Tube Changes and a Mic-Key

A couple of weeks ago I had the dreaded experience of waking up to a leaking tube, and not just an open port cap. The J portion of my tube had a hole that no amount of tape was able to seal, so I decided it’d be best to call my surgeon. Turns out he was on vacation, but Interventional Radiology (I.R.) was great and fit me in with a different surgeon that afternoon. Since this was not a planned procedure and I had eaten that morning, it was not safe for me to be fully sedated which made me very nervous. Throw in a sudden allergic reaction to Zofran (my daily anti-nausea medication which I can no longer use safely), and I was just a ball of tears and stress. Thankfully, my mother was able to calm me down and by the time they took me back I was feeling a bit more confident.

Although I couldn't be fully sedated, I was told I would receive light sedation using Fentanyl and assumed I wouldn’t remember a thing. Boy was I wrong! The nurse gave me the Fentanyl as promised and I was suddenly dizzy, nauseated, and feeling generally unwell, but patiently waited to drift off to sleep. Instead, with many prayers for strength and calmness, I endured shots of Lidocaine into my tube site to combat the pain, and the forceful pulling and pushing as the surgeon removed my faulty tube and replaced it with a new one. Needless to say, I was a bit overwhelmed but overall it was not nearly as bad as I had imagined. The Lidocaine made the procedure almost painless, prayer kept me calm when I wanted nothing more than to hop off that table and go running for the hills, and the trendy music playing lightly over the speakers was just the distraction I needed.

When the procedure was over I was a little upset to have gone through all of that for the same PEG/PEJ tube when what I really wanted was a Mic-Key (low profile, more discreet tube), but my size was on back order so that wasn’t an option. I headed home hoping to get some rest but was very distressed when I realized the G port on my tube was leaking because of a faulty cap….REALLY?!? Yeah, I was not a happy camper. The next business day I called I.R. and we decided to try fitting me with a new cap to hold off until the Mic-Key tube arrived. They ended up receiving it that day and the next morning I was back at the hospital. Since the Fentanyl hadn’t helped at all and I was hoping to get out of the hospital as soon as possible, I decided to pass on all sedation and choose only to use Lidocaine shots for the pain during my second tube change. The procedure went smoothly and I am the proud new owner of a G/J Mic-key Button that I love!

Although that was a rather stressful and busy few days, my amazing family was by my side every step of the way and I thank God every day for blessing me with such a great support system. They’ve seen my good, my bad, and my absolutely crazy side and love me anyway. No matter how often this battle knocks me down, I know I can always get back up to fight another day with a hand like theirs waiting to pick me up.

Local reaction to IV Zofran.
Happened very suddenly so I was happy
to be in the hospital at the time and I received
prompt care.

Old PEG/PEJ Tube with one
of my favorite Tube Pads=)

Brand new G/J Mic-Key Tube
Just in time for Spring and Summer!

I'm Alive!

I know it’s been a long time since my last blog post and I apologize for that, I’ve just had so much going on physically and mentally that it got pushed to the back burner for a little bit. Sometimes taking a little “Me Time” is just what the doctor ordered. So for a quick update I just wanted to let everyone know that I’ve been recovering very well from my procedure and so far this tube has been waaaay more comfortable then my last feeding tube.

Honestly, the recover was not the easiest and dealing mentally with having this tube in me was tough. I remember looking down at my tube quite a few times and needing all my strength to not rip it out because I couldn’t believe I had let them do this to me. I wished that I could go back in time and cancel the surgery. I wanted the pain to stop and to be normal again. It was tough, but my family was there every step of the way and each day was a little better than the day before. I’m happy about it now, and that just goes to remind me that no matter how hard things may be it can turn around and no matter what life goes on. Sometimes all you can do is take life one day at a time and that’s ok.

 

Can't Keep Me Down

     This Monday is going to be a big day for me as I'm scheduled to have a new long-term feeding tube placed. It's called a GJ (Gastrostomy-Jejunostomy) Tube. For those who don't know, I currently have a NJ (Nasal Jejunal) feeding tube that goes through my nose, down my throat, past my stomach and into a portion of my intestines to deliver a special formula that gives me the nutrition I need to live but can't take in orally. This new tube will have the same function, but will be placed directly through my abdomen wall with a portion of the tube in my stomach and the rest continuing into my intestines.

