No Spoons Left, Only Knives

It has been a few days since my last post, but don’t worry. You haven’t missed anything. Things remain unresolved. But not for lack of effort.

Previously on Eva’s Increasingly Absurd Reality, I had sent an email to my gastroparesis GI asking for a referral to another tube GI who would be responsive. The next morning I got a message from him on the portal saying that he had spoken to the tube GI who had been in New Zealand for at least one of the hospitalizations. Like that was a reasonable response that got him off the hook. He is not in a solo practice, he works out of the hospital. He has colleagues. I have met them.

Anyway, he also asked for photos of my stoma, which I promptly sent. The portal does not allow uploads, so he asked me to send them through the practice’s general email. Which I promptly did at 10am, when I got up. I hadn’t heard back from him by the afternoon, so at 4pm, I sent a follow up message through the portal confirming that he had received the photos. This morning I woke up to a response to my confirmation message from one of his admin staff simply stating that the doctor is now out of the office until Monday. So much for that route.

Yesterday morning, I also called the nurse, Esther, that the tube GI’s nurse referred me to. After not getting a call back all day, in desperation, I scheduled an appointment with one of the teledocs that our insurance gives us access to at no additional charge. All I had was a name of the doctor, no photo, no bio, she could have been anyone. Turns out she is one of the more responsible doctors that I have encountered.

She was incredibly sympathetic, but she was very clear that as a general practitioner, she had no experience with stomas and wouldn’t even know what antibiotic to prescribe. Honestly, I hadn’t expected her to be able to do anything. But at that point, it seemed worth a try.

This morning someone from the nursing department that my tube GI’s nurse referred me to called me back. They had no idea who this Esther was whom my tube GIs nurse spoke to and they told me that if it was an infection, there was nothing they could do about it and that I needed to see a doctor. I relayed my tale of woe and they put on Irma, who seems to be a head nurse. She asked me to text her photos of my stoma while she was on the phone.

She took a look and said that it was not actually an infection, but hyperplasia, which is tissue that has grown due to irritation. And the source of the irritation? My bumper is too tight. Which, you may or may not recall is also the reason for the ongoing bleeds, which were the reason for the very first ER visit back in December. So we continue to be dealing with the exact same issue that seems to elude anyone’s ability to address.

When I asked what could be done for hyperplasia, she said that the stoma could be resited (aka, cutting another hole in me and leaving this one to heal) but that this stoma looks well sited. So instead she suggested what is essentially a seatbelt for my tube to keep it from moving around, which moves the bumper around which causes the irritation. I wasn’t really clear on what that does for the incredibly painful hyperplasia or herniated tissue (that is what happens when an amateur gets two different diagnoses for the same tissue, you just go with both), but I am all for it not getting worse.

Of course, she can’t do anything without a doctor’s order, so she sent an email with the photos to the tube GI and the nurse practitioner whom she “presumes works with my doctor” along with her suggested plan of action and *gasp* called me back to let me know she had done so. I never get callbacks. I love this woman. She even gave me her direct number. I can now call a competent human being when I have questions. She may not be able to do anything about it, but she does know stomas. Sadly, that is better than nothing.

The take aways from this are that it is not an infection and my doctor shouldn’t be able to turn me away on Monday when I show up to get my tube changed. He may or may not have taken note of the situation, but he cannot say he is taken by surprise when he sees me and my herniated/hyperplasic tissue on Monday. It is Thursday, which means that I only need to get through 3 and a 1/2 more days of this pain and misery before I actually get a doctor’s undivided attention for as long as it takes to swap my tube. And that when that is over, I will have an adjustable bumper so hopefully I will never have to go through this exact situation again.

In other news, I had tried to start up acupuncture again this week, but I was in too much pain to go on Tuesday, so I rescheduled for next week. My intention had always been to restart after the tube swap, but I was in so much pain, I was hoping to get some relief earlier. But I just couldn’t imagine getting it together to leave the apartment.

Speaking of leaving the apartment, on February 20th, the sole elevator in our building is being taken out of service for 2-3 weeks to repair a motor that is making some really unfortunate noises. We live on the 6th floor. We didn’t have a firm date for the repairs until yesterday, only a “soon.” So despite the pain, we have been building my physical endurance just in case the elevator was out of service when I come home from my procedure on Monday. I can now do 3 flights of stairs up and down. So I guess I have that going for me.