take some detective work on your part).
no Gluten - not even a trace....
Dairy
Soy - this is in everything literally...so read read read and know some of the other names for it too, Soya, Natto, Tofu, Edamame, Tamari, VitE even.
Egg
then I'd filter thru supplements and stop everything that you humanly can except the VitD and Magnesium (check those too for the major triggers).
I'd relive when the last time you felt good and what were you eating and go back to those same simple 3-5 foods and stick with them until the WD stops. Remember protein and bone broth helps A Lot during this time.
Also depending on where you live histamine could be creeping into your system so if you can tolerate an antihistamine (Allegra 180, Zyrtex, Claritin) I'd do that while on my minimal diet.
Your immune system is ramped up and it is going to take some baby love to get it to calm down.
I wish you the best during this time,
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Than you so much Erica, I think your advice is sound and I am trying really hard to get to the bottom of why I am reacting to everything. The soy is a tough one, because it is in my feeding tube formula, I am going to be getting much less of it starting next week. I know after reading a lot in here I have been looking at so many foods and see soy in a lot of stuff.
The gluten & dairy is no problem, I haven't been near any for over a month. My husband doesn't even eat it since I took it out of our of house and my diet a month ago.
I am doing just Vitamin D ( with K2) drops and nothing else. My mag levels are still 2.2 - so they are good.
I am wondering why the Cholestyramine isn't working for me ? I am now taking 3 full ( not level ) scoops of the powder each day in plain flitered water, The D just keeps coming. Maybe I need more?
I am able to go completely without food as I am on a feeding tube, so that is what I am doing as of today. Just taking in water and Cholestyramine and vit D.
Thank You Erica, I know you have been down this path, I have been reading a lot of your posts all morning.
Hugs
Rebecca
Your to kind Rebecca,
The cholestyramine may not work at this time. You need to be eating lots of protein, have no WD issues presently, and see excess bile after a bowel movement to know if cholestyramine is really a target helper at this time. When you plateau then take a look at the cholest again but it may take a good month for it to take effect, so lets get a handle on the WD a bit better for now.
I'm going to say stop the cholestyramine....increase protein and stay simple, but eat well ok. No time to lose weight, or deprive your cells of important amino acids and fluids.
No stress either ;-)
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
I'm sorry to see that you're now having nerve pain in your face. That sounds like a side-effect of another drug, but I suppose it could be due to a vitamin or mineral deficiency (that's not in the mix). Without budesonide to help mask the symptoms the diet changes may take 3–6 months or more to show benefits. And soy in the TPN could corrupt that. I gather that you couldn't tell any difference during the 2 days when the TPN was soy-free.
This is a cruel disease. It's definitely not for the faint of heart.
Hugs,
Tex
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.
Thanks Tex, this is a cruel disease !! But having this forum is a big help !
Yes the nerve pain is the worst pain know to man kind it says on some of the on line sites. I have had this pain for the last 20 years but it was always been tolerable and short lived, but something has it flaring big time. I am off all meds now for the last week and only taking Vit D. I am already feeling less pain, still can't say I am pain free but less is more as they say !
OMG 3-6 months of diet changes... wow. well I can go without food the whole time no problem, I can not eat for a year or two if I have too, but the TPN has soy, I can get this soy out completely but it is going to take more time, I start next week only having 2 days of soy and after that I will have it gone completely.
With no food going in me and no soy, wouldn't you think this D would stop ??? Boy ain't this a BEECH !!
That steroid is looking more and more tempting. I am so bad now in the evening I can't even stand up without D making an appearance. This is almost funny- Seriously I needed this like a hole in the head. I didn't even hardly eat when this came on 6 months ago and what I did eat was super healthy. I am really scratching my head on this..
I think it's the Rituxan that has done this. I will have my B cells start to return around Aug, I am holding on to hope that when those buggers come back this goes away... I just have to hang on till Aug..
You may be right about Rituxan. If that's the case we have slightly more than 4 months to go, and we'll be able to add 1 more medication to the list of drugs that can cause MC.
MC is the only disease that can cause D when nothing at all is being eaten. Some people (who don't have the disease) find that hard to believe.
Tex
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.
i know you dont want to, but to get some reduction in intensity and be able to leave the house maybe steroids for the short term may be worth considering...
doesnt have to be for long term,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
tex wrote:
MC is the only disease that can cause D when nothing at all is being eaten. Some people (who don't have the disease) find that hard to believe.
Tex
Oh that's just great TEX, so my idea to not eat for 2 years won't work... lol
Hey Tex if soy is being infused into my blood stream and not going into my gut a person could still flare?
I know the answer but my husband is making me ask this question.
Thanks for being a good sport and always responding to dumb questions.
most definitely it can - that is why MC'ers can not use bathroom items that are high in wheat, soy etc
the immune system reaction your body has that creates the D, is reacting to triggers from any source.
it could be pollen that you are breathing in, it could be the cleaning solution your dentist uses on your gums (that you dont ingest), it could be the makeup you are wearing or the moisteriser you are putting on.
I personally react worse to soy than gluten, I can not use any moisteriser or lipstick, lipbalm etc that has soy based ingredients.
when I was really inflammed, I would react to small amounts of soy contamination - tongs that touched food cooked in vegetable oil then touching my food items would cause reaction for me.
Tex will more likely be able to provide a more scientific explanation.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes-Apg wrote:i know you dont want to, but to get some reduction in intensity and be able to leave the house maybe steroids for the short term may be worth considering...
doesnt have to be for long term,
Hey gabes, there you are ! Did you have the car show this last weekend ? I looked in the photos this AM to see, but didn't find any. I am excited to hear all about it ~ the clothes, hats and of course the cars and you in your red beauty !
I know what you're saying in regards to the steroid, and believe I look at that darn bottle on the counter and I want to just go for it, but I just finished last week a 14 day course of some heavy duty IV fungal drugs and it about killed me to do that treatment, but it helped a lot and I fear the steroid will go beyond the mucosa tissues, I think I read somewhere that only 20% will actually go into the blood stream, but even a 2% going into my blood stream will start up the systemic fungus. I need to follow up on this with my immune doctor.
I can actually say that I am worse on that cholestyramine and wonder why that would be.
I am just blown away about how little research has been done on MC and not much info is given about diet. Although Mayo does list diet at the top of the list for treatment and in the 2nd part they list the drugs, so I guess that is good.
we did have the car show, i am still recovering from big weekend and have not had the time to go go through the photos etc.
we are still having summer temps (86F) so it was very tiring spending all weekend in the sun with not much shade
Sunday i was up at 4am to glam up the hair etc and didnt home until 5pm and was in bed by 6pm! that is a big day for me. and had to be at work to do complex payroll by 7.30am on Monday morning
am about to start working on the photos now...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
oh wow thank you Gabes for that great detailed response, and the reminder about lotions and make up, I don't use anything now, but if I ever leave my house I do use some make up- so I will see if you have a sticky in here with a list of make up and lotion brands that are safe.
Did you have the car show this last weekend ? I looked in the photos this AM to see, but didn't find any. I am excited to hear all about it ~ the clothes, hats and of course the cars and you in your red beauty !
