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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 117
User's local time:
2017 Sep 22 - 7:14 PM


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

PostPosted: Sat Apr 30, 2016 11:06 am    Post subject: inherited MC Reply with quote

Since MC has only recently been diagnosed in so many of us, mainly because doctors were not looking for it and did not do biopsies when they did colonoscopies, it is difficult to know how many of us inherited this from family members. I have family members who refuse to change eating habits, continue to drink alcohol and eat gluten, consider they have "nervous intestines" etc. For years I probably thought the same thing. I can remember any time I was under any kind of stress I had to head for the bathroom and watery diarrhea just poured out of me. Bad thunderstorms with chance of tornadoes? Diarrhea. Boss mad at me? Diarrhea. Argument with my spouse? Diarrhea. Accident in my car? Urge to have diarrhea but better not do that in my car. You get the picture. That went on for at least 20 years. But about 6 years ago uncontrollable diarrhea hit me, so bad I could not go to work. I took time off from work, trying to get it under control, at nothing, crackers and ginger ale only. No relief from diarrhea meds. Tried to go to work and had to stop at every bathroom at every gas station on that 45 mile drive to work. Then in and out of bathroom all day and was away from my desk so much they threatened my job. Had upper and lower GI run twice in two years and nothing wrong with me. Finally in desperation went on gluten free diet and diarrhea stopped immediately. Then no problems until last summer. This time I have no idea what triggered it but nothing would stop it and it was worse than ever until I ended up in ICU. But not until 6th day in hospital did they do the upper/lower GI with biopsies and it was after they sent me home, still just as sick, that they diagnosed me. And still doctor gave me bad info about when to return to eating normal food, except for gluten/dairy. Inheriting this problem and misdiagnosis 6 years ago did not help me. Continued incorrect info from my doctor does not help me. There is plenty of info in magazines/newspapers/TV/etc. about plain old IBS but that is not what we have. Treating us with probiotics, yogurt, eating grains, etc. is the worst that I could do to myself. I try to spread the word to come to this website for info. I wish the AARP Magazine and other health magazines would cover MC as a separate issue. It is a separate issue. And I think it is an inherited issue for so many of us. As time goes by, I think we will find that our siblings will develop it and our children will develop it. Maybe it is the food additives or the chemicals sprayed on foods or given to animals but we may never know. I'm not such a health nut that I can go grow all my own food and have farm animals. Nor can I afford to buy all natural food products but I can guess that it is possible there is something in my past. I was down-wind from the nuclear testing in the 1950's (I was born in 1950 and lived in St. Louis) and as a child they gathered our baby teeth for testing for radioactivity. Did more people from the midwest develop strange problems from being downwind? Who knows? I'm rambling. Thank you for letting me air my thoughts on why I think so many of us are developing this - my doctor says she is seeing about 20% of her patients with it.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30471
User's local time:
2017 Sep 22 - 6:14 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Apr 30, 2016 12:31 pm    Post subject: Reply with quote

I agree with you and I suspect that it won't be too much longer before doctors are forced to recognize that the disease is beginning to take on the characteristics of an epidemic of sorts. 20 % of patients is a huge number.

I can remember when doctors told patients who complained of chronic digestive problems that they just had a "nervous stomach" or a "spastic colon" or something similar. Eventually they decided that it sounded more sophisticated to call it "IBS". Laughing

Tex
_________________
cowboy

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.
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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1217
User's local time:
2017 Sep 22 - 4:14 PM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Mon May 02, 2016 6:02 pm    Post subject: Reply with quote

I couldn't agree with you more Gac, I feel this way more an more each day, it is such a disheartening feeling too.

This is a very separate syndrome, one I wish we could put our finger on better and point to what really causes it with utmost certainty.

Diet change is an important tool for management, but WHY did/does it start to begin with and why is it not something that can be 100% healed. This is where my mind goes to often regarding this.

