August of this year is now behind us, which has been known, unofficially, in the Gastroparesis community as Gastroparesis month. This year, no cure was found and we as a community are still struggling with finding effective treatments, but not all was lost. The Gastroparesis community actually has some reasons to celebrate! - AUGUST IS NOW OFFICIALLY ON THE NATIONAL HEALTH CALENDAR NOW!!!! Yahoo! This is outstanding news as now more people will become aware of what Gastroparesis is and hopefully it will help with the push for more research. We no longer have to request state proclamations to verify that our disease needs awareness or verify our cause. Much appreciation to IFFGD (International Foundation for Functional GI Disorders) for assisting in making this possible. - Prior to be on the National Calendar our Gastroparesis: Fighting for Change group had various members across the nation volunteer to request individual state proclamations. Yes, we were successful this year. We received state proclamations in approximately 1/2 of the US - some were for GP Awareness Weeks, others for GP Awareness Month. How exciting is that! Yes, my home state was one that was granted. - Miracles From Heaven - the movie - became available on DVD! What a great movie about Functional GI Motility Disorders, family, and faith. If you have not seen it yet, I would HIGHLY SUGGEST it! It is basically about a young girl that unexpectedly becomes very sick with Pseudo-obstruction (Her intestines were not functioning properly) and Gastroparesis (though it's not actually named in the movie, just briefly mentioned, the book and interviews have said that this was also a part of her health problem. (Gastroparesis is when the stomach is essentially partially or completely paralyzed and doesn't empty properly.) The movie doesn't fully describe the length of time that her illness lasted, but does a nice job relaying the pain and frustration we go through to receive proper medical care and the importance of support from family, friends, and faith. I can't honestly speak for everyone about how similar or accurate the symptoms are portrayed, as there is a vast spectrum of severity. I can say that I could relate very well to parts of this movie, but most importantly, to the pubic eye, especially the one's that don't live with GP or FGIMDs, it is eye-opening and an opportunity to build the discussion. - In the online GP community that I'm a member of, we have had many members have success at getting some awareness out locally in their own cities and states. Some have had movie days (watched Miracles from Heaven with family/friends or even church groups, some individuals have spoken and/or participated in medical conferences, others have created and shared awareness videos, some have been interviewed by local news (print, TV, and/or radio) to share their story and GP related facts, others have held meet-in-greets with other GPers that live near them. Additionally some members of our GP community have written and shared information in blogs, posted awareness meme's and facts on FB for their non-GP friends and family to read, and participated in events such as the #TAKEABITE4GP campaign and/or #Green4GP on various social media platforms. (TakeABite4GP is a campaign that a couple of our members began. The idea is to have people post pictures of themselves taking a bite for those of us that can't, to support of the GP community.) I must admit, is was great seeing so many non-GPers from all around the world share support for the GP community by sharing articles, pictures, comments, and more. A couple of GP friends and I were even nominated for the WEGO Health Activist Awards in one or more categories each. Even if none of us actually "win" being nominated is a "win" in and of itself as it helps us gain more awareness for Gastroparesis. - On the Twitter front, it's nice to see more and more medical institutions, medical providers, even research centers sharing more information about the need for Gastroparesis awareness, research, and more effective treatment options. - The Gastroparesis and Functional GI Motility Disorder communities are still trying to persuade Congress to approve #HR2311. This bill would help increase awareness, funding, and research for these illnesses, eventually leading to more health care provider being familiar with our illnesses, better treatment options, and possible one day a cure. We have had a few more Congressional Members co-sponsor the bill but we need more. Please help join us by emailing, calling, writing a letter, visiting, or even just signing our petition for support at https://buildquorum.com/actions/1996
