“Little Blockages” and Intestinal Ultrasounds + Sayings, Adages, and Truisms: Do they help us navigate the darkest storms?
The only way out is through.
You are only as happy as your unhappiest child.
The above sayings resonate with me the most. There are other statements, adages, mottos, truisms, mantras, axioms, proverbs, etc., that we might repeat or use to help us try to make sense of the world. Many of these are culturally accepted as reality, as truth, things we employ to find words for things that often have no words.
Many don’t serve me personally and sometimes make me downright angry.
What doesn’t kill you makes you stronger.
I know this has been true in my own life and the lives of my friends with whom we discuss deeply personal experiences and stories. However, we certainly are not thinking that during times when we feel like we are being killed or might die (speaking metaphorically here). Still, many times, when looking back, we can see the things we have learned, the growth we have made, how our lives are more meaningful, and how we understand more about ourselves.
What about the times when our strength feels questioned, and the challenges are ceaseless? When we might not get through to that place and be able to look back on it as something that changed us for the better? In those moments, we are entrenched in the thick of it, akin to a relentless game of whack-a-mole where the moles often emerge victorious.
In those deep holes of darkness moments, I have learned that the best thing to do is live there, not fight it, and keep moving. The toolbox of coping mechanisms, be it meditation, exercise, or simply indulging in a lazy weekend binge, becomes our lifeline. Some days, doing these things feels like an uphill battle, and that’s okay. Trying becomes the mantra and the only thing we can do. Gradually, the clouds shift, allowing a sliver of light to break through.
If there are some days, and I have been there, when you can’t even do any of the things that give you strength, that is okay, too. I may do deep breathing for a few minutes if I can’t sit through a whole meditation. I will stretch for 5 minutes, go for a short walk, or sit outside in the sun. The more I do this, even when it is the last fucking thing I want to do, eventually it isn’t as hard anymore. And this pattern repeats. That is okay too; keep going however you can.
As I turn my head to your side of the bed
Why are you awake, What’s on your mind?
To this awful news try not to hold on
The day will come, the sun will rise, and we’ll be fine-The Avett Brothers, Please Pardon Yourself.
This being said, and I have written about this before in my blog, but in case anyone needs to hear it again (I usually do), it is also okay not to do that shit sometimes when you just can’t!
Back to my sayings…
Everything happens for a reason.
This makes me want to smash something against a wall because Lowell was diagnosed with VEOIBD (Very Early Onset IBD) at age 2, and I am still searching for the “reason.” Yes, we have created something positive out of it, and so much growth has happened in our family, but you know what, I wish he didn’t get diagnosed with an aggressive, incurable chronic illness as a baby.
So far, you’ve survived 100% of your worst days.
I agree with this. It is true, but it doesn’t mean you have survived them without going through hell. Yet, it is a reminder that we are strong and does give me some comfort when looking back on all those sometimes unimaginably difficult days.
Whadda ya gonna do?
This phrase made famous by Tony Soprano-well sometimes that is the ONLY thing to say. And I wholly love it. Full stop. Enough said.
When you are coping with severe Inflammatory Bowel Disease (IBD), as a patient or a parent of a child with Crohn’s or colitis, there are no shortcuts and no easy answers. It’s often filled with uncertainties that stretch out like uncharted territories that have yet to be discovered. You don’t even know that there might be other things to discover. A flare can happen at any time, a surgery you didn’t expect, a complication that no one has seen before, etc.
Whatever it is that helps you or me, I fully support it. I caution against the “everything happens for a reason” idea and “make lemonade out of lemons” as it might make some people feel worse when they don’t feel positive or see anything good during a challenging time. These ways of thinking often make people feel shame or guilt as if they always have to present an upbeat picture. Our culture perpetuates this. Toxic positivity. It’s a thing. Not everything ends with a favorable resolution, but it is the norm for people to expect that in every situation you talk about or anything you go through, things have been resolved, and all is okay. Sometimes it’s not OK. Sometimes people ask, “Everything good?” instead of “How are you?” How can you answer that? It is already a setup for you to say, sure, yes, all good. It is not expected that one would say, well, actually, no, things are shitty!
To clarify, I am not against positivity. It can be helpful and has a place in our daily outlook. I spend a lot of time and energy going to concerts and traveling for concerts, and you know why? The community created at most music shows is incredibly powerful, joyful, and, yes, positive, which compels me to seek out these experiences. Listening to music and anticipating the concert are all things that make me feel more positive in general. Whatever it is for you, find it, do it, and don’t apologize for it.
IBD Update.
I started writing this update several months ago, but I have had less and less time for creative pursuits, especially this past year, so here it is.
