It’s summer. Again. We are at Cedars. Again. Our hospital in Los Angeles, is our home away from home.
Last summer at the end of June in the middle of the night, my husband and I sat in the waiting room I am currently sitting in, while the surgeon re-did my son’s G-tube (feeding tube) surgery that had gone wrong the first time 2 days earlier, this being the the 2nd time my son had to have a surgery redone for what the surgeons’ (2 different surgeons) medical terminology was “we don’t know why this happened.” This year, I am here with my son because his pain had been escalating for the past few weeks, and after having a GI test called a Small Bowel Follow Through, it was determined that he has adhesions/partially obstructed/dilated bowel at his anastomosis’ which are the surgical connection points from his previous surgeries. The pain became too hard to manage at home, and the dehydration from lack of being able to keep down enough fluids due to the nausea and vomiting, finally prompted us to make the decision to be admitted the previous week. I say we because Lowell is the patient but the decision is often collective made by myself, my husband, and Lowell’s GI doctor.
Lowell is 18 now and transitioning to taking more responsibility for his own care and medical decisions. It was his choice to do the Small Bowel Follow Through when we were discussing which test would be best. The MRE and CT scan usually require contrast to be inserted though an IV during some part of the procedure and this he finds the most intolerable. I have not had such tests myself though I have had a few MRI’s and CT scans but never with contrast and apparently he dislikes the way it feels going into his body. The best test would have been the swallowed camera pill that takes pictures of one’s GI tract as it passes from esophagus, stomach, small bowel, large bowel then hopefully into the toilet, and takes pictures showing the whole digestive tract. Unlike the other tests, there is no radiation exposure but the risk of the camera getting stuck was too great as Lowell’s Crohn’s has often presented with strictures. If the camera gets stuck, the surgeon or an interventional GI needs to go get it out, and this was a risk we did not want to take at this time.
This whole “figuring out which test to do” process took a few months and during that time, his labs were mostly good, he graduated high school with the contingency plan to complete his senior year over the next several months, yet the pain continued and escalated.
Over those few months, we had been asking to return to the Stanford pain management program and he was offered a spot in June which we took, with plans to stay there for 2 or more weeks. The first week proved to be too hard for many reasons. The first being that the kindhearted accommodations that the Palo Alto Ronald McDonald house (RMH)offered us (and where we had previously stayed at in January and February), were less tolerable upon return. Our room was in the back of the house, next to a kitchen and the food smells, the dark starkness of the room, the broken TV, and maze of doors we had to navigate to find our room, were negatively affecting our intention to stay positive, while trying to fully engage with the benefits that this program offers. It was late that first night when we arrived so we went to sleep but we moved to a hotel the next day, as the Sheraton kindly slashed their usual silicon valley jacked up weeknight rate for the tech, start up, investor crowd that frequents it, and gave us an acceptable Lucille Packard Children’s Hospital rate. Lowell started back at the pool, physical therapy, pain management techniques, appointments and I packed up our RMH room, made a donation and said goodbye to Mickey D and their hospitality, probably for the last time.
Although Lowell was able to participate in the program with the same level of enthusiasm he had the first time, he had less energy, and the physician was concerned about his low weight (having lost weight since the G-tube was removed due to pain that we could not fix in March). It was hard to be away from home where Lowell is used to eating small meals throughout the day; a better system for keeping the pain at bay. Although we had our favorite Palo Alto restaurants to return to, his anxiety about keeping weight on meant that he often ate more than he normally would at lunch and dinner and thus the pain increased. We didn’t know yet that the areas near his surgical connections were narrowed, but we knew that the larger quantities of food mostly condensed into 2 meals a day, were making the pain worse.
Many of the patients and families I talk to report that they have some kind of pain when eating and they have all sorts of strategies to try to cope with it. Some don’t eat until later in the day which seems to help rev up their system so that food can be more easily digested, some use cannabis products to help with pain, stimulate appetite, and quell nausea. Some don’t eat very much and are malnourished and under weight. Some try to supplement with protein drinks or formulas. Some like Lowell, have had parts of their bowel removed so no matter how much they eat or drink, they don’t absorb enough calories or nutrients to gain enough weight.
The good news for Lowell is that although his weight is a struggle, he has grown at least 4 inches in less than a year. Yay Lowell! He is now almost 5” 6” but he weighs less than 100lbs. We are still waiting and planning the 100lb party.
