The Tribulation of a Coiled Tube Change
Last Monday, the cap for the jejunal port on my feeding tube tore some, though thankfully not all the way. I called interventional radiology and the wonderful person on the phone found me a spot for Wednesday, June 20th. Quick turn around and I was equally stoked and scared. This was my first tube change. I am nearly five months out from the placement; it is nicely healed, but I have never done this before. Many questions swirled in my head. What is the technical process for replacing the tube? Do I get anesthesia, sedation, pain relief, or anything? How long does it take? Who does the actual replacement? Can I get the exact same tube? Can I feed the night before? Do I need to take extra meds or skip any meds? Does it hurt?
Does it hurt? That scared me even more. I used acetaminophen and cannabis after my feeding tube insertion and it was not even remotely close to enough pain management. How much would this hurt? Heart racing, I jumped on social media and beelined for my feeding tube support group. Post went up and the responses came in. Two kind and incredible folks cautioned I would be a little sore for a couple days, but that it was quick and very minimal compared to the initial insertion. Bolstered, I did a little research into the technical aspects of the replacement and came up with roughly the old tube comes out and the new tube goes in. Not a lot of information out there about HOW that happens. Much less worried about the pain, I abandoned my research, content to wait until Wednesday to find out.
Wednesday morning comes and we have to be at the hospital way earlier than I would like. I check in, hubs sets up to work, and they call me back. I change into a gown and shorts, but get to keep my bra and panties on. I hop onto a gurney; they take vitals and everything looks great. Once in the procedure room, I need to scoot from the intake/recovery gurney onto the table for the fluoroscopy machine. They need to see what they are doing for the tube change and fluoroscopy allows them to do just that. The tube will stand out starkly on the screen against the gastrointestinal tissue. I have a lovely tech, nurse, and doctor for this. Before he turn on the machine, the doctor goes over everything with me.
Here's how this works. The rough principle, like I said, is the old tube comes out and the new tube goes in. He, thankfully, explained in much more detail. He will guide a wire in through the current tube all the way into the jejunum. Once the wire is in place, he will deflate the balloon and gently, but firmly, pull out the old tube through the stoma. This is probably going to be the worst part of the entire process. It may hurt a little, but it will be over quickly. Once the old tube is out, the new, heavily lubricated one will be gently advanced along the guide wire from the stoma. Most of the tube is the same size as the stoma, so it shouldn't be uncomfortable. However, the balloon going in at the end will probably be a little painful again, but it will be heavily lubricated, unlike the one coming out. Once the balloon is in, he will inflate it, put on the bumper, and flush the tube to verify it works. Quick, simple, ten to fifteen minutes. He does hundreds every year. I got this. It took thirteen minutes and thirty-six seconds to place my NJ. This is going to be so much easier than that. I got this.
I had a few other questions at the beginning, so let's recapitulate. Do I get a sedative or pain relief? Not really. They do have topical lidocaine for the stoma though. For tissue typical people, this should be enough. Lidocaine isn't helpful for very long for people with connective tissue defects. I burn through it at fifty to a hundred times faster than the average person. They are willing to be very liberal with it for me, so it might actually help. Do I get the exact same tube? The folks who set me up at my appointment didn't know. I thought I remembered my surgeon saying the whole hospital uses the same kind of tube, so I wasn't too worried. The IR doctor confirmed that I do in fact get to
keep the same tube. Technically, I have a MIC GJ tube that was initially inserted via percutaneous endoscopic transgastric jejunostomy on January 31st, 2018. In non-doctor speak, they cut a small hole in my belly, attached my stomach to the abdominal wall, and connected the feeding tube. Can I feed the night before? What about my medications? The folks on the phone said no special preparation was necessary, so I fed overnight, disconnecting about two hours before I was scheduled. The IR doctor said that was fine. I also took all of my morning meds and half a promethazine in anticipation of procedural nausea. I really should have taken that whole pill. All in all, the doctor answered all of my questions before we began the procedure.
