Thursday, 8 March 2012

My jejunostomy tube swap #1: The back story

After having a fairly lengthy tube attached to the inside of my jejunum since November 2010, I finally had the feeding tube changed over to a very small and low profile 'button' version on February 21st.

*Just as a warning, there will be some mildly graphic medical photos of the tubes and stoma in this post.*

Here's what it looked like just after the initial surgery to install the tube in November 2010. It hurt way more than it looks here for something small...pretty much any movement at all was excruciating for the first couple of weeks, even on heavy doses of Panamax 3 times a day.

This post recalls some of the events leading up to the lengthy hospital stay in September/October/November 2010:

You may notice I wrote that quite a while ago now. I want to tell the rest of the story, but recalling such horrific memories about what happened and focusing on them is quite distressing. 

I started writing this blog post on the 23rd of February while the tube swap experience was still fresh, but due to the writing process unearthing more nasty memories, it's taken me a little while to get back to finishing off this part.

However, I will cover some more ground as I split this up into several different posts.

This post about my car has some photos and descriptions of what was happening around that time as well as my very slow road to recovery:

But anyway, back to the tube stuff. It had been suggested for the past few months, by my doctor, parents, fiance Sally and friends Daniel & Emily that I should get a low-profile version of the roughly 20cm long feeding tube that had been hanging from my abdomen since the surgery.

Despite keeping me nourished and alive, having a tube dangling around was pretty inconvenient for a lot of things. Because it would easily catch and tug on the stoma site, for the vast majority of the time I had it safety-pinned to my boxers. While stopping it from going all over the place, it also meant that the open wound of the tube site was being constantly rubbed and stretched, as I moved around doing normal daily activities like walking, driving and sitting down. This led it it getting very red, sore and irritated at times, as well as a couple of infections early on. It was also liable to get caught or hooked on something fairly easily.

At first, in December 2010, I was pinning it to the front of the lower end of my t-shirt. Sally suggested it wasn't the best spot, but I apparently needed to find that out the hard way myself. Going into the bathroom one afternoon, the loop of feeding tube caught the door handle as I tried to walk past. I wasn't moving very fast, but when you hook and yank a tube even gently on such a sensitive area, a mild tug can be pretty nasty.

I got pretty freaked out that I'd torn the tube out of my body for about a second, immediately stopping and removing the tube from around the doorknob. The stoma started bleeding a little bit, and feeling extremely weak and sick at this time anyway, I started to feel weak and shaky, and lay down on the bathroom floor, hoping it would be ok. In hindsight it wasn't a big deal, but it could've been pretty nasty if the tube had come out.

As I would discover when having the tube swap a few weeks ago, I really didn't need to have been worried about the tube coming out like that.

Despite knowing how much more convenient a small feeding tube attachment would be, the process of what had to happen put me off doing it for quite a while. To the extent that when I saw my gastroenterologist Dr. Rayner and he talked about changing the long tube over to a button version, I said that after what happened last time, I'd really rather not go through it again.

While my entire hospital stay in late 2010 was awful, there were a couple of procedures related to the feeding tubes which still haunt me in my dreams, and rate up there with some of the nastiest medical procedures I've been through...and I've had a lot.

 Fairly early on in my stay, I was able to eat only very marginal amounts of food...barely enough to keep me alive in the long run. With no end to that situation in sight, it was decided within a week that I would need have a naso-gastric feeding tube inserted to give me some nutrition. At this point my weight had plummeted from 64.5kg in early 2010, to just over 50kg in October 2010. With my stomach muscles paralysed and completely unable to process and digest food, I was literally beginning to starve to death.

Here's a comparison of how drastically bad things had gotten in a relatively short space of time; the first photo was taken in January 2010, at my older brother Drew's wedding.

And this was taken at the Royal Adelaide Hospital on October 6th, 2010.

In an unfortunate turn of events and timing, Sally's dad was getting married on Flinders Island (near Tasmania) on October 1st, so she was away when I first went in, which was very tough for both of us. In an odd coincidence, the nurse who looked after me at first was called Sally too.

