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!!!