Home, but Not Home Free

Whenever there's a blockage the doctors like to wait until you start passing gas or having bowel movements before doing a clamping test and letting you eat again. On Monday, after four days of no progress, Karen asked for a suppository - hoping to start things from the other end. We were told it doesn't work that way, and any stool passed like this wouldn't count as it would have been trapped on the other side of the blockage. We insisted and they let us try. The suppository gave her diarrhea - this was Monday night. But the next morning she had more diarrhea. At this point no one could say if it was more of the same, or if things had begun to make their way through past the blockage.

We came in on Friday, so by Tuesday Karen hadn't had anything of sustenance for five days. Combine this with the liquid diet she was on for two days before we came in, and she hadn't eaten much in over a week. She decided she was going to try and talk the doctor into a clamping trial despite the doctor's insistence that her bowel movement didn't count. And almost as if the doctor knew what Karen was going to ask, she didn't stop by the entire day Tuesday. When evening came and Karen realized the doctor wouldn't be by, she was upset. I hadn't known she was waiting for the doctor to ask for a clamping trial, and told her all she had to do was ask the nurse to ask the doctor for her. The night time doctor must have been hesitant however. Karen was given an 8 hour clamping trial - our longest yet. She passed, and was allowed to start on clear fluids Wednesday morning.

By thursday they had advanced her to full fluids. But she seemed to keep getting uncomfortably bloated after a liquid based meal, so they stopped advancing her diet. Normally by Friday we would have been on soft foods, but even now she's on a liquid diet. For some reason I thought the only possible results were releasing Karen on solid foods with her bowel obstruction cleared, or releasing her with a venting tube so she can spend her last days comfortably at home. But today, Karen was sent home on liquids. I'm not sure why this possibility hadn't crossed our minds. I guess the doctors only ever really discuss best case and worst case scenarios.

Her intestines seem to have opened up enough to let liquid through, but not much more. The doctors are unsure if she will be able to eat solid foods again. We've been cautioned to go slowly. Karen decided she wanted to try some soft solid food for dinner, and had soup. Her stomach grew painful and she threw it back up. So we certainly aren't there yet. Actually, I feel this isn't much of an improvement over when we went in. I'm worried that with the NG tube trouble preventing her stomach from decompressing for the first few days of our stay, and the suppository causing a bowel movement, that we've moved too quickly this time around. That said, I'm not sure how much longer we should have waited - her arms are so thin now. I hopeful things will still resolve completely, but I fear this might be our new normal.

Tube Troubles

The NG tube has continued to complicate things this visit. It's gotten increasingly difficult to get it to drain. At one point on Saturday, our nurse spent over an hour trying to get it going again before Karen asked for a break so she could do a couple laps around the hall. The nurse was able to get it going again after Karen's walk, which made us wonder if it was somehow positional. Once it was going it was good for the rest of the day, but that evening, it starting having trouble again. Everytime it gets blocked Karen feels the pressure starting to build up and eventually pain. The night time nurse wasn't as successful as the previous at getting it going again, and ending up going in and out of her room throughout the night, but without success.

Finally, in the early hours of the morning the nurses got together and decided the tube might not be in far enough and pushed it in another 5 cm. They also contacted the doctor to get an order for an X-ray to check the placement. Pushing the NG tube further was rough on Karen, but it seemed to get it going. The official X-ray review came back a half an hour later and stated there was "a bend in the nasogastric tube towards the fundus of the stomach" and suggested it "be retracted approximately 5 cm to relieve this bend." To Karen's great frustration, they pulled it back to where it was before. It continued to work for roughly another hour before stopping again. They decided they wanted to put in yet a bigger NG tube. It was Sunday morning by now and the nurse from the day before was back; they had given her the task of putting in the larger tube. Karen tearfully declared that that was it, and she was going home. The nurse quickly said, "You shouldn't make a decision after not sleeping." She turned off the lights and both her and her helper left ran out of the room. They were gone so quickly it was like something from a cartoon or bad movie. Finally, Karen slept.

Karen's been having trouble sleeping since she came in. We only recently realized the side effect of stopping of one of her meds, gabapentin, was difficulty sleeping - along with irritability and anxiety. They don't let you take any pills when you have the NG tube in, but they have a liquid form of gabapentin they can put down the NG tube. We just have to wait half an hour for it to absorb. We had only recently started back on it, so I think this finally let Karen sleep restfully. You'd think they would have identified the meds you can't stop abruptly and make sure you get them. If I hadn't thought about it, she would just gone without. They go over all your meds when you're admitted into the hospital, so I'm not sure why there isn't some automated process to flag meds such as these.