 

 



      I'm not going to lie, this is all a bit scary and overwhelming. I went for a consult with my surgeon earlier this week and when he pulled the tube out to show me what it would look like I couldn't help crying because at that moment it became so REAL. "I'm going to have that TUBE in MY belly." It's hard to acknowledge some days that this is really my life. Growing up I had so many plans for my life, and this was never one of them. I've realized though that sometimes it's ok to allow myself to just be sad, it's staying there that causes a problem so here's my list of positives about my situation to help put all those fears and sadness on the shelf for now:

 

1) No more sore throat and nose bleeds.

 

2) While I'm in the hospital I can order all the free Schweppes ginger ale and applesauce as my tummy can handle! I mean come on, who doesn't like free stuff.

 

3) I'll get to spend my recovery watching movies and being waited on hand and foot. Just call me Princess Simon'e =)

 

4) While surfing the internet yesterday I saw a list of positive things about feeding tubes and one of them was that after this surgery I will have two "belly buttons" because some of the tubes are called buttons. Not many people can say that hahaha.

 

5) I have a surgeon that I love and who has taken every step he can to put me at ease and keep me comfortable during my hospital stay. Finding doctors who have my best interest at heart and go out of their way to give the best treatment hasn't been quick or easy, but each disappointing doctor has shown me what I don't want and lead me to a better replacement.

 

6) This tube will help keep me alive. I think this alone makes getting my new tube totally worth it. My life may not be all that I planned yet, but it's still worth living for and every day I get to spend with my family and friends is a blessing.

 

 

(Both picture found through Google. First picture is from: http://www.uofmchildrenshospital.org/fv/groups/public/documents/images/115616.jpg. Second picture is from: http://www.na.kccustomerportal.com/documents/upload/application/2812/learning%20center/hierarchy%20description/dh_transgastric_c18246_06%2025%202010%207%2014%2026.jpg.)

Sharing The Spotlight

I’ve never been the type to enjoy the spotlight. Growing up, I went to a school that hosted two school wide theatrical performances each year and I loved being involved in the behind the scene productions. Designing and making props, making sure everyone had their costumes and made it out on time, coordinating the sound and timing of the performances, I just loved it all. I usually had a part or two on the stage also, but the bright lights and nervous jitters just weren’t my cup of tea. Yet, here I am in the spotlight again, although this time with the bright lights of one exam table after another and the jitters of waiting for appointments, test results and future procedures.

As frustrating and scary as being chronically ill is, working hard to look for the positives in a trying experience can teach you a lot. Personally I’m learning to ask for help when I need it, and cultivating the humility to accept that help even on the days I feel I don’t need it (because if I'm perfectly honest with myself I can ALWAYS benefit from a little extra help). My faith and endurance have surpassed any level I’ve ever imagined and it gives me the strength to push through the tough times. I’m also working hard to find productive ways to pass time. Sitting around feeling sick sucks, so keeping my mind active helps me not to focus so much on how I’m feeling physically or my fears of the future.

Being chronically ill also puts you in the “spotlight” of other people’s minds, especially your family’s. “How are you feeling?” “Is there anything I can do for you?” “What’s your pain level today?” “When’s your next doctor appointment?” “Is it time to refill your prescriptions?” I am so grateful to have a family that willing and lovingly tends to me making sure I’m as comfortable as possible, but I find myself often wishing there was more I could do for them. I’m not working so I can’t help with the bills, especially my never ending medical bills. I’m not allowed to drive again yet so I can’t run errands, take myself to the doctor, or help pick my little brother up school. I quickly realized focusing on all the things I couldn’t do was only good for making myself feel pretty useless and decided to get off the pity potty and find things I could do.

