Education update - ENFIt Transition for tube feeding

One of my goals for this blog includes education on nutrition support. As you know, I was on Total Parenteral Nutrition for 2.5 years until I was weaned off. However in the first several weeks I was briefly on j-tube feedings. For this type of this type of feedings, lines can be placed in your stomach, intestines or run through your nose to either your stomach or intestines to deliver much needed nutrition. Depending on your diagnosis or condition, a person can be fed through a tube or central line lines or both. Like TPN, tube feed formulas are infused by a pump attached to the tube. 

In 2015, the is going to be a global standardization in the connection system of tube feeds to reduce the possibility of misconnections. The ENFit transition will begin in the first quarter with transition sets being distributed to the US, Canada and Puerto Rico. ThriveRx is hosting a webinar called ENFit Transitions: The Why, What, When and How this will Impact You on Thursday, January 29th at 1-2pm est. 

You can register at http://www.thriverx.net/  If you are unable to make the designated time, make sure you register and a copy of the webinar will be emailed to you to watch at your convenience.

You can also find more information about tube feedings at  http://www.feedingtubeawareness.com/

With any medical condition, awareness needs to be raised so others understand what patients are going through, February 8-14 is Feeding Tube Awareness Week so spread the work so all those on Tube feeds can keep Living, Laughing and Loving along with all of us.

Crohn's as a disability...Please sign!

Happy New Year! I can't believe that it's 2015 already, it seems like it just turned the year 2000 and all the excitement that brought and in reality that was 15 years ago! It's amazing how things change in a few short years!

If you would have asked me 5, 10 or 15 years ago if Crohn's Disease was a disability under Social Security I probably would have said no. For me, my flares have always been fairly easy to treat and manageable. I rarely missed work due to actual flares, mostly I missed a day here or there due to the occasional bowel obstruction. Imuran kept my symptoms and flares under control. I was able to have 3 children, exercise, work full-time and live a normal life. I never needed to consider the possibility of applying for Social Security Disability until my bowel obstruction 5 years radically changed my life.

My contact with other Crohn's patients was meeting someone by chance or having a friend or family member tell me about a friend of a friend that had just been diagnosed or was having major problems. Occasionally I would speak with someone that needed support. For me, Crohn's was just this thing I had that occasionally interrupted my life, no big deal.

However, there are many Crohn's and Ulcerative Colitis patients that are so sick, they are unable to work. There are days when you physically shouldn't be getting out of bed but you have to in order to support yourself and your family. For people that have to do this, it only makes things worse by causing you to be even sicker. For others finding the right medication is next to impossible so they never feel better. Finally others stop working altogether, losing income and insurance benefits. Crohn's & Ulcerative Colitis are rarely fatal but can cause other life threatening issues like surgery, malabsortion issues, anemia, depression and much else. Medications used to treat the diseases have another list of side effects that can also result in long term complications. Check out this article for more information:
http://www.huffingtonpost.com/rebecca-kaplan/social-security-administr_b_6404952.html

Both diseases are listed as disabilities under Social Security but the approval process can be long and arduous. Denial the first time around is very common resulting in appealing and the added strain of continuing to work while very ill. Friends that I have met through online support groups are trying to petition Congress to add Crohn's and Ulcerative Colitis to the Compassionate Allowance list. The Compassionate Allowance list allows those with specific diseases to have their claims processed faster when applying for Social Security or Disability benefits. Once a year Congress adds diseases to the list, the White House must urge the Social Security Administration to convene a hearing. My friends have started a petition to get Crohn's and UC added to the list. They need 100,000 signatures in 30 days.  I am asking each of you to sign the link below and forward it to others so that those who need the benefits can receive them.

I am probably not the only one you know with one of these diseases so please sign it so the really sick ones can begin to Live, Love and Laugh with out the added financial pressure on them.

http://wh.gov/igOWD

Wishing everyone A Merry Christmas!

 It never ceases to amaze me how quickly the year passes and it's Christmas time again. Everyone is in high spirits (or trying to be) during this time of shopping, wrapping, baking and celebrating. But there are many that are not well enough to get out to shop or celebrate or are financially strapped due to exorbitant medical bills, it's a tough time of year. You feel alone and out of the spirit. It takes much energy to "get it all done" whether you are a "normal" or "medically challenged". I personally have been taking more naps and saying no to invites or at least trying to. But it's hard when you don't want to hurt others feelings. 

