Safety in an emergency..a Strap Wrap!

When emergencies happen, seconds count. When I used to cycle, I wore a RoadID dog tag that had my name and emergency contact information. The RoadID made me feel comfortable knowing that if anything every happened when I was on the road by myself (like that ever happened...lol), EMS would know who I was and who to contact. My husband and son both have one also. Before Alex had his drivers license, I used to make him wear it when I felt uncomfortable with large groups of people (like amusement parks or something like that.) I still have that my original dog tag and the information has changed much, I just don't wear it cycling anymore. 

Not long after I started on TPN, I was given a "Strap Wrap" to carry around with me. It holds all my important medical information about Doctors, emergency contacts, medical conditions and medicines.The wrap can go around my purse handle, seat belt or TPN  Backpack and the bright red is visible to EMS responders. It's small enough to fit in small purses but color makes it easy to spot. ThriveRx supplies them to anyone on TPN and will also update the information as you need it. It's a great way to stay safe in an emergency.

The grandmother of the cute little guy in the picture below came up with the idea of the Strap Wrap to keep her grandson safe with hemophilia safe during an accident.

If you know of anyone that would like one, please send me a message and I will get you one. Keeping people safe to Live, Love and Laugh longer is always a good thing!

United We Stand - World IBD Day 2015

Today is World IBD day to raise awareness to those who suffer from Crohn's and Ulcerative  Colitis. People used to suffer from these diseases in silence but now more people are sharing and discussing their diseases and suffering with those around them. Some poeple rarely have flares while others suffer almost every day.  This year's global theme is "United We Stand" so those around the world how that they don't suffer alone. People were asked to share a 20 second vidoe describing how UC or Crohn's has affected them (sorry I forgot to do this). These powerful videos are from patients, spouses, parents, children, friends, doctors, nurses and care-givers from all over the world. Check out the links below of all the videos that were submitted.

I remember when I was diagnosed and knew no one else that had Crohn's Disease, I have met many interesting people in support groups, both online and in person that fight to cure Croh's and Ulcerative Colitis. No one has to suffer alone anymore. 

I encourage everyone to wear the IBD color of Purple today or any shirt that represents and raises awareness for IBD. I do not have much purple clothing so I am wearing my "Ask me abut my Crohn's Disease" t-shirr. and I have already had someone ask me about it! 

Wear your purple today to show your support for Wolrd IBD Day so those that are fighting daily can find a way to Live, Love and Laugh without pain and suffering.

#worldibdday #ibd #Crohs #ccfra

http://www.worldibdday.org/https://www.youtube.com/channel/UC8m3RC4S2Rmr4DfOdf8kKvQ

http://www.worldibdday.org/

Vacation time is almost here...

It's hard to believe that it's already May and summer is just around the corner. The boys are ready for school to be done so they can head to the beach with their grandparents. Many people are planning their vacation plans for places near and far. For those on TPN, traveling can be scary and worrisome.  Besides planning where, when and how to go on vacation, you have to plan out your supplies and work with your infusion company to get your supplies where you want them when you want them there. If you wan to go on a cruise or overseas, there are more things to take into consideration since each country has different rules about infusion therapy. Flying also has it's problems about what you can take on the plane and the easiest ways to get through TSA security checkpoints.

To help those on infusion therapy enjoy their vacations, ThriveRx is hosting a webinar, Traveling with TPN, on Wednesday May 13th at 1pm est with tips to make traveling easier. One of the best things about ThriveRx's webinars are that if you are you can't make the scheduled time, once you register a recorded link will be sent to you to watch at your convenience. You can register at this link:

https://attendee.gotowebinar.com/register/4291744990952749314

We haven't figured out what our plans are for the summer but I know that my fluids and supplies will be there when I arrive thanks to ThriveRx...now if they could only pack all my clothes then everything would be perfect! 

I hope everyone gets to take some R&R this summer to recharge their batteries so they can keep on Living, Loving and Laughing! 

It''s been awhile....

I have this mental list of things to do that sometimes get written down to make things easier to track. Well writing blog posts needs to be a the top of all my lists in BIG CAPITAL LETTERS so I don't keep pushing it farther down the list. Writing posts are not a chore, but finding the time to do it can be hard,  if I could figure out how to write while in the shower or driving, you would see a ton of posts! So I apologize for how long it's been since my last post but promise to be better about it.

Since my last post, I have missed writing about webinars, awareness days/weeks/months, conferences and most importantly how I live with SBS. The other day I posted on Facebook about a campaign to stop the CDC from running an anti-smoking ad that featured a lady who got colo-rectal cancer from smoking which resulted in surgery to remove a portion of her intestines and was left with an ostomy. She states that she has "hole in her abdomen to collect waste" and was afraid of the smell and of it coming off at the wrong times. While I understand what the CDC is trying to do but I feel the way the message is presented perpetuates the negative connotation of having an ostomy. 

After that FB post, I was contacted by an old friend who has recently undergone surgery which resulted in a colostomy. After exchanging stories and offering support, I realized that by not posting for such a long time I was unable to reach others with SBS, ostomies or fed by IV nutrition to offer support. If I can help one person feel less alone with any medical challenge, them this blog is worth it. When I was faced with the unknown world of living with SBS, an ileostomy and TPN, meeting someone who had been through the same things and had been living a functional life, made my future that more bright. I hope I can be that bright light for someone else so they may continue to Live, Love& Laugh! 

Happy 5th Anniversary to me!

I can't believe that 5 years ago my life changed forever! I expected the scheduled exploratory surgery to result in a "simple" bowel resection like I had had in the past. Short Bowel Syndrome, an ileostomy and TPN were not figured into that equation. As I look back on the past 5 years, I can't believe how far I have come. Family and friends rallied around us in the early days to make sure that someone was with me when I was too weak to be by myself, watching the boys, organizing meals for all my guys or just keeping Mike company in the hospital. 

Whenever I remind Mike of this anniversary, I get the "look" that he would rather not remember it. February 3, 2010 was different for me than it was for him. I just remember waiting for surgery and waking 2 days later surrounded by family in the ICU. I can't imagine what Mike and our family went through in the waiting room during the surgery. Mike has told me that it was very intense especially when my surgeon finally came out and gave them the news of how bad things were but that I was still alive and fighting. The next several months were hard on all of us but slowly I turned a corner and got stronger and started to resume some activities.

5 years later, life is good, the boys are growing and thriving, Mike and I are getting older together. Connecting with others in similar situations makes me feel fulfilled more than I can ever have imagined. I wouldn't be here without the skills of Dr. L, who saved my life for which I can never thank him enough. Without the support and knowledge of ThriveRx, we would never have gotten through those early days when TPN was very confusing but then to teach me the correct things to eat & drink to help me get off TPN. 

We will not be having a big party or anything but today will always be a special day on my calendar because it has allowed me to keep Living, Loving and Laughing with everyone I meet!

I live for these guys! The keep me laughing! Love them tons!

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