The Bumper Trilogy

Usually, I can just sit down and bang out a blog post. That was not the case with this post. This one took several attempts over several days. I think you will understand why once you have read it all.

This is the saga of how a cumulative 34 hours in the ER not only failed to resolve an issue that could have been easily addressed in a single face-to-face doctor visit, but made it both much worse and left a patient and her spouse traumatized.

If you recall, back in December, I had a stomach bleed and was sent to the ER by my doctor. I was supposed to receive a medication that would help my stomach heal, but it was never administered. Eventually, I volunteered to vent my tube, we saw that the active bleed had stopped and I was sent home. Issues addressed:0.

A week later I was once again sent back for the same bleed. This time someone from GI actually came down to see me. He determined that there wasn’t enough space between my inner and outer bumper because I had gained 4lbs and he yanked my tube out a few millimeters. Afterwards, an attending GI and her minions came down and confirmed that my outer bumper should never be any tighter than it was after the adjustment. I was given the Rx that I should have been given at the first visit and sent home. Somehow completely missing that this would eventually lead to my third, and most horrific ER visit.

Two and half weeks later, after some continued small bleeds, the GI who had originally inserted the tube said that I had been having a harder time adjusting to my tube than most and grudgingly agreed that the inner bumper might be the problem. However, since the plan had always been to swap out my current tube for the kind he liked better after four to six weeks, he agreed to put me on his schedule on 2/13 for the replacement. He added that the new tube’s inner bumper is an adjustable balloon and would most likely be more comfortable for me.

I had a good 3 weeks and David and I were feeling optimistic about beginning to think about making plans for the future. But then once again, bumper issues resurfaced.

I believe the timing was purely coincidental, but it was the combination that kicked over the dominoes. Wednesday night, I had a very specific, but repeatable clogging issue in my tube. It worried me enough that I called the on call doctor. They told me to use warm water to dissolve the clot.

I did not go to medical school, but even as a relatively new tubie, I know how to deal with clogs, having had my share of them already. I didn’t think warm water would make a difference, given that I already use warm water to flush, but I agreed to try it. Whether it was the elapsed time or the warm water, it didn’t matter, the clog had cleared. End of story.

The next day was a different issue. First, some history. I had noticed some loose tissue in my stoma (the hole that my tube goes through) after the tube yanking incident during the second ER visit. I knew that with tubes come the potential for skin issues, so I wasn’t concerned. It was a bit irritating and uncomfortable, like having a blister, but nothing worthy of note.

For reasons unknown to me, this piece of tissue became inflamed and irritated this past Tuesday. It was bleeding and looked like it might be infected. I added a topical antibiotic to my cleaning regimen and clued David in. Wednesday he decided to hang out with me when I cleaned my stoma. He had been kind of unhappy* to hear that my stoma was bleeding the day before and wanted to see things for himself.

This time the tissue was more inflamed and the bleeding was worse. Nothing serious, think a bad cut. As I was drying the area with a cotton ball, I got a flash of pain and felt woozy, so I sat down on the bathroom floor. Then I started to see stars (it is not just a cartoon thing, apparently) so I lay down. I never lost consciousness, but per David, I wasn’t able to see anything but stars for 3-5 minutes.

Once I could comfortably sit up, I called the doctor on call’s service and left a message. I was still lightheaded when the doctor called back an hour later. The doctor wanted me to come into the ER right then. I pointed out that they wouldn’t be able to do anything until morning so in my mind it made more sense to get a good night’s sleep at home, set an alarm and go to the ER very early the next morning. That way the doctors would still have any test results when the clinic opened at 9am. For the record, David was unthrilled* with my plan. But both he and the doctor saw the logic in my plan, so we agreed that was what we were going to do. She also said that she was going to send a note to my doctor telling him that I had called them two evenings in a row

A couple of hours later I get a call back from the doctor on call. My doctor had called her and said that he wanted me to go to the ER right away. He had put in orders for the tests he wanted, including a CT scan in preparation for scoping me the following day. This included the replacing my tube earlier than my appointment scheduled in February. While I still thought my plan made more sense, I knew better than to argue with two GIs telling me to go to the ER, so we packed up at left the house at about 9pm.

The ER seemed emptier than we had seen before and I was quickly placed on a gurney. The gurney area of the ER was packed, including poor folks placed opposite the bathrooms. The man maneuvering me around parked me in the entrance hallway (we could see the front door from our spot) saying that we would be much happier there than in the main room.

A nurse quickly came to find out what was going on and not long after the ER doc came to tell me that there was nothing that they could do for me there and that we should go home. I carefully explained that we had been sent there by my GI who works upstairs and that he had put in orders for the tests he wanted done. She left never to be seen again.

A short while later our nurse returned, I asked for some Zofran (I am telling you, IV Zofran is so very magical), which she delivered and David and I settled down to wait. At about 2am, our nurse came by to let me know not to eat or drink anything because I was going to be scoped the following day. I was feeding at the time, so I asked her if I should stop my feed. She confirmed that it was not going into my jejunum and not my stomach and said that it was fine to continue.

At some point in the wee hours, I was wheeled to get my CT scan. There was no queue at that hour and we were expeditiously returned to our hallway home. Around that time, our nurse checked back in, I got my Zofran re-upped and we continued to wait.

Shift change came and went, and still we waited. It had been hours since we had seen a nurse and I was getting pretty desperate for some Zofran. So David went off in search of a nurse. He asked the first one he came upon if she could point him to our nurse. She checked the system, discovered that she was our nurse (we hadn’t been on her paperwork) while our regular nurse was on break. She gave me my Zofran and we waited a bit longer.

