Caregivers Month, Bowel Blockages and not Having all the Answers

This post gets a little more in the weeds about IBD as I provide an update on what has been happening with Lowell and his Crohn’s disease. I didn’t mean to have so much time in between these updates but looking back over the last several months and all the other things that have needed my time, energy and attention, it makes sense that I have not been able to sit and write it all down. In my head, the words and sentences have been floating around and recently I took the time to reflect on what has been going on and write it down.

November is National Family Caregivers Month and unlike other National Days or months that are designed to provide a fun diversion from life or let’s face it, marketing opportunities (Think Ranch Dressing , Grilled Cheese and Cream Puff days, just to name a few that popped up on my 30 second search) this month is important to acknowledge. There has been a shift over the past few years that has increased the visibility of caregivers and what we do, feel and think. This has helped to highlight the need for this large group of often unnoticed people to get more recognition and support. In Connecting to Cure’s monthly caregivers support group which can include parents of children of any age who have IBD and also spouses, partners, friends and family members, we provide a place for those of us in this role to share and be heard. It is comforting to be part of a group where we can talk freely about the experience of taking care of our loved one and not be judged. I have learned so much from others in our community and though this post is more specific to our families’ recent experiences, a piece where I interview caregivers is on the to do list. Perhaps while eating a grilled cheese (April 12th) or maybe some onion rings (June 22nd) I am going to get down to writing more about the people I know and the quiet work we do every day to support our person.

For more information and helpful resources for family caregivers, visit the Caregiver Action Network.

In the meantime, this is some of what I have been doing. I thank Lowell for allowing me to share this story with others so that people going through the sometimes complicated, often frustrating, and frequently isolating experience of living with a chronic illness, know that they are not alone.

What is a bowel obstruction?

Before we get to that, let’s review. My last post was about the beloved book The Idea of You-decidedly nothing to do with IBD or Lowell or chronic illness, but we all need breaks from the stuff we deal with, and this was a distraction for me that I felt compelled to write about.

The previous post was about the hemoglobin nightmare that basically resolved itself, which was what a top doctor we consulted with told us would likely happen. Well, he was right. We never figured out the cause of the drop in hemoglobin that went on for months. It was suspected to be from some kind of internal leak which was never found. Saying “I don’t know” is not what we usually hear from physicians but honestly, I appreciate when doctors show that they are people like us, don’t always have the answer. This was certainly the case with his hemoglobin. We trust our expert team of doctors, and I have learned over the years that they don’t know everything. At first I had to adjust to this truth because in part, we are sold the idea that doctors know it all. As I became more educated myself and developed relationships with our providers, I was able to allow for these gray areas and learn to accept this reality. That is not to say that I don’t often get frustrated or worry endlessly but having a more realistic view has helped me to better process each new challenge. For a refresh of that whole iron deficiency drama, click here.

The next phase of Lowell’s IBD activity included a bowel obstruction. What is a bowel obstruction? I guess it’s not that hard to figure out as I’m sure you can conjure up what it is by its self-explanatory name. Bowel refers to your small intestine and large intestines, the latter is otherwise known as your colon. Obstruction is a blockage. A stop. Can’t pass through. This is something that some people with IBD experience. People without IBD can have them for various reasons but don’t fear, it’s rare. For some people with small bowel disease meaning, they have Crohn’s disease that predominantly affects their small intestines (though Crohn’s can live anywhere in your digestive tract) they can have a type that causes strictures or narrowings. These strictures can contribute to a bowel obstruction or a partial bowel obstruction when they become so small that it is hard for food to pass through. Lowell has stricturing Crohn’s and because of these narrowings, over the years he had times when they felt like little, partial bowel obstructions. Until recently, he never had a full obstruction where nothing can get through. The full obstruction is when food and fluids get backed up and begin to cause problems-nausea, vomiting, cessation of bowel movements. As you can imagine bowel obstructions tend to lead to pain, the pain can be very intense. If you are already living with chronic pain from IBD, then sometimes it can be hard to determine what is going on, if something more severe is happening. This past May when this occurred, it was clear. Nothing was passing through, the pain ticked up quickly, we knew it was time to intervene.

