They started the new infusion drug, Stelara, the next day. However, Jay continued to decline throughout the week. His labs were not improving. he had a few more bloody bowel movements. At this point he was a shell of himself.
Hailey looked at him, thinking to herself. He was so pale, continuing to get thinner. He rarely talked, just laying in bed. He would slowly make his way to the bathroom as necessary. The pain was unrelenting, only the dilaudid gave him any sense of relief. Dr. Morelock said he could eat if he wanted, but his appetite was still nonexistent. He was surviving on a few saltine crackers a day if the nausea allowed.
Hailey was grateful for Will's almost constant presence. She could tell he was really concerned, but was trying to stay positive. Everyone on the team visited for brief periods, but they wanted to give Jay space to rest and hopefully recover.
On Wednesday morning Dr. Morelock was looking through his labs, his CRP had increased dramatically over night and his white count was starting to rise. He looked through Jay's emergency contact for Will's number.
Will was surprised to see a hospital number show up on his caller ID. "Hi, this is Will."
"Hey it's Jim Morelock, you have a few minutes to talk?"
"Sure…" he hesitated, his concern growing. "His labs look like crap this morning, CRP is through the roof and his white count is starting to increase. It could be a response to the steroids, but I'm not completely convinced. He's just not improving and we're pretty much out of options. I don't think we have time to keep trying new meds. I think it's time we start talking about surgery. I was hoping you could be there when I discuss it with him this morning. I think it would really help both Jay and Hailey."
Will knew this was coming, but he was still upset. "Yeah I can do that, when are you going to talk to them."
"I was hoping this morning. Are you available at ten? I should be done rounding by then."
"Yeah, I'm off today," Will replied.
"Thanks Will."
Will hung up and just sat there for a moment. He needed to be there to support Jay and Hailey but he felt like he was ambushing them.
Will arrived just before ten, making sure Jay was awake and symptom wise in a place where he could participate in the conversation they were about to have. Will sat his bed halfway up and started chatting, trying to keep it light.
Hailey could tell something was off, she tilted her head looking at Will suspiciously. He looked back at her and simply said, "Dr. Morelock will be here in a few minutes."Well that's not good if Will had a heads up.
As promised Dr. Morelock arrived promptly at ten. He took the extra chair and slid it over to the side of the bed, so he could talk to Jay and Hailey at eye level. Will was standing close by, leaning against the window sill in the small hospital room. He started, "Your labs have me concerned this morning, your CRP jumped quite a bit from yesterday and your white count is starting to creep up. Sometimes, white count can increase as a response to the steroids, but I'm hesitant to write it off.
Your symptoms are continuing to worsen. Unfortunately we're running out of medical options and I'm not sure you can afford to keep trying different combinations. I think it's time to start talking about surgery."
Neither Hailey nor Jay were necessarily surprised, but they still seemed taken aback.
Hailey was the first one to speak, "so what kind of surgery are we talking."
"Most likely a complete colectomy with an ileostomy. They would pull the end of your small intestine through your abdominal wall, your stool would collect in an external bag, which would need to be emptied several times a day. Some people have more output than others, it just depends on the person. Generally they leave the rectum in place so the small intestine can be attached in the future, but some people feel so much better they decide to keep the ostomy and avoid another surgery."
Jay quickly interjected, "No, no there's got to be something else."
Will spoke up, "Maybe there is Jay, but you just don't have time."
"What do you mean I don't have time?" Jay demanded. This was the reaction Will was expecting, but was not sure he would get because Jay was so sick.
Dr. Morelock interjected, "Your immune system is essentially eating away at your colon and can eventually cause a perforation, a hole basically that would leak stool into your abdominal cavity. This can cause a major, potentially lethal infection." That made Jay think, "Well can't we just wait until that happens and then remove it if we get to that point."
"Technically yes, but I wouldn't advise it. I get it Jay, this is a major surgery and would be a huge adjustment. You don't have to decide this today, we still have a little time. I think it's important we start having this conversation now, instead of when it's an emergency. I'm going to consult colorectal surgery and have them come assess you. They will give your their recommendation."
Jay had calmed down a bit, "Okay, fine," he said bluntly.
"It's not definite Jay, alright. I'll see you tomorrow."
Hailey wasn't sure how to react, she was relieved in a way by Jay's defiance, surprised he had any fight left in him. But, she ultimately wanted what was best for him and right now he might be standing in his own way. She couldn't blame him though, it would be a long recovery and like Dr. Morelock said a huge adjustment.
After Dr. Morelock left, they sat in silence for several minutes. Will ultimately broke the ice, "do you have questions?"
"How is this going to affect my life?"
"Well essentially you'll be cured. You will still most likely have your rectum, where ulcerative colitis can still occur, but a lot of people don't have any reoccurrence or if they do it is manageable. Having an ostomy is a big change. You'd have to learn how to change the bag and empty it, but those are not hard skills. It can take some trial and error to find the right fit, but there are nurses that specialize in ostomy care to help. Leaks will happen occasionally but not all the time. You'll learn to deal with them and be prepared."
"But I can still be a detective right?"
"Yes, of course. It's major abdominal surgery, they have to cut through a large portion of your abdominal muscles . It will probably be a couple months before you're back at work , maybe an additional month before you're back in the field. You've lost a lot of your strength in the last few weeks already, so that's something to keep in mind in terms of recovery."
"What would you do," Hailey asked.
