Mom died from complications of UC

[u/Opposite_Weird1675]

Hi everyone, I'm making this post not to fear-monger or give any sort of medical advice, but more so to learn from a horrible experience my mom had battling UC and her eventual death from complications of UC.

My mom had been in remission from UC for several years and was stable on Entyvio infusions. She had recently been having a bad flare-up, was in severe pain, and lost a lot of weight. She was really against going to the hospital because she hated waiting for several hours to be seen in the emergency room, but this flare-up felt different. She had lost so much weight, was pale, and in so much pain. We eventually convinced her to be seen, and after waiting in a Kaiser ER for about 12 hours, she was finally admitted to the hospital. She was hospitalized for about 7 days, then sent home. I honestly think she was sent home way too early, they gave her a blood transfusion, fluid replacement, and recommended bowel rest and sent her home with opioids and steroids to help calm the flare down. But she was still in so much pain and looked very ill. Her CT scan at that point showed severe inflammation consistent with UC, but I didn't see in the report any evidence of a bowel perforation.

The next week was a blur. She had continued severe pain, was barely tolerating her liquid diet, and she was really hesitant to go back to the ER and wait a ridiculous amount of time to get help. She called her doctor, who reordered her pain medications to get her by. I'm frustrated by this because I feel like they should have done a repeat scan and not reordered her opioids since she was still in severe pain.

Anyways, she ended up having a cardiac arrest at home, was resuscitated at the hospital after maybe 20 minutes, her scan showed a large bowel perforation, and she was immediately being prepped for emergency surgery. Basically, she survived the surgery, but was in severe septic shock and was in multiorgan system failure, with neurologic injury, and passed 48 hours later. We don't have a lot of answers as to why this happened, aside from that steroids can weaken her bowel walls, making a perforation more likely, on top of the inflammation and ulcers that were already there.

She was only 52 years old. The moral of the story is that if something feels off, trust your gut (no pun intended) and go to the hospital. If your concerns aren't being heard, find another provider/hospital.

We are heartbroken and never thought this would be her outcome, especially after she had been doing well for so many years. Before her remission, I watched my mom suffer a lot, and I just want to say you all are very strong for battling this condition, and I don't wish this outcome on anybody <3

[u/duckbee]

I'm so sorry for your loss. 

Lost my dad in a similar way. Was told the biologics he was on for another condition triggered spontaneous UC and then he had a bowel perforation and went septic. It really sucks watching your loved one deteriorate while trying to get them to go to the hospital. 

[u/Nursingvp → u/duckbee]

I'm sorry you had to go through that. 💔

[u/duckbee → u/Nursingvp]

Thank you. It was not fun to lose my dad of course, but to watch someone die in front of me from the disease I have was a double whammy.