Wouldn’t It Be Nice?

Introduction:
From Long Island, NY, 26 year old female and I was diagnosed at the age of 15. I’m trained in the culinary & baking arts and currently operating a private baking company as a side business. Between medication and supplements and very stringent food ingredients I am able to go on outings and not have to run to the restroom every 5 minutes.
My Symptoms:
Currently (knock on wood) I’m pretty ok. So long as I maintain my medication and supplement regiment along with food management and ingredient quality I have 1 bm on average (every 28 days things change a little bit … well… you get the picture). I’m able to eat a lot of “regular” foods (the kind like food used to be before over processing became the norm) and on occasion can eat some of the not so good for you stuff too. It’s a balancing act.

Things I’ve Learned Since Diagnosis:
– lactose free skim plus milk is easier on the digestive tract, as is potato flour based bread (even the whole wheat kind)
– I know that the Kashi cereals are pretty safe, but the regular sugary brand isn’t and yes you will pay for it later
– I also found that while microwave popcorn is a guaranteed trip to the restroom, the already popped “popcorn indiana” brand is perfectly fine
– I love cruciferous veggies and legumes packed with protien and they are actually easier on the digestive system than most think, of course that’s within the no fake sugars, no over processed foods guidelines, for me anyway
– There is no such thing as too much fiber
– caffeine is basically always a no
-cinnamon altoids help for car rides
– square toilets are not very comfy
– goat cheese is a godsend
– fresh fruit is happiness (unless it’s got a candle’s worth of wax on it to make it pretty…)
– and that i’m pretty lucky considering what others have gone through, are going through and will go through

My Story:

So, way back when, I turned 15, and my birthday present that year was ulcerative colitis… yay……

Here’s the best part. You see when you’re a minor, some doctors forget that you’re really the patient and talk only to the adults… leaving you in the dark. I recall trying to go through a normal teenager’s routine- high school, hormones, AP classes, siblings, etc.

When the biggest worry of my life should have been, “what if I get a zit?” or “when should I start drivers Ed?”, not “why am I bleeding every time I use the toilet?”, “why when I get nervous I have to run to the bathroom?”, and “why did I drop 30 lbs or so in less than 2.5 weeks?”

So my parents finally decided that I was not trying to cut class but had a legitimate reason for consistent absences. Off to the doctors we went. What could possibly be better than going to a GI for the first time? Never trust the gloves… you’ve all been there. The GI decided it would be a good time to do a sigmoidoscopy… he just didn’t think it was that important to inform me of what it was and it’s purpose. For those of you who have not experienced that joy, you are awake and very much like one of those balloon spinnakers at the x games. (Now remember I was 15… and female… you do the math) Needless to say I was not a happy camper nor did I ever go back to that GI.

That particular GI put me on a very strict diet, but different from the SCD. He also put me on a course of drugs that I think I blocked out because I don’t remember anything other than bagels and onions were very, very bad for me. It was strange. Years passed and I at one point thought I was lactose intolerant because every time I had dairy I would get sick. I tried switching to soy, but that was worse. Then I found Rice milk and that worked for a number of years.

Magically, I had a period of remission for the next four years, but then stressful times began and so did the symptoms shortly afterwards. I love how the doctors will tell you that you need to relax and not have stress in your life. The only way to not have stress in life is to be dead- the mere fact that we are breathing leads the body to some type of stress, so spare me the no stress bull.

I have a very understanding employer (love her). Her sister has UC, so she actually gets most of the issues we all go through. (It’s rare to find someone out there! I’m so lucky) and she actually lead me to my current GI and I love him. At first we went through all the traditional drugs, talked about various treatments, quelled my fears about pretty much everything and actually works with the patient whether you choose to go holistic or medications or even a bit of both until you get the right system that works for you. For that time I was on colazal, prednisone for short term, bentyl, colestipol (the side effect of this cholesterol med is supposed to produce more solid stool… sorry) and on and off rowasa enemas.

Low and behold, with further research and a nutrition course towards my degree I found a classmate that also had UC, but a much more severe case. She led me to an article in regards to carrageenan. For those of you unfamiliar with this lovely little additive, a quick Google search will lead you to a ton of info and all the scary instances related to this “vegan gelatin”. It does great things, for the pockets of big business. It does terrible things to your digestive tract. Imagine eating a spoonful of Vaseline… sounds pleasant doesn’t it? Well that’s basically what it’s like. I’ve never experienced bloat so bad where you just want to die because there is no comfortable position.

Shortly after this revelation I went on a trip to Paris. I was petrified about the traveling aspect and the food in a new environment and a language I was not accustomed to. I found that while there, the French really don’t over process their food. Most things are in a natural form, where degradation will occur at a naturally accepted pace. It was amazing. For the first time I was able to have coffee- real coffee with milk! I even had ice cream one night and something in a cream based sauce! And nothing happened. No running to the restroom, nothing. I was in shock.

