The face of Microscopic Colitis in 2012

aaronalexander · Post by **aaronalexander** » Thu Jun 07, 2012 6:12 pm

Hello everyone!

I'm writing from Sao Paulo, Brazil. My name is Aaron and I'm a Canadian who has been living overseas for the last 5 years. As soon as I arrived in my new home (Mexico), 5 years ago, my digestive issues started. It was (and still is) a roller-coaster ride trying to understand what was been going on and trying to find food that I could eat, all the while moving from one place to the next (as my job and passion requires). It wasn't until I was living in Dubai, when I took a trip to Hong Kong and got a nasty parasite that things got much worse. The struggles only became more frustrating - I tried so many things, elimination diets, probiotics, food intolerance tests, anti-candida diets, the list goes on. I've been vegetarian for 18 years, and realized that soy was one of the culprits. I reintroduced fish, but tried desperately to avoid other "meats." I reduced my diet to the basics - finding comfort from eating simple foods. Unfortunately, my small body only kept getting smaller.

Finally, in my new home, Sao Paulo, I've had the time and energy to devote to seeing a specialist, who is very traditional in his thinking, but was successful in getting to the root of my problems. I recently had a colonoscopy & biopsy and was diagnosed with microscopic colitis. So here I am. My doctor has prescribed "Pentasa Sachet" (the name in portuguese), 2 g a day. He tells me my vegetarianism will not work with my condition, and that I should eat simple foods (rice, potatoes) and meat. I've been on the meds for a month and so far, I haven't noticed a difference, maybe something slight. Unfortunately, last week I was very busy with work, didn't sleep right, got a cold and took some medicine (cold effects, tylenol sinus). That, coupled with eating a few bagels, has sent me into a horrible flare up. For me, I get a very strange, almost puffy/numb feeling around my eyes, and my head feels completely foggy, like mush. I'm also horribly exhausted and anxious.

I've taken some time to look through a lot of this site, the forums, and the posting. I see a lot of the information is from 2005 and 2006. I'm just wondering if someone could provide a summarized update? And any advice? Does anyone else suffer from the same strange face/brain freeze? Anyone else taking Pentasa?

Thanks in advance,
Aaron

mzh · Post by **mzh** » Thu Jun 07, 2012 6:25 pm

Welcome to our potty people club, Aaron!

Summarizing what's on this forum would be impossible; the array of topics we discuss is extraordinarily diverse. But if anyone can help you it's Tex, the forum owner. I'm sure he'll pop in soon with responses to your questions.

Oh, the search function might be very helpful for you too.

My guess is that you are gluten-sensitive. Have you cut out gluten? That alone can cause everything from D, to itching, to brain fog, to aches and pains and more.

Post by **tex** » Thu Jun 07, 2012 6:40 pm

Hi Aaron,

Welcome to the board. I'm just finishing writing a book on this disease, and trust me, it can't be summarized in a post on this board. This is a very complex disease -- it can be found in any part of the digestive tract, and it can affect virtually any organ in the body. Long story short -- your doctor appears to be right on target.

At the very least, you are almost surely sensitive to gluten, dairy and soy. In order to achieve stable remission, we typically have to avoid even trace amounts of those foods, including ingredients based on their derivatives, and including the ingredients in supplements and all pharmaceutical products. Many of us have many other food sensitivities, in addition to those basic three.

I have to go help someone with a computer virus problem, so I'll have to cut this short.

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

Tex (Wayne)

jmayk8 · Post by **jmayk8** » Fri Jun 08, 2012 4:47 am

I understand your a vegetarian but, I agree with the doctor to sticking with meat, pot and rice. And then seeing how you feel. Re-introducing meat may be tough since your body isn't used to it so, you may want to ask someone who knows about that since I'm not sure.
Good luck,
Jenny

Deanna in CO · Post by **Deanna in CO** » Fri Jun 08, 2012 11:33 am

Hmm, Jenny -

Are you sure pot wouldn't be harmful with MC? After all, drugs cause all kinds of problems for us. I guess at least you'd be calm about it.. <grin>

Deanna

Post by **tex** » Fri Jun 08, 2012 12:21 pm

Aaron,

Actually, the rules of the game haven't changed much in the last 6 or 7 years. Just as it was back then, if we want to get our life back, we still have to take control of our health, and fine tune our diet.