"I would get the surgery. Your colitis has been aggressive from the beginning. Dr. Morelock is one of the best and he still wasn't able to find a cocktail of meds to get you in remission. Even if you miraculously get better, in the next few days, we might very well still end up here in the future. While patients don't often end up here so quickly, it's not unheard of, just bad luck really." He continued, "if your colon perforates, you could go septic, which could kill you. Not to mention this type of chronic inflammation in your colon, can very much cause colon cancer."
"I'll think about it, Let me try to get some rest." Jay turned over trying to avoid any further conversation.
Will stayed til the afternoon, deciding to wait until the colorectal surgeon came.
Dr. Patel was a small woman, but exuded confidence and competence. She softly knocked on the door before entering. Jay was sitting halfway up in bed, cold cloth covering his eyes, clutching an emesis bag, while waiting for the zofran to kick in.
"Hi, Mr. Halstead I'm Dr. Patel, the colorectal surgeon. Who do we have here with you?"
Jay removed the cloth from his face. "Please, Jay is fine. This is my wife, Hailey and my brother, Will."
"Ahhh the ER doctor." Will nodded and gave her a small smile.
"I've been looking through your chart, quite the case of colitis you've got. From what I can see you've been having 12-15 bowel movements a day, sometimes bloody, several episodes of vomiting a day.
"Sounds right."
"Severe abdominal pain, lack of appetite."
"Yup," Jay replied flatly.
"Your labs are quite concerning this morning. Inflammatory markers, already very high, increased pretty dramatically overnight, white count is slowly increasing. I'd have to agree with Dr. Morelock I think that colon needs to come out."
"I know, I just want to give the meds a little longer to work," Jay responded. She sat down next to him, looking at him with a kind expression. "I'm afraid if we wait too long you'll go septic and we'll have to do it emergently. Not only will you be recovering from major surgery, but you'll be fighting off a serious infection as well." She continued, "it doesn't have to happen today, but I think it should try to plan for it before the weekend" She could sense his resistance and his family's hesitation. They were clearly trying to let him lead the way.
"How about we go over the surgery? Give you a better idea of what to expect."
He nodded.
"So I'd recommend a complete colectomy, with ileostomy creation. We would leave your rectum in place, unless we see evidence of severe disease. This way it gives you the option of reversing the ostomy and creating a J pouch, basically an artificial colon from your small intestines. Some people are very eager to get rid of their ostomy, while others decide to make it permanent. If you decide against a J pouch, we usually recommend removal of the rectum after a few years with the ostomy."
She paused waiting for him to ask some questions, but he blankly stared back at her. "We make a large incision down the centre of you abdomen so we can cut through the abdominal wall. We will remove the colon and suture the top of the rectum closed. We then make another incision on one side of your abdomen in order to pull through the end of your small intestine creating a stoma. An ostomy appliance is placed around the stoma to collect stool."
"What about complications," Jay asked.
"Of course, like any surgery excessive bleeding, blood clots and infection can occur. There is a risk of perforating the small intestine that can lead to serious infection. With any abdominal surgery adhesions, scar tissue essentially, can form which can cause a bowel obstruction. Sometimes surgery is necessary to remove these adhesions. Some people have very high output with an ostomy which can allow them to become dehydrated very easily. This generally depends on the type of ostomy and usually affects people with Crohn's more than Ulcerative Colitis."
Hailey asked, "What would recovery look like right after surgery?"
"After surgery you'll be transferred to either the ICU or a surgical step-down floor depending on your condition. You'll have an NG tube, 1 or 2 abdominal drains, and a Foley catheter. All of which will be placed in surgery. Pain control is very important. We typically prescribe a PCA, which gives you a small amount of IV medication each hour and you can press the button for additional doses if needed. We like to get you up and moving quickly to encourage the bowel to start functioning again and prevent blood clots. The urinary catheter usually comes out after a few days and we leave the NG tube in until the ostomy starts producing output. Your stomach will still be producing bile but will unable to pass through your intestines until the stoma starts working. The NG tube is placed to gentle suction to avoid nausea and vomiting. The drains are a bit more variable, but I'd say usually between seven and 10 days.
"How long will I have to stay?"
"Ten to fourteen days baring any complications. I know this is a lot of information, I'd like for an ostomy nurse to come by. She or he will be able to show you the different types of ostomy appliances themselves, give you some information about changing the appliance, and general stoma care. They can also show you where an ostomy would potentially be placed, so you can visualise what it will look like. I feel like it really helps with the adjustment if you have some familiarity with things before surgery."
"Okay," Jay agreed.
"Alright then, I'll be by tomorrow." She waived before leaving.
Hailey said, "I like her."
"She's well respected. Very good, you know have a lower risk of complications with a female surgeon according to research."
"Is that supposed to make me feel better," Jay snapped back at Will.
"Jay," Hailey scolded him firmly.
"I know, I'm sorry. It's just overwhelming. I knew it was a possibility but I didn't think it would happen to me."
"It's okay, I get it Jay. I'm gonna head out, give you some time to think about things. Call me if you need anything."
The ostomy nurse came by shortly after Will left. She showed Jay the ostomy appliances, they watched a video about how to change it, and discussed proper stoma care. They talked about potential lifestyle changes. She suggested an ostomy belt, a protective band that Jay could wear around his abdomen to help keep the appliance in place with his high activity levels and showed him where the ostomy would be. He felt much better after her visit but was still understandably hesitant.
After she left he told Hailey, "I'm gonna do it, I just need more time to come to terms with it, okay. I know I keep saying this but I'm just not ready."
"I know, it's a huge change, No one expects you to make a decision right away. I just want you to be able to make that decision and not have your body make it for you because we waited too long."
"You know I love you right," he replied.
"Yes Jay, I know you love me. Now get some rest, I can see you're exhausted with everyone in and out all day."