My Physical

Yay!  I am officially off the Prednisone! And doing well overall.  I've gained back 15#'s of the 30#'s I losted.  My hubby and I went to Vail Colorado for a family vacation.  After spending too much time in the hospital the past year it was just what we needed.  Adventure!  We went white water rafting, hiking, swimming, horse back riding, and enjoyed seeing the beautiful Rocky Mountains.  Also we celebrated my 29th Birthday!

Hi ho hi ho it's back to work I go.  This is a exciting time of year at the studio.  We are gearing up for classes to start back up.  So that means enrollment, open house, teacher training, restocking the dancewear store, etc.  A fresh start for a new year!  Awesome!

With all this going on I figured the last thing I needed was my allergies to start bothering me this fall.  I'm basically allergic to everything!  Soooooo I decided to start taking my allergy shots again.  (I had stopped earlier this year because my UC flare was taking up all my time and energy, I just couldn't bring myself to do weekly shots and doctors appointments while I was feeling so crummy) Apart of the problem with the shots was that the medical clinic I went to get them at was an hour away from my home.  So I decided to have them mail the shots closer to me.  Apparently to get shots at my hometown doctors office, I had to be an established patient.  Literally rolling my eyes right now!  So I got a physical, and some lab work done.  Guess what, on top of everything else I am hypoglycemic.

My doctor told me that basically my blood sugar level is really low.  And I should eat snacks through out the day to help.  Also he suggested eating apples and fruit, because they are difficult to digest and release sugar throughout the day.  I had to contain my laughter, because it just isn't an option for me to eat these things without becoming deathly ill.  I am still avoiding eating dairy, sugar, and most raw fruits and vegetables because it bothers my UC.  I maintain a low fiber diet, and it works for me.  It sucks, but it keeps the UC in check.  So for now I am just snacking on crackers and apple sauce.  We'll see how this hypoglycemia unfolds.  Hopefully this doesn't develop into diabetes!  Keeping my figures crossed! 

Also I am anemia still!  I am even taking iron supplements.  So that was a bit frustrating.  I guess it just takes awhile for your body to heal after being flared up for the better part of a year. 

Prednisone

Hey all!  Well I am happy to say that I am currently doing alright.  I am tapering off of Prednisone, I am down to only 20mg.  I am a bit fearful that I will flare back up especially since in the past year every time I get lower than 20mg of Prednisone I flare back up.  So we will see how this goes.  Biggest complaints about weaning off Prednisone;

• Hair loss (my hair has started to thin out, as a result I got a fancy new really short hair cut)
• Hormons (I seam to cry a lot more over dumb things, I'll be watching SYTYCD and I'll get emotional.)
• Shakiness (My hands shake the first two-three days I go down by 5mg on the Prednisone, just like a regular drug addict. Awesome!)
• Loss of Sleep (I usually I am unable to sleep the first couple of days of being on a lower dosage)
• Hot Flashes (Sometimes I get hot flashes, sexy I know)
• Exhaustion (I feel tired all the time)

Hopefully the next 4 weeks of tapering off the Prednisone go well.  Wish me luck!  I thought I would also share this article of FMT that was in the New York Times.  I can honestly say that it is a good read.  And that I think the FMT is the reason why I am doing so well now, it works!

http://opinionator.blogs.nytimes.com/2013/07/06/why-i-donated-my-stool/

How to do Fecal Transplant at home!

This video shows you how to do a fecal transplant at home!

Fecal Transplant Therapy! (FMT)

Have you all heard about Fecal Transplant Therapy to cure UC?  Check it out!  Would you try it?





Unfortunately this procedure hasn't been approved by the FDA yet, so it may take a few years for it to be available in the U.S.

Diet

 Great news!  I am finally out of the hospital and have been for about a week.  I am still experiencing some UC symptoms, but it isn't as bad as before.  I am constantly afraid that it will take a turn for the worse again........especially since it is a super stressful time of year at the studio.  (3 weeks until the recital! OMG! So much stuff to do!)  If my symptoms flare again, I'll most-likely have the surgery.  So lets hope I can survive for a bit longer! 

