Wishing everyone A Merry Christmas!

 It never ceases to amaze me how quickly the year passes and it's Christmas time again. Everyone is in high spirits (or trying to be) during this time of shopping, wrapping, baking and celebrating. But there are many that are not well enough to get out to shop or celebrate or are financially strapped due to exorbitant medical bills, it's a tough time of year. You feel alone and out of the spirit. It takes much energy to "get it all done" whether you are a "normal" or "medically challenged". I personally have been taking more naps and saying no to invites or at least trying to. But it's hard when you don't want to hurt others feelings. 

For me the magic is just starting, the presents are bought & wrapped and cookies baked (I actually relinquished this task to my boys, messy kitchen and all! See I am trying!) Tomorrow will be a day for just the 5 of us but will be squished between days of family celebrations. In one way or another, we will get to see our entire immediate families (athough due to travel schedules, not all at the same time!) I will try and stay away from all the sweets I am not supposed to eat and follow my SBS diet but I know I will cheat a bit. Naps will be scheduled so I can be at my best and most chipper. They boys have asked to attend midnight Mass tonight, which I agreed if we could stay in bed until 9! Not sure if that will happen but I hope so (although they are teenagers and seem to sleep all morning but for some reason they wake early on Christmas!)

To all my friends I would like to wish you a Merry Christmas, Maligayang Pasko, Happy Hanukkah, Feliz Navidad, Happy Kwanza, Happy Boxing Day, and Happy Holidays. To those of you who do not celebrate those religious holidays or none at all I wish you peace and health this Holiday Season so that all may continue to Live, Love and Laugh into the New Year.

Michelle

You look great...

This is something an IBD'er hears a lot! You look great on the outside but feel absolutely horrible on the inside. Crohn's, Ulcerative Colitis are 'invisible" diseases, you can't tell that someone has them by just looking at them. Many of us have figured out how to deal with the pain and cramping, diarrhea, weight loss, fatigue,  bathroom urgency, medication side effects among other things to hide that we are feeling well. Over the past 30 years, I have learned how to hide or pass off all of the symptoms listed above, not only from friends and co-workers but also from my husband, Mike. I allowed myself to hide what was going wrong because I didn't want or have time to be "sick". I just dealt with it. I was also diagnosed when there was not much information on Crohn's available or at your finger tips like there is today. So I learned how to suffer alone.

Thankfully, this is IBD Awareness week to raise awareness for those suffering with Crohn's & Colitis. People like me don't have to suffer alone anymore. CCFA.org has many resources for newly diagnosed patients as well as those who are still struggling with their illness. Facebook has many(closed) groups for those with IBD that you can join and share your pain with those that understand what you are experiencing. The closed pages allow you to share the pain and often embarrassing symptoms without grossing out or overly worrying those you love. I have found much support from both reading and contributing in these groups. Reading about others experiences allows me to learn how better I can manage my disease and also encourage others to live their life. Thegreatbowelmovement.org is a social organization group that raises awareness for IBD along with encouraging patients to embrace their disease, spread awareness and to be proud of their experience.

You shouldn't have to hide behind closed door anymore if you suffer from IBD. So wear purple, post a #IBDselfie and share your story. Go out in the world to Live, Love and Laugh even though you are hurting..someone understands what you are going through!

Giving Thanks and Making a Wish...or two

Happy Belated Thanksgiving..I have much to be thankful for especially my husband, sons, parents, siblings, in-laws, wonderful friends and extended family. Most especially I have my life to be thankful for, I get to enjoy spending time with all those mentioned above. I also get to wake up each day to spend time in the beautiful world we live in (even on ugly, rainy days like today!). Sometimes it's hard to be thankful when you are going through rough patches with your health or relationships. 

Yesterday I caught a TV clip about how the Make a Wish foundation got it's start. It was a very touching piece about a young cancer patient who wanted to grow up to be a police officer and his mother worked out a deal with the local police force to make him an officer for a day. She even tailored an official uniform to fit him. It was one of the best days of his life but sadly he passed 2 days later. This act of kindness has grown into an amazing organization that have granted wishes & dreams for thousands of health-compromised children. 

