A day in the life part two: the rest of it

So yesterday I talked about feeding tubes in general and my earlier tubie days, and now I’m going to talk about the rest of it.

After my surgery it took a few months for me to adjust to it all and get myself into a routine, but by the spring I was doing really well with my feeding tube! I was gaining weight, I had more energy and while my symptoms were still present they were being better controlled. And once I got the portable pump and could run my feeds during the day, free from an IV pole, I was actually able to live in the real world a little bit. Probably the most fun I had as a tubie on the go was being able to go my best friend’s convocation ceremony. Photo evidence of said shenanigans:

BFF Convocation

Out in the real world I also acquired many anecdotes about pump alarms going off in public and other peoples’ reactions to the whole feeding tube situation. Stories for another time.

Unfortunately my feeding tube success was short-lived. By the summer things were going downhill and by the fall I was in the hospital on TPN. Which brings me to lifeline number two. My central line:

Feeding Tube Awareness Week (8)

I wrote several posts during my time in the hospital that talk more about TPN, but here’s a quick refresh. TPN stands for Total Parenteral Nutrition. Enteral refers to the GI tract (tube feeding is called enteral nutrition), the prefix ‘para’ means beside or to the side of, so put it together and ‘parenteral’ nutrition is nutrition that doesn’t involve the GI tract and instead is delivered intravenously. Because TPN is really hard on veins, it can’t be administered in peripheral IVs, the ones you usually see in wrists and forearms. Instead it must be delivered through central line IVs. My central line, as you can see above, goes into my chest and then is tunneled up under my skin, over my collarbone to where it actually enters my circulatory system at my internal jugular vein. From there it is threaded down through my veins and the tip sits right at the junction of my superior vena cava and the right atrium of my heart. There’s another children’s book in that journey, I’m sure! Up close you can actually see and feel where the line is tunneled…cool? Creepy? Perhaps a bit of both.

Unlike feeding tubes which don’t require sterile care but just the same amount of cleanliness you would use for preparing food, because this line goes directly into my bloodstream sterility is of the utmost importance. Basically this translates to a ton of hand sanitizer and alcohol swabs up the wazoo. It makes showering an adventure in saran wrap and tape. Similar to my feeding tube, I can’t feel this line either. It does, however, feel cool (temperature wise, not like “wow, cool!”) when I flush saline through it.

What most people don’t realize is that TPN is usually specially formulated for the patient. With tube feeding, there are tons of different formulas available and different people will use different ones depending on their needs, but my TPN is made specifically for me. I get bloodwork done every month to monitor my electrolytes, blood chemistry, hydration status and liver function and then if any of those levels are off my TPN prescription can be adjusted accordingly. The TPN itself is made at a pharmacy in Calgary, gets shipped to the Burnaby location and then is delivered to me every two weeks. In order to prolong the life of the TPN so that biweekly delivery is possible, it must be kept in the fridge. The bag comes with two chambers, one for lipids, and the other for amino acids, dextrose and electrolytes. Right before I hook up for the night I remove the divider, mix it all together and use a needle syringe to draw up and add two vials of vitamins.

So here’s what 24 hours of keeping me alive looks like in medical supplies:

Medical Supplies (6)

Yeah, I have a sharps container in my bedroom…you don’t? And yeah, that’s a lot of packaging and waste, however thanks to my aunt the recycling guru we have found a way to really cut down on the garbage! If that’s just 24 hours, and I get two weeks of TPN supplies at a time, plus feeding tube supplies, you can imagine that storage becomes an issue. Basically this means that I have medical supplies stashed everywhere…I’m pretty sure there are even some cases of formula in the shoe cupboard under the stairs. Oh, and then there is the full size fridge for the TPN itself.

