Spencer is 26, has ulcerative colitis, and recently had his fourteenth surgery in three years. Some of the surgeries have been up to ten hours while others were short diagnostic and exploratory procedures. The last one was supposed to be the final surgery. Each procedure and surgery offered hope to be the last. Infections and medical mistakes have caused pain, hospitalizations and the making of an empowered patient and caregiver.
Spencer started his journey when he decided to have a JPouch, a procedure that removes the large intestines and creates an internal pouch of the small intestines . It is often a successful option to an ileostomy. For Spencer, it never worked well. After the initial surgery he had infections and a large hematoma. He had a temporary colostomy and then a reversal back to the JPouch. But the pain was always there causing decreased appetite, nausea. fatigue, multiple trips to the ER and hospitalizations.
One of the glaring problems was communicating with the surgeon or any medical professional was torturous. It was difficult to get call backs or information on why the problems were not resolving. It was clear the doctors weren’t sure why the problems were happening and didn’t have a plan. It didn’t seem to bother them that the pain was debilitating and his quality of life was hitting rock bottom. Spencer struggled to work full time to have health insurance.
His partner, Danielle, was frustrated by the lack of concern and communication. She was watching her partner suffer without adequate response. She would call repeatedly and not get a answer sometimes for days, resulting with a trip to the ER. A change of doctors offered some hope.
Spencer’s pain became so great he could not function. You could actually see the muscles spasms throughout his back. His weight had dropped 50 pounds. Because the pain was centered on the back and not the abdomen, he was being told it was not related to the surgery or JPouch. Danielle had to scream at the top of her lungs to get anyones attention. The cause was not the back muscles.
It took several more surgeries for someone to discover the original JPouch was filled with infection. It was 2.5 years after the original surgery and multiple exploratory surgeries before it was diagnosed. Another temporary colostomy was put in place. The discussion became what would be the best option for the future, another JPouch or ileostomy.
Spencer and Danielle came to the decision to go with a permanent ileostomy. They thought this would end the journey and they could move on from the trauma of the last three years. The surgery was a disaster. There was somehow a puncture in the colon/ileum. The pain was excruciating and drains had to be placed. He was placed on a no food order and received nutrition by IV. What was supposed to be a five day stay became almost a month. He was sent home on IV nutrition only and no food by mouth for at least another month. The only way to hopefully heal the puncture is by not eating to allow the area to be at rest.
Spencer has exhibited nothing but courage, dignity and integrity through this process. Of course, he has had his down moments but he has kept his mind on the goal. It is with awe and amazement, I have watched this journey of profound courage. Even now, there is no guarantee this will solve the problem. Surgery is really not an option at this point. His insides are battered and have lots of scar tissue.
Danielle has inspired me by here determination to get what Spencer needs. She has become an ace at getting the doctors to respond and has no qualms at challenging them. She has been known to show up for early morning rounds. She has told residents no to new orders unless she speaks directly with the surgeon or other involved specialist. She has cried and been anxious but she has maintained her strength and resolve to get Spencer the best possible care.
Once Danielle and I were discussing the horrors of the system and I asked her if she thought someone should apologize for what Spencer has had to endure. She looked at me and said; it would be nice for Spencer but I don’t expect it and I don’t think about it.
It takes courage for medical professionals to acknowledge they aren’t sure why things don’t always turn out as planned. The multiple trips to the ER occurred because medical personnel were not listening to what Spencer or Danielle were saying. Reported back pain was thought to be unrelated or worse drug seeking.
His journey has not gone well. The system shattered his faith. I can only hope the doctors involved have learned a lesson about courage, truth and learning to listen. Somehow, I just don’t think so.