It was a very touching piece that got me thinking about what I wish for...I wish that for a healthy long life for me and my family, that illness, disease, or accidents  do not affect those I love, a world without riots, war or discrimination, that my children grow up healthy and happy and follow their hearts to find love and happiness, that I can live each day to it's fullest, and that I can connect with others with similar health conditions to not feel alone and adjust to their new "normal".  

I am realistic enough to know that some of my wishes won't come true but I can try to make my life and the lives around me better by just being here to pass on a positive outlook and welcoming smile to those that need it. Every life is worth living...is someway we help each other to Live, Love & Laugh another day.  

(FYI you can find more Wish organizations for children and adults at http://www.thriverx.net/resources/resources.htm )

Hate the tired feeling....

One of the biggest changes I have noticed in my life in the last 4 years is how my energy levels have changed. Low energy and fatigue wasn't new to me prior to SBS because thanks to Crohn's Disease I was either fighting anemia or low B-12 levels. When I lost most of my large intestines in the early 1990's, I also lost my ileocecal valve which separates the large and small intestines along with absorbing the vitamin B-12. Your body doesn't store B-12 like it does iron so the best way for me to increase my B-12 levels is to get monthly shots, which I have been doing for many years now. Lack of B-12 causes tiredness and fatigue but once I get my shot I can notice a difference.

This is how I feel sometimes!

When my Crohn's is active, I have been anemic and fought low iron counts.When your red blood cell numbers are low, supplements can help bring your numbers into the correct range and give you more energy. Iron pills always used to make me severely ill so I couldn't take them. Over the years, I have had iron and blood transfusions to increase my blood counts and energy levels. 

Thankfully both my B-12 and iron levels are in the normal range but I still feel tired. My fatigue is more related to malabsorption caused by having Short Bowel Syndrome. By following the Maximize Health! diet and also taking IV fluids daily, my body is able to absorb the nutrients it needs to keep my body going without the aid of TPN. Even with doing those things, I am still not absorbing all the nutrients a normal person does. If I do too many things in a day or several days in a row, I am completely exhausted. My mind still hasn't caught up to my body in terms of what I think I can and can't do. I try to manage my activities so I don't overdo things (or more likely I look at the calender and realize I over-booked myself on accident) so I have the energy to take care of my self and my boys. When I have over-booked things, there is nothing like a good nap (and sometimes just a power nap) to give me a enough energy to get through the day. Sometimes I take a few "down" days to recharge when I am really tired. Many times, Mike will remind me to lie down or cancel things so I don't overdo it. My mind still thinks I have the energy to keep going like the Energizer Bunny I used to be, even thought it's been over 4 years I still forget I am not the same.

Please don't be offended if I pass on an event or not sign-up for something, it's not about you..it's me looking out for myself. So if you happen to see me closing my eyes for a few minutes or napping, I am just trying to recharge so I can keep Living, Loving and Laughing!

Today is....

World Ostomy Day! The United Ostomy Association of America has declared October 4, 2014 as a day for patients to Live, Learn & Share about living with an ostomy.  There are many reasons for people to have ileostomies, colostomies or urostomies ranging from birth defects, illness, cancer, abdominal trauma from car accidents, war or gun shots and many other reasons. No one wants to have an ostomy but if it's a choice between life and death I think most of us would choose LIFE!

LIVING with an ostomy wasn't easy at first. It took a long time to finally accept it but putting up a mental block to not deal with it was not an option. In the beginning I didn't think about it, the appliance was just there.  About two years after I had my ostomy, I was talking with my Psychiatrist neice and mentioned that I didn't know if I had accepted my ostomy but looked at it as "it is what it is". her response was, maybe that is your acceptance. I had never looked it that way but I think she was right, I had accepted it on my terms and went on living my life.

