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The concerns and trials of one girl with microscopic colitis
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 127
User's local time:
2017 Dec 14 - 11:21 PM


Food Intolerances : GF/DF/SF,onions,garlic,veggies/fruits,seeds,eggs,spices
Location: Atlanta, GA

PostPosted: Fri Sep 29, 2017 3:56 pm    Post subject: Reply with quote

Jeanie, mine seems to run in cycles, OK for weeks, then something unknown kicks it off again. Tex did warn me that seasonal allergies plays a HUGE part in my problems also which is depressing because in Georgia, seasonal allergies are almost a year around problem for me. I know that for the first 6 to 9 months after my diagnosis when I was critical, Tex and Gabes held me together. They went thru every inch of my life, looked at all my meds, went thru every bite I was putting in my mouth, trying to find what was still making me so very sick. It was such a struggle for me because I had been so very sick to begin with. Now I still have those really bad days occasionally but I usually know what has caused them (oh, heck, not always......). But I still get very frustrated at how very very limited my diet is after this long. Sometimes I want "real food" so bad that I put it in my mouth, chew it up and spit it out and wash out my mouth real real good. Now isn't that stupid????? But that is how much I miss eating really good food. I try to cook GF/DF/SF interesting food but I miss the amazing ethnic foods I used to eat with all those seasonings that now make me sick. So my choice has had to be: give up all of those foods or sit on the toilet endlessly. There just is no choice for me. Give up the foods.

Very very few doctors understand. I have a great primary care doctor who is trying. But I'd say the vast majority do not as the vast majority of gastro docs do not. So just ignore what they say that is annoying and ignorant. Choose the best info. Get the best info on your disease from here. Oh I've had people tell me to stop believing in this site and that I will never do. But the people who told me that did not have MC. It is my intestines. I'll choose what I want to believe and how I choose to heal my body. Contact me any time, open forum or private message. I am retired, very home bound. Glad to hear from anyone that I can help with my vast knowledge of 2 years of experience and still fighting MC daily.

Gail in Atlanta
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Jeanie
Adélie Penguin
Adélie Penguin
United States

Joined: 19 Mar 2009

Posts: 108
User's local time:
2017 Dec 14 - 10:21 PM


Food Intolerances : Gluten, Casein
Location: Apple Valley, MN

PostPosted: Fri Sep 29, 2017 4:39 pm    Post subject: Reply with quote

Thanks again Gail. Good to hear from you and I surely wish we lived closer. I'm doing okay right now (knock on wood) but we never know do we! Last week I was at a friend's house after church for a brunch, She also avoids dairy because of her Crohn's. However, instead of cheese she had bought some "cheese" made of Tofu. I had a little of it and am wondering if that's what got me that day. I usually try to avoid soy. I tested ice cream by having a small amount and so far so good. I shall be very careful of that, though.

I moved to Minneapolis 60 years ago and soon after was diagnosed with allergy to Ragweed. I was raised in Duluth so less allergens up there but I did have problems and didn't know what from. Every fall in the Cities has been miserable. I took allergy shots for 15 years and decided that was enough. I know for sure that I was allergic to Lilacs. My mother always brought in bouquets in the spring and I always got a headace. Now I have about as much trouble in the Spring as in the Fall. Besides the hayfever, I have high cholesterol, high blood pressure and then about 12 years ago I was diagnosed with Type 2 Diabetes. I had Breast Cancer in 2007 and in December 2011 I found out I have Non Hodgkins Lymphoma. I take treatments twice weekly every since then with UVB light. More, but that's enough now!

Those food cravings drive you nuts sometime, don't they. People don't understand. Some think it's a fad probably because a lot of people are dropping gluten just to feel better. (no diagnosis) Early on a friend said "are you trying to cut back on gluten?" They just don't know. I'm so thankful I don't have pain but the worst part of all is those miserable accidents. I don't want it to control my life but it is downright scary. The worst part of my doctor's visit was when she thought it was a rectal issue. I think I may print up a bunch of examples of what has happened to others and maybe, just maybe she will realize it's worse than that! There is NO control! I also think she probably thinks I can't accept her suggestions but then she hasn't lived with my problems.) I have discovered that a lot of doctors do NOT like when you go on the internet. Well, unfortunately they get must of their info from the drug salesmen and you know how that turns out! I am so very thankful for this forum and helpful people like you!

Jean in Minnesota
_________________
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 127
User's local time:
2017 Dec 14 - 11:21 PM


Food Intolerances : GF/DF/SF,onions,garlic,veggies/fruits,seeds,eggs,spices
Location: Atlanta, GA

PostPosted: Tue Oct 03, 2017 3:37 pm    Post subject: Reply with quote

Jean, the seasonal allergies are really a problem for people with MC and I did not know that for at least 9 months after being diagnosed as I was fighting my way thru dietary problems, medication problems, etc. Of course, my gastro doc was no help at all, as we all realize. Wayne was the one to tip me off about the problem seasonal allergies can play in our intestinal problems - holy cow!!!! Can't believe how that works but it is really true and I have to be so very careful about when I work outside in the yard.