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In reality I am still a rookie when it comes to having an ileostomy bag. In January 2016, I had my colectomy with ileostomy surgery as a result of Colonic Inertia. I am still learning as I go, trying new suggestions, and maneuvering through this new experience. However, along my journey thus far, I have made some personal discoveries that make life with an ileostomy easier. 1) Having an ileostomy has dramatically decreased the time that I have to spend in the bathroom! Emptying the bag literally takes a minute, whereas before surgery, it was common to stay in the bathroom for hours and hours before any relief was found. 2) I have drastically reduced the amount of medications, specifically laxatives, that I was dependent on for day to day survival prior to my colectomy. 3) Prior to surgery I was fearful of how often I was going to have to empty and change the bag. However, since surgery, I usually only have to visit the restroom a couple times a day (some people depending on their bodies and intake may be more often). The first month after having the ileostomy, I was having to change my bag numerous times a week, sometimes the same day. However, now, I only change it one to two times a week. Luckily, after the first month, leaks have not been an issue. 4) I tried a few different styles of ileostomy bags. My current preference and favorite has been the Convex Hollister. I have found the 2 piece ones to be the most comfortable and dependable one for me. 5) To keep the area around my stoma healthy, I use the stoma powder, barrier wipes, and moldable barrier rings. I prefer this much better than the stoma paste - though I had to use both the rings and paste to begin with until my stoma reached it's "normal" size. (It shrinks during the first month or two.) 6.) I prefer to take a shower with my bag still attached, though some people actually like to take a shower without the bag. To begin with, I tried covering my bag with a plastic bag to keep it dry while taking a shower. However, that was a huge and unnecessary nuisance. There is no reason to cover the ileostomy bag to prevent it from getting wet. It dries very quickly on it's own. I have heard of some people drying theirs with a hair dryer. I'm not sure which brand of bag they use, but my Hollister bags dry fast enough without worrying with hair dryers or any other drying technique. 7.) Swimming with an ileostomy is perfectly fine and rather easy. I was only able to go once for about 20 minutes, due to my health condition and current symptoms, but the bag was comfortably covered by my bathing suit and posed no problems or issues. Hopefully, by next summer, I will have my symptoms better managed and actually be able to enjoy the pool with my kids. 8.) With an ileostomy bag you can wear any clothes that you are comfortable in. I love wearing my sweatpants and yoga pants/leggings around the house. When I go out in public, I am usually wearing either jeans or jean shorts. The ileostomy bag is not noticeable under my clothes as long as it is empty (or near empty). I have found that wearing underwear that covers the entire bag is the most comfortable and desirable for me. I don't like it when the underwear "cuts" off in the middle of my bag. Most of the time I wear "normal" cotton underwear. If I am wearing a dress or if I am extra conscious about my bag for some reason, I will sometimes wear underwear that has some support, as they help keep the bag flat against my abdomen and reduce "ballooning." Do you have an ileostomy?
I would love to hear about your experiences, good and bad, as well as any ideas or suggestions that you would like to share regarding life with an ileostomy. I may bend, but I refuse to break! Everyone faces their own trials through Earth's journey. Whether it's relationships, health, finances, inner struggles or a combination of all, we have choices to make. Some will be easy, some will be hard. But regardless, we hold the power to decide how we will handle the challenges. I choose to be ME! You can like me, love me, or even hate me, but I will remain true to myself. I choose to remain kind. I choose to openly care. I choose to advocate for my health community. I choose to maintain my faith in God and humanity. I choose to provide hope and inspiration to others when I can. There will be haters. There will be those that believe the world revolves around them. There will be backstabbers and fakers. There will be "friends" that appear to be around, but when called upon are nowhere to be found. See the thing is - though I may care what others think - my life does not depend on others' approval. If you don't love me for me, or respect me for what I stand for, then you can step out of my way. Life is not full of happiness and joy 24/7. Pain, sorrow, sickness, and tears are inevitable. I choose not to sit silent! Criticism will not stop me. Mocking will not hinder me. The hurtful comments and words may put a dent in my spirit, but they will not break me. I will regain composure and continue marching forward. One thing I've learned in life is that nothing is perfect, no matter how hard you try. We must be willing to stand up when we fall, fight for our own wellbeing, be flexible, and willing to bend. I will not lie! I have experienced life struggles that have cracked me. More times than I can count I've depended on God to help heal my mind, heart, and soul when I felt like I was falling to pieces. Life has wounded me, my health has bruised me, people have disappointed me, tears and sorrows have drowned me. Faith in God and HIS plan has saved me numerous times. So while some sit high on their thrones, throw insults to injure, or make their judgemental accusations, I will stand tall! I will remain strong! I have an amazing team of warriors in my corner and GOD as my leader. So attempt as you may, I will take your heat. I will bend, twist, and maybe even crack. I will survive through disappointments. I will take my health one day at a time. I will live from my heart. The devil and his messengers may try to destroy me. God may send me on journeys that I don't completely understand or lead me into battles that are a test of my faith; All