Anyway, back to our week in mid June at Stanford. After leaving RMH and going back to the familiar routine, one night we both just looked at each other and as if we were synchronized swimmers, declared that we could not hack it this time. He wanted to be home spending time with his friends who will soon be leaving for college, and with his brother Jonah who is home from college. We couldn’t take the slow traffic lights, the app developers at every public space declaring their innovative idea to yet again mine our data in some new way that was surely going to make the world a better place. I wanted to be home in my own space and of course we missed our dog. We we made the decision to come home at the end of the first week, with a plan to see how the summer went and possibly enroll in a different pain management program, one for adults now that he is 18, sometime in the fall. The Stanford folks agreed with our decision.
Now that the idea of managing chronic pain has become more of a thing, as research and science has shed light on the factors that contribute to it, there are more options for intervention available. Thankfully the medical community is moving toward a more holistic approach to pain and embracing the fact that pain is not just “in your head”.
Another reason why we discontinued the Stanford program at that time was because they had offered us the spot in the program and we quickly made the decision to take it, but still back here in LA, he had not done any kind of GI test yet to see if we might find the cause for the escalating pain. We went back and forth with the GI doc about which test to do after swallowing the “fake” camera pill twice and getting an x ray, no one could really determine if it had successfully passed through his bowel. Unlike the real camera capsule, the fake one will dissolve if it gets stuck so it is often given to patients who have more of a stricturing type of IBD as a test to see if it is likely to get stuck.
Do I know a lot about the science, the terminology, the anatomy? I seem to know enough but I really often feel like I need to know more, to learn more, to understand more. Do these tests really provide reliable information? Are they necessary? All of our years of experience with them have provided different and sometimes conflicting answers to these questions. Sometimes the labs look “good”, meaning no red flags indicating inflammation, malnutrition or liver issues. But so many people have these seemingly good labs, but then a colonoscopy or endoscopy will show diffuse disease. I can’t say it enough, Inflammatory Bowel Diseases are very complex, each person is different and patients and their caregivers must hold a lot of information and keep track of a whole lot of intrinsically important details. Thus handing all this off to a newly minted 18-year-old adult with a medical record as thick as a set of encyclopedias and existing at many different medical institutions, is a process, it’s a marathon not a sprint and I am sure we are still in the first part of the race.
I digress. Summer. Cedars. GI Test. Surgical scar tissue and narrowed area of bowel causing pain and needing to be dilated. That is where we are.
Jonah sat with me the whole time during the procedure and for that matter, with Lowell and I back in his hospital room that whole day. My husband Sam was working.
The doctor has finished the procedure and he calls me back to tell me his findings. They are in complete contradiction to what the images saw-that is, he saw no narrowings to open up, no partial obstructions, no loops of dilated bowel. He was able to get his scope all the way through the bowel. He saw some active Crohn’s disease ulcers. (The imaging radiologist reported that he thought there was not any active Crohn’s) He said “those are old tests and can be reliable but they are hard to read, and not always accurate.” We had the best radiologist do the small bowel follow through procedure, a doctor who has seen Lowell’s intestines over several years so he had older imaging to compare it to. Lowell also had an abdominal ultrasound during the hospital stay and those results corroborated with the other imaging.
So what to make of this? The explanation for the pain made more sense if there were partial obstructions but doesn’t really make sense given the active disease which typically would not cause this much pain. But pain is pain and Lowell has many reasons why he bears this burden.
It is a month later and we are home. Lowell has returned to NG tube feeding (nasogastric tube, since he no longer has the G-tube button in his abdomen) which he inserts and removes 2 x a day and is mostly getting this formula, and not eating any other food in order to try to calm down the active inflammation.
People are doing things they do in the summer that mostly involves traveling and getting away from the normal stressors of life. LA is really hot, and the sun more brutal than ever.
I took nearly a week off all social media at the end of June. It was just an experiment to see how I would feel, what would come of it. I was not 100% off, as I had to check Facebook messenger (luckily they have that handy dandy messenger app on the phone that is supposedly spying on us) because there are people I communicate with solely that way. I had to post a few things for Connecting to Cure as our social media intern was moving on to other things and we are in the process of starting someone new.
I am still taking small breaks from social media because it mostly shows people doing their summer things, which is fine but so different from the reality of our summer, and not serving me well at the moment. No one is doing anything wrong by posting trips and summer fun, but my choice is to not constantly be reminded of it. Families are posting about taking their kids to college.
We will go away at the end of August as we have for the past few summers to Laguna for my birthday for a few days and that will be perfect for us.
It is a Crohn’s disease world and we are living in it for the time being. But just like the relentless sun of LA summer made markedly worse by climate change as I have observed over the last 27 years that I have resided here, at some time in November the temperatures might drop a couple of degrees, the sun will be less punishing and our chronic illness landscape will hopefully change too, for the better.
And remember, Rock the Night East in December. Tickets on Sale in September!
