Esophageal Ulcer

Last week I was having major pain in my esophagus. Suspecting esophagitis (which I've had before), my family physician called in a prescription. 

It got worse. 

My husband wanted me to the ER, but I was hesitant, so I contacted my GI, who suggested I go into the ER. 

Friday morning I was admitted. 

A doctor (Dr. A) came to see me and assessed me, and seemed seriously concerned. 

Oh shit - should I have come in sooner? I'm glad my GI said to come in, I may have waited a couple more days. 

The lead of the GI team (Dr. B) also assessed me. She was quite concerned not only about the esophagus, but about the bowel symptoms I've been experiencing over the past 10 months. She booked an upper endoscopy and a lower pouchoscopy for the following morning. 

Okay, so maybe the flare symptoms are a bigger deal than I thought... 

I expected to spend the night in one of the ER recliners, but they got me into a room. A beautifully spacious suite with my own private washroom, shower, and bay window! I guess that's one perk of having chronic diarrhea - they need to keep you on isolation until they rule out contagious infections.

Saturday morning they performed the double scope procedure (an hour late because of miscommunications about my IV treatment before any procedure). 

Got back to my room, was given lunch (fluid diet), which was then abruptly taken away because I wasn't approved to eat yet.

Saturday afternoon, Dr. B explained that I have an esophageal ulcer (which explains the pain), some ulcerations in my duodenal bulb and duodenum, and that nothing showed on the lower scope. I was put on a medication for the ulcer, which would take 12-16 weeks to heal. She said they would keep me in hospital until the biopsy results come in and that she wants to investigate the bowel symptoms while I'm in hospital anyways. 

Wow, they really are concerned. Maybe I should have come in about my Crohn's before this esophageal thing. 

Dinner came (regular diet).

Saturday evening, another doctor came by (Dr. C) and said that I would be discharged the next day. 

Okay, maybe not concerned anymore. 

At 11pm I was moved to a communal room once it was clear I wasn't contagious. 

Sunday morning, breakfast came (fluid diet), then another doctor (Dr. D) came to see me and said that I was being discharged. I explained my confusion at the change of plans from yesterday, so he went to speak to Dr. B. 

Not a big deal at all then. Home time. 

Dr. D came back - Dr. B was still really concerned about my bowels and wanted to try and get me an MRI, and was insistent on waiting for the biopsy results. So I would be staying until Tuesday or longer. 

Okay. Big deal. Got it. They are quite concerned. 

Monday

I was supposed to have an appt with my GI at a different hospital, so I had been told I would get a day pass to go. 

Then they decided not to allow me a day pass, so I was given a choice between a phone call, an ambulance transport (no guarantee on being on time since their schedule is so understandably unpredictable), or to reschedule until October. So I decided on a phone call appointment. 

Dr. A came to assess me. She applied for a day pass for me and was wondering why I was on pills for the ulcer instead of IV treatment. Appointment was changed to in-person. 

Then, an LPN came in to assess me. They were too concerned about my bowel symptoms to let my husband take me to my appointment. So it was changed again back to a phone call. 

Wow, they're super concerned. Yikes. It must be a big deal. 

Phone call with my GI was actually with his Fellow instead of my GI himself. She said it was appropriate for me to stay in hospital and they wanted to do a thorough investigation of my bowels while I'm already there and recovering from the ulcer. 

Okay. Yep. A big deal. 

The pharmacist came to see me to go over my medications. They had been giving me the incorrect dose of one medication, they were missing a couple of medications, and she wanted to make sure they had a specific plan for this coming weekend when I switch antibiotics, because it looked like I'd be staying until Thursday or longer. 

Okay, a really big deal. 

I got back to the room and was told I'd be changing rooms again (they had a male and female together in a semi-private room and wanted two females together instead). So housekeeping came to clean my room and I sat in a chair until my new room was cleaned and ready for me. 

Then the LPN came to visit again. The same one who said I couldn't leave the hospital for my appointment because they were overly concerned. 

She said I was being discharged... because my bloodwork was normal and I was on pills for treatment, they had no reason to keep me. 

Okay... so not at all a big deal? 

I asked where I should wait for my discharge papers (I was told it would take about an hour) and was told in the tv waiting room. I asked a nurse where that was and she directed me outside the unit. So I changed in the public washroom and sat at a table where reception could see me outside of the unit. Of course, more miscommunications happened and it took over 2 hours because they couldn't find me. 

By this time I was so upset by all of the miscommunications and each doctor/LPN seeming to be on a different page and all of the drastic changes in opinions and plans, that when the nurse came to give me my discharge papers, I was in frustrated tears. We expressed those frustrations and she let her charge nurse know. 

We were already in the parking lot when the new lead doctor that was on my case (Dr. E) called and asked if we could come back. So we had a conversation with her about our frustrations and the total mixed messaging and miscommunications. 

We drove home. 

I am very happy to be home, recovering in my own bed. 

This kind of experience is precisely why chronic illness patients are often so reluctant to seek treatment for flare-ups. I'm so used to dealing with everything at home and it's incredibly hard to know when it's actually something to be truly concerned about or just par for the course. Not one doctor could agree on whether it was extremely serious or not at all concerning, and there seemed to be no middle ground. It was either 'we can't let her go home like this' or 'she has no reason to be here'. 

I was told that if it worsens again, to come back to the ER, but honestly, why would I? Would you? 

The day before my scopes I had 12 brutally bloody stools despite having only water the entire day, but my bloodwork was normal and my lower intestine (my internal J-Pouch) showed no active bleeding. So even if that blood continues, nothing has changed. My bloodwork will still look normal, my pouch will still look normal, and no doctor will be able to agree on whether I am sick enough to be in hospital or healthy enough to be at home. So why would I go back in? 

I would like to say that I LOVED the nursing staff, and each doctor was exceptional. Apart from the communication issues, it was actually quite a positive hospital experience. It was the lack of communication between them that was so frustrating. None of them could get on the same page, and I'm the one who suffered for it. 

My MRI is in 3 weeks. 

And no, my biopsy results are not back yet. It's Tuesday afternoon.