with a purpose of developing me into the masterpiece that HE envisions. I'll continue to accept all challenges and overcome any obstacles that become a part of my journey. I have an everlasting trust that God will not allow me to fully break! HE will continue to send calmness and support during my storms, even carrying me when I become too worn to endure any further. God is my maker and HE is my protector. I may bend, but I will NOT break! © 2015-2017 Trisha Bundy ALL RIGHTS RESERVED A "Me" weekend may be exactly what my body, mind, and soul needed. Initially, I was upset about having to stay behind while my family went on a fun-filled vacation. It was a difficult decision, but with the state I'm in health-wise, it was the only reasonable decision. I would have loved nothing more than to have been healthy enough to spend quality time with them on their trip, but it was just not possible this time.
Instead of being sad, feeling down, or guilty I decided to use the time to listen to my inner spirit. I took a vacation of my own, right here in the comfort of my house. To start the homebound journey off in high spirits, I joined some of my online friends on a Fantasy Cruise. With superpowers, positivity, no illnesses, and no worries we set sail on a grand adventure full of silliness and laughter where all dreams could come true and everything was possible! We learned more about each other, outside of the Gastroparesis realm. This creative adventure was a fantastic reminder that we are more than our disease, much more. Saturday was a "ME" day! Determined to rediscover my optimism and rebuild my inner strength, I relaxed. I allowed myself to be "sick". I didn't have to pretend to feel better than I was. I didn't have to portray strength, patience, or calmness. I could be exactly however I felt, as I didn't have to answer to anyone, didn't have to fight to hold myself together, didn't have to consider how my actions would impact my family's plans, didn't have to worry about anyone - not even myself. I was allowed time to be emotional if needed, whether it be anger, frustration, sadness, silly, etc. It didn't matter! I didn't have to "suck it up" or "try harder". I was on vacation from being the "Best Me Possible". I was free to just be! So how did it all work out? There were ups and downs. My plan was not perfect, but that's okay. I played my favorite music, mostly contemporary Christian, wide open - even singing outloud at times. Don't laugh, or do, it's ok because no one had to hear my singing voice. Ha! I played around on the computer a little. Spent time writing, hence this blog. I was brave enough to attempt increasing oral intake, specifically some Italian Ice, Frozen Mocha, and even a little Chicken Broth. Unfortunately, none settled on my stomach at all. Luckily, I was able to drain the Ice and Mocha rather effortlessly from my G tube to find relief. The chicken broth made me truly sick, lying on the kitchen floor with pain, nausea, and near blacking out. But it was worth it!! And since I was on my "vacation" I could moan, cry, complain all I wanted. Or just lay in silence! It was completely up to me. I didn't have to consider how others would feel or respond. I didn't have to worry about who would see me crouched on the floor or what they would think or say. Eventually it passed and I was able to return to the living room with lesson learned - NO MORE SOUP BROTH! My nights were sleepless, my body was tortuous, BUT I SURVIVED! I didn't hold back my anguish but I also didn't lose my mindset. I had no need to think about how I was feeling, or how it was impacting my life, as I was able to just experience the moment (no matter how rough) and then keep moving on to the next moment - which eventually was more pleasant. Without planning in advance, I was even able to get out of the house for a few minutes with my mom on Friday just to grab some ice and talk, then with my dad on Sat. I enjoyed our time talking and when my discomfort and exhaustion began settling in, they brought me back home. I didn't have to ask them or explain the situation to them. I wasn't upset, it was just another moment in life. MY Life! I was able to enjoy our time together, why bother with being upset about the quanity of time, I was blessed to have had some quality time together? If by some chance I had been upset or mad with my body, it would have been totally alright!! So the question is why can't I live in this carefree state more often? Why am I always so critical of myself? Don't get me wrong, I love my family more than life itself. I love my husband and love my kids, want to vacation with them, want to experience life with them day after day, and miss them greatly when they are away. It's just that I love them so much that I spend so much energy trying to "be better" or "appear better." I spend energy that I don't always have just to "be present" during the time they are around, energy spent "acting" like everything is okay or going to be okay. Energy spent trying to decide if attempting to eat or drink something, will create a shadow on their day or impede their plans. Sometimes I think I spend too much time being the "me" that my family needs and expects, the me that I envision, the "me" that doesn't disappoint, and the "me" that is in control that I forget how to just be ME! As I sit here with my family, patiently and eagerly waiting to say goodbye to 2015, I can't help but reminisce.