I couldn't eat any food the first full day as it was, and couldn't even face drinking water, but I think even a healthy person without life-threatening levels of nausea would struggle to get these 'scrambled eggs' down and keep them there. Makes me feel worse just looking at the pictures of it now. And this was despite the fact I'd specifically written down that I was allergic to eggs- which didn't stop them from bringing me eggs for breakfast the next 4 days in a row. 

The amount of mistakes the hospital made in regards to food allergies, medications and general care was actually quite scary during both my 2010 hospital visits, I was very lucky to have my fiance Sally and parents looking out for me. I would hate to think how badly things could go wrong if you weren't able to fend for yourself.

I am in no way being sarcastic when I say I would much rather eat the plastic, paper or cardboard instead. I think this is the epitome of bad hospital almost unidentifiable yellowy-grey congealed mush sitting in a pool of tepid water.

Coming into hospital I was seriously dehydrated and malnourished, and constantly had IV saline and glucose fluids running through a drip to keep me hydrated.

Less confronting than the eggs were these high calorie pseudo fruit flavoured drinks, which were delivered 3 times a day. They're thick, sickly sweet and you can almost feel your teeth melting when drinking them. I'd had them at home the previous few months, but whenever I drank them, I just felt even worse.

With my circumstances fairly dire at this point, even something as simple as watching the Simpons in my hospital bed posed some difficult questions.

Having been tested and diagnosed with a severe yeast allergy in 2002, I hadn't actually had any more than a few pieces of bread between 2002-2010. So the image above of Homer and Bart eating sandwiches is already something that was off-limits for me. With my body not even able to orally take fluids without problems, it made me wonder if this innocuous scene of a father and son eating sandwiches together was something I would ever actually be able to do. Not the sitting on the roof part, but just eating food with your kid, which is a perfectly mundane, boring thing to do that happens hundreds of millions of times a day worldwide...unless you can't eat, and don't see a way out of being bedridden and half-starved.

The 'proposed discharge' dates on these patient information sheets are almost just a technicality for the hospital system bureaucracy, but the date shown here, September 29th, was a very long way off. As I discovered over the weeks to come, I wouldn't be leaving until November 17th.

The nights were hard. Mum and Dad would alternately stay with me during the day, but obviously had to be home as well. Hospitals are terrible to try and sleep in at the best of times, and coupled with horrendous nausea and weakness of being extremely malnourished, there was a sense of impending doom as darkness fell.

While I was lucky to have my own room for the first couple of nights on the ward, I soon had to be moved into one of the general six-bed wards in the Colo-rectal Surgical Unit. As the name suggests, most people are in there for various digestive system related illnesses and surgeries. There are patients suffering from a variety of ailments like bowel cancer, diverticulitis, Crohn's Disease, and in one young guy's case, accidental ingestion of a cleaning product that was placed in a soft drink bottle.

Just feeling as nauseated and weak as I did was bad, but with the added stress of having other sick people around, and the smells, sight and sounds of gagging, coughing, snoring and frequently vomiting, all within a few metres of my bed  made it so much worse. Any chance I had of maybe being able to eat a little bit of food was severely reduced by the situation I was placed in, and again, not exactly a place where a normal person would want to sit down for a meal, accompanied by the sights, sounds and smells of someone emptying their stomach contents close by.

That ward was where I had to be, but realistically, it was probably one of the worst wards to be in, given the symptoms and side-effects of gastrointestinal disorders and surgeries. Which sounds a bit selfish, but that didn't stop it from being an awful place to feel sick. I have a nearly phobic aversion to seeing and hearing people vomiting, and will try and avoid it at almost any cost, so trying to think of a worse place to be in with my health problems, I'm struggling to come up with any examples, short of a public toilet or sewage treatment plant.

On the upside, I was placed near a window, which overlooked the eastern side of the hospital grounds, as well as part of the Adelaide Botanic Gardens. Which was a little nicer to look at than the plain white curtains.

