Surgery, Complications, and an Extended Hospital Stay: Part IV

tubesWith the NG tube out of my body and my newfound ability to eat solid foods without vomiting, there was chatter amongst the doctors about releasing me from hospital. A couple of issues still persisted, however. First, now that my ileostomy was working, it was putting out too much. The average output from an ileostomy is about one litre a day. I was closer to three. Second, I had a pain in my ass. Literally. I felt soreness in my butt when I walked and when I sat down. The doctors dismissed the latter as “normal.” Just my body adjusting to the newly constructed pelvic pouch, they said.

My outputs began to decrease through a combination of Metamucil and Gastrolyte – an electrolyte replacement powder that I mixed with water. The Metamucil was terrible, but I quite enjoyed the Gastrolyte. It had a salty yet lemony taste to it. The pain in the ass persisted. Even so, Wednesday, May 22 was set to be my release date. However, on the Tuesday night, I developed a fever, a red flag that I likely had an infection in my body and that I’d have to remain in hospital. It turns out the pain in my ass was not normal. A CT scan revealed that there was fluid leaking into the pelvic pouch AND I an abscess, a buildup and pus, had developed inside me. So what’s the answer? Why, more tubes of course!

Soon after my CT scan, doctors inserted a rectal tube to drain the fluid buildup in the pelvic pouch. Since I’m no stranger to colonoscopies and endoscopies and other instances of things being shoved up my ass, I wasn’t overly concerned with the actual insertion. It was very much like any other endoscopy I’ve had. The difference is the fucking tube stayed in. No fun.

The next day I had another tube put in. This one was a bit more of a process. This was a percutaneous tube, one inserted into my body through a needle-puncture of the skin, rather than through one of the body’s existing holes. I was medication to ease the pain and sort-of-but-not-quite knock me out. The tube went into the top of my right butt cheek and down into the abscess. Back on my body’s surface, the tube drained into a plastic bag strapped around my right thigh.

But wait! There’s more! While the tubes in my butt drained the fluid buildup in the pelvic pouch and the abscess, a strange thing happened. My ileostomy output slowed down to the point where I wasn’t passing much, if anything, into the ostomy bag. Again, the solution was (you guessed it) another tube. This time it was a yellow plastic catheter inserted into my ileostomy to relieve the backup.

So now, let’s review. A catheter in my ileostomy, an IV in my left arm, a rectal tube in you know where, and a percutaneous tube in my right butt cheek. I didn’t feel human. I felt like a broken piece of machinery. Oh, there’s this problem with you, so we’ll just ram a pipe into you. Oh, there’s another problem, guess we’ll ram another pipe in there. It’s not that the doctors weren’t caring or sympathetic, but it felt I was being given mechanical interventions, not medicine.

All the tubes made everything difficult. Sitting was painful. Standing was painful. Walking was painful. Sleeping was near impossible. And while in bed, the smallest motion required work. The rectal tube drained into a bag that I clipped to the side of my bed. I wanted to lie on my left side, I would clip the bag to the right side of the bed, and vice-versa, so I wouldn’t be lying on the tube, and possibly interrupt the drainage. If I wanted to change positions in bed, I had to move the bag as well. If I had to get up to empty my ostomy bag, which I did have to do since the catheter was doing its job, I had to unclip the rectal tube’s drainage bag from the bed, attach the bag to my IV pole, unplug the IV machine from its electrical outlet and wheel the IV pole with me to the bathroom. Like I said, everything was difficult.

I had the catheter removed from my ileostomy after a couple of days. It looked as though the little blockage of whatever it was had cleared, and things in that area at least were functioning again. The rectal tube was in for almost five days. When the rectal tube first went in I thought maybe I would get used to it as time passed. In fact, it became more and more painful. I was in terrible pain at night when I tried to sleep, I couldn’t stand or walk for very long, and I always had to lean to my left when I sat in a chair or in bed (remember the percutaneous tube was in the right butt cheek). I was in agony by the time I got the welcome news that the rectal tube could be removed. Overall, I’d say the rectal tube was worse than the NG tube, and without a doubt it was the worst part of my hospital stay.

Rectal tube out, ileostomy cathether out, IV and percutaneous tube still in, and ileostomy outputs once again above normal, about 1.5 litres a day. Things were getting a little better after a stretch of torment, and there was once again chatter about a release, but I tried not to get my hopes up.

Image via Constellium

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About rasheedclarke

Award-winning author. Marathon runner. Exceptional dresser. I'd like to be all those things.

6 comments

  1. roxiane

    horrendous and ridiculous. I’m so terribly sorry. God willing it can only b uphill from here. I thought you’d been released last week & were finally enjoying some much deserved peace and relaxation. The upside of this never ending nightmare is that it does end & just wait til u get out of there. U won’t believe how different everything looks! I remember gorging on take out French Fries at the Scarborough Bluffs ( a definite no no @ the time) & then barfing them all up @ an Indian dinner later that night (another no no) ! Hey that’s living life after release. It really is like a prison sentence only u don’t know what the crime was & the punishment is unusually bizarre & cruel.

    • Roxiane, thanks for reading. I guess you missed it, but I was released last week. I’ve been home for a little over a week now, and taking advantage of my time at home to write about my experiences in hospital.

  2. roxiane

    oh… great that I’m behind & that that’s all behind too!!! U must be loving every second of being home after that nightmare. thx goodness ur home now 🙂

  3. Kirsten

    Hey Rasheed,

    Just discovered these posts. You’re such a trooper for having gone through all this stuff – and I’m so happy to hear that you’re home now. It’ll only get better from here.

    I totally hear you on the horror that is the dredded nose tube! Last time I had one in I kept throwing it up and they’d have to reinsert. It’s really whack what we are able to deal with in the hospital.

    I was discussing my surgery with my doctor this week and we still both agree it’s probably the best option for me. Simponi hasn’t made much of a difference so far, and now my hemoglobin is down to 83 so I have to start iron infusions. I just wanna get this colon outta me ASAP. I have another internal abscess (maybe similar to what you had) but I’m choosing to just leave it – don’t wanna go through another surgery. My doctor said crohn’s patients can’t get the internal pouch because the chance of fistulas around the pouch is so high – and it’s lower for UC patients so they are given the option.

    Even though you’ve been through so much, your situation stills gives me hope. I know that soon you are gonna feel healthy again and hopefully I will be able to as well one day. This disease may be a pain in the ass but we can totally take control.

    Keep on keepin’ on! And keep on blogging 🙂

    • Hi Kirsten, I’m glad you stopped by for a read! If you do eventually go through with surgery, I’m pretty sure you’ll have a smoother experience. I say that based on the law of averages, and because you/your surgeon won’t have the added challenges of the pelvic pouch. I hope you can find a treatment option that works for you, surgical or otherwise.

  4. Pingback: Worth and endurance | Rasheed Clarke

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