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Terre wrote:Also, I've noticed that some posts indicate that their D is worse in the AM and for the most part that is also true for me.....why is that?
That happens because similar to the the rest of the body, the digestive system tries to rest during the night (after finishing up any digestive processes that were not completed during the day) and this amounts to a significant number of hours with a relatively low activity level. Upon awakening/arising, the digestive system also becomes more active, and it's a natural instinct to purge the bowels after a long period of rest. If you watch animals you will see that this is a natural part of their routine. MC just adds urgency to that ritual.
I've never taken cholestyramine, but after reading many posts on the topic, I get the impression that if it is going to help, most users will see significant improvement within 2 or 3 weeks.
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.
Once again, your explanation makes perfect sense on why D is worse in the AM.
I would have hoped I could see improvement of some sort by now....I may give it the full 3 weeks to say I gave it a chance. Then, it's back to trying the Welchol and hope that the side effects (blurry vision & severe back pain) were just a fluke or begin the Budesonide (which I haven't tried). I can tell I'm going to be one of those difficult to get into remission. I'm still hopeful (just tired).
UGH! I just got a call from a "friend of a friend" who has MC. She went into spontaneous remission for a long while and then it hit and put her in the hospital. While in the hospital, they started her on Cholestyramine and she continued on it twice a day when she returned home. Her prescription box was the same as mine (60 packets)....she told me that she took a full box and part of another box and now she is back in remission. She said that she never changed what she ate, except at the beginning she couldn't eat corn, but now she is able to eat it with no problem.
How in the world if this is due to inflammation can someone go into remission without changing what they are eating? She said her doc told her to stop her supplements and take probiotics....she is no longer taking the probiotics and is back on her supplements with no problems.
She wasn't bragging, she was just checking on me to see how I was doing on the med and shared her experience. I'm proud for her and for anyone who reaches remission.
She encouraged me to stay the course with the med for a while longer, because it was a bit before she saw results and she was taking it twice a day from the beginning. She had no side effects and understands that the tinnitus is an issue for me....so I may or may not stay on it.
With all of the IBDs, spontaneous remission is possible at any time. The problem with MC is that very few of us are lucky enough to have that happen to us, and when it does happen there's no way to predict if the remission will last for 2 days or 2 years. Spontaneous remission seems to occur much more frequently with the other IBDs. We have several members who regularly enjoy fairly long periods of spontaneous remission. But the percentage of members in this category is extremely low, unfortunately.
If we are able to achieve remission by diet changes then we only have to be concerned about relapses if we eat something we shouldn't or our stress load becomes too great.
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.
Terre
there are so many factors that impact inflammation reactions, and further to this, the bodies ability to heal.
nutritional deficiencies - basics like Vit D3 and magnesium
methylation cycle - this impacts a whole range of things in the body, cell health, use of B group vitamins, detoxing, inflammation reactions, adrenal health, thyroid health etc
environmental factors - lifelong impacts of diet, medications, pollution, biotoxins, and various other enviro factors,
stress - what emotional, mental, physical stress events have happened in our lives, and how we manage stress in the here and now
genetics - genetics are impacted by all the factors above - and the events of our parents before we are even conceived
the complex matrix of all these factors is why one persons journey is so different to anothers
why a med can work fantastic for one person and cause major grief for another...
sorry you are having tough time.. you are not alone, there are many that have a tough journey to remission..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tex and Gabes....you are a blessing to me. I know things could be so much worse than this and most of the time I hold onto that fact. Other times....oh well, you get it.
Just emotional today....want to see some evidence of improvement (which is stress in itself)....just like everyone else on this site. I told myself at the first of the year that I was going to stick with this and that's my intent. My husband wants me to see another gastro or go to Mayo....he wants me well and to feel good again. He doesn't get the fact that there's no point in any of that....there is no magic pill.
Not to be all doom and gloom but since I've been on the board there have been a couple of people that have gone into spontaneous remission and eat whatever but several years later the person resurfaces with a more serious case of MC. The friend of the friend is probably more at a risk of relapse down the road than the folks plugging away at our diet on a day to day basis if that makes sense. I don't think there is any long term free lunch with MC.
Hugs Brandy. Not all doom and gloom....just fact. I'm picking myself up now and dusting off....I've decided that I'm giving the Cholestyramine another week and see where that takes me (unless the ringing gets worse).
Terre wrote:My husband wants me to see another gastro or go to Mayo....he wants me well and to feel good again. He doesn't get the fact that there's no point in any of that....there is no magic pill.
You are right on target. The GI department at the Mayo is rated as the best in the nation year after year. We have many members who have gone to the Mayo hoping to find their solution there. One would think that it would be the place to go with an IBD. But unfortunately, to date at least, every single one of them has come away disappointed.
They're also frustrated by the fact that they discovered that they know more about the disease than the doctors who treated them while they were there. But that's not surprising because here we learn more about the disease every day. It's our number 1 priority. That doesn't happen at any of the major medical institutions because the doctors there spend roughly 99.9 % of their time dealing with other diseases, so they don't have much time to learn anything new about MC.
There's no greater incentive for learning more about a disease than having the disease oneself, and none of those doctors have MC. The only GI specialist I am aware of who actually has MC is Doctor Kenneth Fine, the founder of EnteroLab.
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 did see that post....I did not however see Deb's reply. I think I may have read another post along the way regarding Mayo. We can hold out hope that maybe one day those suffering with IBD's will have better results when dealing with physicians. As you pointed out they can't focus only on IBD's due to other diseases and the way healthcare is changing (kinda scary).
Terre
I was just sharing this article for someone and found this bit interesting - if you react to corn, this might be why you are struggling to get improvements
Questran derived from wheat, but according to the manufacturer is gluten free. It is does contain corn products.
Feeling Worse: If taking Questran makes you feel as if all of your typical symptoms are WORSE, Dr Shoemaker’s model would suggest that this is an immune system reaction to the toxins being released. His data indicate that this effect will last several days and will be worse in people who have had Lyme disease. It WILL pass eventually. There is no requirement that you continue to take a medicine that makes you feel ill. However, if the Questran is working as Dr Shoemaker believes, it gradually lead to a correction of your visual contrast sensitivity test (VCS ) and an improvement in your overall symptom picture. I have found this to be true for many patients.
Dr Shoemaker and the reference to VCS is linked to Mold/Biotoxin issues.
one plausable reason for your reactions is your body could be clearing bacteria/parasite/biotoxins
the sucky part of all this - we have no easy way to know if this is the case
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
In line with Gabe's post, I'm guessing that the possible gluten risk mentioned there is due to the fact that Questran (cholestyramine) Light contains maltodextrin, which can be made from various grains, including wheat or barley. In the U. S. however, maltodextrin is assumed to be made from corn (under FDA labeling regulations) unless a different source is specified on the label. If no other grain is listed, then convention dictates that it must be made from corn.
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.
Gabes & Tex....you two are soooooo smart (that's a compliment)!
I don't think I have an issue with corn and my Enterolab shows no immunological reaction. The Cholestyramine I am taking is not the Light....I made sure I did not get the sugar free, as I read unless there was a reason to take the Light that you should take the regular formula.
Today marks the day I said I would discontinue if I saw no improvement, but I have decided to finish out the prescription, as the tinnitus has not gotten any worse (not better, but not worse). If at the end the D is no better, then I'll move on to plan "B".
Ha! Well, if there is an answer to come, I would bet it starts with all the helpful folks on this site. I'm thankful for this safe place where we can ask questions and learn what others have had success with and hope one of them works for me (and others).