Before we had gone into the hospital we had run across an article that stated Coca-Cola helped resolve a particular kind of bowel obstruction caused by food. (Here's the article I ran across, and here's the actual paper.) Sometimes just thinking about something you can't have makes you want it. Karen asked me to bring a Coca-Cola Life in to put in her personal refrigerator, so she could have it once they put her on a liquid diet. She really wanted that coke and told me if I were to open it for myself, she might take a sip. But with the nurses going in and out messing with the tube all the time, I figured we'd only get in trouble when they saw the soda coming out of her stomach, through the NG tube, and into the collection canister.

Karen managed to sleep for roughly 4 hours, and was in a much better mood when she woke. Karen's frustrations had mostly been with the night nurses. She got along well with the day nurse. Occasionally her and Karen would just sit and talk. After Karen mentioned how badly she was looking forward to the Coca-Cola, the nurse let her have it. Even though anything you drink when the NG tube is on suction will come right back out, she could have gotten in a lot of trouble for this small act of kindness. It bubbled up through the NG tube and sat in the canister bubbling. The nurse replaced the collection canister with a new one, but coke colored fluid kept coming up. It had mixed with the other fluids in her stomach and seemed to just keep coming up through the NG tube. In fact, the tube started working perfectly. It worked for a good 24 hours. There was only one more blockage. This time the nurse had found the manual for the NG tube and made notes. She flushed the larger part of the tube with water and the blue pigtail tube with a specific amount of air. (This is what they look like.) And that was the last of the trouble with the NG tube.

Obstruction Anniversary Visit to the Hospital

We're back in the hospital for another bowel obstruction. Our last visit for a bowel obstruction was almost exactly one year ago, January 10th of 2017. After reading last year's post, I can only assume they no longer have you drink the contrast before a CT scan. I can understand the potential issues in drinking something like that when you're already backed up, but it's disappointing to us because the contrast itself seems to have resolved blockages in the past. We've even joked about getting some to go - and between you and me, that was really more of a question everyone laughed at, than a joke.

Before all this started, Karen caught some kind of stomach bug. We don't think it was the flu because she never had much of a fever. We checked often but I don't believe we ever saw her temp go above 98.9°F. She did however have diarrhea. Taking imodium to control diarrhea has preceded blockages multiple times in the past; so this time we decided to just skip her usual bowel maintenance regimen. This has slowly grown over the years to accommodate the increasing amounts of opiate based pain medication. It includes senna, colace, bisacodyl, and if things start to slow down, lactulose. Even skipping all these laxatives, it took a week for things to calm down. To the best of our knowledge there was no time between the diarrhea and the constipation. Just one day things were moving too quickly, and the next she had no bowel movements.

She developed abdominal pain and bloating and we decided this may be the start of a bowel obstruction. So along with jumping full speed back into our regular laxatives, we switched to a liquid diet. That was the 9th. By the 10th the pain and bloating had gone away and we were pleased we had caught it in time. There had still been no bowel movements and by the 11th the symptoms started to return. Karen's pain level spiked later in the day on the 12th and we went into the ER. The hospital waiting room was packed, but I guess Karen gets VIP treatment now, as we quickly got a room. Shortly after, a CT scan confirmed it was a bowel obstruction.

Although we haven't forgotten in the least, one of the doctors wanted to remind us that Karen has a frozen abdomen and no surgery would be possible. (I explained it here last time.) Which means we basically just have to wait and see if it resolves on its own - and if not, they can place a permanent venting tube and send Karen home one last time. Our obstructions have always resolved on their own in the past, but it's a stressful situation. And any deviation from our past blockages makes me nervous.

Normally obstructions are accompanied by intense nausea, and while Karen did puke on the way in, it wasn't preceded or followed by any nausea. The pain was bad, but seemed to go away extremely fast after the NG tube went in. Perhaps her ever increasing fentanyl dosage helped mask some of that pain, but I can't explain the lack of nausea. This is also the first time we're constantly having trouble getting stomach fluid out of the NG tube. While in the ER, the initial NG tube was removed and replaced with a larger tube, but we're still having issues. It seems they have to flush the tube every hour or two. I worry the tube went in too far and it's just pressed up against the bottom of her stomach and that's why it can't suck anything out. Both the nurse and doctor felt the position was good; so what are the odds both of them got this wrong? I guess the other possibility is just her stomach is already empty due to our two day jump start of a liquid diet at home, but everyone thinks they'd see less distension if this were the case. This is important to get right, as part of what allows blockages to reverse is the lack of pressure upstream.