For example, now that I’m gaining more energy I can help with the chores. Washing towels, making beds, and emptying the dishwasher may seem like little things, but I saw a quote recently on Instagram that said “Little things add up.” When my family is coming home from a long day of work or school, it’s nice that they can relax and have one less thing to worry about. I’ve also been working hard to put the spotlight on them. “How was your day?” “How are you feeling today?” “Is there anything I can help you with?” Family and friends of people who are ill spend so much effort taking care of that person that it’s often a great way to return the favor by simply showing interest in them and working hard to support their goals. That could mean being their sounding board for new ideas, helping manage their to-do list to keep them organized, or making breakfast or lunch so they can get out of the house on time. Again, the little task truly do add up to save time for them and to show how much you care. We Spoonies may not always be able to do much, but using our energy to support those who support us is never a waste of spoons. (See “Hi, My Name’s Simon'e and I’m A Spoonie” to learn about the Spoon Theory.)

A Dose of Love and Support...Just What the Doctor Ordered

     I forgot. No, that's not right. I was way past forgetting. I didn't know. I didn't know that I could ever smile a genuine smile again. I didn't know the joy I could feel from busting a move to my favorite song. I didn't know what it meant to complete a coherent thought and have a conversation. I didn't know there was life outside of my own home. My heart was beating, my lungs were taking in oxygen, but my mind was dead to the world. By the time I made it to the emergency room for the umpteenth time, my poor body was so dehydrated and malnourished I could barely drag myself inside. It blows my mind that if it hadn't been for my amazing family and doctor stepping up and saying that I needed more than anti-nausea medications and fluids that I might have been sent home, again, to continue suffering. I'm so grateful for the people in my life who were willing to take over my care when I didn't have the strength to do it because they helped saved me.
     My first night in the hospital was so scary because I finally realized how far gone my body was. I weighed 76 pounds and couldn't maintain safe vitals without medical intervention. My blood pressure stayed so low that I required bolus (or large amounts) of saline fluids just to keep it at acceptable levels. There were nurses coming in and out of my room all night but with my sister sleeping by my side and my mom sleeping in the chair next to me, I was able to make it through. The next challenge tackled was my blood sugar. Since I was unable to take in much food by mouth I was always dizzy and weak so spent a lot of time on "fall watch". I felt like the most annoying patient having to page the nurse to walk with me the ten steps to the restroom every time I needed to go, which is about every 45-60 minutes when you're on a bolus I.V. drip!
     Early one morning after a relaxing hot shower, fresh jammies, and a comfy new I.V site I was ready to settle in to a good movie when the nurse came in to check my blood sugar and it was in the 50's. For those who don't know, that's not so great. The normal range is about 80-120, so they gave me four glucose tablets (which are delicious by the way) and took it again. My blood sugar had dipped even lower to 44. At the time I didn't realize this was such a big deal since managing blood sugars was new to me, but the number was blinking in red and that was the first thing that alerted me. When my nurse walked in with other nurses for help and guidance, I was a bit freaked. They said they were just going to give me a bolus dose of Dextrose fluid (really concentrated sugar water) in my IV. Initially I was happy that they could solve the problem without involving my stomach since too much sugar at once is no bueno for my tummy, but because the Dextrose is super thick like honey it just blew my vein open which was extremely painful. The IV technician blew three more veins before getting another access site and we tried the Dextrose again. Thankfully it went a lot smoother and my blood sugar was stabilized for the moment.
     My biggest challenge of this hospital stay was my feeding tube. This was a decision that was hard to make, but truly necessary to save my life. About five days into my stay I had a nasojejunal feeding tube placed which is a thin flexible tube that travels through my nose, down my throat, past my stomach and ends in my jejunum (a portion of the small intestines). This type of tube bypasses my stomach to give my body the nutrients that it needs without causing all of the symptoms I get from eating food. My hope is to gain some weight and get my body healthy while I work closely with my team of doctors to find a plan of treatment that will get my stomach functioning to a degree where I can maintain my health and weight by eating orally.
    It's taken some time to begin noticing the effects of having a nourished body, but I've slowly been feeling myself return. Although I still struggle with my Gastroparesis symptoms daily, I smile. I sing. I dance. I crave life! I look forward to the day I can have the energy to hang out again and even...I can't believe I'm saying this...get a job. I've learned so many lessons along this journey and felt my faith grow exponentially.  I want to send out a huge thanks to everyone who visited, called, sent cards and gifts, supported and cared for my family, shared scriptures and encouraging words, and just sat with me when that was all I could give back. I loved when the nurses would walk into my room and comment on how cheery my room was with all of the cards on the wall, balloons with their get well messages, and my bed full of stuffed animals keeping me company. Having so much love and support truly kept me going, and I know it will continue to help me move forward one day at a time to reach my goals.