Because bureaucracy waits for no one, at 9am I started making my now regular calls to my supply company and my GI to get the supplies from the order placed on January 10th. A mere 17 days prior. The insurance company had finally approved the order, but some unnamed middle entity that contracts with the insurance company to make the actual payments had rejected the order.

I found this out when a rep from the supply company called me about it. She had apparently faxed my doctor’s office twice and had gotten no reply, so she reached out to me to see if I could get the doctors office to respond. After pulling several teeth, I finally got the woman at the supply company to spell out exactly what she needed the order to say so that it would be approved.

It had been several days of fruitless efforts. No calls were returned and no progress was made. But I wasn’t going to let sitting in the ER stop me from trying. Spoiler alert: no progress was made.

At about 11am, having not seen hide nor hair of anyone responsible for my care in several hours, I went and sought out our nurse for an update. He was surprised because he had spoken to a GI fellow 30 minutes prior who said he was going to come speak with us. I was sufficiently aggravated that I called the GI’s office myself. The best I could get was the person who answered the phone would send an urgent message to the secretaries who are the only ones allowed to speak with the doctor.

An hour or so later, we finally got a visit from a GI fellow. He confirmed that there was an open slot for my scoping and tube replacement, and the doctor who would do it would be down to see me soon. I once again confirmed that it was ok that I was continuing to feed. He said yes, and left.

About an hour after that, roughly 1pm, The fellow and the doctor who would be doing my scoping and tube replacement came to see us. Her approach was antagonistic and made it abundantly clear at the outset that she did not want to do any procedures on me that day. It was Friday afternoon and I don’t think she wanted another patient.

She roughly poked at my abdomen, despite both David and I protesting that my abdomen was very sensitive. Without looking at my stoma, she gave me a lecture about my dressing. When she removed the dressing, she made the tissue bleed and muttered under her breath when she used the very same dressing she had just lectured me about to staunch the blood.

She said the stoma looked fine, but that there was just some herniated tissue. Let me unpack that statement a bit. I am not a doctor, but I do know that a stoma is never supposed to bleed. I also know what my stoma looks like and it did not look good. It was red, inflamed and bled when you just looked at it. But that isn’t the big take away here.

That tissue that had been bothering me for 3 weeks? That was not some skin irritation. It was a piece of my inside on the outside. That is not something that I believe should be dismissed off hand. Especially when that bit of inside is on the outside.

But the piece de resistance was when she said that the bumper was too loose and tightened it. Because why not top off a great ER visit by reversing what the doctors did at the previous visit?

The doctor continued to insist that my tube was fine and that it didn’t need to be changed. I just kept reiterating that the tube was being changed regardless, it was just a matter of when. And that my doctor had ordered it to be sooner rather that later. Finally she challenged me. She made me verbally confirm that I wanted her to change my tube. Twice.

I was getting increasingly anxious about her being the one to switch my tube. I was hoping that she was professional enough to do it right, despite her obvious desire to do anything but change my tube. But then she spotted her out. The relief was evident on her face.

I asked if I should disconnect from my feed. She said that I couldn’t get my procedure done since I had been feeding. This surprised the fellow because it is “post pylorus,” which means that it is below the stomach. The reason that you can’t eat or drink before anesthesia is because there is a risk of aspirating stomach contents while anesthetized. But the pylorus muscle blocks intestinal contents from the stomach so they cannot be aspirated.

The doctor said that she would have to confirm with the anesthesiologist, but that it was very unlikely that I would be getting my tube changed. They left and I burst into tears.

No one from GI had the guts to come break the news to us. Instead, they sent the ER PA to tell us that I was being discharged. He had reviewed my case and arrived knowing that we had been waiting for 18 hours. And that I had been told by my doctor to come in the previous night. He was kind and patient and caring and everything we needed at the moment. But honestly, that was of little comfort.

What he did graciously do for me is get an answer directly from the anesthesiologist about prep for my tube change in February. I was not going to be turned away again because of bad advice. Nor do I give up on nutrition lightly. This was was the only useful outcome from this entire experience, because the prep instructions that I received from the doctors office make absolutely no mention of instructions for tube feeders.

The discharge instructions were laughable:
“Follow up with Dr. Kumta. You should call the office on Monday to see if they can schedule your procedure earlier.” They couldn’t have been more ironic if they tried.

Speaking of irony, the kicker in all this? The topical antibiotic did its job. The herniated tissue was clearly infected and it has healed considerably since Tuesday. It is much less painful when cleaning my stoma and while it still bleeds when I touch it, it is only a few drops.

David and I left the ER late Friday afternoon and now, 3 days later, our bodies have mostly recovered from the sleep deprivation and the aches and pains that come from middle aged bodies spending 18 hours on hard chairs and gurneys. But emotionally, we both have a long way to go.

How does one recover from an experience like this? Knowing that I face a future of cyclic ER visits because doctors rely on them instead of office visits. It’s not like we can just walk away from the medical system at this point. And it is not just a problem with these particular doctors. I have been fighting against the medical system for two years now. I have had to learn everything I can about my own disease, from both the medical literature and others’ lived experience to direct my own care.

Perhaps it is because I now have enough nutrition in me to process my experiences, instead of just being able to put one foot in front of the other, but this just broke me. I am feeling completely defeated and ready to give up. That is not hyperbole. I just don’t think I can keep this up. But I wouldn’t worry about me just yet. My therapist says that I am a survivor. The fact that I pushed through literal starvation to navigate a completely broken medical system on my own is all the confirmation she needed.

The fact that I am giving up right now doesn’t mean it will last forever. I need some time to move past the immediacy of this trauma before I can start thinking about next steps. Meanwhile, I will continue to increase my nutrition, even if that means paying for my formula out of pocket. And on February 13th, I will get my tube changed. But that is all I can commit to at the moment.

*An understatement