I have decided in my best interest to let Dr. Fine go

[dolson]

I wasn't going to bring it up because I like Dr. Fine. He is a GI researcher and doctor, but in my best interest it's best I let him go. Dr. Fine is suffering just like us. He has Microscopic Colitis. I have done what he has told me and it has not helped. I have read many Specific Carbohydrate Diet books he requested and it's made me more confused. That's the last thing I need - more confusion. He tells me what to eat what not to eat but does not explain why and I'm paying him. I like Dr. Fine, he is a nice person, caring, but I am more confused than ever. I'm not bashing Dr. Fine, I'm trying to heal myself but his method is not working. I buy his pre and probiotics, enzymes, two washouts, blueberry husk drinks, and test kit to determine what's making me sick. That's a good thing. I hope I can understand it. I need to know what I am allergic to and what's making me ill.

Dr. Fine is a caring person and he's suffering too. I wish him the best, but I am CONFUSED.

[Gabes-Apg]

that is a big decision for you, hugs for being brave, takes lots of energy when you are feeling poorly.

from observation of the couple of thousand of members here, things like pre and probiotics in the early stages of healing does not work

hope the healing journey gets a bit easier for you now

[Erica P-G]

Because everyone is different I am sure it is hard to address each individual specifically with this MC. What works for some just doesn't work for others, and you will need to fine tune basic things about yourself due to those factors.

There have been some specific things to choose from at this site due to the many logged responses to things so hopefully you are able to find those things that will specifically work for you so that you can get on a healing journey soon.

Keep asking the questions and browsing this site...the healing takes time and baby steps.

[carolm]

In terms of what to eat and what not to eat, most of us start with a few foods that we are sure are safe then build up our diets from that baseline, one food at a time. For me, the Enterolab tests put me on a more definite path to healing. It eliminated some significant guesswork. Did you have any of the tests run? (I apologize if you've already reported test results and I missed them).

Carol

[barbieAnn]

I totally understand what you are saying. I too, have undergone the Enterolab tests and have been following a strict diet for almost a year now with no relief whatsoever. I eat basic foods that are supposed to be my safe foods and still having major issues. I can eat the exact same foods from one week to the next with different reactions each time. It's just mind-boggling. I think it's great that so many people on this site have found success - it's wonderful for them. But after almost two years of struggling - I am at my wits end. I honestly don't know what to do anymore - I am going to yet another doc for help, but I don't have much faith in docs at this point. I too, have been reading book after book on diets for inflammatory bowel disease, microscopic colitis, etc, and I am doing exactly what I should be doing but have no relief. I understand that what works for one person will not necessarily work for another, so we need to find out for ourselves, what we can and cannot tolerate - by trial and error. But my Enterolab tests - my safe foods do not appear to be safe for me.

[dolson]

I am from the mindset what Tex told me. We can be doing everything right, maintain our proper diet, take antihistamines, magnesium, Vit B, be happy and calm and BAM...Microscopic Colitis has hit again. This disease has a mind all it's own. It's a monster living inside us and decides when to raise it's ugly head.

The word FOOD puts me into a panic mode. My personality becomes ugly and I start arguing. I am trying to get out of my body. I want OUT! I think my Dad had the same thing and would yell, scream, and throw glass and break it into a million pieces. Hard living when you're a child and scared to death of your father. Now I feel the same way. Yes, I came from bad genes on both sides of my family. Mom had the tremors and all her 11 brothers and sisters exhibited signs of a movement disorder. Now my cousins are showing signs. Only takes one parent. But I will take Dystonia over Microscopic Colitis any day of the week. I think this disease is worse.

I am getting ready to send off my enterolab test to Dr. Fine, but I don't expect a miracle. I expect the same misery I am having now. I won't even understand it. I am tired of having my stomach/colon gurgling, diarrhea and losing gallons of fluid, fatigue, irritability, hair loss again, brain fog, etc. This is a hard row to hoe. This is the worst disease I've experienced and doctors can't help or care not to help. At least I had support and doctors who cared when Dystonia struck and we had only 300,000 cases or a little more effected by this movement disorder. MC suffers are in the millions and then count the ones who haven't been diagnosed. GI specials don't care or don't understand diet and researchers need to get on the ball and help us.

I say thanks to all your comments. Gabes, thanks for calling me brave. Sometimes we have to take the bull by the horns and be in charge. BarbieAnn, since we are similar, can we remain close? We are not being helped by much. At least we have Tex. Thank God for him. Thank you Tex. I love you!

[Patricia]

Hugs to all of you

This disease takes a lot of time (to research everything as well as for trial and error), courage, patience, and energy (when we have no energy at all). But it is SO WORTH IT to figure out what you can and cannot have. I wish the disease came with an individual manual, listing my own safe and not safe foods, since they are different for everyone.

I did the Enterolab tests and they were helpful. Most helpful, however, was the wonderful advice and input and encouragement I received from the caring and extremely knowledgeable people on this forum.

