Letting it all hang out...

Several weeks ago a story was circulating on social media and the news about a young British woman who posted pictures of herself in a bikini and ostomy bags. Bethany Townsend is a model who has had Crohn's Disease almost her entire life. She has suffered through medications, surgeries and a feeding tube. In 2010, her bowel ruptured leaving her with 2 ostomies. While on holiday, pictures were taken of her in a bikini with her ostomies showing which she published on Facebook and things went viral from there. 

Part of me wants to applaud her for not feeling ashamed of her Ostomies and showing off her fantastic body. However a larger part of me is frustrated with the stigma that comes with having an Ostomy. Why is it looked at differently than say a prosthetic leg, orthodontic braces or oxygen tubing? The majority of  Ostomates didn't wake up one day saying "Hmm I am going to go buy an ostomy today" but rather woke up in a surgical recovery room or ICU after surgery for disease, cancer or trauma with the Doctor saying.."I saved what I could and had to  create an ostomy". There are also the few that make the decision to have ostomy surgery due to cancer or illness to get them on the road to recovery. 

Considering I am twice her age, have had 3 children and multiple scars I choose not to wear a bikini like Bethany does. In one of her interviews she mentioned that since her pictures have gone viral, a lot of people in the US have been posting pictures of themselves with their ostomies.  I completely disagree with her statement, there is a public and private Ostomy forums I am on where other ostomates have been posting pictures of themselves in their bathing suits for a long time when they are on the beach, at a pool or in the privacy of their bathrooms. There are also public support groups such as the Great Bowel Movement http://thegreatbowelmovement.org/ and Awestomy of Facebook https://www.facebook.com/awestomy?fref=photo where Ostomates relish in their health and their bodies no matter if they are young, old, thin, heavy, in-shape or not. 

Whether or not she posted the pictures to further her career or for friends and family, she did raise positive awareness for those of us with an Ostomy. So I challenge you to this..if you ever see someone on the beach or at the pool with their pouch hanging out, don't stop and stare but congratulate them on still being here...most likely, they would not be here to LIVE, LOVE or LAUGH without it!

A fantastic week at the Oley Conference

All I can say is WOW! The Oley conference is an amazing place to learn about about new research and therapy, check out new products and most of all connect with other consumers, caregivers and professionals that deal with TPN or EN day in and day out. This years theme was "Help Along the Way!" a great slogan that we all really need day to day..no matter what our health requirements are!

Besides the ThriveRx booth which displayed our products, educational materials and awesome staff, ThriveRx and the Oley Foundation provided a "Hydration Station". The purpose of this display was to educate Short Bowel consumers on the different types of Oral Rehydration Solutions that are best for us to drink to avoid dehydration hydration. We offered the Jianas Brothers ORS (which I drink) with CrystalLite flavoring, Ceralyte, G2 with salt and plain water. They were ordered from saltiest to no salt. We had many people stop by to try the ORS options and even had a few converts that had never tried them before but found a drink they liked. We also offered samples of the ORS, Ceralyte and Crystal Lite for people to take home and try on their own. Orlando was very hot and humid so having the Hydration table was nice for people to come and fill-up their water bottles to keep sipping all day long.

I also got to sit in on an amazing presentation of SBS treatment, future cures strategies for Intestinal Rehabilitation. Dr. Daniel Teitelbaum is working on lengthening the bowel by using an interal device inserted in the intestine for 7 days which slowly increases the length. Research has show growth of 12cm in just 7 days! They are currently in pig trials and hope to start clinical trials in a year. Amazing stuff! I also heard from Michael Seres, a small bowel transplant patient from the UK, who spoke on the power of social media when working with your medical team. I have followed his blog "Being a Patient isn't easy!" detailing his transplant surgery, so I was excited to connect with him.