Soft Food Diet

What are intestinal stents?

Lowell has two stents in his small bowel that he has had for a couple of years. Their function is to keep the above mentioned strictured areas open. We have a fantastic interventional GI who has placed such stents, and scoped Lowell several times. We basically only trust him to do these procedures, and he has a frustrating schedule as he is in high demand.

In May, due to the above-mentioned symptoms, we had no choice but to go to the Emergency Department (ED). It is the only way to get evaluated and figure out exactly what is going on. I am sure I have talked about the ED at Cedars several times in my posts but imagine it being packed, with people spilling over to outside the front door because the department is not big enough to begin with. All kinds of patients in need, including those with Covid, people who have gunshot wounds, people with unknown sicknesses, broken bones, and everything in between are there waiting to be paid attention too. We have figured out that if avoidable, go early in the morning on a regular weekday and the wait is shorter. At all costs, we avoid going any time after 2 or 3PM so the four-to-five-hour waits are hopefully a thing of the past.

This time it was a Friday not the best day in general because on the weekends not much happens. At the ED, it is determined that he indeed has a full bowel blockage, and he is admitted. The surgical team, the Interventional GI team and our regular GI are overseeing him. The obstruction is being caused by one of the stents becoming dislodged. This led to a five day stay at the hospital until the blockage was resolved. Depending on the severity of the situation, the treatment requires drainage of all the stuff collecting above the blocked area which means inserting a nasogastric (NG) tube to allow this to happen, and no food or drink. Sometimes bowel blockages can resolve on their own but since this one was determined to be caused by one of the stents being out of place, he had to have an endoscopy by someone from the Interventional GI team to go in and fix it. Luckily, our preferred doctor was available to do the procedure after a few days of the draining enough though the NG tube, and bowel rest.

It was Mother’s Day. Who really cares about these holidays for real? We have been in the hospital before on holidays. I remember a July 4th, and some days very close to Thanksgiving and Christmas, and one year I believe we were there on New Year’s Day. But as many of my friends and family know, I don’t love much about the holidays anyway (besides my love for the Macy’s Thanksgiving Day Parade) but being in the hospital on a holiday is just depressing. If you already feel left out of holidays for various reasons, these feelings are amplified by being in a hospital where there are some attempts so make it festive but it never quite lands.

Each hospital and ED visit brings an activation of the PTSD. I have spoken to the head of the Emergency Department a few times with my great ideas on how to possibly avoid triggering PTSD in patients that are frequent visitors of the ED. These are pie in the sky ideas, I know. Why not have a separate track for people who come in and basically know what might be going on? For people with IBD, it might be a flare, blockage, and hopefully not something worse. These things might require management of symptoms, maybe just some time in the ED to get relief, a little reset to go home and power through until things subside. Other times, the patient might need to be admitted but still, chronic visitors to the ED for a specific reason could be seen and treated in a more efficient way that would benefit not only the patient but could also help the ED run more smoothly.

A visit to the ED sometimes requires more testing such as a CT scan or x-ray which may show the cause of the escalation of symptoms but as we have learned over the years, such imaging can be deceiving, and they might not always show what Is really going on. There are times when imaging has shown something that then requires further testing usually an endoscopy/colonoscopy. What they see there does not always match up with the imaging. Also, vice versa. Sometimes imaging does not show, for example, inflammation that can only be seen when the scope is done. It is a complicated game of putting together the results of different tests, including labs, and the patient’s symptoms to decide if further testing is needed.

After the May full blockage, the stent was fixed. A few months later, we were back in the ED due to similar symptoms and Lowell was admitted so he could have better pain control, rest his bowel (no food or drink) and again do tests to see if the stent had moved. This was perhaps the most frustrating because we now try to avoid doing imaging as some release more radioactive material than others, and most are just unpleasant to do. Abdominal imagining of any kind, MRI’s, MRE’s CT scans, require drinking barium or other unpleasant liquid. For a person with digestive issues who is feeling nauseous, the idea of consuming such liquid is not only unappealing, but also often not possible. I have written about this before in my blogs, the many times I have been with Lowell in the basement or some other depressing place as he struggles to drink enough of the liquid, while I try to explain that he won’t be able to have it all, but it is okay because he has less bowel then most people! Hello, anyone, anyone listening? Usually no one cares.