I really don't want to live like this until the universe says my time is up....I'd much rather try to figure out where it came from and do something about it with some finality. If genetics are playing a big role in this then perhaps we don't have a prayer in heck clearing this up in our lifetime, but it sure would help for future generations if we could figure it out.
_________________
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
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Hunnigram

United States

Joined: 21 Sep 2016

Posts: 2
User's local time:
2017 Sep 22 - 4:14 PM


Food Intolerances : Eggs, dairy, Gluten, salads, fiber

PostPosted: Tue Sep 27, 2016 12:06 pm    Post subject: Not tolerating Budesonide Reply with quote

Hello... I am new to this forum. I am so grateful to read so many posts and gain knowledge of this disease. I was diagnosed with Collagenous Colitis at Mayo Clinic in Rochester, Man. on August 26the, 2016. The Doctor put me on Budesonide.
I have had undiagnosed out of control, explosive, diarrhea for 13 years. I have been going to the head of the GI department at Loma Linda University Medical Center in Loma Linda, California for 10 years. I have been hospitalized there 3 times for three weeks or more each time.
They have done numerous tests... had sent lab work etc. to Mayo Clinic each time. They were looking for a Carcinoid Tumor and had many nuclear testing done to try and find one. I had many of the symptoms.
The last hospital stay was in August of 2015. There was an Oncology Surgery staff of about 12 doctors... another large staff of GI doctors and another staff of Internal Medicine doctors trying to figure out what was causing my uncontrolled diarrhea. I had been on Octreotide injections for a Carcinoid Tumor for several years and taking up to 8 Lomitil a day and adding Immodium to that as well. I have lived this way for years. In order to leave the house, I had to take a lot of medicine to try and stop the diarrhea.
In August of 2015, nothing was helping and I became very sick. Couldn't keep food or even water in. I was hospitalized and the teams that I described earlier decided to do surgery to find the tumor. They said I lite up like a Christmas tree in the Nuclear scan. They removed 14 inches of intestines and 12 inches of colon and removed the Illeocecal valve and quite a bit of lymph nodes.
The surgeons feel as though they removed the Carcinoid Tumor... the GI group does not agree. The pathologist could not find a tumor in what they removed.
Before the surgery.....one of the GI doctors performed yet another Colonoscopy with biopsies and he said he thought I had Microscopic Colitis but no one would actually diagnose that.
My GI doctor wanted me to try Entocort but he would not make a diagnosis but just wanted me to try the medication to see if it would help.

I have had problems with taking Prednisone and Cortisone in the past and was reluctant to try it again without a diagnosis.

My husband decided we needed to go to Mayo Clinic in Rochester, Mn. to try and get a diagnosis. We left in a motorhome from California to Minnesota on August 11the for an appointment on August 23rd in Minnesota.
Mayo Clinic did a very thorough job of testing and another colonoscopy with biopsies and CT Scans etc. Many tests. They came up with a diagnosis of Collagenous Colitis and convinced me to try Budesonide. He prescribed 3 - 3MG capsules daily for two weeks.... then 2 - 3MG capsules daily for two weeks and then 1 - 3MG capsules for a month and send him a note through the patient portal and he would call me.

I sent a note when I was on the 1 capsule a day and was still needing to take 4 to 6 Lomitil a day as well to control diarrhea. So he had me go back up to 3 - 3 MG capsules a day.... I did that for 5 days and started having terrible side effects. Sent him another note and he called and had me drop it back down to 2 - 3 MG a day... I did that and still had bad side effects.... I went to 1 capsule a day... I was trying to see if I could take the medication if I was on a smaller dose but today I was so dizzy, nauseated, rapid heart beat....pain in stomach... terrible reflux.... many side effects still.

So I sent another note this morning.....did not take the 1 capsule and he called and told me I could stop and he would try giving me Pepto Bismol.
I believe it is a bigger dose because it is a prescription that he sent to the pharmacy. I am to call him in a month and let him know how I'm doing. He said there would be no side effects.

I'm sorry this is so long but I am asking if anyone has taken a larger prescription dose of Pepto Bismol and if so.... did it work for them.
I don't know how to use this wonderful site yet.... still learning. I hope I am doing it right. I tried to leave a message the other day but I don't think it went through. Thank you for listening to this long message. I felt I needed to get my story out there. I've had this for so long and am frustrated.