If you are heading to a tube change, I would suggest you stop reading here. This is how the procedure goes if you don't have Murphy's law ruling your life. However, if it weren't for bad luck, I would have no luck at all. The doctor turned on the machine and we see where the tube was. The doctor stifled a groan and turned the screen a little so I can see better. I understood the groan. My tube wasn't where it was supposed to be. In theory, most of the tube should pass out of the stomach through the pylorus sphincter and duodenum and into the beginning of the jejunum of the small intestines. Key operative word in the previous sentence is "should". In practice, my tube was coiled multiple times in my stomach and was most likely not feeding post pyloric. That has huge implications both at home and in this procedure room. For the past ten days before the tube change, I had a significant increase in the severity of my gastroparesis symptoms. Now I knew why. What a relief! However, my tube being coiled represented a significant challenge for my IR doctor. Remember the procedure? The old tube is used to place the new tube. He needed to straighten the old tube and put it back where it belonged before he could even begin the procedure described. My heart sank. His face set in grim determination and he turned back to the prep tray to gather himself. Grim determination seemed appropriate, so I instructed my face to follow suit. I already felt quite grim, so I closed my eyes in an attempt to conjure the determination. The tube was coiled and that was making me sicker. Being sicker makes progress harder. He can fix the tube. It's gonna be tough, but I will feel better afterwards, which is progress. This procedure leads to progress and progress is good, therefore by the transitive properties of math that probably don't apply here, the procedure is good. A tad simplistic, but it was enough to start feeling a glimmer of hope and hope brought the determination. I looked at the coiled tube on the screen, hoping it had fixed itself, and the doctor told me he was ready. I closed my eyes, gritted my teeth, and we began. The lidocaine wore off in about five minutes, but, true to his word, he immediately applied more. Five more minutes passed and there was more lidocaine. In between, pushing and pulling and twisting and pressure and discomfort, but no pain. It was scary and really hard, but every five minutes, eventually without prompting, he added more lidocaine. Nearly forty-five minutes passed, and he finally stopped tugging. I already felt so much better with the tube repositioned correctly, but it was still the old tube. I'm exhausted and drained, but we still have to replace the tube. He liberally lubricated the new tube, stepped back with the lidocaine gel and emptied it around my stoma. He swiftly drained the old balloon and started pulling it out. This hurt. My stoma didn't want to open enough to let the balloon out. He grabbed something from the tray and used it to help. Suddenly, the balloon was free and the pain stopped. The rest of the tube slipped out easily, unnoticed. Doctor grabbed the new tube and quickly slid it in. He warned me about the balloon and told me to take a deep breath. As I exhaled, he expertly slipped the balloon in and it easily passed through the stoma as I started to inhale again. He was very skilled at replacing feeding tubes. Once the tube was in, he filled the balloon, double checked it was in place with fluoroscopy, and flushed it to be certain it worked. Satisfied, he placed the bumper and declared the procedure a success. The nurse cleaned the butadiene off my belly and helped me back onto the gurney so they could wheel me back. I changed and that was it. The whole procedure took about an hour and all of the staff were exceptional, even the hilarious custodian.
I am still a little sore. Cannabis and CBD work very well for the discomfort. That was a lot of abuse for my poor GI tract and I heal slowly, so it is taking a little extra time. However, most of the flared gastroparesis symptoms from the coiled tube have receded back to baseline. My intestines are starting to move again, too, which is both exacerbating and relieving the discomfort. All in all, I have improved quite a bit since Wednesday and look forward to getting stronger. Very successful tube change. Until next time...
All my love,
Madame McWeed
Does it hurt? That scared me even more. I used acetaminophen and cannabis after my feeding tube insertion and it was not even remotely close to enough pain management. How much would this hurt? Heart racing, I jumped on social media and beelined for my feeding tube support group. Post went up and the responses came in. Two kind and incredible folks cautioned I would be a little sore for a couple days, but that it was quick and very minimal compared to the initial insertion. Bolstered, I did a little research into the technical aspects of the replacement and came up with roughly the old tube comes out and the new tube goes in. Not a lot of information out there about HOW that happens. Much less worried about the pain, I abandoned my research, content to wait until Wednesday to find out.
Wednesday morning comes and we have to be at the hospital way earlier than I would like. I check in, hubs sets up to work, and they call me back. I change into a gown and shorts, but get to keep my bra and panties on. I hop onto a gurney; they take vitals and everything looks great. Once in the procedure room, I need to scoot from the intake/recovery gurney onto the table for the fluoroscopy machine. They need to see what they are doing for the tube change and fluoroscopy allows them to do just that. The tube will stand out starkly on the screen against the gastrointestinal tissue. I have a lovely tech, nurse, and doctor for this. Before he turn on the machine, the doctor goes over everything with me.
Here's how this works. The rough principle, like I said, is the old tube comes out and the new tube goes in. He, thankfully, explained in much more detail. He will guide a wire in through the current tube all the way into the jejunum. Once the wire is in place, he will deflate the balloon and gently, but firmly, pull out the old tube through the stoma. This is probably going to be the worst part of the entire process. It may hurt a little, but it will be over quickly. Once the old tube is out, the new, heavily lubricated one will be gently advanced along the guide wire from the stoma. Most of the tube is the same size as the stoma, so it shouldn't be uncomfortable. However, the balloon going in at the end will probably be a little painful again, but it will be heavily lubricated, unlike the one coming out. Once the balloon is in, he will inflate it, put on the bumper, and flush the tube to verify it works. Quick, simple, ten to fifteen minutes. He does hundreds every year. I got this. It took thirteen minutes and thirty-six seconds to place my NJ. This is going to be so much easier than that. I got this.
