Titles *Do* Matter

This past week was reminiscent of 2020 in that it felt like it was at least a month long. The week started out as expected as we continued to slowly recover from the trauma of the ER visit. Trauma that remained clear in our minds as the infected herniated tissue in my stoma got worse.

We have grown to have a real distaste for Fridays because that is when I seem to end up with health issues. This past Friday was no different. I had gotten the infection under control with the only tool I had, OTC antibiotic cream. But something inexplicably changed on Friday and the infection suddenly got worse. We didn’t know what to do. If we called the doctor, he would just tell us to go to the ER, and that was not something that we were willing to do again.

A brief aside here. I hate the common 1-10 subjective pain scales. What do the numbers really mean? Especially as someone who has, by necessity, built up a high tolerance for pain. So is my 3 someone else’s 5? Who can tell. I much prefer the ones that assess a patient’s subjective rating of pain with the objective determination of the pain’s interference with daily activities.

For example:
0 No pain

1 Tolerable (and does not prevent any activities)

2 Tolerable (but does prevent some activities)

3 Intolerable (but can use telephone, watch TV, or read)

4 Intolerable (but cannot use telephone, watch TV, or read)

5 Intolerable (and unable to verbally communicate because of pain)

Based on the above scale, I spent Friday and Saturday at 4. By Sunday I was back down to a 3.5. We decided that the prudent thing to do was to just wait until Monday morning at 9am when I could call the GI’s office during business hours. It was me, acetometaphin and ice. And a very frustrated and helpless David who could only check my timing on my meds and replace ice packs for me.

Oh, and there is one more thing. The motor in our elevator is due to be replaced any time now and it will be down for a week or two. David runs up the stairs regularly for exercise. But I am in no shape to walk up 6 flights of stairs and for all we know the elevator may be out when I come home from getting my tube changed next Monday. So we practiced by me walking a very shaky flight of stairs. Fast forward to today, and I am up to two full flights, so I am making progress.

Anyway, back to the story. We overoptimistically hoped that the GI might be willing to change my tube early because of the infection, so Sunday night we stopped my feed at 11pm so I could be ready. They want you to stop any intake of clear liquids 3 hours before anesthesia. When I woke up I just sipped enough water to take my meds (ok by their guidelines) and flushed my tube, but whatever.

At 9am on the dot I called the office and left and urgent message for the doctor about the infection and the pain and that we would not go to the ER again. At about 12:30, the nurse calls and confirms my pain levels and that I am taking Acetometaphin and says she will call back. Meanwhile, I continue not to drink awaiting a call back.

At 3pm, I have therapy. I tell my tale of woe to my therapist. She calls it outrageous, malpractice and unacceptable. We agree that I will call again at 4pm and leave another urgent message. Which I do. At that point, I am completely dehydrated and have gone way too long with out any nutrition. So we assume nothing is going to happen that day, I hook up a feed and proceed to miserably force a lot of liquid into myself.

Suffice it to say that my body was not a fan of the long break between feeds. But I am mostly recalibrated now. Although once again, I do get to repeat the experience next week. At least I will know what to expect.

This morning, having still not heard back from the nurse, I send a message to the GI who referred me. I told him an abbreviated version of the saga and ask for a referral to a more responsive doctor. At about 4pm this afternoon, the nurse finally called back. She said she would have called back sooner, but nobody in the GI practice that is located in a hospital knew how to find someone who is responsible for stoma care. Because apparently it isn’t the GI who puts in the tube or anyone in his practice, nor is it anyone in the GI’s practice who takes care of my gastroparesis.

Just to break that down for you a bit more. As far as the GI who puts in the tube is concerned, their responsibility ends the minute the tube is put in. But they have no idea who they pass the baton of care to. This is not just my experience. I asked my tubie group who was responsible for stoma care so I would know what to ask for. The only answers I got were people telling me horror stories of inpatient stoma care by people who obviously had no clue how to care for a stoma. In a group that is normally great for those kinds of answers, I got crickets.

But, kudos to the nurse who actually did track down who the stoma care baton was supposed to be passed to. An Enterostomal Therapy Registered Nurse. That is it, it is all there in the title. Yet it took over 24 hours for a professional to answer me. In fact, she located a nurse for me and asked her to call me to set up an appointment. Given that I have learned never to expect a callback, I got her number too.

It was late enough in the afternoon and I was feeling a bit more 3.7 than 3.5, so I used the energy boost from finally getting an answer to write this blog post. Calling the Enterostomal Therapy Nurse is a project for tomorrow.