PS I did get the book... it was so helpful. I got the book after my GI at Loma Linda said you might have microscopic colitis but he would not give a positive diagnosis. So I looked it up and got the book and have been eliminating Gluten, Advil, Eggs, Soy, salads, fresh raw vegetables and it does help.
He mentioned there was a diet but he said it doesn't work. I did it anyway.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30471
User's local time:
2017 Sep 22 - 6:14 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Sep 27, 2016 12:38 pm    Post subject: Reply with quote

Hello,

Welcome to our Internet family. Wow! Apparently a lot of GI docs haven't made much progress in the past 16 years. I'm very sorry that you got the run-around from your doctors for 10 years.

16 years ago I went to my doc with the same symptoms. He decided that I had colon cancer and sent me to a GI specialist who agreed. I had all the tests, ending with a colonoscopy during which the GI doc failed to take biopsy samples. But he couldn't find any sign of cancer so he insisted there was nothing wrong with me and sent me home. I decided that the problems had to be caused by what I was eating and I eventually trimmed my diet way down and my symptoms faded away. One would think that GI specialists would be a lot better at treating MC by now, but apparently the wheels of progress turn very slowly in the GI departments of this country.

The strange part is that the Mayo Clinic website even recommends dietary treatment for MC. Apparently their GI docs don't even bother to read their own website.

The Pepto-Bismol treatment is very effective as medical treatments go, at about 85 % efficacy. The treatment specifies 8 tablets per day for 8 weeks. Most patients achieve remission in an average of about 2 weeks. However, your doctor's advice (that there are no side effects) is incorrect. Unfortunately a small percentage of patients develop neurological side effects such as tinnitus, balance issues, tunnel vision, etc. The greatest risk is tinnitus. Usually the symptoms are reversed when the treatment is ended, but in a few cases the tinnitus can be persistent if the treatment is not terminated soon enough. That said, success rates among the members here are rather good — at least as good as any other medication prescribed to treat MC. However, unless the patient has made the necessary diet changes to avoid their inflammatory foods when the treatment is begun, relapse rates are high during the weeks after the treatment is ended.

The key to successfully controlling MC is to totally avoid even tiny traces of all foods (and all medications) that cause our immune system to produce antibodies. It's as simple as that. Of course unfortunately, avoiding all traces of those foods is not so easy, unless we avoid all processed foods and prepare all our food at home, from scratch. And many medications have been shown to cause MC, including NSAIDs, PPIs, SSRIs, SNRIs, other antidepressants and anti-anxiety medications, bisphosphonates, antibiotics, beta blockers, ACE inhibitors, and even HRTs, for example. Are you using any of these?

Controlling our symptoms by diet is really the only practical option we have though, unless we want to take powerful drugs to suppress our immune system for the rest of our life, and those drugs don't always work so well, in addition to imposing serious long-term health risks.

Again, welcome aboard, and please feel free to ask anything.

Tex
_________________
cowboy

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.
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 117
User's local time:
2017 Sep 22 - 7:14 PM


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

PostPosted: Tue Sep 27, 2016 1:24 pm    Post subject: Reply with quote

I have not had the misfortune to be as sick as you are for as long so my heart goes out to you for this lengthy struggle and battle you are fighting. I can tell you that you will get your best information from this support group and the people who are fighting the same battle, not from doctors, who do not have what we have. I gave up on my doctor as he information was so bad. I know she didn't do it to be mean or incompetent. Doctors are just not familiar with MC. Those of us who write on this site are struggling with it and continue to fight day by day. Some days are good, then for whatever reason, we have a string of bad days/weeks/months.

Like Tex said, only eat food you prepare from scratch. And simplify what you eat down to only a very very few foods, ones that are very bland, no seasonings, nothing course or spicy or anything that could possibly make you sick. Pick one food and see if you can eat it without getting sick. If it sets okay, then a week later, add one other bland food. I was diagnosed 15 months ago and my diet consists of about 10 total items that I can eat and they are all very boring but at least I am not violently sick all the time. I very seldom leave the house and have to eat very cautiously in preparation for days when I have to go somewhere. Diapers are our friend!!!!

