Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Gabes wrote:Interestingly after having the stoma installed, the GI specialist told mum she could eat anything she wanted. She started have gluten, dairy etc again. Within 2 years she was lethargic, joint pain, foggy brain etc. I told her to stop them for 3 months and see if she felt better, within 4 weeks she felt great! stopped taking meds for the pain and had vast increase in energy. heartburn went away and she stopped the meds for that.
Will doctors ever learn that MC affects the small intestine just as it affects the colon? Research data to prove that has been available for years, but apparently most GI specialists spend most of their reading time learning about new drugs, rather than learning important details about the diseases that they are expected to treat.
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.
Hi Judy, I would say it took me 2 years to feel more normal but I still struggled with cramping and motility problems. Turns out one of my safe foods was likely cross-contaminated and since I ate it almost daily it really slowed me down. Shortly after I eliminated it from my diet, I had a sigmoidoscopy and my biopsies showed that healing had occurred just like Tex describes above and I have really turned the corner to good health. That was at the 3 year mark. I was (and still am) GF, SF, DF and EF and never cheated while healing because I didn't want any flares or set-backs of any kind. Now, I finally have some predictability in my life again and that was my goal. It is worth all the sacrifices.
good luck,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thank you both. I have to tell you I’m a bit of an emotional wreck right now. I’ve only been on the Welbutrin about 4 days, so don’t know that it’s helping yet, now is the very restricted diet. And I too am having a tough time keeping up with the few boards I’m getting advice on.
Yesterday I had sweet potato for the second day in a row, and this morning I had an increase of D … I was so hoping I was ready.
Gabes, you seem to be a much more structured person that I am. I’m doing the journal, but whenever I venture on to a new food, I react. So then I try something else that’s been suggested and I guess that’s what’s getting me into trouble. However, I’m beginning to feel somewhat weak and lethargic. And I’m on information overload, hence the emotional runaway. Am I making sense? Today I'm adding a little almond butter for protein. Your mom's story was quite interesting. That, alone, will keep me motivated!
Tex, can you give me more information on the magnesium topical spray and the recommended dose that I would need? It would be wonderful it this would solve my RLS problem.
Thank you as well, Carol. This is so daunting to me, especially thinking of how long it will likely take me to get all of this since I'm not the best patient. But I'm hanging in. I know that eventually this will all be automatic for me. I'm just not there yet ...
It is very normal to react to a new ingredient. Just like a baby progressing from milk to solids, there will be changes in the poop.
I always advise to have small amount, egg cup size serve, wait 24 hours, have another small serve, wait 24 hrs, and then the third day have another small serve. If after the third day there are symptoms then the ingredient is not right for now.
Rest and nurture your body. Hope the week improves for you xo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Judy, After my big flare was over I found what I called my 'baseline" diet. Proven safe foods- for me that was chicken, turkey, carrots, rice, ground beef and red potatoes. yes it's very restrictive but it was safe. When I tested a new food I ate it in a smallish serving for 3 consecutive days. I kept everything else the same. Just like a research experiment-- you keep all conditions the same and only change 1 variable. If I was going to react to the food, it usually happened after the first serving. If I had no reaction after the 3rd day/serving then I would consider it safe and I'd go back to one or two days of my baseline diet before I'd pick another food to challenge. I should add I was already GF, SF, EF and DF--- I went gluten and dairy free as soon as I had a diagnosis. Later it was clear that soy was a problem and still will give me nausea and gurgling.
Maybe a more systematic strategy might make you feel less scattered. I remember feeling the way you are feeling now and getting more structured helped me a lot.
take care,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Judy,
This might not be what you were hoping to hear, but from my own experience and the experience of other people on this forum, those of us who have been most successful in getting better have found just a few safe foods and stuck with them, often for several months or more and then only added new foods slowly and carefully. It really is worthwhile to be disciplined and diligent about what you eat and to not rush things. My perspective is that life is much better when I can leave the house without fear of an accident even if it means that my diet is very limited. What can be viewed as deprivation can also be viewed as amazing good luck, that something as simple as dietary change can make a person healthy.
JFR wrote: What can be viewed as deprivation can also be viewed as amazing good luck, that something as simple as dietary change can make a person healthy.
Jean - you are so right! This should be my new mantra!
Carol and Jean are exactly right. When I knew for sure that I could never again eat gluten, soy, dairy and eggs, I was in denial. I think a lot of us go into denial, get sicker and then get serious. I was a real "foodie", loved to cook and loved all the foods that I was told to eliminate. It took a very long time to give up the struggle and find a small list of foods that I know I can eat without getting sick. The Paleo diet turned out to be what worked for me. I tried to keep eating some grains to help keep weight up but eventually gave them up. I no longer pine for pasta, risotto, cheese, etc etc etc.
It took all of 2+ years to gain remission and finally stop taking budesinide. I think it took so long because I kept trying to eat "safe" grains and rationalize eating things I knew weren't kind to my body. You have to surrender completely to a diet that is small, safe and consistent. I no longer crave those carbs that I thought I couldn't live without.
Gaining remission is possible. It takes patience, self-control, discipline and acceptance of a life style that can be difficult socially.
Good luck.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
I take 400 mg of magnesium citrate each day to prevent leg and foot cramps. But magnesium citrate in significant doses is a laxative, so most people who are in the recovery stage would not be able to use it. Gabes is the resident expert on magnesium supplementation. Here is what she recently posted in response to another member's questions:
in normal cases we need about 400mg to 600mg of magnesium per day,
if there is inflammation and other issues the usage goes up.
to correct deficiency you need 800mg-1000mg per day.
Alot of people here have managed to have high doses of magnesium via the spray and espom salt foot soaks - no need for the tablets... I am taking about 600mg orally (via a powder) and 600mg or more via the spray and foot soaks.
With the spray, i have a bottle by the loo, spray top of my legs every time i go. Spray neck, stomach and full legs morning and night.
I take a few of my supplements as lingual version - with the MC issues it is worth the extra outlay to optimise absorption.
_________________
Gabes Ryan
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.
Thank you, Tex. I've been taking the Magnesium Glycinate. I thought I remembered it as one that folks here had good results with. Correct me if I'm wrong.
You're correct about it's safety. Magnesium glycinate is claimed to be the safest form of magnesium supplement as far as the risk of causing D or any other reaction is concerned. IMO it may not be absorbed well enough though for someone whose diet is severely lacking in magnesium (such as mine). I found that taking 800 mg of magnesium glycinate per day would still result in severe leg and foot cramps most nights, after a few days of using it. On the other hand, 400 mg of magnesium citrate works fine for me. Apparently I absorb much more of it.
In your case, I agree that at this point at least, magnesium glycinate would be the safest oral supplement form. To prevent/control RLS though, you might need to supplement it with additional magnesium applied topically (in a spray or lotion). Of course a larger dose of magnesium glycinate might work, also. I'm not sure if larger doses of magnesium glycinate pose a risk of D or not.
You're very welcome.
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 take 600 mg of magnesium glycinate daily and it works well for me, never any d and no severe leg cramps either. I've been taking it for years. Others types of magnesium caused d for me in the past so I have stuck with what seems to work. As usual, YMMV.
OK, I clearly need more than I'm taking (240mg/night). I may go ahead and add another 120mg capsule and see how I do, maybe earlier in the day. BTW, my symptoms appear to be getting better. After 6 weeks, I do believe I'm about out of my flare (thank goodness!) Will still continue to be kind to my system, adhering to the GF, DF, EF, SF. I know I still have a lot of healing to do.
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