Upon return to the states, I began to read ingredient labels on our food products. And before you jump to the organic solution, know that the FDA has determined this product as safe and organic. They neglect to inform the American public that this substance is used to de-ice planes as well as in animal testing to bring about colon cancer. They have now found a link between degraded forms of carrageenan and colon cancer- tasty. And it is in everything! It’s most prevalent in dairy products because it is an emulsifier- it’s a cheap emulsifier. Apparently the consumer is entirely too lazy to make chocolate milk the old fashioned way. Heaven forbid a product separated and you had to stir or shake it. I digress.

Now, several years later it takes a while to grocery shop and if the print could get any smaller I’ll end up going blind. However, there are a number of companies that do not use this additive. Haagen Dazs uses eggs instead as an emulsifier. Some yogurts that have a gelatin for the fruit do contain it, while the plain and vanilla do not; salad dressings, heavy cream, certain fortified milks and other drinks, like soy milk, coconut milk, almond milk and a myriad of other products all contain this additive. It’s taken a long time to narrow down the brands that don’t and even still companies change their formulas to cut costs and adhere to any new laws that are passed. I noticed recently that the ricotta from Polly-O that we purchased for years now has carrageenan in it, yet Sorrento doesn’t. Also, in certain forms, the diet and sugar free products will use it as a filler, but in others such as canned evaporated milks, sweetened condensed, etc. used in ba king, only the full fat products have it. Again I think it’s because of a separation of product that the manufacturers do not want to happen, yet the fat free versions don’t use it.

This passed January I got to marry my best friend. He has been with me throughout all these trials. He understands what it is like and is never cross with me because of the limitations this disease causes. I’m very thankful to have him in my life. You can only imagine the stress a wedding can cause- and how many layers of dress in case of an emergency. Actually my first gown was in the shop that burnt down, so this was gown 2 and it had more layers and a crinoline. But despite all that drama, *knock on wood* I managed to really try to let it all roll off and I didn’t flare! The day went well. I was so happy.

After this, I spoke with my GI about changing meds from colazal (3 pills 3 times a day) to lialda (4 pills once a day) and the change was amazing. I wish I had known this long ago. I went from 3-4 trips to the restroom to 1. I couldn’t believe it. Talking to more folks about the disease and starting to look in to various supplements lead me to try Cat’s Claw. Now nothing is clinically proven with this supplement but it is basically implied that it helps to reduce inflammation. Whether it really does or the placebo effect is in place here, I will not be rocking the boat.

I really hate having to take all these meds and god I wish and pray and hope for the day they come out and say, “we have found the cure for UC!” and that will be the day we celebrate. And by cure I mean cure, not colon removal. I love that now they are airing more and more commercials about ibds- mostly Chrons, but it’s a start. The lucky people who don’t know what it’s like to have UC can sort of get the idea that it can be crippling and it is embarrassing and that we have legitimate complaints about toilet seats, toilet paper and which colonoscopy prep is the least terrible. I met one of my husband’s friends many years ago and learned that he too had UC, and because he didn’t really try to take care of himself, wound up with an ostomy bag by the age of 26. He was the first real person I met out there that had the same disease. Someone I could relate to and talk about various drugs and methods and what it was really like to buy stock in Ziploc (j/k…. now really). From there I finally found this site and I’m happy I did. I am more open now about UC than I ever was. I’m no longer embarrassed by the fact that I am a tp aficionado, that I get to have a colonoscopy every other year (the present you get after having the disease for over 10 years… woohoo) and that I know if I have sulfites, not only does my skin flush but shortly after other things will too…

These are the cards I was dealt. It’s a crappy hand, but I’m not ready to throw in the towel. I’m going to keep trying new things until I’m in a place where the treatment is exactly what I want it to be. It scares me that they still aren’t quite certain as to how a person can be predisposed to have UC and whatever the link is. We want to have a family, but I do not want to watch my child, or anyone else’s for that matter, to have to go through all of this. It is hard enough for me to have to do all of this. That would break my heart. Kids don’t understand that it isn’t contagious like the norovirus and that it doesn’t really go away.

Right now I’m in a good place. My treatment involves Lialda, symax, colestipol and several supplements. We’re going on our honeymoon in December (Disney Cruise!) and I can’t wait. I’ll always be fearful of the food, but I know the Disney cast members are very serious about food allergies and food intolerances.

Where I’d Like to be in 1 year:

If I could have anything, and I mean anything, I would love to be cured in a year. And for everyone else out there to be cured. I’d love to be able to open my own bakery and make delicious carrageenan free treats for the public to enjoy. I’d love to know that there is a good chance that my future children won’t get stuck with this lousy disease.

