When you can’t eat part one: The facts

Posted in Uncategorized by Catherine

When I was in the hospital last September a lot of people there were very curious about the whole not eating thing and I got a lot of questions about it…my favourite/the most ridiculous being, “but have you ever tried eating anything?” I decided to blog about this topic, and I even asked if any of you had any questions about it over on my Facebook page, and then no post ever appeared.

Here’s the thing. It’s not that I forgot, it’s that when I started writing there was just SO much to say and I had a really hard time concisely explaining it all. But what better time than Feeding Tube Awareness Week to finally put into words what it’s like not being able to eat. Because there’s so much to say, I’m doing this in two parts.

Up first? The facts.

Disclaimer: this is just my point of view. I can’t speak for anyone else because every person experiences and reacts to things in their own way.

Alright. So, I have gastroparesis secondary to Ehlers-Danlos Syndrome. Without getting into too much detail, partly because it’s not all that exciting and partly because science doesn’t even know all the ins and outs yet, faulty connective tissue impairs my digestive tract’s ability to function properly and so my stomach and intestines don’t move food along efficiently.

Question: Are you allowed to eat?

Yes. There is nothing or no one physically stopping me from eating. I can swallow safely (though pills do have a tendency to get stuck in my throat and start to disintegrate there…ouch) and my doctors encourage me to eat when I can to maintain as much gut function as possible. However, the consequences of eating can be brutal.

Question: What happens when you eat?

Bad things. Next question…

Hah, no but in all seriousness bad things happen when I eat. Nausea is my biggest battle in life. I am constantly nauseated to some degree, but add eating and drinking to the mix, even small amounts, and my nausea gets kicked up a notch or two…or fifty. I have four different nausea medications on hand, but they don’t work miracles, they just take the edge off.

I get full very quickly. Just taking a couple of pills can make me full. The technical name for this is early satiety. And I don’t mean wow-that-was-a-satisfying-dinner-but-now-I-don’t-want-to-eat-anymore full, I mean I-can’t-believe-I-ate-all-that-what-was-I-thinking-wow-I-feel-so-so-sick-now full. In addition to the nausea, this early satiety comes with a lot of other symptoms such as bloating, abdominal pain, gas and reflux. I have a lot of chest and throat pain from reflux, and it’s not very lady-in-waiting-like of me but I love burping. Ew, right? Yeah well, let me tell you, when you’re so full and uncomfortable to the point of gagging and crying, relieving some of that pressure is magical. Keep in mind that because my stomach empties slowly these symptoms can stick around for hours.

Question: So what do you eat then?

Not much. Saltines. I can usually eat two or three saltines a day. I can drink maybe 100 to 200 mL of fluid day? Maybe. And not all in one sitting because that would be bad news bears.

Lifesaver rolls in bulk. Thanks Amazon.

It takes me an entire day to drink that much, and a lot of that is just from taking meds. I also eat a small amount of fruit sorbet, a spoonful or two several times a week. We buy it from the gelato place near my house so it’s delicious but I do have to be careful as most of the flavors I like cause reflux. And then I can eat a few orange tic tacs, lifesavers or jolly ranchers here and there. Not exactly a good-for-the-teeth diet, but I work really hard to compensate for this and luckily I have a very understanding dentist who doesn’t shame me for eating candy.

Besides a tiny taste of things now and again, that’s basically all I eat. And even those things give me symptoms, sometimes really terrible symptoms, but not eating anything at all is also terrible, just in a different way, so it’s a balance.

Question: Do you feel hungry?

I don’t really get hungry, no. That growling stomach? Those hunger pangs? Those rarely happen to me anymore. I’m not an expert on the physiology of hunger and digestion, but I know that while part of hunger and satiety comes from stretch receptors and signals throughout the GI tract, part of it comes from levels of nutrients in the bloodstream. Because I’m still getting all the nutrients I need from my TPN, my body has no physiological need for food, which is what hunger is. Once in a while I will feel a small sensation of, “I think I’d like some food please,” from my stomach but when that happens it’s usually a trick! As soon as I feed it my stomach says, “Oh hold up I’m remembering that I actually don’t like food…sorry.” Sometimes I also experience that I-feel-nauseous-but-I-think-it’s-because-I-need-to-eat feeling. Also a trick.