This year has been a difficult one for me that is for sure, both physically and emotionally. It would be so easy to be lost in all the day in and out pain with nausea, personal disappointments, losing who I was, uncomfortable medical tests, horrendous trial and error treatments, self-doubts, and sadness of friends that collected their angel wings. However, I choose to end the year in the same fashion I hope to live the new one - in positivity. I have so many blessings that occurred through my journey this past year. God has a reason for all of the obstacles I have come across; I just have to open my eyes and allow my heart to see them. So with gratitude I am going to share why 2015 was a GREAT YEAR, even with my illness. - Learning to let God carry me, when I felt like I could endure no more. - Stronger & Deeper relationship with my family, as I relied on their assistance & love. - Increased appreciation for the little things, that are easy to take for granted. - Friendships formed across the world, throughout the US, Germany, UK, Australia, and beyond. - Self-discovery through personal blogging & facing fears head on - Learning from great inspirational friends how to be advocate, draw strength, and help others by stepping out of my comfort zone and sharing my story. - Trusting myself, God, family, friends, and even my Drs while also having the bravery to speak up about what I needed. So out with the old year and in with the New - but keeping my mind set on the gratitude that's due! I created this video to help spread awareness for Gastroparesis, Colonic Inertia, and other Invisible Illnesses while also attempting to spread a message of hope to all who watch. Thank you for taking the time to watch the video. (Below the video, I attached the written blog.) Hi, my name is Trisha. I hate seeing and hearing myself on video, but after hearing of yet another death in our Gastroparesis Support Group I had to speak out. She was young vibrant and only 24 years old, searching for help and answers. I can’t sit back in silence and continue to watch person after person fade away. So today, I’m mustering up the courage to step out of my comfort zone and speak up for all of my friends & family, especially those that are living or know someone that is living with an invisible illness. Having an invisible illness has impacted my life drastically. Thankfully, God has sent blessings along to help make the journey survivable. Seeing me, you most likely do not realize that I am fighting invisible illnesses daily, mostly of which relate to a broken malfunctioning digestive system. The main 2 culprits are Gastroparesis and Colonic Inertia, which basically means my stomach and colon (large intestine) do not function. I am unable to eat normally, because food would just sit and rot in my stomach creating nausea, pain, bloating, and sometimes vomiting. Therefore, I have to depend on my GJ feeding tube for nutrition. I have a pump, that when connected pumps liquid formula directly to my small intestine, bypassing my stomach. This worked well for about a year and then I began having issues with tolerating the formula. As a result, I completed a Sitz Marker study which showed that my large intestine (colon) is not functioning. This very well could be the reason that I have been having problems with receiving my formula feeds. Currently, I’m successfully able to handle and function on about ½ can of formula a day at a rate of 30ml per hour. On “good” days I can supplement with a little bit of liquid or popsicles orally. That means that my TOTAL caloric intake is between 100 - 500 calories per day. As you can imagine, lack of energy and dehydration can be an additional burden on my already fatigued and often painful, nauseated body. Just consider the last time you had the flu or food poisoning and were unable to eat for a day or two. Now imagine living that way for years! That’s what many of my friends living with Gastroparesis and I have been enduring day after day. For those that knew me before I became sick (Feb 2013), I may “look” healthier today because I have lost quite a bit of weight. In the past 2 ½ years I have lost approx 170-180 pounds, and am still losing. But