For me the magic is just starting, the presents are bought & wrapped and cookies baked (I actually relinquished this task to my boys, messy kitchen and all! See I am trying!) Tomorrow will be a day for just the 5 of us but will be squished between days of family celebrations. In one way or another, we will get to see our entire immediate families (athough due to travel schedules, not all at the same time!) I will try and stay away from all the sweets I am not supposed to eat and follow my SBS diet but I know I will cheat a bit. Naps will be scheduled so I can be at my best and most chipper. They boys have asked to attend midnight Mass tonight, which I agreed if we could stay in bed until 9! Not sure if that will happen but I hope so (although they are teenagers and seem to sleep all morning but for some reason they wake early on Christmas!)

To all my friends I would like to wish you a Merry Christmas, Maligayang Pasko, Happy Hanukkah, Feliz Navidad, Happy Kwanza, Happy Boxing Day, and Happy Holidays. To those of you who do not celebrate those religious holidays or none at all I wish you peace and health this Holiday Season so that all may continue to Live, Love and Laugh into the New Year.

Michelle

You look great...

This is something an IBD'er hears a lot! You look great on the outside but feel absolutely horrible on the inside. Crohn's, Ulcerative Colitis are 'invisible" diseases, you can't tell that someone has them by just looking at them. Many of us have figured out how to deal with the pain and cramping, diarrhea, weight loss, fatigue,  bathroom urgency, medication side effects among other things to hide that we are feeling well. Over the past 30 years, I have learned how to hide or pass off all of the symptoms listed above, not only from friends and co-workers but also from my husband, Mike. I allowed myself to hide what was going wrong because I didn't want or have time to be "sick". I just dealt with it. I was also diagnosed when there was not much information on Crohn's available or at your finger tips like there is today. So I learned how to suffer alone.

Thankfully, this is IBD Awareness week to raise awareness for those suffering with Crohn's & Colitis. People like me don't have to suffer alone anymore. CCFA.org has many resources for newly diagnosed patients as well as those who are still struggling with their illness. Facebook has many(closed) groups for those with IBD that you can join and share your pain with those that understand what you are experiencing. The closed pages allow you to share the pain and often embarrassing symptoms without grossing out or overly worrying those you love. I have found much support from both reading and contributing in these groups. Reading about others experiences allows me to learn how better I can manage my disease and also encourage others to live their life. Thegreatbowelmovement.org is a social organization group that raises awareness for IBD along with encouraging patients to embrace their disease, spread awareness and to be proud of their experience.

You shouldn't have to hide behind closed door anymore if you suffer from IBD. So wear purple, post a #IBDselfie and share your story. Go out in the world to Live, Love and Laugh even though you are hurting..someone understands what you are going through!

Giving Thanks and Making a Wish...or two

Happy Belated Thanksgiving..I have much to be thankful for especially my husband, sons, parents, siblings, in-laws, wonderful friends and extended family. Most especially I have my life to be thankful for, I get to enjoy spending time with all those mentioned above. I also get to wake up each day to spend time in the beautiful world we live in (even on ugly, rainy days like today!). Sometimes it's hard to be thankful when you are going through rough patches with your health or relationships. 

Yesterday I caught a TV clip about how the Make a Wish foundation got it's start. It was a very touching piece about a young cancer patient who wanted to grow up to be a police officer and his mother worked out a deal with the local police force to make him an officer for a day. She even tailored an official uniform to fit him. It was one of the best days of his life but sadly he passed 2 days later. This act of kindness has grown into an amazing organization that have granted wishes & dreams for thousands of health-compromised children. 

It was a very touching piece that got me thinking about what I wish for...I wish that for a healthy long life for me and my family, that illness, disease, or accidents  do not affect those I love, a world without riots, war or discrimination, that my children grow up healthy and happy and follow their hearts to find love and happiness, that I can live each day to it's fullest, and that I can connect with others with similar health conditions to not feel alone and adjust to their new "normal".  

I am realistic enough to know that some of my wishes won't come true but I can try to make my life and the lives around me better by just being here to pass on a positive outlook and welcoming smile to those that need it. Every life is worth living...is someway we help each other to Live, Love & Laugh another day.  

(FYI you can find more Wish organizations for children and adults at http://www.thriverx.net/resources/resources.htm )

Hate the tired feeling....