After the Enterolab results came back, I left away gluten, soy, dairy, and eggs. However, I did not notice much of a difference. After a few more weeks of struggling like that, I went on an elimination diet. It felt scary to me. I was afraid of not having enough nutrients (but hey, everything just ran through me anyway and I was not absorbing anything, it couldn't get any worse), I was afraid of the diet being boring, I was afraid of the diet not working, I was afraid of losing even more weight. All the fears were completely unfounded. Initially, I only ate sweet potatoes, lamb, and 1 banana a day. I had sweet potatoes and/or lamb for breakfast, lunch, and dinner, or anytime of the day. I started feeling better. After a few weeks, I started adding one new food, after another week, another food. I took it SUPER SLOW. At one point I exchanged the sweet potatoes for regular potatoes because I realized that the sweet potatoes started bothering me. I also added other proteins such as chicken, tuna, cod. The Enterolab results were very helpful for adding new foods without being terrified.

I kept an excel sheet during the ENTIRE trial and error period (for about 1.5 years) and made entries several times a day. I entered everything I ate (including vitamin D, magnesium tablets, or any other medication). As for the food, I didn't list a piece of pumpkin pie as pumpkin pie but all the different ingredients in it (pumpkin, egg replacer, brown sugar, etc.). I also listed my symptoms (I had a lot of pain, so I listed hip pain, rib pain, abdominal pain, etc.), bloating, gas, how many bowel movements and what consistency (according to the Bristol stool scale), my anxiety level, how I felt in general. It was honestly a pain in the you know where to keep such a detailed log. But over time, adding such few foods to my diet in such a slow manner, and entering everything in detail to my excel sheet, resulted in a visual picture of what my body now approves of and what it doesn't.

It is super difficult to analyze what you tolerate and what you don't if you have more than a few variables. The fewer foods for the first few weeks, the better. Even now, a few years in, with a very good understanding of what I can or cannot tolerate, every so often I am surprised because I have diarrhea and I don't know what caused it as I had two new ingredients the day before, or I had a new ingredient but also happened to eat out that same day, and then I wonder what it was. Another issue is that I can have a bit of sweets (sugar, honey, dates) and I am fine. However, if I have a bit of sweets for a few days in a row, I am in trouble. So I try to avoid any kind of sweets on 90% of the days. Any kind of bread, focaccia, pie crust, even if I made it myself with perfectly safe ingredients, does not make me feel good. I don't get diarrhea, but the rumbling starts, the bloating, and I just don't think it is worth it. And sometimes, it is not what I ate, but my symptoms are caused by stress (which I am 100% sure was the initial trigger for MC for me).

Don't give up. Keep reading, take your time, find ways to cope (a meditation class and guided meditations have helped me tremendously, and I never did meditations before all of this) and reduce stress if possible.

Love, Patricia

[Gabes-Apg]

great reply Patricia!

[dolson]

I am copying your note so I can do the same. I will put it on my corkboard and read it from time to time. I have never thought of meditation classes, but that's a good idea. I have been to therapists, but they are useless. No help at all. One thing I have going for me is...I'm a Fighter. Leaned that from my family. Fighting morning, noon, and night. I don't know how to cope unless I'm fighting. No wonder I'm sick. I can't let things go. Fight, Fight, Fight that all I know. Once I get my test back from Dr. Fine, I will have more answers, but I don't want to get my hopes up for a remission. I think God is punishing me. I go to church right across from my late grandparents torn down home hoping they will help me up in heaven. I am an Olson - Norwegian just like my grandfather. He was calm and a cool cumcumber but had a rough life because he was adopted and I think abused. I think he loved me because I look just like him.

Thanks Patricia for the note. I see you are from Pittsburg. We lived in Selinsgrove, PA, and my husband taught at Susquehannah University. I loved Pennsylvania and loved the people. My best friend lives in Middleburg, PA, near Beavertown where Davy Jones of the Monkees lived. I got to visit him on his farm. My friend's relative sold him the farm and yellow farm house. I got to hear him sing his best hits on top of a mountain because he got a DUI. So he sang for free. Lucky us. I miss Pennsylvania. Let's keep in touch.

[Gabes-Apg]

Dorothy
firstly - God is not punishing you, your past is not punishing you. MC is not a punishment. for me MC is a wonderful wonderful gift. It gave me my life back. I was able to figure out what is important, what is worthy of my time and energy, I met amazing people to share this journey with!! Please please embrace it as a gift not a punishment

meditation, podcasts, audiobooks have been a BIG BIG part of my healing journey!!


- podcasts are FREE!!! lots of interesting topics I play them while i am doing gardening, housework, my cook ups, while doing relaxing activities like training budgie parakeets, colouring in, sewing etc
- functional health via things like Dave Asprey bulletproof, Tony Wrighton Zestology etc
- interesting interviews of people that have adverse lives whether it be health, or sporting life, or becoming a success in their industry (i listen to mostly aussie based providers )
- cyber world - things like endless thread, reply all,

if you dont like the episode - delete! if you dont like the main interviewer/speaker delete!
there are some that have been soo good I have replayed the episode!


