Dr. Brita Lundberg sat down with Lisa Villiott, whose advocacy for her son is a shining example of the difference that patient accompaniment can make. We are so grateful to Lisa for sharing her son’s medical journey with ulcerative colitis and important takeaways.
Below are excerpts from our conversation together. This interview has been lightly edited for clarity.
Q: Lisa, thank you for taking the time to talk with me today. For starters–can you share a little bit about how this diagnosis came about, how old your son was at the time, and what that initial experience was like?
A: Sure. Jonathan was 13—in the spring of his 8th grade-–when he was diagnosed. We discovered it because he noticed blood in his stool. I called the doctor, and we went in right away – they were very efficient about it. My primary care doctor sent us to a Mass General pediatric GI doctor, and Jonathan got a colonoscopy within the week.
He was diagnosed with severe ulcerative colitis (UC). They explained to us that Crohn’s and UC, the GI diseases known as inflammatory bowel disease (IBD), are sort of cousins. Jonathan started right away on Remicade, which was our first biologic drug. He lasted a few months on Remicade and then he failed.
Q: And by failed you mean he got symptoms again?
A: He never entered remission from it. The Remicade controlled his UC for a little bit but as soon as he went off prednisone –the supplemental medicine he was also on – his symptoms started to flare up again. Even though his blood tests showed that he had the appropriate amount of medication in his system, he wasn’t responding to it. At that point, they consider that a “fail”.
We went off Remicade and from there went onto Entyvio. He responded to Entyvio for a little while, and was able to reduce his prednisone intake, but then again – after about five or six months he relapsed again. Then we tried Humira, but that didn’t work either.
Some of his flare ups were so bad that we ended up in the hospital a couple times.
One particular hospitalization I recall well was right as Jonathan was going into freshman year in high school, six months or so into his diagnosis. He had to miss the first few days of school. At that point, the doctors felt his flare ups were so bad they recommended surgery. This would consist of taking out his colon and then he would have what’s called a J-pouch. But the doctors said he might still need medications to control his UC and there was no guarantee the surgery would work.
We met with the surgeon. I don’t even know, to be honest with you, where or why at the time, but I was strongly opposed to the idea. It wasn’t even a year into the disease yet. He was so sick. He had dropped so much weight; he was continuously bleeding from his rectum, and by all rights I should have listened to them. What did I know? The hospital room was filled with doctors and residents explaining that my son needed the surgery, but my gut told me differently.
I looked over at Jonathan and for a moment it was just he and I in that room. “I don’t want the surgery mom,” he told me. That was a defining moment of trust between me and Jonathan.
“No, we’re not doing the surgery.” I told them. I got in a bit of a confrontation with the doctors because they were so adamant about it and yet I was adamant in opposing them.
“If we decide in the future that surgery is our best option I told them – will you deny me and my son care?” Well of course they wouldn’t.
So, against the doctor’s recommendation for surgery, we went on to the next drug and Jonathan was even approved for a clinical trial.
The importance of patient self-education
During the height of Jonathan’s illness, my husband and I must have read 15 books on Crohn’s and colitis. I joined every group I could find – I’m more of a joiner – I need to be physically there. Reading books is great, but I needed to be a part of this community. I need to talk to other people who are in it, who experience it, so I joined the Crohn’s and Colitis Foundation. I joined the Facebook groups and a mom’s group. I learned so much from them – and of course, from reading, but so much more through being a part of the groups.
The importance of diet and nutrition
I started completely altering Jonathan’s diet. It’s interesting that no doctor would give us a nutrition plan when we asked, or let us know what type of foods we should stay away from, or what type they would recommend to try. And we have great doctors, at one of the best hospitals, and yet not one would speak to any nutrition advice on the disease.
In fact, each doctor would say he can eat whatever he wants. That boggled my mind. First, no one can really eat whatever they want and not suffer a consequence from it, so how can a disease that affects the lining of your intestinal walls not have food restrictions? How could he honestly eat whatever he wanted? So, I did my own research, and we did an elimination diet with him. We started from ground zero. We researched supplements, we purchased specific probiotics thought to help in IBD. We used foods that are thought to have anti-inflammatory properties, like collagen, bone broth, ginger and turmeric. Everything I made was gluten free, dairy free and sugar free.
After a long while, we started getting a grip on his colitis. I truly believe more than anything, the years and efforts in finding the right cocktail of supplements, whole foods, proper nutrients that we discovered worked for him, exercise and rest are what helped Jonathan’s illness. That and of course a strong will and continuous advocating. So, we figured it out. It’s trial and error. Which I think should be what the doctors tell you. I realize now, they can’t generalize and recommend one nutrition plan because every person’s biological makeup is different. You really need to understand your individual disease.
Jonathan learned to avoid the foods he can’t tolerate. Somebody once said to Jonathan, “Oh, you can have a cookie. It won’t kill you.”
“That’s like telling me I can have a cigarette and I’m fine.” Jonathan said. “No. I’m not having that cookie.” He’s adamant about it too.
After about three and a half years of “managing” Jonathan’s IBD, we were faced with another medical challenge.
