Need Help Please! FDA changes could impact those on TPN

Sorry I haven't blogged in a while (really long time!) bu it's been summer, kids are home and we have been busy. There really should be no excuse to not blog so I apologize for that but I am asking for your help. Anyone who reads my blog knows that 5 1/2 years ago, I had a major surgery that resulted in Short Bowel Syndrome, which required the need for Total Parenteral Nutrition (TPN). TPN gave me the calories my body couldn't absorb naturally from food. TPN is made by compounding pharmacies that have special licencing, pharmacists and dietitian's that work with Physicians to make sure the formulation each patient receives is finely tuned for them. I was fortunate that my surgeon recommended ThriveRx as my infusion company, I have received personalized and superior care. ThriveRx and other infusion companies have pharmacies across the country. Many patients have their TPN shipped to them because they live in a different state than where their pharmacy is located or have travel needs for work, leisure or more importantly, medical visits. 

The FDA has a proposal to change the way infusion pharmacies ship their products across state lines, severely limiting the ability of patients to choose the best pharmacy for their needs, the ability to travel or received the best quality of care.The FDA's proposal is called the Memorandum of Understanding (MOU) and the FDA is accepting comments until Monday July 20th about how this proposal would affect people on TPN. If you know of anyone that uses a compounding pharmacy for TPN or other medications, please submit your comment as to how this would affect your lives. The FDA is wanting to learn more and now is your time to sahre your experience. Below is the link to submit your comment and more information about the MOU.

By making your voices heard, you can help others continue to Live, Love and Laugh while on TPN.

Submit your comment: http://www.regulations.gov/#!documentDetail;D=FDA-2014-N-1459-0001

You can find more information at:

FDA:  http://www.regulations.gov/#!documentDetail;D=FDA-2014-N-1459-0001

NHIA:http://www.nhia.org/resource/legislative/CompoundingMOUCommentInstructions. cfm

Sample of a consumer statement: http://www.oley.org/Sample-well-written-Statement.html

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.