Above all, I loved connecting and re-connecting with other TPN/EN consumers. I saw many people I met last year, (Errol, Jo, Duvall, Kat to name a few) and met many new people too. It's a great place to meet others that have gone through similiar health experiences and completely understand what you live on a day-to-day basis.

For those of you that are using TPN or EN, I highly recommend attending next years conference or one of the upcoming Oley Regional meetings. The people and topics are very inspriational.

Remember we all need a litle "Help Along the Way" to keep Livng, Loving and Laughing!

 

Welcome to Oley!

The Hydration Station!

Our Booth!

 

It's that time of year again....packing UGH

Summer is finally here and so is our much awaited family vacation. But for rme it adds to my "packing" anxiety that I have always suffered from. Even a short weekend trip has caused much stress on what I could wear vs what I will actually wear. I have been known to pack a 50lb bag for a weekend trip and 3/4ths of it came home unworn. Short Bowel Syndrome and an ileostomy have caused my "packing" anxiety to be much worse. I no longer have to plan what I want to wear but also what medical supplies I need and where they need to be sent. The first thing I do is call the hotel to let them know I will have a package coming and will need a refrigerator to keep supplies cold. Most of the time they don't charge for deliveries or refrigerators but have had that happen once even after I explained it was for medical reasons. I submit all my supply orders with the correct shipping address and arrival dates so everything arrives on-time. TPN and some IV fluids are refrigerated and  date sensitive (anwhere from 7-14 days) so it's important that it arrives at the correct time. ThriveRx is very helpful about getting my supplies where I need them to go but I still have to figure out how many bags of fluids, tubing, flushes, port change kits etc. I like to be as thorough as I can to avoid emergency shipments of supplies.

My ostomy supplies are another issue, I have to plan enough to cover the trip but also extra's in case of an accident or blow-out. Those supplies are harder to get since you can order only from the supply company you have signed up with, it's not like you can walk into any pharmacy and pick up any supplies you need.  

Since we are driving, all the medical stuff takes up precious cargo room so I try to pack as light as possible. When I fly, I always take a days worth of supplies in case my checked bag gets lost. Flying has it's own problems with going through the security checkpoint. I am always getting asked what fluids I have in my pocket and they check any fluid bags in my carry-on. Each time I fly, I allow for more time to get through screening since each airport is different. One might let you go through easily where others give you the whole bomb pat-down. You just never know!

After the family vacation, I am going to the Oley conference in Orlando. The Oley foundation supports those on Parental and Enteral nutrition by education, outreach and interaction. I look forward to meeting others that I interact with on their Inspire website. The attendees are from all walks of life, medical conditions and ages. It's very inspiring to watch the young children that have never know a life without lines and backpacks go about their lives like it's no big deal! I willl keep you posted from there.

So for now I must finish packing so I can rejuvenate at the beach to keep on Living, Loving and Laughing!

The small amount of supplies I am bringing just to get me started...

What's that thing on your chest???

Hi all! Sorry for the long time between posts..there really shouldn't be any excuse but I plan to sit down and write something and then get sidetracked. I will try to do better.

Anyway back to 2010. When I came home from the hospital in February, I still had the PICC line in my arm for TPN & medication infusions. A PICC is a peripherally inserted central catheter which means it's a line that's inserted through a vein in your arm and then threaded through to your heart with the tip resting on your superior vena cava. 

In May 2010, I went in for outpatient surgery to have a port-a-cath placed. A port is similar to a PICC but more permanent. One end has a septum which is surgically placed below the collar bone under the skin and again the the line is threaded through a vein into your heart. A needle is inserted into the septum, the other side has the end caps on which to hook TPN, chemo, take blood draws or other meds. When you remove the needle, all you see is a bump on the under the skin. I liked having the idea of a port so I could swim with the boys or shower without covering it up. 