Fun fact: my friend Leah and I frequently text each other “GTAF” which stands for Got Tricked Ate Food. It happens often enough that we have shorthand for it.

Question: Do you feel full?

Yes! I feel full pretty much all the time. Sometimes it’s just that I feel no need to eat, and sometimes I feel like I just ate even though I didn’t. And then of course when I do eat or drink anything, as I already described, that feeling of fullness reaches a miserable level.

Question: Do you get cravings?

Yes. Oh my goodness, yes! I just talked about hunger and fullness, but another pivotal player here is appetite, which is the desire to eat. I find appetite incredibly fascinating because even when I’m nauseated I still sometimes find myself wanting food despite the fact that it almost always ends badly. Oh and here’s another little fun fact for you. PMS cravings? Real. 100% real. Ladies, take it from someone who can’t eat and doesn’t even like chocolate that much, that chocolate craving you cannot ignore is legitimate.

Shhhh. Hoping no one catches me browsing the fridge.

When it comes to resisting food cravings, I find placement is key. If I open the fridge and see grapes (my all-time favourite food) front and centre then I am going to have a hard time resisting them, however if they are buried in the crisper then they’re easier to ignore. Ease of access is another important factor. If I have to take a lid off of a container or rearrange things in the cupboard to get to something then I’m less likely to make the effort. As well, the longer it takes for me to get to a food, the more time I have for reason and self-control to kick in. Sometimes, though, I straight up have to get my mom to hide food from me. Like pretzels. I will probably still go looking for them but luckily she is very inventive when it comes to hiding spots.

Okay now, brace yourselves or skip to the end, because the last thing I’m going to talk about here is poop. Not mine specifically! Yikes. Just in general.

Question: Do you still poop?

You have no idea how many times I have been asked this question! If my life were a drinking game I would take a shot (do a shot?…have a shot?…drink a shot?…can you tell I’ve been sick the entire time I’ve been legal?) every time someone awkwardly asked me this question while trying not to be awkward. Here are some variations: So um, if you don’t eat anything, do you uh…? If your stomach doesn’t empty properly how do you, well, you know…? I know you’re not really putting anything into you sooo does um, does anything, um, come out of you?

This question honestly doesn’t bother me because let’s face it, if I wasn’t living it I would be curious, too! The answer is yes. Even when you don’t eat your body still produces and secretes digestive juices into your GI tract and not everything gets reabsorbed. Your body also uses your GI tract to get rid of other wastes such as bacteria and old cell components. So yup, there is still some stuff to get rid of. The reality for those of us with chronic GI disorders is that we spend way more time than we would like thinking and talking about poop, to the point that we lose all concept of TMI, but for the sake of the rest of you, I’ll just leave it here!

And there you have it. Those are some of the facts about my life without food. Tomorrow I’ll be back with part two: the feelings.

Stay tuned!

12Feb2015

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

Posted in Uncategorized by Catherine

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:

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:

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:

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.

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:

But far more often it looks like this:

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:

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:

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!

4Nov2014

Clean hair

Posted in Uncategorized by Catherine

Yesterday afternoon I had my tunneled CVC (central venous catheter…same thing as a central line…but the cool kids call it a CVC…or the lazy ones) put in. In my last post I said that I wasn’t really sure what it would be like in terms of sedation and pain, so let me fill you in now that I know. Sedation was mild. Very mild. I was completely awake and aware the entire time with no memory lapses or anything. I was quite calm throughout the whole thing, and perhaps whatever they gave me helped with that, but I’ve also gotten really good at just lying still and remaining calm while doctors and nurses perform uncomfortable procedures…tube changes, PICC line placements…it’s all just part of the chronic illness territory. As for the pain, they numb you up really well so the procedure isn’t painful but it is incredibly uncomfortable. Once the numbing wore off it was a different story. I could barely move last night. Besides just the ongoing sharp ache all through my shoulder and neck, every time I moved I would get these sharp twinges. And it all felt so tight and stiff that I couldn’t even hold my head up straight. Ouch.