I had a few other questions at the beginning, so let's recapitulate. Do I get a sedative or pain relief? Not really. They do have topical lidocaine for the stoma though. For tissue typical people, this should be enough. Lidocaine isn't helpful for very long for people with connective tissue defects. I burn through it at fifty to a hundred times faster than the average person. They are willing to be very liberal with it for me, so it might actually help. Do I get the exact same tube? The folks who set me up at my appointment didn't know. I thought I remembered my surgeon saying the whole hospital uses the same kind of tube, so I wasn't too worried. The IR doctor confirmed that I do in fact get to
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| PEG/J feeding tube: image from Mayo |
If you are heading to a tube change, I would suggest you stop reading here. This is how the procedure goes if you don't have Murphy's law ruling your life. However, if it weren't for bad luck, I would have no luck at all. The doctor turned on the machine and we see where the tube was. The doctor stifled a groan and turned the screen a little so I can see better. I understood the groan. My tube wasn't where it was supposed to be. In theory, most of the tube should pass out of the stomach through the pylorus sphincter and duodenum and into the beginning of the jejunum of the small intestines. Key operative word in the previous sentence is "should". In practice, my tube was coiled multiple times in my stomach and was most likely not feeding post pyloric. That has huge implications both at home and in this procedure room. For the past ten days before the tube change, I had a significant increase in the severity of my gastroparesis symptoms. Now I knew why. What a relief! However, my tube being coiled represented a significant challenge for my IR doctor. Remember the procedure? The old tube is used to place the new tube. He needed to straighten the old tube and put it back where it belonged before he could even begin the procedure described. My heart sank. His face set in grim determination and he turned back to the prep tray to gather himself. Grim determination seemed appropriate, so I instructed my face to follow suit. I already felt quite grim, so I closed my eyes in an attempt to conjure the determination. The tube was coiled and that was making me sicker. Being sicker makes progress harder. He can fix the tube. It's gonna be tough, but I will feel better afterwards, which is progress. This procedure leads to progress and progress is good, therefore by the transitive properties of math that probably don't apply here, the procedure is good. A tad simplistic, but it was enough to start feeling a glimmer of hope and hope brought the determination. I looked at the coiled tube on the screen, hoping it had fixed itself, and the doctor told me he was ready. I closed my eyes, gritted my teeth, and we began. The lidocaine wore off in about five minutes, but, true to his word, he immediately applied more. Five more minutes passed and there was more lidocaine. In between, pushing and pulling and twisting and pressure and discomfort, but no pain. It was scary and really hard, but every five minutes, eventually without prompting, he added more lidocaine. Nearly forty-five minutes passed, and he finally stopped tugging. I already felt so much better with the tube repositioned correctly, but it was still the old tube. I'm exhausted and drained, but we still have to replace the tube. He liberally lubricated the new tube, stepped back with the lidocaine gel and emptied it around my stoma. He swiftly drained the old balloon and started pulling it out. This hurt. My stoma didn't want to open enough to let the balloon out. He grabbed something from the tray and used it to help. Suddenly, the balloon was free and the pain stopped. The rest of the tube slipped out easily, unnoticed. Doctor grabbed the new tube and quickly slid it in. He warned me about the balloon and told me to take a deep breath. As I exhaled, he expertly slipped the balloon in and it easily passed through the stoma as I started to inhale again. He was very skilled at replacing feeding tubes. Once the tube was in, he filled the balloon, double checked it was in place with fluoroscopy, and flushed it to be certain it worked. Satisfied, he placed the bumper and declared the procedure a success. The nurse cleaned the butadiene off my belly and helped me back onto the gurney so they could wheel me back. I changed and that was it. The whole procedure took about an hour and all of the staff were exceptional, even the hilarious custodian.
I am still a little sore. Cannabis and CBD work very well for the discomfort. That was a lot of abuse for my poor GI tract and I heal slowly, so it is taking a little extra time. However, most of the flared gastroparesis symptoms from the coiled tube have receded back to baseline. My intestines are starting to move again, too, which is both exacerbating and relieving the discomfort. All in all, I have improved quite a bit since Wednesday and look forward to getting stronger. Very successful tube change. Until next time...
All my love,
Madame McWeed
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