this is not a positive thing. I know people mean well when they try to compliment me by saying that they can notice how much weight I’ve lost and that I look good. But what they don’t “see”, what they don’t understand or realize, is the “invisible” torture my spirit and body has been through. I may “look” healthier, yet the weight loss is a side effect of me not being able to eat and some days even drink. My last true meal was Feb 17, 2013. I was actually healthier, more active, and living a pretty awesome life when I was obese. I was traveling, practicing ball outside with my kids, teaching, etc. Now, I stay fatigued, nauseaous, and in pain which leads to an almost non-existent non-active life at times. Living with a chronic illness, in my case an invisible illness, can cause you to feel isolated. There have been many days when I feel like I am just here, alive but not living. Days when I feel like I am just witnessing and watching life pass me by. Days when I’m upset or feel guilty because I have to cancel or miss out on special occasions, events, or activities. There have been times when I literally feared that I would not make it, feared that my life was ending, feared the heartbreak that my children & other family members might have to face. There have also been times that I have been terrified about my friends that were struggling or on the verge of death, or in some cases contemplating suicide because they could not find a doctor to understand them or be able to help them. What amazes me, is that there are so many living life like this as a result of Gastroparesis and/or Colonic Inertia. More than 5 million. Yet these illnesses are not known by the general public and even more surprisingly they are under recognized and misunderstood by so many medical providers. It isn’t uncommon to have doctors or nurses that are cold to us, turn their back, or even dismiss our pain. I hear about it everyday in our online support groups. Luckily, for the most part (yes I’ve had a few bad experiences) but for the most part the medical providers I’ve depended on have been empathetic and concerned. Unfortunately, though, they don’t always have the answers and sometimes don’t know about the conditions or how to treat them to help me feel better. One of the most discouraging things to hear from a medical provider is “I don’t know how to help you, we are running out of options, or as much as I want to help you - I don’t think there is anything else I can do.” I know how awful this feels, as I am hearing it more and more often. Thankfully, my GI team hasn’t given up on me, yet. Some of you may suggests that our GP Community reach out to the media for help. Guess what? We have, and we have been turned away or ignored because they think our stories are “too gross” or “uninteresting” to their audience. I have many friends that I’ve met online that are literally STARVING TO DEATH from Gastroparesis. The disease may be invisible, but we are NOT. We WILL continue fighting to be heard. We will band together and continue to help and support each other. Individually we may be sick, weak, and frail but together we stand strong and mighty. All this being said, I want to make it clear that having an illness, whether it’s invisible like mine or not, will have some silver linings. You just have to open your eyes and heart to recognize the blessings that surround you. God doesn’t give us more than we can handle, it’s true, even though at times we may feel pushed to the absolute max. God is ALWAYS with us. God is amazing! In our storms, HE provides us with umbrellas, rainbows, and support if we just TRUST him. It’s so easy to focus on the negative, but that is not want God wants from us. He wants us to hand our worries, fears, and pain over to him. He wants to hold us, carry us, and comfort us. He wants us to love and assist each other, without judgement. I’ve met some of the strongest, most beautiful, and kindhearted friends from all around the world in the online support and advocacy groups that I participate in. I have learned so much about myself during this difficult health journey. I would like to share a few things I’ve learned, that may help you on your journey as well.