Brain fog is a common side effect of untreated (or undertreated) gluten-sensitivity. Many of us have brain fog and other neurological issues as a result of our sensitivity to gluten. Some of the neurological damage can become permanent if it remains untreated long enough.

Tex

jmayk8 · Post by **jmayk8** » Fri Jun 08, 2012 12:23 pm

Deanna-
aaaahahaha whoops!

Leah · Post by **Leah** » Fri Jun 08, 2012 2:07 pm

Hi Aaron. Welcome. Your doctor is better than most. Ours have told us that food has nothing to do with this disease.

I've been on the forum now for 5 months and I find that the more I read, the more I learn. The best thing to do is take out the big three offenders ( and never look back) and also take out some of the "aggravators" for now also ( raw fruits and veggies, salad,tomato products, peppers, fried foods....etc). Do it until you start feeling better. I would ask my doc about taking Entocort ( budesonide) for a while. This drug helped me tremendously. The diet is healing me as time goes on. I am down to a third of the drug of what I use to take! I am also adding back in some of the other foods I took out. You must get serious about the diet so that no permanent damage is done.

Keep reading and learning. Good luck. Ask as many questions as you need
Leah

coryhub · Post by **coryhub** » Fri Jun 08, 2012 2:58 pm

Aaron your doctor is right on the money. What you called Brain Freeze, I call a gluten hang over.
Leah's list of what to avoid matches what I would have said.
Jenny I have often wondered if Pot would help LOL!

brandy · Post by **brandy** » Fri Jun 08, 2012 3:42 pm

Hi Aaron,

Welcome! Your doctor is dead on with his diet recommendations. Meat and potatos is a good way to go. Most of us have had Doctors who don't get the diet thing. Diet is very key to recovery Brandy

L.O.L. about the pot joke.

MBombardier · Post by **MBombardier** » Fri Jun 08, 2012 7:39 pm

Funny, I skipped right over the pot recommendation. Makes perfect sense to me. Of course, I live in the land of medical marijuana.

Welcome Aaron!! Don't mind us goofing around -- we're all friends here.

I'm sure there are some who have had to give up vegetarianism with this disease. I imagine someone will be along to talk about soon.

Welcome again!

Gabes-Apg · Post by **Gabes-Apg** » Fri Jun 08, 2012 7:50 pm

Aaron
welcome to group - crappy that you had to find us (pun intended)
thumbs up that you have a doctor that does link diet to this condition (that is rare)

the eyes reaction is histamine and/or inflammation reaction- quite common amongst the group.

for successful MC management majority of us have had to make considerable changes with our food and eating habits.
everything we knew about healthy eating before Dx no longer applies. for most of us, Fibre is our enenmy, and legumes and most vegetarian stables are not well tolerated by those with MC

no change like this is easy, what you do learn is that the change is worth it when you dont have to spend your days (or weeks) stuck in a bathroom.

Mc is quite individual, no one thing works for everyone, my motto is that there is no right way or wrong way, there is your way. you have to find what works for you ..

brandy · Post by **brandy** » Fri Jun 08, 2012 8:10 pm

Hi Aaron,

The brain fog, exhaustion and anxiety are common with this disease. I found as my gut healed this stuff went away. Suggest eliminate all Gluten (wheat) from your diet. Bye to bagels. Sao Paulo is a big city and I'm thinking you should be able to find gluten free bread available as a substitute. A combination b vitamin supplement with folic acid may help with time with the brain issues but look for one that is gluten (wheat) free, dairy free and soy free. I also ate a fair amount of fish early on but found broiling the fish with salt and pepper is best (no butter or fried stuff) and drizzle with extra virgin olive oil is probably ok. We can also eat overcooked vegetables but not too much early on. It does get better....Brandy

MaggieRedwings · Post by **MaggieRedwings** » Mon Jun 11, 2012 5:24 am

Morning Aaron & Welcome.

I think your doctor is right in his recommendation of what you should be eating. I was a vegan for over 35 years but alas, had to resort to chicken, seafood and pork since I became soy intolerant and was not getting any protein. It was hard to accept but definitely has worked for me. Brain fog from the MC is usually due to gluten.

Maggie