I have been an almond milk user for a very long time but still loved eating ice cream, real ice cream, but had to give that up after being diagnosed as I saw quickly how just a little of that would cause diarrhea. But there are some great almond milk ice creams and dairy free/soy free/gluten free ice creams and I honestly have adjusted to just enjoying them as a little treat here and there. I know I have to really restrict the amount of real and artificial sweetener I consume as that triggers MC also so I don't allow myself much of any of the sweets I love and crave. I do occasionally make a homemade bread that I put grated carrot or cooked cranberries or dried cooked fruit or a little finely chopped nuts or peanut butter in it. I have adjusted the recipe to be GF/DF/SF and it doesn't make me sick. But I only allow myself 2 slices a day at the most, although I could pig out and eat half a loaf.

You have a bunch of serious health issues!!!! Wow!!!! I do once a month gammaglobulin infusion and will do it for the rest of my life as my immune system has collapsed. I have lost all of my childhood immunities - should not be around babies or children or large crowds. I am wide open to all childhood illnesses. The infusions help me fight off pneumonia, upper respiratory infections, sinus infections, ear infections, etc. I do still take a flu shot annually with hopes that it helps me fight off the flu but no other immunizations work on me. I battle severe back pain and other pain from a car accident 15 years ago but nothing I can do about that except pain patches on my back. I don't sleep well at all, maybe 3 to 5 hours a day - good thing I'm retired. I did retire early due to pain and the fact that I hated my employer so much I was afraid of going postal. They threatened my job all the time because of my time spent in the bathroom with my diarrhea. Oh, screw them, I just went out on medical leave of absence and finally never went back. Yes, less SS per month but more peace of mind.

I am single/twice divorced, live with my daughter. Live like a hermit. Love to read. Reading helps keep me sane. It is the one activity people with MC can do, doesn't matter how bad their intestines are. So yes, I read all the time. I still find myself very tied to my house 27 months after being diagnosed. I do occasionally go to a concert or sporting event but those outings are very very rare and require many days of diet planning (lots of peanut butter and GF bread to create cement in my intestines) and tons of immodium. This is not what I had planned for retirement but this is life.

Gail in Atlanta
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7273
User's local time:
2017 Dec 15 - 2:21 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Tue Oct 03, 2017 4:26 pm    Post subject: Reply with quote

Quote:
Besides the hayfever, I have high cholesterol, high blood pressure and then about 12 years ago I was diagnosed with Type 2 Diabetes.


Jean, those health issues are very much related to excess inflammation and magnesium deficiency.

Since fixing nutritional deficiencies and lowering inflamamtion/toxins in my body I have resolved many chronic health issues, blood pressure, tachycardia, medium to high level interuption to kidney function, chronic histamine/allergy, onset of insulin resisistance.

I resolved life long allergy, hayfever, asthma issues once i fixed B6 and magnesium deficiency.
there is quite alot of published science about magnesium deficiency being a big contributer to the other health issues you mention.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Jeanie
Adélie Penguin
Adélie Penguin
United States

Joined: 19 Mar 2009

Posts: 108
User's local time:
2017 Dec 14 - 10:21 PM


Food Intolerances : Gluten, Casein
Location: Apple Valley, MN

PostPosted: Tue Oct 03, 2017 7:12 pm    Post subject: Reply with quote

Gail and Gabes, thanks much for your responses. I am currently doing better but who knows how long that will last. I had an aha moment thinking about the ice cream. I had avoided dairy in the beginning but have been using some more lately. I have been using almond milk for years and I still use butter and some cheese. But when I had more ice cream recently I suspected that was my problem. I had a small amount only once and have been better. Don't know for sure if that was it or not. I just can't pass up going out with the other widows after church on Sunday and so am hopefully protected by wearing the depends. I also started wearing them when I go square dancing. I really need that exercise and also enjoy being with other people, so I hope I don't have a disgusting flare!

A little note about the Magnesium Glycinate and also I have been taking the Methyl Guard that Tex uses. I was just out and waiting for my order. I was advised it would arrive on Sunday (yes, Sunday) and it didn't come. Then I got a notice that they could not deliver it because the receptable was blocked (huh?) and if I wanted it, I would have to contact somebody or other. I have a locked mailbox but the Post office CAN access it. Then in another message it said that it was supposedly delivered to Lakeville which is a city south of me. I had to wait until Monday to call the post office and there was some kind of a fiasco and several people had called. But, they said it would come on Monday. I did finally get it today in my mailbox. Silly thing, but I really was wanting it!! So we keep slugging away!

Gail, what is the ice cream you found and where? It sounds great for a treat. I should do some baking but have been lax about that. I buy double chocolate muffins (Udi's) from my Coop. Love them!

I'm contemplating sending info to my doctor. Who knows she might find someone else with my problems! At least let her know that my "explosions" do happen to other people too and it is NOT a rectal problem! And also that a different GI doctor might not be the answer. Again I'm so thankful for all of you and this forum!

Jean
_________________
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
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arizwldcat



Joined: 14 Oct 2010

Posts: 20
User's local time:
2017 Dec 14 - 10:21 PM


Food Intolerances : don't know
Location: Utah

PostPosted: Tue Oct 17, 2017 2:17 pm    Post subject: Reply with quote

Laughing forgive this late response, have been in a long remission and away from these boards. This is hilarious and so true!