Enough about me......let talk about Diet!   This is something that all of us with UC struggle with.  What the heck are we suppose to eat?  I've had many doctors tell me that diet doesn't matter.  Which sometimes can be pretty frustrating to hear when your struggling to gain necessary nutrients.  Each time I have been in the hospital my lab work came back terrible because I had gotten so sick that I wasn't able to absorb the food I ate.  At times I am almost afraid of food, and I'm sure I'm not the only one out there that feels the same way. 

I have tried every diet imaginable; SCD, Paleo, Atkins, Vegan, Vegetarian, etc.  And I can honestly say that none of them worked for me.  The SCD Diet almost killed me.  I lost 30 pounds on it, and the bleeding actually got much worse.  I stuck with it for 3 months because it's big claim is that you'll go through a detox phase where you'll feel worse before you get better.   Oh I felt worse for sure, I was miserable.  I don't recommend this diet to anyone with IBD.

While I was in the hospital I talked to a really good Nutritionist.  And she gave me some great pointers that I thought I would share with you all because this is the best information I've received regarding diet for Inflammatory Bowel Disease.  It has helped me out, and hopefully it will be beneficial to you as well. 

✔Diet Tips and Suggestions!

• Eat small meals or snacks every 3 to 4 hours
• When you have symptoms, stick to the foods in the recommended foods outline below.  These foods are lower in fiber.  When diarrhea decreases, you many have small amounts of whole grain foods and higher-fiber fruits and vegetables.  Try them one at a time.  If you have abdominal pain or diarrhea, then stop eating the new food.  You can try it again at a later date.
• Drink enough fluids to prevent dehydration.  Aim for a least 8 cups of fluid each day.
• Eat foods that have added probiotics and prebiotics.  
• Use a multivitamin.  You may need more of some vitamins and minerals than you do when you are healthy.  (I also take a calcium supplement as well.)
• During periods when you don't have symptoms, include whole grains and a variety of fruits and vegetables in your eating plan.  Start new foods one at a time, in small amounts.  

 ✎ Proteins Recommended Foods

• Tender and well-cooked lean meats; poultry, pork, fish, eggs, and soy prepared without added fat.

✎Dairy Recommended Foods

• Evaporated, skim, powdered or low-fat milk
• Smooth, nonfat or low-fat yogurt
• Low-fat cheeses
• Sherbet

 ✎Grains Recommended Foods

• Choose grain foods with less than 2 grams of fiber per serving. (White rice, Bread, bagels, rolls, cereals, and pasta made from white or refined flour)  

✎Vegetables

•  Most well-cooked vegetables without seeds.  
• Potatoes without skin
• Strained vegetable juice
• VEGETABLES NOT RECOMMENDED!  (Beets, broccoli, Brussels sprouts, cabbage and sauerkraut, cauliflower, corn, lima beans, mushrooms, okra, onions, peppers, parsnips, potato skins, spinach, winter squash, turnip, and collards.)

✎Fruits

• Fruit juice without pulp (except prune juice)
• Ripe banana or melons
• Most canned, soft fruits
• Choose canned fruit in juice or light syrup.  Heavy syrup has lots of sugar, which may make diarrhea worse.
• FRUITS NOT RECOMMENDED! (All raw fruits except ripe bananas and melon, canned berries, canned cherries, dried fruits including raisins, prune juice)

✎Fats and Oils

•  Limit fats and oils to less than 8 teaspoons per day.

✎Beverages

•  Drinking beverages with sugar or corn syrup may make diarrhea worse for some people.  Very sweet juices may also have this effect.
• Water, Decaffeinated coffee, caffeine-free tea, soft drinks without caffeine, rehydration beverages. 
• BEVERAGES NOT RECOMMENDED! Beverage with caffeine, such as coffee, tea, cola, some sport drinks, alcoholic drinks.  Avoid sweet fruit juices and soft drinks or other beverages made with sugar or corn syrup if they make diarrhea worse. 

✎Other

•  Sugar alcohols (sorbitol, mannitol, xylitol) cause diarrhea in some people.  These ingredients are often found in sugarless gums and candies, as well as some medications.  