Thankfully today the pain is so much better! I’m still sore and I’m not moving around as smoothly or as quickly as usual, but it’s all very tolerable. I was determined to just suck it up and do all my own TPN stuff today so as not to delay my discharge. I am happy to report that I have passed what I like to call ‘TPN school’ and will be going home tomorrow!

I passed TPN school. I’m going home tomorrow. I should be satisfied, right?

Wrong. My hair was really greasy and it was really bothering me. Because I can’t get my CVC dressing wet, showering is actually quite a production. And since my feeding tube was all dressed and taped up it would have been an even bigger production. No big deal, I told myself, it can wait until I’m home tomorrow. Except that I couldn’t stop thinking about my hair. To make things worse I kept touching my hair to try and convince myself that it didn’t feel too gross, which then only reinforced for me that it needed to be washed.

I was lying in bed frustrated about the fact that my hair needed to be washed but that there was nothing I could do about it, and then I realized that if I really wanted to I could do something about it. Or I could at least try. So I decided, with my sore and stiff shoulder and neck, that I was going to wash my hair. I am now going to proceed to share too many details about the process so you can picture just how much effort was involved.

Ease myself up and out of bed. Disconnect my feeding tube. Pick up the TPN backpack. Grab a towel from the hallway and walk back to the bathroom. Put the towel on the floor of the bathroom and kneel down. Lean forward over the edge of the tub to see if I’ll even be able to move my arm enough and without too much pain. Stand back up and go back to the hallway to stock up on towels. Maneuver my way to the cupboard and awkwardly reach down to grab my shampoo. Reach down again to grab the Press and Seal saran wrap. Cover my dressing with press and seal. Take braid out of hair and brush it. Bring supplies to the bathroom. Reach up to grab the movable shower head extension thingamajig (no red underline under the word thingamajig!? Apparently it’s a real word!). Cover my backpack with a towel. Wrap towel around my neck and tuck it in shirt for extra security against the evil water. Lean over tub. Okay, phew. Now I can wash my hair! I’ll spare you the details on the actual hair washing itself.

It wasn’t the most painless process in the world, but it was far from the most painful one. Pain aside, I’m really happy that my hair is clean! It was a lot of work, but I’m really quite pleased with myself that I made it happen.

And sure, another day I’ll probably be discouraged by how much extra effort it takes me just to wash my hair, but for tonight, my clean hair is a huge accomplishment and I’m really happy about it. For tonight, my clean hair is enough to keep me smiling.

We all have our limitations and we all have things that take more effort than they should, but there is a difference between the two and I think we often get them confused. I know I do. I tend to be an optimist, but I am also very realistic about my health and my current situation. I know I have certain limitations; I know there are things I cannot do right now. I cannot work a full time job and I cannot eat a real meal. I cannot go to school and I cannot take a trip around the world. One day I might be able to do those things, but right now I can’t and I know that. In a completely separate category are the things that take a little extra effort but that I can still do. Like washing my hair. And getting enough calories into me. The problem is that sometimes I look at the extra effort required and see it as a limitation.

I’m not saying we should all abandon our realities and forget our limitations, all I’m saying is that we shouldn’t be afraid of putting in the extra effort to do things that make us happy and well. If we focus on all the things we can still do, and if we take pride in the things we accomplish in spite of the extra effort required, our limitations won’t always be the focus and they won’t always seem so overwhelming.

I leave you with a delightfully cheesy quote from my grade seven classroom: “Triumph is just try with a little umph.”

My clean hair is a triumph indeed!

I wish everyone tonight clean hair, whatever that may mean for you.

Finding my Miracle

Stories about my story

Tag Archives: TPN

When you can’t eat part one: The facts

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

Clean hair