summer "vacation" with crohn's

by Stacy Dylan

This is an excerpt from Stacy’s recent blog post, you can find the full blog post and others at medium.com/@stacyjdylan.

It’s summer. We are at Cedars Sinai Hospital in Los Angeles. It’s where we’ve been a lot this summer, and last summer, and many summers before that. My son, Lowell is now 18 years old and he was diagnosed with Crohn’s when he was 2 years old.

Last summer at the end of June in the middle of the night, my husband and I sat in the waiting room while the surgeon re-did my son’s G-tube (feeding tube), which had gone wrong the first time 2 days earlier. Now this was the 2nd time my son had to have a surgery redone for what two different surgeons claimed “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 collectively made by myself, my husband, and Lowell’s GI doctor.

We didn’t have a typical fun summer vacation, but here’s what we did and maybe you can relate:

1. We chose which test to take to treat my son’s pain

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 through 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.

2. We returned to a pain management program

We had asked 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. It was late that first night when we arrived so we went to sleep, but we moved to a hotel the next day.

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.

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. I wanted to be home in my own space and of course we missed our dog. 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.

3. My son returned to NG tube feeding

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 times a day and is mostly getting this formula, and not eating any other food in order to try to calm down the active inflammation.

4. We were grateful for my son’s growth

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.

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.

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. 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.

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your condition.

About Stacy Dylan

Stacy Dylan is the co-founder and President of Connecting to Cure. Stacy is passionate in her support of patients with chronic medical conditions. As an advocate for her teenage son Lowell, who was diagnosed with Crohn’s disease at the age of two, she saw the need to create a community for families, caregivers and individuals who face the challenges of coping with an Inflammatory Bowel Disease. Stacy received her BA in Art History from Hampshire College in 1989, where she met her husband Sam, with whom she has two sons. She received her MA in clinical psychology in 1995 and has practiced as a licensed marriage and family therapist. Stacy is also the Editor of IBD and Digestive Diseases: A Shared Blog. She writes about caring for her son Crohn's disease, feeding everyone in her house with food issues, patient advocacy, and her charity on her Medium page.

For more information on Connecting to Cure, please visit www.connectingtocure.org