Good luck and happy eating!!!  :)

Remicade- A Love Hate Relationship!

Hello peps!

Here is my latest health update!  Unfortunately I am still in the hospital.  I've been here for 11 days now.  Who counting?  Yesterday we did another Remicade treatment.  I had received 2 Remicade treatments before I was hospitalized in February with pneumonia.  We momentarily stopped the Remicade treatments because this drug suppresses your immune system and my doctors felt that it needed to be done, so that I could recover from the pneumonia.  Once I got better from the pneumonia, I broke out with these huge painful blisters on my hands.  Which turned out to be herpes (the coldsore kind, not the STD) I am pretty sure I got it just from being in the hospital, grrr!  So again, Remicade treatment was put on hold so my immune system could battle the herpes.  Which made me very nervous at the time because I had experienced some releif from my UC, and we credited this to the Remicade treatments.

For those of who you aren't familiar with Remicade, the drug can take up to 3 treatments to work (when you are in the middle of a horrible flare this can seam like an eternity).  You do what is called an induction round to get started.  This consists of one treatment, then 2 weeks later another one, then 4 weeks later another one, then 6 weeks later, then they eventually go to every 8 weeks.  The drug is administered through an IV and takes about 2 hours to infuse.  I originally put off doing this drug because off all the horrible side affects listed, plus we knew that we wanted to start a family and my OBGYN didn't think that this would be a good drug to be on during pregnancy.  However after being in a flare for 9 months we got to the point that were willing to try anything.  Not that this is sound reasoning but all medications have risks and side affects even Tylenol says that it can cause cancer or death, if you read through all the fine print.  Anyways here is the link for more information about Remicade www.remicade.com (I always encourage everyone to do their own research for making any decisions.)

Back to the story.  Shortly after getting over the herpes break out, I flared back up.   So we did another Remicade treatment that was about a month ago.  However it takes up to 3 for it to work, and since I had stopped treatment before getting the full induction round, we weren't really sure if the Remicade ever worked in the first place or if it ever had enough time to fully build up in my system.  Recently, I haven't been responding to medications, so they sent me to the ER and I have been living at the hospital ever since.  Yesterday my doctors decided to start the Remicade induction process all over again, and I received another treatment.  This is basically a last effort to save my colon.  If this doesn't work I'll go to surgery.  So we are hoping for the best. 

 My doctors don't seam to know an exact day that I will be released yet.  I am being closely monitored, and I believe I am getting the best care possible.  However I am starting to get home sick, and not knowing when I'll be released is starting to wear on me.  I own a dance studio, and this time of year is crazy busy for us.  We have a dance competition next weekend, and a recital right around the corner.  My husband, family, and staff have been super wonderful to me during this difficult time.  They are pretty much running the studio at this point.  My clients have been really supportive, however I have this fear of losing the business to this horrible disease because I honestly am unable to work.  Bottom line, I need to get better! 

Organization

For those of you who don't know me, I am OCD when it comes to organization.  I am one of those people that actually get excited to label and color code projects.  I know I'm a big dork!

When you have UC, it is vital to your health to be able to keep track of all the medications you are taking, your diet, how many BM's per day you are having, when your last period was, ect.  It gets to be a bit much at times.  I used to literally carry a binder with me that had all my health care information in it.

Which is why I wanted to share that I found this handy new app. called GI Buddy.  Best part about it is that is free.  It is also small and much more portable than a heavy bulky binder.  (Just don't lose your phone.)  The app allows you to track all your medications, symptoms, log the foods you eat, monitor your overall well being, log your exercise routine, it even generates reports to help you see trends in your IBD, and more!  I have only used it for a couple of days, and I am already finding it really helpful.

Now this one is just for the ladies out there!  Another app that I find helpful is P.D. (Period Diary).   It is fully animated app with a cute design.  It comes complete with a calendar that tracks your period, ovulation, moods, symptoms, and more.  It even predicts your future periods which can help you make plans.  Who wants to schedule a beach vacation during the middle of their period?  This is another free app.

I hope you find these tools as helpful as I have.  Have a wonderful day!  :)