LEARNING how to change my appliance (& keep it on) took several months of trial and error. I had a fear of going out and having a leak. Working with a nurse who specializes in Wound & Ostomy care, helped me find the correct products to use. I started taking an "emergency bag" with me in case of a leak. The first big event, I felt strong enough to attend after my surgery was my Aunt and Uncle's 50th wedding anniversary celebration. Getting dressed took a while to find  the right clothes that fit (I was still very thin at the time) and also "hid" my appliance. I was nervous about seeing all my relatives but wanted to see them at the same time. Unfortunately on the drive there I had a "leak" and had to turn around and go home. I cried the entire way home because I was upset and embarrassed about why I couldn't make the event. As unpleasant as that evening was, it was just another bump in the read to learning how to live.

By writing this blog, I have learned to SHARE what I have gone through to help others learn how to continue living again. I also try offer support to spouses and family members so they can help their loved one . Patients can find support in local groups & on-line. The UOAA has a great website for reference. Inspire has a great group of people who share and sympathize with each other.  Facebook has many open and closed pages that Ostomates can join to share their experiences, you just have to figure out what works best for you.

When I first came home with my ileostomy, I was ashamed and embarrassed. I knew no one with an ostomy nor how to live with one. I felt everyone could see it or smell it.I worried that I couldn't live life like I used too. Four years later, I have met some wonderful people who have helped me embrace my life and my ostomy. Without these people (whether I know in person or on-line) have allowed me to talk about my experience without worrying how knows about it. By Living, Learning and Sharing I have continued to Live, Love and Laugh!

A chronically ill parent always worries...

 Wow, it's been a long time since I've posted anything and I apologize for that. We have finally settled back into the school & fall activities routine, the days start early and seem to go late! We are starting to look at colleges for our oldest which is a real eye opener. It seems like just yesterday Alex was starting kindergarten! Even though he's looking forward to leaving home and starting college, I know I will never stop worrying about him!

Yesterday, I got the pleasure to watch my newest niece for the morning while her parent's were working (really it was cuddling her while she slept on me!). While holding her, my mind started wandering back to the days when we were just thinking of starting a family and all the "what if" questions we had.

• *What is something was wrong with them?
• *What if one of the pre-natal tests come back showing something wrong?
• *What if one of our children has Crohn's Disease?
• *What if we aren't good parents?

There are so many more questions that I could list but you get my point. My biggest fear has always been that one of my boys would be diagnosed with Crohn's Disease. When you suffer from a disease, the last thing you want is to have a loved one go through what you have experienced first hand. Studies have shown that 5 to 20% of those with Irritable Bowel Disease have an immediate family member with IBD. Children of parents with IBD have a greater risk of developing IBD and the risk is greater with Crohn's Disease than Ulcerative Colitis. Neither my parents nor siblings have IBD so I am not sure where mine came from. I do have immediate and extended family with Celiac Disease (gluten allergy), which is another auto-immune disorder so I believe there is a connection from that aspect.

Do I want my kids to have IBD? Of course NOT! Would I be surprised if they were eventually diagnosed with IBD? Absolutely not! I do worry more than the average parent and will watch over them a bit more when they complain of stomach issues (outside of any stomach bug that is going around) and will get them to a GI if I feel it's needed. But I can't live my life worrying everyday that something might happen someday, that would not help me or my IBD.

No matter what chronic illness you have as a parent, there is always the worry that you will pass it on to your children. Mike and I didn't let my Crohn's stop us from having children. Luckily, my pregnancies were easy and my Crohn's was in remission during all 3 pregnancies. I will always have a little fear of the unknown (who doesn't?) but for now I am going to cuddle Baby Z and teach her to Live, Love and Laugh through Life!

Me & Baby G!

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

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

What just happened???

Flashback to early February 2010...

