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!

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.

Ginger Galore and So Much More

     Nausea and I don't really get along. Kind of like a tenant who won't pay rent on time, or a dog who always chews your favorite shoes, or maybe rain at an outdoor wedding. Yeah, it's on that level. I wish there was one thing that always worked for me when that dreaded feeling creeps in, but so far it's pretty hit or miss. I do take Zofran (the dissolvable kind) on a daily basis although sometimes the nausea still sweeps in and ruins the day. Sometimes adding one of my many "remedies" can at least take the edge off, so I figured I'd share a few. These are all tips I've picked up over the last couple years from various websites and people, so I can't take credit but just hope to share and help my fellow GPer's or anyone else dealing with nausea.

1) Ginger. I'm sure this is common knowledge to most people, but starting out on this journey I had no idea how many forms of ginger are available so here are a few of my favorites.

-Ginger People: This is a company that makes a large variety of ginger items such as Ginger Chews and GinGins which are ginger CANDIES (so don't go over board!) that are easy to toss in your bag and always have a few on hand since they come individually wrapped. I prefer the Original Ginger Chews but you can buy many different flavors and quantities in bulk here. They also make ginger syrups and minced ginger that can be used to easily add the power of ginger to any of your daily meals.

-Candied Ginger/ Ginger Syrup: This is ginger that has been cooked and comes crystallized (coated in sugar, just really messy in my opinion) or uncrystallized. I usually buy mine from Trader Joe's because they have really great prices. I've also made my own candied ginger before that was really tasty and cooked the remaining liquid down into a syrup. You just cut up your ginger (thin slices or diced) and cook in a simple syrup (equal parts water and sugar, I used one cup of each) until tender. Remove the ginger and lay it out in a single layer to air dry and continue to cook remaining liquid until it's a syrup consistency. I stored mine in the refrigerator and it should be good for a few days at least.

- Ginger Mints: These are like Altoids mints, but ginger flavored and so tasty! I've only tried the Trader Joe's brand and love them. They're pretty strong so I only need a few at a time since too much ginger at once can give me heart burn.

-Ginger Tea: My favorite is Ginger Aid by Traditional Medicinals. I usually add a fennel tea bag also because it helps with bloating and I like the flavors together. Add a little honey and it's perfect!

2) Sea Bands: These are little bands that go on your wrist and have a plastic ball which presses on a pressure point known to help settle nausea. It's great for motion sickness and can help take the edge off during mild nausea flares.

3) Quease Ease: Some smells can help alleviate nausea and the Quease Ease is an aromatherapy inhaler that really does help take the edge off. You just remove the cap and take nice slow breaths in through your nose until the feeling passes. I especially love to use this in cars, but it's useful whenever. It also helps my sister with her migraines and the nausea she gets as a side effect.

4) Ricola Original Cough Drops: Not sure what exactly in these helps me, but sometimes it really helps settle my tummy.

5) Deep Breathing/ Visualization: When I can feel the nausea coming on and I start to panic, it makes it so much worse. Taking the time to close my eyes, breathe deep, and visualize something that makes me happy and calm can really help me get through the worst of it and helps it to pass faster.

That's all for now but if you have any additional suggestions please feel free to share them below. =)