In another bout of unfortunate timing, my admission was only a few days before my 26th birthday. My gastroenterologist came by every morning to see how I was doing. After a few days of me unable to eat any more than a few mouthfuls of pureed chicken and steamed vegetables, it was fairly strongly suggested that I should have a naso-gastric feeding tube to actually get some level of nutrition in. The way I was going, my situation was just going to get worse if it was put off any longer.

In previous years of hospital visits, the feeding tube had always been suggested as an option. Very reluctant to have something like that done, I'd always somehow managed to force myself to eat, although that led to me feeling so horrifically and permanently nauseated, that I couldn't even justify a visit a friend's house for around 8 months in 2006. And I'm used to doing things when I feel awful.

 I really don't know how I was able to keep force feeding myself back in those days. Again, it was barely enough basic pureed turkey and steamed vegetables to keep me going, but I could hardly move out of the fetal position in bed or on the lounge in front of the TV, hoping and praying the torture would stop. Fortunately I was able to very slowly recover from that situation, at least partially, to the extent where I had some semblance of a life over 2007, 2008 and 2009.

However, having enjoyed a higher level of health the few years before late 2010, I just could not get myself back to the self-destructive frame of mind needed to keep eating under those circumstances. Which may sound a little backwards, but constantly undertaking an activity that caused me to regret that fact that I was even alive, was in no way a healthy or sane thing to be doing. For those 8 or 9 months, I literally had no break, anywhere, at any point where I was happy to be conscious, or simply not hoping to die so the torture would stop.

One of the most confronting aspects of a chronic illness like this, and something 'normal' people can't really comprehend, is that there is no guaranteed end to it, if any. While people who catch a flu or stomach bug feel awful for a little while, there's always the soft cushion of 'It'll be over soon' in the back of the mind for acute illnesses like that. 

Which is easily viewable by looking at some people's facebook status updates about a mild head cold, along the lines of "I feel like crap, I've been in bed for TWO DAYS, I'm so sick of being sick," which is ridiculous from my point of view. While having the flu can actually be nasty, I literally don't include a normal cold under the definition of 'being sick'. It's a sore throat and runny nose for a few days; nothing more than a brief, mild annoyance, which will never make so much as a blip on the radar in life events.

With me, and other people suffering from gastroparesis, it's the opposite. While I might be able to force feed myself a few meals over a day, feeling too sick to move and losing the will to live, the knowledge that the situation may never end was just too much for me to take. I simply could not justify making myself do that with no relief in sight.

On October 3rd, I ended up agreeing to have the feeding tube inserted, incredibly apprehensive about it, but as I said before, having had a day's worth or less of food in the past week, I was starting to starve to death, with my muscles being eaten away for energy in the absence of food. Since it was my birthday the next day, it was decided that the doctors would leave the procedure until the morning of the 5th.

Happy birthday cards and wishes have never felt more ironic.

Coming up in Post #2: the feeding tube insertions and subsequent surgery.


  1. I want to say something, but I'm afraid it will come out wrong... while I don't know what you face everyday, those feelings of wanting it to end, they come with mental illness too, and I know what that's like. You fight with all you have, or you take the alternative. Keep fighting, keep sharing and making a difference. x

  2. suzanne piovesan8 March 2012 at 16:11

    Thanks for sharing Rohan - it's very easy for us on the "fringes" to see you up and about and not really realise fully the very challenging journey you've been on.You are amazing! I will never complain about a cold again!! :)The eggs really did look awful....

  3. Thanks mystery reader, I appreciate the thought and encouragement, it means a lot. Hope you can stay strong fighting your own illness battles.

  4. Thanks Suzanne, I am a bit misleading at the moment in a way...I look ok to most people, but take away my feed and syringes for water, and I'd be in big trouble very quickly.

    And yeah, you can see why most people lose weight in is horrendous.

  5. Hi iv been on intrel feeding 5yrs jej fd but recent ops av left me with no digestion so am on total perentera l nutricion through hikkman line vein but av my jej insitue for sum meds howeva i cant get any down as it leakes litres through tube jus wondered if this happens to u