Not long after I had the port inserted, Mike began taking care of accessing the cleaning, changing and accessing the port since my home health care was going to stop and I didn't want to go an infusion center to have them care for it. It took me 2 years before I finally got up the courage to learn how to access myself. I handle all of my line care now but make Mike refresh his memory every once in awhile. I do not use it for blood draws nor do I let anyone else handle it. Following sterile protocol, I have had only 1 infection in 4 years (fingers crossed).  

Infections can be hard to treat or deadly so it's important to watch for signs of fever, redness or if the line gets pulled out. There is no wrong type of line to choose for what works best for you.

So if you ever see my port sticking out of my shirt, you now all about the lifeline that keeps me living, loving and laughing!

Also, ThriveRx is having a webinar on Central Venous Line Care and Practice this Thursday May 29th at 1pm est. You can register through the website at www.thriverx.net . Even if you can't make it, register and a link will be sent to you to watch at your convenience.

Here's my port when it's unaccessed.

Here's what you see peaking out!

Short Bowel Diet??

One of my goals with this blog is to educate others with SBS on things that effect us differently. It didnt' take me long to realize how different foods affected me differently my initial surgery. At the time I only had inches of small bowel and everything literally flew through me. I couldn't make it through a meal without going to the bathroom at least twice. Certain foods went through faster like Coke and ice cream (those malts I craved were not doing me much good!). In the fall of 2011, I had a revision of my small bowel and jejunostomy which left me with about 2' of small bowle and an ileostomy (an ostomy further down the small bowel). Not long after this surgery, my surgeon started weaning me off TPN. After a visit each month, he would try dropping a bag to see how I would do. At the same time I started working with a Short Bowel Dietician at ThriveRx on what is the best foods to eat. Between this surgery and following the diet, I am able to stay off TPN.

ThriveRx offers Webinars for the Maximize Health! program specifically designed for patients with Short Bowel Syndrome. On Wednesday, May 14th at 1pm, there will be a webinar about "How to Thrive on a Short Bowel Syndrome Diet" by my dietician, Maria Karimbakas. If you would like to register for the webinar you can do so at the link below. Don't worry if the you can't make that time, just resgister and and copy of the webinar will be emailed to you to watch at your convenience.  


Also, Happy Mother's Day to all our mothers out there! We wouldn't be here without out you! Thanks for allowing us to Live, Love and Laugh!


https://www1.gotomeeting.com/register/495093472

A beatiful May Day and Flying Pigs...

Spring has finally arrived in Cincinnati! The first weekend of May is always the Flying Pig Marathon and a bunch of other events. In 2010, prior to my surgery I had registered to walk in the Flying Pig 1/2 marathon in May. After my surgery for the bowel obstruction and SBS. one of my first questions to my Surgeon was would I be able to get healthy enough to compete in the race in May. I know he thought I was crazy for asking but I had completed it in 2009 and loved it and was looking forward to participatig in the event again. 

In early 2009, my sister in Dallas had already commited to the race with some of our cousins and wanted me to walk with her for support in case she was not prepared enough for the race. I thought abou it and figured I was in decent enough shape and had time to alter my work-outs to include several long walks to prepare. By the time Kathy flew in for the weekend, our 70 year old Dad had decided to walk also. We had a great day and several othe cousins walked with us along wth the thousands of others that were registered for the 1/2 marathon.  

After my surgery, then a second surgery for a lung infection, I realized that there was no way I could do 13.1 miles in 2 months. Initially after coming home, I could barely walk to the end of my driveway without assitance so 13.1 hilly miles was way out of the question. My sister, father, friends and cousins had registered to walk with me. On Sunday May 2, Mike and I woke up early to head down and cheer our family, friends and other participants on as they walked in the rain. We saw them around the 9-10 mile walk and then again at the end. After the race I found out that they had formed "Team Mickey" and walked in my honor! I was speechless, they knew how much this race meant to me and I was just happy being healthy enough to cheer them on!

