Who needs support?

Throughout my years of having Crohn's and dealing with its ups and downs, I had always turned down the idea of speaking with a therapist or support group of any kind. During the times I was down I would find something to distract me and push my problems to the back of my mind and forget about them. I was too strong and proud to admit that sometimes I needed the help. :Like many Crohn's patients I learned to "Grin and Bear it". I was (and still am) really good at masking how I feel, putting a smile on my face and saying (or pretending sometimes) that I felt fine, my symptoms weren't that bad or nothing was bothering. At an early age I learned that a smile was much better than a frown and it made you and others feel better. Bottom line was I never wanted people to worry about me.

My upbeat attitude has worked against me also. When I look back on the past 4-5 years and what led me to having the surgery that changed my life...everything was not fine. I was very thin, but I wrote that off to exercising. I occasionally felt feverish and took Tylenol or Motrin so it would go away. I would have blockages that would clear themselves. There were too many things for me to do and I didnt' have time to be sick. So when I got sick, I got what I was trying to avoid -  a lot of people worrying about me. Still do and probably always will have.

The biggest thing that has changed for me and I have spoken of this before..I met someone like me with Crohn's, Short Bowel and TPN dependent. Don't get me wrong, I had met many others with Crohn's over the years and even volunteered for a CCFA advocacy program to meet up with others. I knew there were many people like me but I chose to suffer in private. Meeting Dave gave me the reassurance that life could and would go on. He and I have spoken many times in the past about starting a "positive" support group that will help others with our health limitations. I am proud to say we are having our second meeting in the Cincinnati area on Saturday September 6 from 1-3 pm at Dave's house. We are encouraging anyone with SBS, TPN dependent or not to attend. You never know what you might get out of it...Life is too short to smile everything a way!

One of the best ways to keep Living, Loving & Laughing is to share your experiences with others...you might never know who you will help!

The Patient becomes the Caregiver..

Caregiver & Patient...

My family has always been very supportive of me when I have had to deal with hospitalizations and surgeries. Four years ago when I was very ill after my bowel resection, someone was always with me when Mike couldn't, or taking care of our sons so Mike could get some rest or visit me. No questions asked, everyone just pitched in and did what had to be done. By doing so I could concentrate on getting better and not worry about everything. One thing I never expected was for my older sister, Kathy, to fly home several times to be with me when things were very bad. I know she cares for me a lot but she has her own life, business and family 1000 miles away. Since my previous surgeries and recovery were not as serious, phone calls and email were enough to keep her updated. 

In 2010, she took time out of her busy schedule to spend several weekends in Cincinnati to visit me at the hospital. She was the last person that I expected to see when I woke up in the ICU after having the thoracotomy from the lung infection. Unfortunately for her I started going through ICU Psychosis and thought everyone was out to kill me including her. In my mind at the time, it would have been perfectly normal to see Mike, my parents, in-laws or siblings sitting next to my bedside but not Kathy since she lived so far away. Initially her being there made me more anxious and paranoid of which I feel terrible about now. 

I tell you all this because several months ago, my sister called all excited because she had scheduled an elective surgery that she has wanted for a long time. Kathy has always struggled with her weight. About 10 years ago she lost 100lbs but had gained some back over the years. She has walked the Flying Pig half marathon 3 times and completed 2 Team Challenge 1/2 marathons in my honor. While preparing for the second team challenge event, she struggled with some health issues besides her weight and was unable to complete the entire 13.1 miles. I had flown out to Las Vegas with my friends to cheer her on. One of my friends, walked several miles with her for encouragement and support. Although she cut out a few miles, she and I crossed the finish line together! Kathy was very upset that she didn't complete the entire course, but in my mind she did since she raised over $3000 for the Crohn's and Colitis Foundation! It was enough for me to spend time with her while cheering her on!

Not long after that she started losing again but this time it wasn't a diet but a lifestyle change. She now watches what she eats religiously, works out with a trainer, practices yoga and runs. Since February of 2013, her hard work has paid off with  a weight loss of over 110lbs! So when she called me after scheduling her abdominoplasty and arm-tuck, I knew I had to be there with her, no questions asked.  This past Wednesday she had her surgery and everything went well. For the first time I have become the caregiver and not the patient. It is completely different being in the family waiting room than being under anesthesia! When you are under everything is blank, the waiting room was a bit boring and very cold! Two of her friends did stop by to stay with me during the long procedure, which was really nice and helped pass time.

Before surgery she was more worried about what I was going to eat, not getting bored and  than how she was going to do things while healing. Being a veteran of many abdominal surgeries, I knew what to expect - not being able to stand or lift legs by yourself, showering, using the spirometer, emptying the surgical drains, etc. She wants to do more than she should but is listening to me when I tell her to slow down or stop. She has realized how much catnaps help A LOT! If you have  never been through a larger surgery, you have no idea how you can feel perfectly fine before going under to becoming this complete weakling who can't shower or stand by themselves. I have been able to help her using my past experience for things she had no plans for! Yes I have food and things to do but now she has someone looking out for her. She never needed to ask for my help and didn't expect it but I would do it again in a heart beat!

Whether you are family or friend I will do what ever I can to keep you Living, Loving and Laughing right along side of me!

Kathy and I in Dallas, 60lbs down!

2014 Flying Pig with Kathy & Dad..their 3rd together! At her goal weight!!

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