And on a serious note (perhaps you’ve already discovered this; I hope so) when you’re having a baby so much stuff is coming out of you that no one cares or notices whether it’s blood or er, something else.

Thanks so much for the good hearty laugh.
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Kris
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 127
User's local time:
2017 Dec 14 - 11:21 PM


Food Intolerances : GF/DF/SF,onions,garlic,veggies/fruits,seeds,eggs,spices
Location: Atlanta, GA

PostPosted: Tue Oct 17, 2017 3:02 pm    Post subject: Reply with quote

Reply to Jeanie about GF/DF/SF ice cream - I buy it at Sprouts, which is a national chain of awesome stores that stock great little ice creams made by SO Delicious in the most amazing flavors. I only eat a little bit (not the big bowl of ice cream I used to love to eat) but it satisfies my craving for ice cream and sweets and I feel like I have had a wonderful desert. They carry a huge quantity of GF/SF/DF products in their stores - you just have to look around and find all of them - some in freezer case, some in fresh breads, some in canned areas, some in boxed products. But it is worth the hunt. I do not think their prices are worse than any other place. Their selection is HUGE.

As far as what gastro doctors will be a help or not, I'm thoroughly disgusted with them and unless it is critical and I end up back in the hospital, I am NOT going back. I have tried 3 different gastro docs. None have been any help at all. My greatest help and support comes from all the great people working this website. Without Gabes/Tex and others, I would not have survived my first year with MC. They know how much I struggled every single day, trying to find just 10 foods that would not make me violently sick. It is better, not great, after 27 months, but I will accept "better" as the best it can be.

The hardest part for me is how much this has forced me to become so very homebound, afraid of going anywhere, afraid of getting involved in any activities for fear of huge accidents. I have other immune issues that may be contributing to my struggles and I receive monthly treatments for that. It also limits what activities I could ever do - no contact with children, babies, anyone sick, no large crowds, etc. So I've become a solitary person who reads a lot of books at home. Not what I had planned for my retirement but it is what it is. There are so many other people in this world a lot worse off than me.

gail in Atlanta
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Jeanie
Adélie Penguin
Adélie Penguin
United States

Joined: 19 Mar 2009

Posts: 108
User's local time:
2017 Dec 14 - 10:21 PM


Food Intolerances : Gluten, Casein
Location: Apple Valley, MN

PostPosted: Tue Oct 17, 2017 4:31 pm    Post subject: Reply with quote

Thank you again Gail. Thanks for your reply on the ice cream. I will have to look for it. I still wish I could find a doctor that understood, but meanwhile I shall continue with the info I find here. Unless a doctor has it, it's not likely they can understand.

I did print out a lot of pages of info and brought it to her office. Well, if she did read it I have not heard anything. I did my best - I tried! I was hoping it may help someone else if she gets it! I have been taking precautions but hopefully won't have to stay home. It is scary at times.

My doctor pointed out that she has patients who have more problems than I do. Actually I haven't mentioned half of mine but that's not the point! I didn't think it was a competition!! I am thankful for whatever I can do! And for understanding friends.

Jean
_________________
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 127
User's local time:
2017 Dec 14 - 11:21 PM


Food Intolerances : GF/DF/SF,onions,garlic,veggies/fruits,seeds,eggs,spices
Location: Atlanta, GA

PostPosted: Wed Oct 18, 2017 3:40 am    Post subject: Reply with quote

Most family doctors have little understanding of MC, have received no training about it and just want to send us to gastro docs where we will receive very little support from them (as so very many of us have found). I don't think they mean to be cruel or show lack of understanding. They just have never been where we are and cannot begin to understand what this is like for us. My family doctor is one of the very few who has taken the time to read everything I have given him to try to understand what is going on with me, also to understand my medical history. He takes a tremendous amount of time with me every time I am in his office, shows so much kindness and compassion, willingness to learn and help. We are working thru my health problems together as a team and I am so thankful to have him as my doctor. It has been many years since I have had a doctor like this. Most are always watching the clock and trying to clear patients as fast as possible because that is what they have to do.

No, it is not a competition between patients about who has the worst problems or who needs help the most. When I am with my doctor I want to feel that I am the most important person at that time. I want to know that my problems are foremost in my doctor's mind and not being compared to other patient's problems.

Last month, I had my annual physical and all test results were very good. But mentally I knew I was not feeling good at all. I had been off of my Prozac for 2 years after being diagnosed with MC, hoping it was not contributing to MC problems. Had been put on Elavil (low dose) but it was not helping at all and I could feel depression dragging me down down down. I sat in my doctor's office and could not stop crying. I felt so stupid, helpless, like a 67 year old baby, crying. He called a gastro doc and asked could I go back on Prozac immediately and what dosage and I now feel so very much better. It isn't just physical things that drag us down, it is mental health issues. I know MC affects my mental health. I get depressed from being at home so much.

I am thankful for this website and the friends on it who lift me up when I am down.

gail in Atlanta
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