Medical Supply Storage

And even though I’m on TPN right now and not using my feeding tube for nutrition, I still use it every day. I take most of my meds through my tube, either in liquid form or crushing up the pills that I can. Sometimes just drinking enough to take pills can make me nauseous and bloated so bypassing that is a huge relief. Plus there is the fact that when your stomach has somewhat erratic function being able to put meds right into your intestine, instead of waiting hours and hours for them to kick in, is a big help.

So all of that is how it works. But what does actually living it look like?

Well, sometimes, with the right lighting, a well-timed shower and a spurt of energy, it can look like this:

New Year

But far more often it looks like this:

Feeling sick (8)

Lying on the floor because I’m too lightheaded to sit or stand, ice pack around my neck to try and calm the intense nausea, dark circles below my eyes (and actually above them too, because I’m just that skilled). And often it looks like this:

Feeling sick (10)

Done. Just so done with the day, with life, with reality. Ice pack on my head because it’s the only thing that soothes a two-month headache, no energy to keep my eyes fully open. And, since I’m already sharing the selfies that are going to turn me into a model one day, a lot of times it looks like this, too:

Feeling sick (9)

Also done. Hair that needs washing, puffy eyes from new medication that isn’t even working, desperately wishing for a break from my body.

Sometimes brushing my teeth is enough to make my heart race at 150 beats per minute. Sometimes taking a shower is enough to knock me on my back for a day or two. Sometimes I can’t sleep at night because I’m nauseous. Sometimes I’ll be okay one minute and lying on the floor with my feet up in the air the next in an effort to avoid potentially passing out. Sometimes I feel hungry, take a few bites of something, and then spend the rest of the day paying for it. Sometimes I lie on my bed for hours doing nothing, not sleeping but not really awake either. Sometimes I go crazy with boredom because I have no energy to do anything, but enough mental energy to know that doing nothing is boring. Sometimes I cry because I’m impossibly frustrated with my life. And sometimes I yell out, “That’s it! I can’t be patient anymore! This isn’t fair!” and then I slump down to the floor because I know there is nothing I can do but keep waiting, remain patient, and accept that life isn’t fair.

There’s a difference between being alive and living, having a quality of life. That’s where awareness comes in. And that’s why I’m writing this, in the hopes that more awareness will lead to better understanding, better treatments and ultimately a better quality of life. I’m writing this in the hopes that one day I won’t have to risk serious infection or liver failure in order to live. I’m writing this to make the invisible parts of my illness a little more visible.

It’s really hard sometimes, but sometimes it’s really wonderful, too. Everyone can relate to that, I think. At the end of the day, don’t get me wrong here, I’m incredibly grateful that science has figured out a way to keep me alive even though I can’t eat. At the end of the day I’m incredibly grateful that there are still reasons to smile and laugh.

And I’m also incredibly grateful for you, for taking the time to read this and making me, and everyone else facing the same struggles as me, feel a little less invisible.

So thank you! And once again, Happy Feeding Tube Awareness Week!

Feeding Tube Awarness Week

A day in the life part one: Feeding Tube 101

Happy Feeding Tube Awareness Week! The Feeding Tube Awareness Foundation started this awareness week in an effort to eliminate the stigma around feeding tubes and celebrate the lives they make possible. The theme of Feeding Tube Awareness Week this year is “the truth about tube feeding” and the focus for today is education, so in the spirit of it all I’m sharing a little bit more about the medical-y day to day of my life. Today is Feeding Tube 101, and since my life got slightly more complicated when I started TPN in the fall, tomorrow I’ll talk about the rest of it.

Disclaimer, my day to day life is not going to be the same as someone else with a feeding tube. There are hundreds of different reasons why people need tubes, and as such everyone’s day to day will be a little (or a lot) different.

Let’s start with a crash course in feeding tubes. There are many different brands, styles and sizes of tubes. And now a rhyme:

Some tubes are short. Some tubes are long. But all tubes just want to feel like they belong!