Post NJ placement





Feeling much better after a few weeks of NJ feedings!

Choosing Life

     Your body needs energy to survive and food provides your body with energy, so logically everyone needs to eat food to survive. Enter the eating disordered mind: FOOD IS THE ENEMY AND I DON'T NEED OR WANT IT! Let me try to explain.

     Growing up I've always had a fear of vomit. I can remember one specific episode when I was around eight that I was vomiting and just thought I was going to die. Obviously I didn't, but that didn't stop the fear from forming. Any time I was around someone who even mentioned feeling nauseated I'd start hyperventilating and shaking all over, it was a physical reaction I had no control over because the fear was that strong. So I'm sure you can imagine that being diagnosed with an illness that among many things can cause chronic nausea and vomiting was my worse nightmare come true. The day my GI doctor very bluntly told me I had Gastroparesis I cried and cried while he sat there rambling on and finally stopped to ask "Does this news upset you?" Yeah, I didn't continue seeing him for very long.

     He sent me home with a crushed spirit and a sample meal plan that didn't work at all. Before I was officially diagnosed, I dealt with the symptoms as best I could when my GP would flare really bad and tried my hardest to eat through the "normal" level of daily nausea and bloating. I lost a decent amount of weight but nothing to be overly concerned about. Once I learned about the GP friendly diet though (low fat and fiber, avoid indigestible foods like popcorn), it was like a switch was flipped in my head. Instead of viewing the diet as a way to manage my symptoms, I was looking for it to RESOLVE my symptoms and when it didn't I moved on to NO fat and fiber. I cut out one food after another until I was down to a couple "safe foods." That may be ok during a flare, but to stick to that long term is not healthy. When even those foods caused symptoms I cut my portions down to just a few bites every few hours, just enough food to stop my hunger pains or prevent myself from passing out. I wanted so desperately to feel better that I was willing to completely cut out what in my eyes caused all my suffering, food.

     At the time, I thought this was just the normal route of any person with GP because of all the horror stories I had read online. In my search for relief I had read story after story of people with GP who couldn't eat or work or function and I assumed that was what would become of me as well. It's true that for many people with GP it truly can be disabling, but doctor after doctor told me my case was mild and could be managed if I tried x, y, and z. I'd try their suggestions and still experience flares so assumed they must be wrong since I was still suffering because I wanted to be cured not managed. Instead of enjoying the good days and learning to manage the bad, I let the bad overshadow the good and they slowly began to take over. All I could do was sit at home and despise food because of how it made me feel. I would literally put food in my mouth and couldn't swallow it because I could only think of how it would make me feel in the short term rather than working to find ways to MINIMIZE my symptoms while still nourishing my body.

     It took a long time for me to be able to step back and see that although I had a legitimate health problem, it had somehow spiraled into something that I had no control over and needed help to recover from. It seems pretty common for people with GP to develop problems and fears toward food and I remember reading early in my diagnoses about seeking treatment EARLY for such problems and wish I had really taken that to heart and done so. I know many people may look at me and wonder how I can be afraid of food, but it's just like any other type of negative reinforcement I guess. Take those invisible fences for example. You put the zapper on a dogs collar and place those orange flags where his border is. Over time, he'll realize "Hey, I get to close to the flying thing and get a zap. I should probably avoid it." Well, I eat food and very often get negative symptoms. The only difference is that as much as I would love to never have to eat again, food is something I just can't avoid. I remember my therapist telling me "Even if you do throw up once every twenty five times that you eat, so what." In my mind it had never been that simple, but I was willing to try and make it that simple.