Now for the good stuff...I started TPN on Saturday January 30 as a temporary measure to "beef" me up for surgery. On Tuesday evening while Mike was visiting, my surgeon checked in on me to discuss the surgery. He was still on the fence about it because my belly felt soft but I still wasn't passing anything. We decided to go ahead with the surgery for the next day. All I remember of the next day was that sometime mid-morning I started having the worst pain in my abdomen that I had ever had (even worse than labor pains!) My belly also became very hard and distended and I started begging for pain meds to make it stop. At one point I remember my surgeon and his residents coming to check on me since the nurses had called him about my worsening condition. He bump up my surgery since they had just put someone under anesthesia. They soon took me down to the pre-op area where I continued to beg for pain meds and pray that this would all be over soon. Finally I was taken into the OR but I don't remember anything until I woke up on a day or so later (I think...) in the ICU with my family around. When I think about that time know I remember seeing happy but worried faces looking at me and a bunch of questions running through my head. What had just happened?? Where was I? Why do I have all these IV poles and pumps around me?  Mike, who had been by my side ever since the surgery, told me that my bowels had ruptured and went septic and I now had a jejunostomy, j-tube and TPN for life.  WHAT???

A jejunostomy means that they had formed an ostomy at the upper end of my small bowel close to my stomach. The stoma and bag were located under my left rib cage in my upper abdominal area. The j-tube was located where I still had some extra small bowel connected to what was left of my large bowel and rectum. I was being fed by TPN through my vein and Enteral Nutrition (EN) through my j-tube.

It took several days for me to comprehend everything that had happened! Soon I was moved to a regular room to start recuperating. My Dr wanted me to eat "anything and everything" I wanted to keep the desire for food although he had no idea how much I would actually digest. So I began to eat and quickly noticed everything flew right through me! I craved chocolate milkshakes and would beg anyone to bring me one! My fighting spirit took over and I began walking the halls to get my strength up. "George" (my IV pole) and I took many laps with my visitors. My Dr recommended that I file for disability but I was adamant that I was going back to work and wanted to walk in the Flying Pig half-marathon in May! 

A nurse from ThriveRx visited me to discuss how to go home on TPN and EN feeds. Talk about overwhelming! On top of that I had to learn how to change my ostomy appliance. While you are in the hospital the nice WOCN nurses take care of that for you! Somehow I managed to talk my Dr into discharging me on February 17th, my youngest son's 7th birthday! I really wanted to just be home with my boys and sleep in my own bed. Donna, my ThriveRx nurse, got everything arranged and Mom and Dad brought me home. That evening was more overwhelming than anything else I had every experienced! I can't tell you how many boxes Donna brought with her and what all the medical supplies where! Sadly I received more presents than Jake did but I think the best gift was Mom was home after 3 weeks!

All I knew I was home to begin trying to Live, Love and Laugh again...



Me and George..my new BFF                                    
   

                                                                 George & trusty Peter Panda!

Life was good, until....

Sorry for taking so long to add to my story but as I posted before I had some sick kids last week!

So, through the early 2000's I concentrated on raising my boys, working and just living life. I started exercising again after my 3rd son. I started most days with an early morning workout before work, get dressed and go straight to work. Mike had his routine for getting the boys up and to daycare and school and I took over after work. It helped that I worked at the gym where I worked out so it cut down on my travel time. I started with treadmill and weights and eventually added spinning to my routine. Pre-kids, Mike used to go on long bike rides on the weekends and I would go on short rides (mostly fundraising type that were supported or on trails). When I got into spinning, we started riding more on the roads (it was nerve-racking getting used to cars flying by!) on weekends when we free time and a babysitter. My longest ride was the MS150 although I only did 100 miles, it was my longest ride ever! I also started doing Pilates and walking. I even completed 2 half marathons during the summer of 2009.   I wasn't one of those super crazy exerciser but knew that it made me felt better and helped keep my Crohn's and stress level under control.
As a young couple, one of our dreams was to teach our kids to ski so we could go as a family. We started our oldest while he was in kindergarten and gradually added the other two. It was fun taking them to the local hill and watching them learn and have fun.