But really, there are so many different kinds! Let me decode them for you: G=gastric, or into the stomach; J=jejunal, or into the jejunum which is the second part of the small intestine; N=nasal, through the nose; Fr=French, which is the unit of measurement used to describe feeding tube diameters. G tubes are used when the stomach still functions properly. Depending on why someone has a G tube, they may do bolus feeds, which means a large volume over a short period (much like a regular meal) or continuous feeds, which involves a set rate of formula per hour over many hours. J tubes are used when the stomach function is impaired and the formula needs to be delivered directly into the intestine. J tube feeds must be delivered continuously at a lower rate because while the stomach has a ton of reservoir volume, the small intestine has a much smaller capacity. And to make things even more confusing there are also the hybrid GJ tubes, which have access to both the stomach (G) and the intestine (J) all through the same stoma, or opening, in the stomach. Those are the basics, but tubes can also be differentiated by make, placement and style.

Fun (irrelevant for most people reading this) fact: I have a 16Fr Mic J tube.

Once upon a time, in September and October of 2013, I actually had an NJ tube (nasal-jejunal) which means it went up my nose, down the back of my throat (yes, I could see it when I opened my mouth), down my esophagus, past my stomach, through my duodenum and into my jejunum. Quite the journey really…perhaps I shall write a children’s book about it! Nasal tubes are usually used when tube feeding is temporary or as a trial for tolerance to tube feeding before placing a more permanent one. Here’s what I looked like for 26 terrible days with my NJ tube:

NJ tube collage

I (un)affectionately referred to this tube as Babar. You can see the resemblance, right?

King_Babar

Despite my smile, I really wasn’t lying when I said those were 26 terrible days. I’ll spare you the traumatic details but I ended up having it pulled six days early in the ER because I could not tolerate it any longer. But regardless of how awful that time in my life was, I mostly just shake my head and laugh about it now.

I started with an NJ tube because the hope was that it would just be temporary. I gave it my best effort but my need for nutritional support persisted, which is why I had my J tube surgically placed in January of 2014.

Here’s a picture that shows both my lifelines, my feeding tube and my central line:

Feeding Tube Awareness Week (2)

My feeding tube (the one in my belly…duh) was surgically placed right into my small intestine. It hurt, a lot. The surgeons all said it shouldn’t cause any post-operative pain, but I would like them to plant foreign objects in their abdomens, leave them there, and then get back to me on that. It was a good eight to ten weeks before I was completely pain free, but by that point in time I was well underway in my never-ending battle with granulation tissue, a battle that continues to this day. If you haven’t read my posts from last spring where I’m pretty sure I talk about granulation tissue a lot, it’s basically tissue the body produces to try and heal wounds. In most cases this is a good thing but in the case of having a feeding tube where you need that stoma to stay open, granulation tissue is bad. I have tons of pictures (seriously, I have so many) of my poor stoma overrun with granulation tissue and covered in ugly stains from trying to burn it off with silver nitrate, but don’t worry I won’t share those with you! You can look at these pictures instead!

Tubie on the go collage

Other than feeling some pressure from the balloon if the tube gets snagged, I don’t feel it inside me. I do, however, experience discomfort when I flush larger volumes of water. And if the water is really cold I can feel that, too! There are days when it is very painful and days when I forget it’s even there, and so far I can’t figure out a rhyme or reason for that. Here’s a random tidbit for you…oftentimes stomachs or intestines will try to digest feeding tubes. By this I mean that normal peristalsis is taking place inside the digestive tract and the internal parts of the tubes get pulled along, sucking the tube in tight against the skin. I like to think of it as a game of tug-of-war between my intestines and the outside world. Basically it’s just annoying and vaguely uncomfortable, though sometimes it’s quite painful.

Before I had gastroparesis and before I knew much of anything about feeding tubes, the truth is that I thought they were pretty icky. In my earlier days of gastroparesis when feeding tubes were something only the really severe cases required, I still thought that. And honestly? They’re not exactly glamorous, but having a tube? And using that tube in public? There’s nothing gross or icky about that! Someone tube feeding in public should be seen no differently than someone eating ‘normally’ in public. Flushing water through a tube should be seen no differently than someone taking a drink from a water bottle.