One of the biggest changes I have noticed in my life in the last 4 years is how my energy levels have changed. Low energy and fatigue wasn't new to me prior to SBS because thanks to Crohn's Disease I was either fighting anemia or low B-12 levels. When I lost most of my large intestines in the early 1990's, I also lost my ileocecal valve which separates the large and small intestines along with absorbing the vitamin B-12. Your body doesn't store B-12 like it does iron so the best way for me to increase my B-12 levels is to get monthly shots, which I have been doing for many years now. Lack of B-12 causes tiredness and fatigue but once I get my shot I can notice a difference.

This is how I feel sometimes!

When my Crohn's is active, I have been anemic and fought low iron counts.When your red blood cell numbers are low, supplements can help bring your numbers into the correct range and give you more energy. Iron pills always used to make me severely ill so I couldn't take them. Over the years, I have had iron and blood transfusions to increase my blood counts and energy levels. 

Thankfully both my B-12 and iron levels are in the normal range but I still feel tired. My fatigue is more related to malabsorption caused by having Short Bowel Syndrome. By following the Maximize Health! diet and also taking IV fluids daily, my body is able to absorb the nutrients it needs to keep my body going without the aid of TPN. Even with doing those things, I am still not absorbing all the nutrients a normal person does. If I do too many things in a day or several days in a row, I am completely exhausted. My mind still hasn't caught up to my body in terms of what I think I can and can't do. I try to manage my activities so I don't overdo things (or more likely I look at the calender and realize I over-booked myself on accident) so I have the energy to take care of my self and my boys. When I have over-booked things, there is nothing like a good nap (and sometimes just a power nap) to give me a enough energy to get through the day. Sometimes I take a few "down" days to recharge when I am really tired. Many times, Mike will remind me to lie down or cancel things so I don't overdo it. My mind still thinks I have the energy to keep going like the Energizer Bunny I used to be, even thought it's been over 4 years I still forget I am not the same.

Please don't be offended if I pass on an event or not sign-up for something, it's not about you..it's me looking out for myself. So if you happen to see me closing my eyes for a few minutes or napping, I am just trying to recharge so I can keep Living, Loving and Laughing!

Today is....

World Ostomy Day! The United Ostomy Association of America has declared October 4, 2014 as a day for patients to Live, Learn & Share about living with an ostomy.  There are many reasons for people to have ileostomies, colostomies or urostomies ranging from birth defects, illness, cancer, abdominal trauma from car accidents, war or gun shots and many other reasons. No one wants to have an ostomy but if it's a choice between life and death I think most of us would choose LIFE!

LIVING with an ostomy wasn't easy at first. It took a long time to finally accept it but putting up a mental block to not deal with it was not an option. In the beginning I didn't think about it, the appliance was just there.  About two years after I had my ostomy, I was talking with my Psychiatrist neice and mentioned that I didn't know if I had accepted my ostomy but looked at it as "it is what it is". her response was, maybe that is your acceptance. I had never looked it that way but I think she was right, I had accepted it on my terms and went on living my life.

LEARNING how to change my appliance (& keep it on) took several months of trial and error. I had a fear of going out and having a leak. Working with a nurse who specializes in Wound & Ostomy care, helped me find the correct products to use. I started taking an "emergency bag" with me in case of a leak. The first big event, I felt strong enough to attend after my surgery was my Aunt and Uncle's 50th wedding anniversary celebration. Getting dressed took a while to find  the right clothes that fit (I was still very thin at the time) and also "hid" my appliance. I was nervous about seeing all my relatives but wanted to see them at the same time. Unfortunately on the drive there I had a "leak" and had to turn around and go home. I cried the entire way home because I was upset and embarrassed about why I couldn't make the event. As unpleasant as that evening was, it was just another bump in the read to learning how to live.

By writing this blog, I have learned to SHARE what I have gone through to help others learn how to continue living again. I also try offer support to spouses and family members so they can help their loved one . Patients can find support in local groups & on-line. The UOAA has a great website for reference. Inspire has a great group of people who share and sympathize with each other.  Facebook has many open and closed pages that Ostomates can join to share their experiences, you just have to figure out what works best for you.

When I first came home with my ileostomy, I was ashamed and embarrassed. I knew no one with an ostomy nor how to live with one. I felt everyone could see it or smell it.I worried that I couldn't live life like I used too. Four years later, I have met some wonderful people who have helped me embrace my life and my ostomy. Without these people (whether I know in person or on-line) have allowed me to talk about my experience without worrying how knows about it. By Living, Learning and Sharing I have continued to Live, Love and Laugh!