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.)

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.

Cooking My Fears Away

     Having a condition that severely limits the amount and types of food that I can eat left me with a real love hate relationship. On the one hand I love to eat! The fact that I was always sick after eventually lead to my fear of food. Surprisingly, cooking became like a form of therapy. I missed having food in my life, but didn't want to deal with the way it made me feel so I started cooking all the things that I missed for my family. I was able to take in the process, the smells, the colors, the textures, and mostly I loved the looks on their faces when the food would come out a success. By cooking for someone else, I was able to focus on the food in a more relaxing environment rather than the stress and anxiety that I normally felt.
     Between the cooking and finding the right medication and therapist, I'm finally getting to the place where food is not the enemy and lately I've been using my new found cooking skills on myself. I'm definitely starting slow with foods like toast with almond butter, creamy grits, egg white muffin cups, and homemade smoothies to build up the foods that my stomach is able to tolerate and also to get into a good routine of eatting healthy foods rather than relying on empty calories like juice, fruit snacks, and Jello which have become my staples over the past months.
    Now for all you Android lovers out there who also enjoy cooking, I have a great app suggestion for you! To keep all the new recipes that I want to try for me and my family organized I have been using a free app called ChefTap which takes just about any recipe online and puts it into an offline cookbook on your phone that is easily accessible. I love that it allows you to tag all your recipes so that they are easy to find. I use tags such as GP friendly (for all of my recipes that are easier to digest for my GP tummy), dairy free, gluten free, single serving, and quick fix but because you can make your own tags the options are endless. The app allows you to take your own pictures for the recipes or to import pictures from the original website. You can also add your own recipes so it's a great place to store all of those old family recipes that never want to be found when you actually need them. The designers of ChefTap do have plans of converting the app to be iPhone friendly at some point in the future, so all you Apple people will have to be a little patient but I promise you it will be worth the wait!
     As I try different recipes, I will be sure to post them because I know how easy it is to get stuck in a rut with having a few "safe foods." With careful planning and a little bravery, trying new foods can be very enjoyable and I've found that every successful food gives me the courage to keep moving forward on my path back to normalcy=)