A second serious diagnosis
After the clinical trial failed, Jonathan was a candidate for another new drug called Xeljanz. Right around December of his junior year in high school, he went to New Hampshire with my husband to work on our lake house – which is a very special place for Jonathan and the whole family. This is when he had his first – we’ll call it “episode.” We didn’t know what it was. My husband called frantically explaining that Jonathan had passed out and was unresponsive. So he went to the hospital; the doctors called it a vasovagal episode.
At the time, my husband was convinced Xeljanz was the culprit because the “episode” coincided with when he started the drug. As I did with all medications, I read all 40+ pages of the medication insert prescribing information, which lists every side effect, and there wasn’t anything that indicated a side effect of seizures or brain fog or anything like that type of “episode.”
We realized then that these episodes – which later we found out were seizures – happened only at night. I started recording them and we discovered they typically happened between the hours of 4am and 7am. We learned that Jonathan was experiencing nocturnal grand mal seizures.
The pediatric neurologist we saw started him on Keppra. That didn’t go well. Jonathan was like a druggie, he couldn’t function. So then we started a slow-release formula of Keppra, but he was still having breakthrough seizures, so that didn’t really work well either.
With the approval of our doctors, we decided to take him off of all drugs for a trial period. We needed to be sure the Xeljanz wasn’t the culprit and felt like we needed to get to the root of the problem.
Jonathan was seizing regularly and it was very scary. We started a drug called lacosamide, and that seemed to work.
Again, I did a lot of my own research, and I discovered that there are cases of severe Crohn’s and colitis patients who suffer from seizures. There is a direct nerve connection from the gut to the brain. I talked to my neurology team about that, and luckily, they didn’t shut me down; although they weren’t totally on board, at least they humored me and listened.
Later, our neurologists would agree that new research showed a direct correlation between IBD and seizure disorders.
Thankfully, Jonathan has been seizure free now for a couple years and is doing phenomenally well. I think what ended up happening more than anything, especially during the time of his seizures, was that Jonathan – who originally resisted his disease, now grabbed hold. As a young teenager, at 13, 14, 15, he just didn’t want to be sick. He just wanted us to fix it – and how I wished I could. He didn’t want to get behind the wheel of his disease. He was young. He wanted his cheeseburgers and French fries, and why shouldn’t he? But finally, after things with the seizures got controlled, he took complete control of everything. He is meticulous now about what he eats, how he works out, how much sleep he gets, there’s no alcohol, there’s no sugar, and thank god he’s doing really well.
He is still on his seizure medicine. If you’re seizure free for up to two years, you can go off the medications, but we didn’t. Right up to the summer before freshman year in college, we really weren’t sure if he was going to be able to go away. Academically, Jonathan does very well, but I just kept thinking, how am I going to send him away with all these diseases? What if he has a seizure? I couldn’t wrap my head around it. But we did manage it, he did go, and he’s in his sophomore year, excelling.
He’s the most absolutely – I want to cry thinking of him–the most amazing kid. He’s my hero for sure. I like to believe that I helped with that, because I fought relentlessly for him. With everything, whether it was insurance companies that wouldn’t cover the thousands of dollars’ worth of infusions, the doctors, disabilities offices– I just fought, we did what we needed to do.
There were times I was on the phone – and I wish I were lying, but there were days when my husband, Eric, would leave for work and six hours later I’d still be on the phone with an insurance company, trying to get the drug he needed, or with a doctor trying to get him into an appointment. I’d be exhausted and I’d think to myself, how the hell does an elderly person do this? How does somebody do this who has to go to work all day or that simply doesn’t have the time or resources to do this? And that’s why always – any time I’m in a position where I can help somebody, I want to. I’m grateful that I was [fortunate to have the flexibility I needed to] keep fighting. I did take a leave of absence from work just to care for Jonathan, and I was so fortunate to be able to do that. I know that.
I’m grateful for my support system, my family, my friends, my husband, my son Matthew, who in so many ways is a savior for Jonathan. But mostly, I’m so grateful for Jonathan, for his tenacious attitude and relentless fight.
Strategies at school and for sports
There were flare ups that put Jonathan in the hospital and then there were flare ups that he learned to manage. He had many accidents. We put together what we called emergency kits. They consisted of a change of clothes and wipes. My older son, Matthew, and Jonathan are a year apart in school. Matthew would have an emergency kit in his bag, Jonathan would have an emergency kit in his bag, and the nurse would have an emergency kit in her office. Freshman year, Jonathan had accidents probably three times a week. Which would mean he would not make it to the bathroom. And I would tell him to throw away his clothes and use the emergency kit. He would take care of things then he would go back to class. He refused to come home.
| “We developed our own tools so he could do everything that he wanted to do.” |
Jonathan is a natural athlete. He would also have emergency kits at the hockey rinks, in his golf bag, or wherever he played a sport. When he would have accidents on the ice, he would just skate off the ice, get himself cleaned up and skate back on and continue. That’s just what he did.
Brita: What a kid.
Lisa: Oh, he’s pretty amazing. Yeah. He’s unbelievable.