     My journey has been long and the end is still far off, but I'm ready to get off the side line and back into the race. Some days I look back and wonder whether my GP got worse or if my lack of nutrition and eating caused an increase in my symptoms, but I've been told that for some people, especially those like myself with Idiopathic Gastroparesis (the cause is unknown), over time the body can heal and GP will resolve on it's own so I'm hopeful that by giving my body the love and nourishment that it needs there is a chance I will one day be rid of this trial. Even if that is not the case, I hope to over come my fear of food and learn to manage my GP and get back to living. Just because life may be hard doesn't mean you can't enjoy it. I have confidence that through my faith and the support of my family and friends I can succeed and look forward to sharing my journey with you.

Rocky Days

     Lately GP has been giving me a hard time with my latest flare landed me in the Emergency Room. I can usually push through my daily symptoms to get in enough nutrition to function, but after a few days of not tolerating food or liquids I was so dehydrated I had no choice but to head to the E.R. for fluids and a little Dextrose (a.k.a. sugar water) which had me feeling ten times better. That little sugar rush had me bouncing off the walls! While I was in the hospital I had to make a big decision about my medication, a decision I have been putting off for as long as possible. I had to decide whether I was ready to give Reglan a try.
     Many GP patients have been in the same position and understand what a big decision this can be. There is no cure and very few treatment options for Gastroparesis (many of which are ineffective), so it's easy to go through the safest options fast with little relief. Reglan is not a very favorable treatment option because although it can be effective, it can cause some pretty serious and in some cases permanent side effects. I've read horror stories of people whose lives have been completely changed because of the effects of Reglan. Yet, I've had doctor after doctor suggesting I give it a try. After a little research, I found that yes it can cause some pretty nasty side effects, but short term they are not as likely to occur.
     This still puts me in a difficult position because if the medication does work I could be feeling good for a couple weeks, then feel terrible for the next few weeks while I give my body a break from the Reglan. I guess any break from my symptoms is better that no relief though. Until this last flare I had decided that Reglan was not for me, but when you weigh not being able to eat to using Reglan for just a week to hopefully give my stomach a little jump start, the pros definitely outweigh the cons so I decided to give it a try. A little fluids, I.V. Zofran, Pepcid, and a dose of Reglan later, I was able to drink and eat enough to be discharged. Did I leave at one hundred percent? No. More like fifty percent but it was a huge improvement from the way I (barely) walked in.
     I'm so grateful to have the support of my family and doctors that have done all they can to help me. I'm ready to also acknowledge that to some degree my health is in my own hands. By slowly adding exercise, healthy and nutritious foods, and removing as much stress from my life as I can, I hope to get my health as stable as possible. I saw a quote on Instagram (I can't remember where) that said "The road may be long, but I'll enjoy the walk" that I loved. Whether I like it or not, this is my life at the moment so I'm going to make the best of it=)

Hi, My Name's Simon'e and I'm A Spoonie.

     Having Gastroparesis is...interesting. It's considered an invisible illness because the symptoms can't be seen just looking at me and this fact has it's pros and cons. For example, on a good day I can pretend I'm normal. I can go out with my friends and not have people staring or judging me. People who don't know me or my story don't treat me weird or ask a bajillion questions. Sometimes it's nice to forget about my pain and daily struggles even if it's just for a little while. On a bad day though, my main symptoms may be invisible to most, but the trickle down effects every aspect of my life. There are times that I'm hardly able to eat for days causing my body to be weak and my mind to move slow. It's like trying to swim in a pool full of peanut butter and absolutely exhausting.