- meditation / breathing exercises
again there are loads of online resources (free, cheap, and mid range pricing) lots of support for helping to relax, sleep, etc
start with 2 mins a day, a week later to go 5 mins a day, the next week, go to 10 mins a day....
playing things like this when you are preparing meals will help calm current unsettlements so that your body is 'Relaxed' for meal preparation and eating (a very key thing for optimal digestion etc)

- loads of religion based topics via audio books / podcasts
find some calming supportive items to listen to

- audiobooks
another fantastic resource, i love biographys
lots of resources allow you to sample the book before purchasing (so you can see if you like the tone/voice of the speaker!!)

[tommyboywalker]

I have Microscopic Colitis and Complex Regional Pain Syndrome and also some foot neuropathy.

My MC is now in check, thanks in large part to all of you in this forum and my blind luck of getting a GI doctor who gets it and was in lock step with me on how to treat it.

My CRPS though is a tough one. I have burning pain 24 hours a day. Some days it is relatively tolerable, some days it really gets my attention and takes the joy from the day and other days I don't even think about leaving the house. CRPS has a mind of its own. A lot like Microscopic Colitis!

A number of years ago, I discovered "mindfulness meditation". It is one of the most important tools in my tool box. It helps me control my CRPS and I attribute it to also helping me with putting my MC in check as well.

The importance of the mind/body connection cannot be overstated. Commit this prior sentence to your memory.

As others have mentioned, it is absolutely positively something to look into as Gabes and Patricia and others have mentioned. It's free and for me, it's usually the best 15 minutes of my day......

I wish all the best to you and that you start seeing improvement soon. I can tell you are motivated. And please keep us posted!

[JFR]

What Gabes said is true for me too. I have come to look at MC as a gift. It forced me to look at my life and determine what was important and what wasn't important. Working with my mind has been as important if not more important than working with my body through the food choices I make. Years into this and I still eat a very limited diet. I look at food strictly as a means to sustain my physical body but not as a source of entertainment or pleasure. I am the opposite of a foodie. I eat for my health and that's it. I eat strictly single ingredient foods, nothing with a label and an ingredient list. What really turned my attitude around was one day it occurred to me that saying "why me? was not very helpful or beneficial. In fact it was arrogant. Why should I believe that I should be exempt from bad things happening to me? Instead I started thinking "why not me?" That let me turn away from an ongoing pity party to an acceptance of what is. Strict adherence to a very limited diet (for one month or so at the worst of this I ate only ground lamb) was where i started with dietary change. Spiritual practice to turn my mind around started with mindfulness meditation but eventually led to the study and practice of Buddhism being the center of my life. I am not suggesting that everyone has to become a Buddhist but for me this has been part of the gift that came about by developing MC. I have learned to be content, satisfied with what I have. It's a good way to live.

Jean

[brandy]

Patricia said

Initially, I only ate sweet potatoes, lamb, and 1 banana a day. I had sweet potatoes and/or lamb for breakfast, lunch, and dinner, or anytime of the day. I started feeling better. After a few weeks, I started adding one new food, after another week, another food. I took it SUPER SLOW. At one point I exchanged the sweet potatoes for regular potatoes because I realized that the sweet potatoes started bothering me. I also added other proteins such as chicken, tuna, cod. The Enterolab results were very helpful for adding new foods without being terrified.

Such a great post I thought it was important to repeat it. Patricia's steps were what got me into remission. Twice.

Tommy, have you read the John Sarno books? I like his Healing Back Pain the Mind Body Connection. I think his steps
apply for pain elsewhere too. He has a more general book (for all over body pain) but I like his Healing BAck Pain book the best.

It is somewhat dated in that it was written awhile back but I think his steps still hold true. He is kind of a last resort
M.D for people in pain. The book is really about meditation/mind control, i.e. new agey so might not be for everyone.

[Janie]

Everyone has written wonderful ideas. When I feel down I repeat to myself a few prayers and say God is walking beside me and carries me when I ask him to. It calms me the most above anything else.

[Patricia]

As soon as the diarrhea, rumbling, bloating starts, I go back to super safe foods, which means no alcohol, no sugar, and what Jean wrote: only one-ingredient foods, nothing with a label or a list of ingredients.

I was seeing a psychologist while working through grief after the death of my best friend, dealing with not yet diagnosed MC symptoms, and eventually the MC diagnosis (all within a few months). It was very helpful to me to learn to differentiate between my emotions, my thoughts, my anxiety, and to learn to not believe everything I think. He recommended that I attend an eight-week meditation-based stress reduction class (MBSR). I have recommended this MBSR class (offered in many cities) to many people in the meantime. I still sometimes attend meditation evenings in the same location. I also love the app “10% happier”. It costs $79 a year (there is a seven-day free trial) and, for me, it is worth every cent. It has many excellent and short videos regarding different emotions and how to deal with them as well as guided meditations of any length. Meditation has helped me be with whatever is in the moment, to accept my emotions and know they will pass like clouds in the sky, to not worry endlessly but to be able to redirect my thoughts, to be more in charge of my own brain. And that has definitely helped me cope with MC and also see its positive sides and not just the negative ones.

Love, Patricia