 

Colitis Medications:
In chronological order:
-colazal 750mg -3- 3x/day- worked for a long time, but just got tired of taking so many pills every day so that ended later on with Lialda
-bentyl 1x/4 hours- didn’t last long enough so this was changed to…
-hyomax-sr .375mg- 2/day – love this anticholergenic
-colestipol 1g- 3/day – side effect to this drug helps harden stool
-iron supplement- slow release only!
-gummy multivitamin- food allergies- can’t have the one’s with the fish byproducts in it
-probiotic- seems to help, one can only eat so much yogurt
-rowasa enemas- on and off at the first sign of a flair- really not as terrible as they sound, and after 2 months- piece of cake
-prednisone- again on and off…. hate it
-qvar- newly diagnosed with asthma… yay
-singulair
-omeprazole- to reduce the reflux which triggers asthma and may or may not cause sinus issues…
-xyzal- low dose daily antihistimine
-nasonex- because we breath… and the plants breed
-lialda- 4/day- amazing! avg 1 bm per day!
-epiduo- acne very mild… and topical
-aczone- acne very mild… and topical
-cat’s claw- supplement
-echinacea- supplement
-biotin- supplement
-hot green tea- plain- 2 cups daily- first thing am and last thing pm
I really think the placebo effect has taken hold here… and if so… leave it be lol.

written by: Vici

submitted in the colitis venting area

carrageenan

5 Responses to Wouldn’t It Be Nice?

  1. Sammy
    Sammy July 28, 2012 at 9:33 am #

    Hi Vici,
    Its so good that you’ve gone for a goal, and stuck with it. When my doctor eventually gets back to me (they’re having problems with my history on treatment as i’ve moved here, there and everywhere) i’m going to ask him about the BCIR bag, apparently its on the inside of your stomach and is a God send to a lot of people. Look it up on the net, very interesting. Also, if your like me to worry when you go out and about, look into hypnotherapy. I’m trying to save my money to go to one myself as i panick when i go out, which we all know can make things worse. Good luck with your business :)
    From Sammy

  2. Richele
    Richele October 3, 2012 at 10:17 am #

    Hi Vici,
    I really enjoyed reading your story! You’re a funny girl :)
    It’s refreshing to see somebody pointing out the fact that the food we eat is killing us. I didn’t know about carageenan before, but I will definitely be looking for it in my grocery shopping now.
    I read “Wheat Belly” which is so interesting about how the wheat we consume has been so genetically modified that our bodies don’t even know what to do with it anymore. And how the American Heart Association keeps pushing “healthy whole grains! with extra fiber!’ yum! It’s supposed to be good for us! Well it’s not! Check out the book if you want, I found it very informative and eyeopening.
    Be well,
    Richele

  3. naomi November 2, 2012 at 2:06 pm #

    Hi Vici, thanks for telling us to google carrageenan! (about an hour later reading articles) im shocked and will do my best to avoid this nasty little thing! what brand rice milk do you drink? and were do you find most carrageenan free foods? whole foods sprouts? THX!!!!

  4. Sarah April 18, 2013 at 1:29 pm #

    Hello Vici,
    I hope you have/had a blast on your honeymoon cruise. And I pray that you are cured in a year as well! I guess I pray the same for myself a fellow UCer since 2004 and everyone as that simple statement brought me to tears. I was symptom free and non drug controlled from 2004 (end) until 2012 after having a third consecutive baby. I am currently pregnant again, number four and my last planned child. I strongly believe that the antibiotics they often give while in delivery because of group B strep have helped to bring about my flair. I also love Lialda (love it but it is soooo expensive) and take hydrocortisone enemas when necessary. I am just researching and discovering SCD and I think it may be the route for me at least until my flares cease and I feel confident healthy bacteria has grown back. Do you follow SCD, your findings/ results?

  5. Sharon May 18, 2013 at 6:27 pm #

    I am 42 and have had UC since I was 19. I have 4 amazingly awesome healthy kids and I do not worry about them getting UC. I worry about my 15 year old driving on the turnpike and my 13 year old daughter being within 200 feet of any boy and many other things that most parents worry about. My mom didn’t know she should worry about me getting UC and even if she had, it wouldn’t have changed a thing. My family has seen me suffer and seen me triumph over UC many many times. They have learned to be sympathetic to the suffering of others and the satisfaction of being helpful when someone else needs help. They have seen the importance of nutrition and seen my faith tested and my faith stand. They know I am not perfect and I do not expect perfection from them either. I would prefer to not have UC but I have lived with it long enough to see that even in this there is good. So continue to set goals and plan for a future. Keep up your great attitude and enjoy your life.

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No matter what, colitis flares don't last forever, don't forget it:)