Feeding tubes are not something to be feared. Some people can’t walk and they need a wheelchair. Some people can’t see and they need glasses. Some people can’t eat and they need feeding tubes. It’s as simple as that.

Feeding tubes aren’t the magic solution for everyone, as mine certainly wasn’t for me, but they do keep people alive and they help people thrive. They allow babies to grow into children, they allow children to grow into adults, and they allow adults to keep living. They aren’t contagious or scary. They’re real. They’re just part of real life. And there shouldn’t be shame or embarrassment associated with anything that gives you have a chance at a life.

So Happy Feeding Tube Awareness Week! It’s all about awareness, so please, if you have any feeding tube questions whatsoever, ask away and I’d be happy to answer! And may all the tubies out there, past, present and future, bare your bellies with pride 🙂

FTAW

Invisible Illness Awareness: My 30 Things

It’s Invisible Illness Awareness Week! Click here for a little information about how this week got started.

Basically, the purpose of this week is just what the name implies – to raise awareness about how many individuals are actually dealing with invisible illnesses, to allow those with invisible illnesses to open up about their daily struggles, and to just help us all understand each other a little better.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Gastroparesis (with dysmotility throughout my entire digestive tract)

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 2009

4. The biggest adjustment I’ve had to make is: giving up control. Asking for help and letting other people do things for me. Losing some independence. Saying no, I can’t do something. Not having concrete plans. Frequently living in a state of ‘wait and see.’ Balancing optimism and reality.

5. Most people assume: I don’t know what most people assume, but I do think a lot of times people assume I’m doing okay when I greet them with a smile and have a good sense of humour. I’m just a smiley person, though, even when I feel awful. And having a sense of humour about all of this yuck helps me get through the day.

6. The hardest part about mornings are: just not knowing how the day is going to go. This is true for everyone but it’s magnified for me. When I wake up I have no idea if I’m going to be able to do the things I want. I have no idea if I’m going to be able to tolerate any food. I have no idea if I’m even going to be up to leaving my room.

7. My favorite medical TV show is: Grey’s Anatomy, though I kind of lost interest in it last season. I really like reading medical books, though – ones written by doctors and nurses. As the patient, I like having insight to the other side of the doctor-patient relationship.

8. A gadget I couldn’t live without is: well, quite literally, this would be my feeding pump because it feeds me and keeps me alive. But apart from that, the internet (so I guess my computer?). The internet has connected me with so many other people around the world in similar health situations. It is also how I learned to crochet, how I keep in touch with people when I’m too unwell to go out and see them in the real world, and how I gather information so I can be an advocate for myself.

9. The hardest part about nights are: being too nauseous to sleep and knowing that the less I sleep the more symptomatic I am likely to be the next day.

10. Each day I take __ pills & vitamins: minimum 7 pills and 2 vitamins, and then anti-nausea medication as needed.

11. Regarding alternative treatments I: think they definitely have their place as a complement to western medicine. I’ve explored alternative treatments a little in the past, and plan to do so again in the future. At this point in time, however, my main focus is mainstream medical treatment until my condition stabilizes a little more and I have the extra energy and resources to pursue other avenues.

12. If I had to choose between an invisible illness or visible I would choose: I’m kind of in a funny place here because this feeding tube makes my illness much more visible. That said, people have tubes for tons of reasons and some of them are perfectly healthy. And tube or no tube, you cannot always tell by looking at me how I am feeling. Visible and invisible illnesses both have their pros and cons, and I only know what I know. While it is sometimes hard feeling like I need to justify that I’m actually sick with an invisible illness, it’s also nice to be able to hide it when I want to.