I was taking Imuran regularly but also started having an occasional bout off feeling "clogged" or worse a bowel obstruction that I could usually wait out and stop eating until it cleared. Sometimes it would take vomiting to straighten things out but I tried to avoid going to the ER at all costs to avoid being admitted. I was too busy to spend a few days in the hospital! My GI was aware of my obstructions and prescribed the normal tests, barium series and colonoscopy. But my issues always seemed to be above the scope area and since I wasn't having the blockages consistently, he didn't want to operate. (I totally agreed with this!)

On Wednesday January 27th, things started normally with a work-out, work and plan for lunch. Around 11:30 I felt the familiar pain of a blockage coming on, by noon I knew I wasn't going to lunch and asked a friend to drive me home. I texted Mike that I was having someone drive me home, he knew it was bad because I never relied on someone else to get me home! By the next morning, I knew I needed to call my GI and be checked out. By that afternoon, I was in my own room with pain meds and an NG tube.  (For those of you that don't know what an NG tube is, it's a nasogastric tube inserted through your nose, down your throat into your stomach to drain the contents. It is so NOT my favorite thing!). The plan was to wait and see if things would start moving on their own. In the mean time I also consulted a surgeon just in case surgery became an option. On Saturday, I was visited by a covering GI who had looked at my labs and saw that my albumin levels were very low and wanted to have a PICC line inserted in my arm and TPN started. TPN??? What was that?? I had no idea what was happening except that I was frightened. He also explained that I needed the nutrition in case I was going to have surgery. Since things weren't changing, I knew that Surgery was a huge possibility. So I consented to having the TPN started figuring it was temporary until after surgery and I was stronger. For a few more days things were in a holding pattern....I will leave the story for now but want to share a few pictures of me Living, Loving and Laughing before my life changed!

Under the weather...

Sorry for the long time between posts but I have been fighting a head cold/flu for the last two weeks and finally feeling better. On top of that I had two boys home sick with the flu also.  It's been awhile since I've been that sick and have forgotten how much it takes out of you! The medicine I am on for my Crohn's Disease works great to keep me in remission but is an immunosuppressive so it takes me longer to fight anything off. I religiously get the flu shot so I hope it kept me from being sicker than I was.

Anytime you are sick with a chronic condition, you need to be more cautious of staying hydrated. My body reacts quickly when I am not feeling well and paying attention to what I'm drinking. I try to drink 1 liter of Oral Rehydration Solution ( basically salt water) that my kids lovingly call "crap water"! 😝 If a normal person were to drink it, it would taste like a big gulp of ocean , but when you tend to be dehydrated, the salt isn't so noticeable. I like it mix the ORS with Propel water and keep it very cold. During the hotter months, I freeze them and carry them with me wherever I go. I have even found these awesome bottle tube socks called "Freakers" which come in a bunch of fun designs (flags, penguins, & plaid to name a few) and stretch to fit many bottle shapes and sizes. Another thing I can do is infuse extra IV fluids to fill in what I can't take orally. 

With my next post, I will continue the story of how I came to have SBS, TPN and all the other changes in my life. But for now I am just happy to feel up to Living, Loving and Laughing again!

Hydration Matters...all the time!

One of the things I struggle with from SBS is hydration due to the lack of large bowel. A goal of this blog is to educate others with Chronic Health issues of other issues that might be affecting their body. ThriveRx has a Webinar series geared specifically to people with Short Bowl Syndrome called Maximixe Health! This month's webinar is on Hydration Matters focusing on learning the signs of dehyration and how to stay hydrated. These webinars played a large part in my goal to wean off TPN. Whether or not you have SBS, I hope you find them as educational as I have.

You can register at the link below. The best thing about them is if time isn't good for you, register and a link will be emailed to you of the completed webinar.

Staying hydrated has allowed me to keep Living, Loving and Laughing!


https://www1.gotomeeting.com/register/926854624

Crohn's? Chronic? Whatever... Part 2

A little more of the story...