But life as I once knew it is not what I know now. I've had to accept that and it has been very difficult for me to do that. I am 66 and retired so I don't have to go anywhere. I've learned to enjoy time at home. But the biggest thing is finding some foods that do not make you sick. I quit Budesonide a couple months ago after taking it for almost a year. I now take about 4 to 8 immodium on a good day, 8 to 12 on a bad day. I do not take Pepto any more.

Listen to what Tex and Gabes and others tell you to do and follow it carefully.

Your MC family is here for you.
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brandy
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2011

Posts: 1915
User's local time:
2017 Sep 22 - 6:14 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Tue Sep 27, 2016 3:10 pm    Post subject: Reply with quote

Hi H,

I just wanted to say welcome! You are at the right place. I see you already have Tex's book. If you have not yet taken a look at our microscopic foundation website I think there is good info on there also. http://www.microscopiccolitisfoundation.org/


Quote:
The strange part is that the Mayo Clinic website even recommends dietary treatment for MC. Apparently their GI docs don't even bother to read their own website.
rotflmao

Brandy
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Hunnigram

United States

Joined: 21 Sep 2016

Posts: 2
User's local time:
2017 Sep 22 - 4:14 PM


Food Intolerances : Eggs, dairy, Gluten, salads, fiber

PostPosted: Sat Oct 01, 2016 12:12 pm    Post subject: Thank You Reply with quote

Hi

I just wanted to say thank you to Tex, gac, and brandy for your welcome and good advice. Thank you for caring and responding to my post.

Tex, I am glad to know the information on Pepto Bismol. I just finished tapering off the Budesonide....so happy to be off of that and today started the Pepto Bismol. The Doctor at Mayo prescribed 3 - tablets of Pepto Bismol and call him in one month to let him know how I am doing.

Before the visit to Mayo Clinic and taking the Budesonide... I tried to maintain the diarrhea with Lomitil and Immodium. Some days I could get away with 3 to 4 Lomitil and 3 to 4 Immodium a day.... other days I would need 8 Lomitil a day and 3 Immodium a day. On bad days nothing would help.

I bought the Microscopic Colitis Book about 3 months ago and started eliminating different foods from my diet along with no Gluten and no Advil. This helped me quite a bit and I will continue working with the diet. I believe the diet has helped me more than any of the medication.
It had helped me take less Lomitil and Immodium

I am happy to be in this forum and am excited to hear and learn more about this disease. Thank you all again.

Marilyn Oh...my name is Marilyn... I just used Hunnigram for fun.. My granddaughter calls my Hunny.... she is now 20 and still calls me Hunny...

My husband and I have taken care of her since she was a baby while our daughter worked.... so we helped raise her. My husband calls me Honey and so she just has always called me Hunny.
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 117
User's local time:
2017 Sep 22 - 7:14 PM


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

PostPosted: Sat Oct 01, 2016 12:42 pm    Post subject: Reply with quote

Marilyn, just a note to let you know that every day is a different day on what foods my intestines will tolerate. And this week I am back to square one so I don't have to stay in the bathroom and I'm eating what my intestines tolerate the best and that is gluten free bread and peanut butter - every single meal!!!! Sounds boring but I'd rather be bored than running for the bathroom, having horrible intestinal cramps, chills, having to take all that immodium, and feeling so bad. Feeling better without the other foods I was eating (just some meat, white potatoes, carrots but they did not set well this time). So for now, back to basics again. I seem to have to do this over and over again. But I will not take the Budesonide again.

I also realize fall seasonal allergies are bothering me and that may be causing problems in my intestines also as I was doing some work outside this past week and exposed to whatever is in the air here.

Stuck in the house again!!!!
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kalanit

unknown IP

Joined: 01 Nov 2016
Posts: 2
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2017 Sep 22 - 6:14 PM




PostPosted: Tue Nov 01, 2016 8:46 am    Post subject: whay they getting you of from zoloft? Reply with quote

????
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