13. Regarding working and career: I feel like everything is on hold and I’m way behind. I know, I know, I’m still young and I have tons of time to go to school and figure my life out, but that doesn’t change the fact that it’s incredibly hard to watch everyone around me move on with their lives while I am occupied as a full time patient (the lawyer who wrote up my contract must be a genius because I have yet to find a loophole to get me out of this job!).

14. People would be surprised to know: I want to eat! And I get random cravings for foods that I used to love. I think people might also be surprised to realize just how much of our social culture is food-centric. It’s something you might not realize until you actually stop to think about it, or until you can’t eat anymore.

15. The hardest thing to accept about my new reality has been: sacrificing some of my independence and some of my goals in order to manage this illness that I didn’t ask for and don’t want. It’s also really hard to see the stress that my illness puts on my family and close friends.

16. Something I never thought I could do with my illness that I did was: be okay with a feeding tube. In my early days of gastroparesis when I would read stories about people with feeding tubes I thought it was the worst thing in the world! I thought it was so gross and I couldn’t ever imagine being tube-dependent without being completely miserable. I’m not completely miserable, though, and while it’s not glamorous, I’m okay with it and I’m living with it.

17. The commercials about my illness: Don’t exist.

18. Something I really miss doing since I was diagnosed is: going through my day carefree without planning everything around medications and symptoms.

19. It was really hard to have to give up: Teaching dance and going to school.

20. A new hobby I have taken up since my diagnosis is: Crochet!

21. If I could have one day of feeling normal again I would: have a really fun day with the people who are closest to me, the ones who have to watch me struggle. They deserve a normal day, too.

22. My illness has taught me: Patience. Empathy. Letting go. Advocating for my self. Hope. Joy. That it’s okay to not do what I think I’m ‘supposed’ to do. That the world is full of so many wonderful people.

23. Want to know a secret? One thing people say that gets under my skin is: This is such a sensitive question because when people say things that annoy me I know they have good intentions and I know that it’s hard to know what to say to someone in my situation. But here goes. It gets under my skin when people say “well you look good,” especially when I know I don’t. I know people mean well and just want to make me feel better, but it usually just makes me feel misunderstood. Here’s another thing that is hard to hear…my goal all through university was to go into occupational therapy, which is a two year full time masters program. At this point in time, this is not an option for me. My body could not handle such a program. I have accepted this reality and I realize that OT might not be in the cards for me. It really frustrates me, then, when I tell people this and they start telling me not to give up, that I’m still young, that I’ve got lots of time, that I can make it work. I know they mean well, but it ends up making me feel guilty for trying to come to terms with my reality.

24. But I love it when people: Let me know they are thinking of me. Make me feel accomplished for the things that I can still do. Share fun stories with me. Give me a chance to escape being a patient for a little while.

25. My favorite motto, scripture, quote that gets me through tough times is: “On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that’s pretty good.” – Vinny Genovesi

26. When someone is diagnosed I’d like to tell them: You can be okay. It’s hard and you need a lot of support, perseverance, and hope, but you can be okay. And find what works for you. There is no diet, medication regime, schedule or plan that works for everyone. Don’t be afraid to try new things because you never know what might turn things around for you.

27. Something that has surprised me about living with an illness is: How everyone is going through something. I always knew this theoretically, but once you open up about your own struggles, people open up about what they are going through. And soon enough you will realize that everyone has their struggles and everyone could use a little extra empathy and compassion.

28. The nicest thing someone did for me when I wasn’t feeling well was: So many things! I am so blessed with so many wonderful people in my world who are always letting me know that they are thinking of me.

29. I’m involved with Invisible Illness Week because: For too many years I felt like my illness was a personal failing, a character flaw, a weakness. I didn’t acknowledge that I had a chronic illness and I pushed myself harder than I should have trying to meet the expectations I had set too high for myself. Being open and public about my health has really helped me to accept and embrace my reality and that has made a huge difference to my overall well-being.

30. The fact that you read this list makes me feel: heard. Thank you.