This is about the “little blockages” (this is a name we made up for them) Lowell had been having for the past 18 months. We didn’t know what to call them, so we landed on “little blockages” because they are not complete blockages that he has had where you need to escalate treatment, probably go to the dreaded ED, be admitted, manage pain, possibly have an NG tube, not eat, and wait for it to clear.
These “little blockages” allow some food and liquid to pass through the narrowed area of the small bowel and don’t cause more serious symptoms like a full blockage can, where nothing is moving through.
After a while, Lowell began to recognize what was happening when the symptoms started and would try to treat them at home instead of going to the hospital. At home, he would not have food, only taking small sips of liquid to ensure he would not throw it up. He can do IV fluids at home via his Hickman Line and walk around to try to move the intestines in such a way that may allow passage again. Oh, the unpredictable nature of our intestines.
Eventually, these “little blockages” became a regular occurrence, almost weekly.
Why does this happen to Lowell?
Since he has had sections of his small bowel surgically removed (you can go back to some of my past blogs for all the gritty details) and he also has what is known as the stricturing Crohn’s phenotype, he tends to have a narrower passageway for food. His doctor describes it as the 405 Freeway. Say Lowell’s intestines are already narrower than most, like three lanes of freeway instead of five. Then, when his bowels constrict from food or they move and twist a bit, it is like traffic increasing, and now there is only one lane. It becomes hard for food to pass; everything slows down, thus the “little blockages.”
How do we know?
We spend a lot of time trying to decide if we should go to the ED or not. Maybe this is something different? Something worse? Something more serious? It is always a challenge to triage at home. When we do decide, along with his doctor, to go to the ED, we try to avoid CT scans as they impart the most radiation. He might have an x-ray, which can really only rule out if something worse is happening, and then based on symptoms (non-stop vomiting or severe pain) he may be admitted or go home and wait it out. As time went on, we usually chose the latter.
At Cedars-Sinai, they have started doing a specialized intestinal ultrasound that doctors have been specifically trained to do. The intestinal ultrasound is much less invasive than all the imaging that IBD patients usually have to endure, and there are no adverse effects. We went in one day so Lowell could get a baseline of what his bowel normally looks like. At that time, we could see his anastomosis (surgical connection point) and some mild inflammation, but there was no “little blockage.”
The following week, he again felt like he had a blockage, and we called to see if he could do another ultrasound. Luckily, it was during clinic hours, and we contacted the doctor. This time, the area appeared much more narrow; things were not passing through. It was somewhat reassuring to see a visual representation of what had been causing his turmoil.
How is this treated?
Stricturing Crohn’s is difficult to treat. No medicines specifically target this type, although patients on the available IBD meds can sometimes find relief. This article states that about 1/3 of people with Crohn’s will develop a stricture at some point.
Lowell’s gastroenterologist decided it was time for a double-balloon enteroscopy procedure. This specialized procedure would allow a look at whether Lowell’s intestinal stents, which had been placed a few years ago, must be readjusted or changed. It is not the most common thing for IBD patients to have intestinal stents, and they don’t work for everyone. For Lowell, they had been very helpful, and we were hopeful that with this procedure, the interventional gastroenterologist would be able to see if the current ones were still in the right place and if there was something he could do to reduce the frequent blockages. Well, yes! He was able to replace the stents, and since October 18th, 2023, he has not had a “little blockage.”
This is not just Lowell’s life; it’s our family’s. We all keep marching through the complex terrain of severe IBD. It continues without neat endings or easy resolutions. We don’t emerge from each challenge unscathed nor are we defeated. Instead, we face it head-on, navigating through the rough patches, sometimes questioning, “Why us?”, making sure to each take extra good care of ourselves, or sometimes just screaming into the abyss or shedding tears. Or laughing. Or eating Crank and Boom dairy-free ice cream (select the dairy-free ones). It is delicious!
As we each navigate individual challenges and face a world filled with relentless and seemingly insolvable conflicts, it is hard not to feel overwhelmed and unsure about how to move forward. The only thing to do is to keep going. I know others are doing the same, even if we are not talking about it. But I am here to talk about it if anyone wants to share, listen, cry or scream, reach out!
At Connecting to Cure, we have created a community of people to connect with who understand the daily challenges of IBD. We are only an email, text, or phone call away. The road ahead is not neatly paved, and we may always have to know where the nearest bathroom is, but the mantra remains the same: keep going.
Donate here if you want to Rock the Season and Roll with us to reach our end-year fundraising goal. We are decreasing the burden of Crohn’s and colitis on families, and your research dollars have created a more hopeful future for IBD patients, preventing much of what our family has endured.