At this hospital stay in August, we started with the least invasive, the abdominal ultrasound, which is being further studied, and practitioners are being trained to utilize it so that patients don’t have to be exposed to radiation, drink gross stuff, or have a scope. Its use is becoming more widespread, and radiologists are fine tuning how they read them. Unfortunately, this time, it did not provide enough information, so Lowell ended up having to do the CT scan but no gross liquid drinking required since he was blocked and not much could get through. The results of these tests showed……well it was unclear. Remember the two above mentioned stents, one of which had definitely become dislodged causing the May Blockage? Well, this time they could only see one stent, and where was the other one? No one knew. At some point one radiologist thought that one stent had moved inside the other stent. Huh? At that time, they wanted his inflammation to calm down before doing another endoscopy to figure it out. After a few days at the hospital, he started feel better. The pain improved and he could tolerate food and drink. We went home. Yay! It is always the best when you get to leave, and mostly because you can take a long, hot shower and then plop into your own bed. There are no lights, no beeping and no one coming in your room all night long. And you can sleep. The post hospital exhaustion is real, though, and the time it takes to settle back down has become more and more as the years have gone by. More tiredness, more time to recover, more time to start to feel normal again

When we left, we were told that the interventional GI needs to go in and fix such stents again within 4–6 weeks. I won’t bore you with all the tedious things that happened to try to schedule that because this is already exhausting and tedious. Two months later and we were at the hospital for said procedure. Meanwhile those two months were filled with anxiety, some trips to the ED and not knowing if the blockage was happening again.

The results of the procedure were partially positive, his small bowel looked good, there was not a lot of inflammation or new areas of concern. The results were also confusing. Surprise! The two stents were there in the areas they were supposed to be! No one has been able to provide an explanation of the images not matching up with the scope. The GI dilated a narrowed area near the stent. We are still confused and unclear as to how these mysterious stents may be contributing to these partial or full blockages he has had of late. Because despite things looking okay after this last procedure, he continues to have symptoms that come and go, related to this area of his bowel.

It never gets old seeing our name on the wall

In any case, this is what has been occupying this part of our lives for the past few months. Since August I have felt like I am under water slowly bobbing my head to the surface and coming up for air when I absolutely need to. Mostly it feels like I am being weighed down by the confluence of events that has marked these months. I am knee deep in transitions that are happening with Connecting to Cure, waist deep in helping my brother sell his condo and buy a new one so he can accommodate his need for 24-hour caregivers, and then up to my head in supporting Lowell as we both navigate his care.

Each day feels like it is just a beat away from becoming dismantled, if there is an escalation of any kind that requires a change in the days plan. Do we need to contact a doctor? Does he need a ride to his pain doctor when he can’t drive himself? Do we need to go to the ED? Do I have to cancel an appointment, postpone a meeting, change a plan with a friend, or my own self-care time that I had hoped to get that day? Whatever it is, things must shift. I would like to say I have become better at dealing with these upheavals, but I am not sure that I have. I know I can more easily let go of worry about what people are going to think, and I have been able to prioritize a bit better. I do what needs to be done, but I still feel disrupted and have a hard time getting back on the track. The decision fatigue, the scheduling and re-scheduling, the worry, it is all exhausting.

Thank you for listening to this and I hope that it portrays just a little about what caregiving in my situation is like. I have other things I write about. I would like to share more of that someday when I have time. There are also a lot other things to write about parenting a child with a chronic illness. But today, I am taking it slow. I had a matcha Latte. I went to see the beautiful, early winter sunset with my dog. I read for 20 minutes when I woke up before I looked at my phone. This is all in a day somedays, and it’s these little wins that I have grown to appreciate more and more.

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stacyjdylan

I write about caring for my son with Crohn's disease, feeding everyone in my house with food issues, patient advocacy, and my charity. www.connectingtocure.org