I briefly introduced myself before but as a refresher:
I'm Melody, I'm 25 weeks pregnant. I have CC and have been diagnosed since Dec '12. Having flare ups since my first born's pregnancy in 2007. I take Budesonide and try to not eat gluten. Cutting out most lactose (drinking almond milk only eating cheddar etc). As likely with a lot of you....when I have a stomach bug/flu my CC becomes triggered and I have a flare up. Had the flu FOUR WEEKS ago and now I'm starting to have the "urges". Barely made it home to the loo and nearly ruined the driver seat in our new as of yesterday minivan. With my last pregnancy I had a colitis flare up followed by Cholestasis of Pregnancy. My chances for getting the cholestasis will be greatly reduced if I can get the colitis managed/extinguished by the third trimester...in 3-4 week. I need to attack this aggressively. What has been helpful for you all? I'm only having uncontrollable urges in the morning going about 3-5 times between 6am and 9am. IF you need more info let me know..for now I'm going to go pack an emergency bag (undies, pants, wipes, and maybe even socks.....) for when I dont make it to the bathroom...
Melody
I have a potty mouth....In the way that my conversation usually revolves around poop...If its not my issues there's always a diaper to take care of. <3
Welcome to our internet family. Your urgent bathroom use pattern (mostly first thing in the morning) is typical for most of us. Dealing with this disease is tough enough for any of us, but it's especially tough on young mothers, because they/you certainly don't need any additional distractions, trials, or tribulations. Your plate is already full enough.
If you want to get serious about controlling your symptoms, though, you will need to do much more than just try to not eat gluten and cut out most lactose. You will have to avoid all traces of gluten (100 %), and ditto for all dairy products (because of the casein, not because of lactose), and you may also have to avoid all traces of soy, including soy lecithins and soy oils, and most/all legumes. But if I were in your situation, I would concentrate on the gluten and casein first, and worry about the soy later, if necessary. If you feel that you are an exception to the rule (as most newbies seem to do), and you doubt that you are actually sensitive to those foods, you can verify sensitivity, or the absence thereof, by ordering stool tests from EnteroLab in Dallas, TX. They offer the only tests for food sensitivities that are truly accurate and reliable.
Here's why you may want to give some serious thought to getting serious about your treatment: You're still young, and you have most of your life ahead of you, to say nothing of looking forward to raising a family, and then later experiencing the joys and the sorrows of watching them raise their own families. Unfortunately, untreated or undertreated gluten sensitivity has very serious long-range consequences that are not oven on the radars of most doctors. If not properly treated early on, you will continue to develop additional autoimmune-type diseases on a somewhat regular basis, as your immune system continues to be overwhelmed by the constant onslaught from gluten. It only takes trace amounts in the diet to perpetuate the risks, and to trigger the genes that predispose to additional diseases. And remember that cancer did not exist among humans until the advent of the neolithic period in history, when wheat, barley, and rye were first developed and cultivated on a widespread basis.
Getting serious about controlling your symptoms is hard work, and requires dedication, self-discipline and patience, but it is the only way to truly get your life back, because for someone as young as you, the prospects of many decades of using budesonide as your primary mode of control, will almost surely result in side effect consequences that will eventually become regrettable. Low doses of budesonide for medium to long-term use are relatively safe, but higher doses over decades will almost surely do major damage to your bones and certain organs (such as your adrenals), and all the while, gluten will continue to abuse your immune system, prompting the development of additional autoimmune-type issues. Although admittedly, the budesonide may help to slightly suppress the risk of developing additional autoimmune-type syndromes, by suppressing your immune system's potential somewhat. The flip side of that is the risk that by suppressing your immune system, you will be more vulnerable to the development of other diseases, infections, and possibly cancer.
At any rate, that's why we feel that getting the ducks in our diet in a row early on is so important. The sooner we manage to control our MC symptoms, the sooner we can get on with our enjoyment of life, and put our main worries behind us.
I love your writing style, by the way. Your first post was a classic. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
Welcome to our CC family. I wish you every success on your path to remission. I found out the hard way that cutting down on gluten did not work. I stubbornly tried to do it "my way" the first year and things got a bit better but it wasn't until I cut out all gluten that I finally achieved some long term remission. Reading Tex's book will get you up to speed quickly on information Tex has garnered over years of online posts. Many of us initially used Budesonide to heal gut inflammation & get up to speed on the diet but then discontinue medication and see how far diet takes us. You have a few months before baby and a lot of healing can get underway in that time. It's time to stock up on gluten free fare because soon you'll be busy with 2 little ones. Good luck and we are here whenever you have questions.
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
I had a burger from the 99 restaurant last night with the bun atfer a week of 100% gluten free and I'm amazed at how fast that damn bun got me. My stomach (and mood for that matter) are just in complete shambles. I'm committed and this forum has really opened my eyes. Thank you.
My father has been dealing with undiagnosed CC for as long as I can remember and was only diagnosed in the beginning of 2012. He refuses to believe it is a gluten related thing and recently got on Budesonide...I wonder how I could convince him. I'll send him here!
Cory - this will be my third kiddo! I can't believe it! Three little boys under 6.....I dont have the time to deal with CC! Longest remission has been 6 months at a time with typically 1-4 months of CC. I need to heal...and QUICK!
Melody
I have a potty mouth....In the way that my conversation usually revolves around poop...If its not my issues there's always a diaper to take care of. <3
When my mc was at its worst, I had spare clothes in the car, and a spare set in a locker at work.....
Beach towel folded three times thick on the drivers seat....
Hence why putting the time and energy into removing the major triggers is worth while, things like lactose and maybe soy....reducing the inflammation may not cure you, but it definitely make life easier, less stressful, reduce the frequency and urgency of the bm's
(Have to admit, a small bag with wipes, liners, spare undies is always in my handbag!!!)
Hope things improve
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