So I continued on with life, went to college, met my future husband and dealt with the occasional flare up. Prednisone became my friend but I wasn't always regular in taking it, I would take it pretty much when I remembered. When I look back over this period of my life, it seems like most special events were marked by the typical “moonface” of Prednisone. The “chronic” part of the disease really meant nothing to me, medicine made me feel better when I felt like crap but the disease really wasn’t interfering with my life that much. Within the first year of my marriage, I started having more symptoms than the meds couldn't control and surgery was brought up for the first time. In the summer of 1991 I had my first resection and started to feel better. I just "knew" that I had beat Crohn's and my life would be so much better. Several years later I started experiencing problems again and surgery was recommended. This is when I finally understood that I was going to deal with Crohn's and it's effect on my body for the rest of my life. I remember coming home from a Doctor's appointments in shock and got pulled over for speeding (I really just wanted to get home to my husband and cry!)...I must have been a sight because they let me off with warning and this was a city that never gave warnings!

In February 1995, I had my 2nd resection of the large bowel. I was left with about 10% of my large intestines and rectum. I didn't take me long to realize that food went right through me. I lived on Imodium and when that didn't work Pepto-Bismol did! The best part of this surgery was that it left me healthy enough to start a family!

Below is a picture of my 4 boys! The lights of my life!! One has been with me for almost my entire journey and the others added along the way! They are what keep me Living, Loving and Laughing!!! 

Rare Disease Awarness Day

Instead of filling you in on more of my story I would like to instead raise awareness for Rare Disease Day. A Rare disease in defined as disease or disorder affecting less than 245,000 people in the US (or 1 in 2000 in the EU). The over 6000 rare diseases can have varying symptoms from patient to patient and disease to disease. Many rare diseases have common symptoms that get overlooked and misdiagnosed leading to incorrect or no treatment. Also many of the diseases have no specific cure which can add pressure to the patient and their families either socially, emotionally and financially.

This years theme is CARE which can include special equipment, medicines, physical therapy, respite care for for patient and family and research. So lets all Join Together for Better Care.

So for now keep on Living Loving and Laughing!

More information can be found at http://www.rarediseaseday.org/

Crohn's? Chronic? Whatever?!?!!

This journey I am on started way back in the mid-80's as a teenager. The actual date is hard to pinpoint but during the fall of 1984 I started having changes in my bowel habits, pain in my gut, fevers and weight loss. The weight loss I didn't mind at the time since I was eating whatever I wanted and not gaining...not the best thinking I realize now but I was young and naive. My first diagnosis was an ulcer but I am sure I didn't tell the doctor all my symptoms (really, who wants to talk about going to the bathroom??) Finally in January 1985, my mom came home to me lying on the couch in pain and had enough. She called our family doctor and told him she was taking me to the ER to find out what was going on. Now I was an ER veteran for broken bones and stitches but this experience, was completely different. They were not sure what they were looking for so I received my first pelvic exam and my first sigmoidoscopy, not a pleasant way to be introduced to either. I was admitted for more testing (my first colonoscopy and barium series YUM! NOT!) which I thought was cool because I was missing school. Finally, I was given a diagnosis of Ulcerative Colitis, a script for prednisone and discharged. 

Things seemed okay for several months until I spent spring break in Texas with my sister. I am not sure what caused it, if anything, but I remember a lot of a pain and phones calls to Mom.  This was my first flare, I'm not sure if I was still on prednisone or not but soon after that I was referred to my first Gastroenterologist (GI). He scheduled another colonoscopy for the summer (the prep was castor oil! YUCK!) to see for himself what was going on. This time I got the diagnosis of Crohn's Disease and that it was chronic...what? Honestly what 17 year old understands what chronic means? Sure I understood the definition but not how it pertained to my life. The doctor’s office gave us some basic information about Crohn’s and the Crohn’s and Colitis Foundation (CCFA) but other than that I had no support or information on how to deal with this new thing in my life.

I have to go for now…just heard the dogs getting into something and the kids need to eat! So for now keep on Living, Loving & Laughing.