     So I'm sure you can imagine that on my good days I used to try to take full advantage and do all that I could, but that's where this Spoonie thing comes into play. As much as I want to do all of the things that I used to be able to do, my "spoons" are limited. The Spoon Theory was accidentally created by a woman who was chronically ill and asked by a close friend "what's it like?" She grabbed a bunch of spoons and handed them to her friend. She went on to explain that most people start the day with an unlimited amount of spoons while people who are chronically ill start their days with a limited amount, and it varies from day to day. EVERYTHING that we do in a day must be carefully thought out in advance because even the simplest task can use a spoon or two and when you're starting the day with only ten for example, they can go pretty fast.

     Before I read about The Spoon Theory, I had trouble accepting this as my new reality. I'd work myself until I was exhausted trying to live my life like I used to and then spend the next two to three days worn out. When my family would tell me to take it slow and offer assistance, I'd proudly refuse. I'd never needed the help before and in my mind I was the same person I had always been, why did they think I suddenly needed help all the time? After learning about it though, I was finally able to take a step back and realize that accepting my new Spoonie status didn't have to me that I liked it, and I may do less but I'm not useless. I've learned to do the best that I can at a slower pace than I used to and that my family is more than happy and willing to help me when I need it. On the way home from my last vacation, my family and I where stuck in an airport for three days and they pushed me around that airport on wheel chairs and luggage carts the whole time and as tired as they were, they never complained or made me feel bad about it. If you ask me that's some real love right there=)

     Trying to live at my new "normal" is still a daily struggle that some days I win and some days I lose, but each day I learn. I'm learning to be patient with myself and others, to speak up, and to appreciate the small accomplishments in each day. Sometimes it's the little things, like checking off a box on your to-do list or a small act of kindness, that can really keep you going through the tough times.

Give In, But Never Give Up

     Some days I give in. I give into the fear, I give into the exhaustion, I give into the anger, and for the longest I saw this as a failure on my part. I believed that I should be strong enough to rise above negative feelings and felt that I just needed to toughen up. I rationalized that there are so many people who have a life worse than mine and still manage to function and be productive. I envied those that could put a smile on even when everything that could possibly go wrong had.

     I worked so hard to force my feelings into a place where I wouldn't have to deal with them, but that didn't make them disappear. Allowing my past bad experiences and feelings to build up was like running a marathon with one hundred pound weights on my ankles and expecting to win. Once I finally decided to deal with my emotions rather than ignore them, I was so much happier! True, dealing with emotions are not always pleasant or easy, but it's worth the effort in the long run. Everyone faces trials in their life, but the way you deal with it makes a world of difference in the effect that it will make in your life.

     A few weeks ago, I was sitting in one of my school's counselor offices filling out the paper work for my Associates Degree, and looked up to see a sign on the shelf that said "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." I sat there reflecting on all that I had been through in the past year to be sitting where I was in the moment, happy and feeling the best health wise that I'd felt in quiet some time.

     At the age of twenty, I had to quit working. I no longer had the energy to continue at my fast paced waitressing job, and although there had been plenty of times in the past that I'd wished I didn't have to work, I never thought it'd be because I couldn't. I had to drop multiple classes when I was sick so often that I missed more classes than I attended. Thankfully, some of my teachers were very understanding and worked with me so that I didn't have to drop all of them and was able to graduate on schedule. At one point, I was mostly house bound because I barely had the energy to walk from the den to the kitchen, not to mention just the idea of riding in a car sent my stomach spinning. After months of medical testing locally, I faced a trip to the Mayo Clinic for a very rough week of testing that not only tested my physical body, but my mental strength as well.

     Yet here I am, fighting. Every day with GP is a battle, and yes some days I give in, but I never give up. I am beyond grateful to have so many people in my life who love and support me through the good days and the bad. On those days when I do give in and feel that I just can't fight, I know they've got my back and will fight for me until I'm strong enough to get back up. They help me "dance in the rain" when I'm feeling terrible by doing everything they can to make me comfortable and bring a smile to my face. They help me "dance in the rain" by sitting and watching movies with me when I have the energy to do nothing else. Most of all, they help me "dance in the rain" by loving me unconditionally and letting me know that even when the best that I can give is 20%, it will always be enough for them. So for all you GP fighters and people facing the various trials of life, find those people, or reasons, to help you "dance in the rain" and never give up.