Summer & our anniversary went by too quickly...

It's been awhile since I posted anything. Summer went by way to quickly and was uneventful, no major trips or vacations this year. The 2 younger boys had a short summer due to the schools changing their calendar around. My oldest packed up and moved to college, the mom in me is sad but excited for him at the same time. As usual once school starts our anniversary gets mixed in with all the back to school events. This year Mike and I celebrated our Silver anniversary this year, 25 years! What an accomplishment in this day and age!

It doesn't seem like it's been 25 years, time has gone so fast. We have had the usual ups and downs during our marriage, health, jobs and financial issues like most people. Crohn's was a part of my life before Mike came into the picture and he watched me go through a few flares before our wedding, so he knew what he was getting into. Things happened quickly when I needed surgery within a year of our wedding. We drove to the Cleveland Clinic for a second opinion and we were both surprised when the GI performed a sigmoidoscopy while Mike was in the room. So much for privacy! The surgery went went well and kept me in remission for a few more years when a second surgery was required. My surgeon at the time was concerned about having enough large bowel left to reconnect and said I might have a colostomy afterwards. The thought of having a colostomy at 27 scared me a lot, I perceived it as an "old persons thing" and thought it would be smelly and noticeable.  We still wanted to start a family but knew my health was an issue so I went ahead with the surgery. Even then Mike didn't balk at the idea of me having an ostomy, if it gave me my health back then he was all for it.

After my surgeries in 2010, I started to get more involved in social media groups for Crohn's, Short Bowel and ostomies, it amazed me how many people would post about spouses not being supportive of the health issues, ostomies and the stress involved with living with  chronic conditions. Some even posted that their spouse or significant other left or threatened to leave them if they had an ostomy. It shocks me that people look at the ostomy so superficially. Mike can't believe the posts I've read him either. He doesn't see the ostomy as a part of me, he just wants me by his side.

I firmly believe that I wouldn't be where I am without Mike by my side. He has been my biggest cheerleader, supporter and friend. He has encouraged and pushed me to get healthy so I can be the best mom and wife I can. He encourages me in my advocacy and desire to help others. Things haven't always been rosy but I wouldn't trade the last 25 years with Mike for anything in the world! He has kept me Living, Loving and Laughing (even through the tears) for 25 years and I look forward to many more years with him by my side!

Mike and I last fall.

All my boys! The ones I live for!

Alive thanks to HPN!

Everyone has a cause or causes that are close to their heart. Some of the more common awareness weeks or months you see are  Breast Cancer, Autism, Heart diease, Diabetes and Multiple Sclerosis. I myself have done bike rides and walks over the years to support many different causes. But in the 5+ years since my bowel resection that left me with very little small bowel and an ileostomy, my passion is to help those with Short Bowel Syndrome, TPN Dependency and ostomies feel like they are not alone in coming to terms with the changes in their life and how to cope..

Every year the first week of August is HPN Awareness week to raise awareness for those on Home Parenteral Nutrition (HPN) also known as TPN (Total Parenteral Nutrition). In the 1960's after watcing several patients die after succesful bowel surgery, Dr, Stanley Dudrick began working on an idea of how to feed those who couldn't eat by mouth. He developed a nutrition compound that could be infused through a vein and raised beagle puppies for 287 days on TPN. That led to trying it on 6 patients successfully in 1966. Since then thousands of people have used HPN to survive and live, newborns, childrend and adults included. There have been children that have grown up on Dr. Dudrick's invention. 

I know that I would not be where I am today without living on TPN for 2.5 years. During those early years, I was unable to eat enough calories to recover from surgery, gain weight or strength to live. I owe my life to Dr. Dudrick, the early beagles and all the early patients on TPN. Without all them, we would not have the medical & scientific advances to help people with intestinal failure to keep living. 

Thank you Dr. Dudrick for keeping me and many others alive to Live, Love and Laugh again!

Dr. Dudrick and one of his beagles.

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!