Team Mickey 2010

SInce then Team Mickey has walked 4 more times including this year. My father is now 75 and completed his last 1/2 marathon yesterday. He had hardly prepared at all for the race but was determined to see me at the finish line. He and Kathy finished in 4 hours 16minutes and they make all of us proud! I have never asked them to walk for me but am honored none-the-less. I did have a few minutes of jealousy at the packet pick-up and expo, knowing I would never be able to compete with them on that level again.

This year the original "Team Mickey" had a beatiful spring day and added my neice to the crew. All finished in great time and I couldn't be more proud of them! These special people support me in more ways than I can every express to keep me "Living,Loving & Laughing"!

Team Mickey 2014

Team Mickey 2014 along the race course and at the finish line!

Meeting someone like me!

I have to start this with an apology to my husband Mike for my last blog. Initially I failed to note that I was still writing about my history and how I came to have SBS but failed to make note of the date. After he received a few texts and phone calls asking if I was alright, I added the "flashback" note. So in case anyone is worried, I am not in the hospital and haven't been in over 2 years. From now on when speaking about the past I will make sure I note that I am going back in time!

Early on in my recovery, my nurse, Donna, kept telling me about another patient that she wanted to put me in contact with. His history of Crohn's disease, Short Bowel Syndrome and TPN were similar to mine but we also were about the same age, each have twin brothers that are disease free and as a bonus, we live near each other. While in the hospital my brother, Ron, had done some research and found the Oley Foundation and the help they provide to those on TPN and Enteral Nutrition, But in both cases, I was not open to the help they could provide. Several months after being home, I finally picked up the phone to call Dave, the patient Donna had recommended I speak with. I learned that he had had surgery 15+ years ago leaving him with SBS and TPN for life also, unlike me he still has his colon though. He was the first person that I had spoken to that understood what had happened to me. I realized that I was not alone in the new journey I was on. I learned that he was training to run a 1/2 marathon later that summer for Team Challenge to raise money for the Crohn's and Colitis Foundation. I couldn't believe what I was hearing...you could still lead a normal life with SBS and TPN! He was the positive force that I could relate to!

I had many cheerleaders in my court, Mike, my parents, in-laws, family and many friends offering support and encouragement every day. But they didn't understand what I was going through from a patient perspective. Dave was able to offer advice and encouragement from being a patient. He had been diagnosed about the same age I was and had surgery in 1995 resulting in SBS and had been on TPN every since. He no longer needs TPN daily, can eat orally and also infuses additional IV fluids for hydration. We hit it off instantly and have been friends ever since. 

He was in the midst of training for a Team Challenge 1/2 marathon in Boston  with his wife and daughter taking place in August 2010.  I was speechless when he asked if he could "honor" me by wearing my name on his bib during the race and run for me and a few other of his friends with SBS or Crohn's.. I had never had anyone do something like that for me before. He also gave me a Team Challenge shirt with "Honoree" on the back! This would be his first race and marathon that he ever attempted!  All 3 finished, Dave and his daughter crossed the finish line together.

Since then they have completed 2 additional Team Challenge 1/2 marathons in Las Vegas. In November 2013 I was fortunate enough to accompany my sister, Kathy, to Las Vegas so she could also complete her 2nd half marathon for Team Challenge in my honor. She had also completed the race in 2011. It was an awesome and inspiring weekend to spend with Kathy, Dave and his family to raise money for a CCFA! 

Me, Dave, his wife & Kathy after the Pasta dinner the night before the race.

My Shirt, I have worn it for all the races even if only there in spirit!

More importantly Dave and I have been talking for the last several years of starting a support group for those with SBS and we finally are doing it. Our first meeting is schedule for April 26th from 1-3pm in the Cincinnati area. We hope we can help others like us to not feel alone. So if you know of anyone that would like to attend, here's a link to the information. We would love to meet others! If you have any questions or would like to attend please email me at mguinigundo@gmail.com

https://www.facebook.com/events/471671809625884/?ref_dashboard_filter=upcoming