I’m going to leave you now with 3 words that have become very important to me and should be remembered by all. BELIEVE Believe that God’s in control, you are NEVER alone, and that better days are ahead. COURAGE Have the courage to step out of your comfort zone to help yourself and others. STRENGTH Find the strength that you have inside of you. It’s there, GOD ensures you have all the strength you need if you trust HIM. Strength can also be gained from your support team, which for me includes my exceptional family and friends. Thank you for watching my video. Today marks the beginning of Gastroparesis Awareness Month. Our advocacy group has been busy the past few weeks requesting Proclamations from each of our states. (NC did approve request for Gastroparesis Awareness Week) In the spirit of raising awareness, I chose to create my own personal video this year. The purpose of the video is to show how Gastroparesis can unexpectedly and drastically impact someone's life as well as the rest of their family. This feat was not easy. In fact, it was a difficult task because I hate seeing myself in pictures or on videos. However, awareness is so critical. Who am I? Years ago, when I was a young girl in first and second grade, inquiring minds asked me what I dreamed to be when I grew up? Always, my answer was a teacher, an elementary teacher. Yes, I thought about having a second or even third job along with teaching - like being an astronaut, coach, and bus driver as I taught. Crazy isn't it? But I knew, with no doubt in my mind, that I wanted to be a teacher. Scratch that. I knew that I WAS going to be a teacher when I grew up. As many young children that dream of being a school teacher, I taught my stuffed animals, baby dolls, friends, and even brother in my make-shift classroom. Worksheets, workbooks, reading books were passed out daily. I graded papers, scolded children, led reading instruction, had students or myself take names on the chalkboard, etc. I KNEW what my passion was and was determined to make my dream a reality. Years passed by and my passion for teaching grew stronger and stronger. The more experience I gained from helping in children's church, babysitting and child care classes in high school, the more convinced I was that teaching was my purpose in life. I had everything figured out. My life was going to be grand! (Minus the high income of coarse.) My college years were no different. I absolutely LOVED teaching at the local daycare when I was not in class. My favorite classes, hands down, were my practicum classes. Being in front of a classroom felt amazing. My life of purpose and helping others had been found. God led me to teaching, I was following the path he laid before me, and life was great! In the fall of 2000, my dream was achieved! My career as an elementary teacher was beginning! I was going to make a difference in the lives of children and our community. I had a calling and I was going to give my absolute best to be the best possible teacher I could be. When inquiring minds asked what I did for a living, I proudly responded that I was a teacher and I absolutely loved it and my students. I was proud of my accomplishments as well as my students. My students truly became a part of my extended family. Looking back on the past 15 years I've given my heart to teaching. Countless hours, priceless memories, wonderful connections, exciting experiences, and unforgettable teaching moments flood my memory. I know that I'm not perfect, God knows there are many lessons learned, I only pray that I have made an impact and difference in the lives of at least some of my students! They definitely made a difference in mine. Today, Fall 2015, I have begun to close a part of that chapter of my life. My daughters and I went to "MY" classroom this morning to remove my personal items and materials. For the first time in my entire life, I am having to face the world of uncertainty? Yes, I am still employed with the school system while on medical leave, but I no longer have my position I loved so much. I know that when I'm better, I will have a position in the school system, but returning to my current school is not for certain. I can't honestly say which school I will be assigned to or what grade I will be responsible for. Just that I have a position being saved for me in our school district. Uncertainty, an awful feeling of uncertainty. My words can not describe this feeling accurately. I am hoping that one day, a sequel to my first 15 years in the classroom will be written. Until then......................... So what do I say now to inquiring minds? How do I answer what I am now? Just saying that I am a teacher on medical leave doesn't answer the question does it? I don't have a title anymore. I'm just here. But then again, through my health journey, God has blessed me with some outstanding friends online. These friends have helped me through some extremely difficult days. When I start to feel like giving up, or hopeless, they always jump right in to motivate and bring me up emotionally. I am so very blessed to be connected with them, as they know and understand my battle with Gastroparesis better than anyone else I know, as they are living with it as well. These new friends are great encouragers and the strongest, bravest, kindest people I've ever known. If it weren't for God, my family, and my friends met through Gastroparesis, I honestly don't know where I would be today. So the question is.... Who am I today? I am a teacher! I am a teacher on medical leave waiting until my body heals and God sends me back to the classroom. I am a teacher, educating others about Gastroparesis and Feeding Tubes, not only to help those diagnosed, but also to help spread public awareness in an effort to increase understanding, funding, research, and hopefully better treatment options or, better yet, a cure. I am a mother to 3 wonderful children, the most amazing blessings in my life. I am ME! |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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