Brita: Thank you so much for sharing that truly moving story of your son, Lisa. It’s interesting that you evolved from the major focus being the colitis to the major focus being the seizures. It sounds like he’s in remission from his UC.
Lisa: He’s been in remission for his colitis for about two years as well as seizure free for two years, which is his longest remission. I often think: what if I let them take his colon out at age 13? He’s going to turn 20 June 27th, and he’s doing great, colon intact.
I think it’s a combination of the supplements that we found, his diet and his lifestyle. He is still on Vimpat for his seizures and now mesalamine for his UC. He’s on the maintenance dose. He is meticulous about managing his disease.
The psychological cost
Lisa: I would never want to discount what a physical ailment can do to the mind. For a long time I was angry at the doctors. I needed someone to take it out on. Why was this happening to him? But now I’m not angry. I have a great medical team, and I think they do the best that they can with what they have.
Unfortunately, our medical system is often a broken one, and I think that they’re up against things that they may often not be able to control. Our doctors often had to jump through hoops to prescribe the medications that they knew he needed only to discover insurance wouldn’t cover them. It’s not a perfect system and no human is perfect – they only know what they know. And many times, I think they are trained to treat the problem, but not necessarily get to the root of it. Oftentimes, it seemed, the doctors could tell us what it’s not but not necessarily what it is.
We’ve learned the dance together. We share a respectful place of listening and conversation. It has become a bit of a running joke – Jonathan’s visits would start with; “Ok, Mrs. Viliott, what do you think we should do?” They knew I would educate myself on every medication. I’d know what the starting dose was, I’d know what the remission dose was, I’d know how Jonathan reacted to it. They grew to really respect that.
This is an interesting story. During one hospital visit, a doctor who we hadn’t seen yet came in to evaluate Jonathan. He questioned me about doses and once again brought up surgery. He didn’t have what you call a “bedside manner.” I finally said to him, “I have to ask you a question. You just came into my son’s hospital room and I just have to ask you, how many patients have you seen on your rounds today?”
He looked at me blankly.
I repeated, “I’m just asking how many patients do you have today? Five? Six? Seven?”
He still didn’t answer me.
I continued; “Ask me how many patients I have seen today. One. He’s my one… So shame on me if I don’t respect the knowledge that you have to offer me, but shame on you for not respecting the fact that I’m his, and he is mine. He’s my only. And for you not to think that I know my patient and may have more insight than you about his care.” After that, we came to an understanding.
Q: I wonder what message you have for parents facing colitis or another serious medical illness in their kids? Sometimes the lessons that we learn from one illness can apply to others.
| Your greatest resource is knowledge. |
A: I have four suggestions for parents:
- Seek knowledge. I’d say your greatest resource is knowledge. And appropriate knowledge, you know, because we can all go down the Google rabbit hole. I used WebMD a lot, I used medical journals a lot, I was specific about where I gained my knowledge because I wanted correct information
| Ask questions, ask questions, ask questions. |
1. Ask questions. Once you gain the knowledge, ask questions–lots of questions. Don’t be afraid to ask your doctor to repeat something until you understand and then ask more questions. Slow the appointment down to your pace. Stay calm and don’t leave until your questions are answered.
| “I have to slow this down, and I have to make them understand that – this is my priority and they have to answer my questions.” |
I’d have a notebook or my phone, with every single thing I learned, every question that I had, and then the answers. I would ask for time to write down all the answers. I would prompt them to repeat their answers too, so I got the correct information. Then I would take that and do research. And often, if I uncovered more questions or found information I thought was pertinent, I would send a note through the portal.
Also: I kept meticulous records. From what kind of stool he had, how many times a day he had it, urgency, anything that helped, and things that didn’t.
2. Think about therapy.
My son finally agreed to therapy after his seizures started, and the family had a few sessions together as well. It did help us. It not only taught us to listen, it taught us how to speak to each other so that the other person could receive it. We were emotional a lot – managing his illness brought many hard moments where there wasn’t listening. He was mad at me, I was mad at him, that’s just normal, but we learned how to listen to each other. And I think that’s really important, to be able to talk openly – as a caregiver to the person you’re caring for, whether it be mother-child, or any other caregiver situation, whoever it is, just have an open dialogue.
3. Give yourself grace.
Emotions are high during health struggles, especially when it comes to your children and trying to advocate for them. So, give yourself grace for those emotional moments. Take a deep breath and try to compartmentalize. Try switching the mom hat for the advocate or caregiver hat when you need it. I learned to do that, to switch those hats, and to really try to check the emotion and use the knowledge, use everything that I learned through my readings, through the medical team I had and through my observations of my son. It’s work, it was my job, but I think it was worth it.
Brita: It clearly was for you and your son. What a success story. And I think that you’ve pinpointed exactly one of the most difficult places for parents and actually for patients in general, but with our kids it’s sort of at a different level of emotion, but the emotional bit can stand in the way. And your ability to stand back and say, “Ok, disconnect here and advocate” – that’s really critical.
Is there anything else that you’d like to share?
Lisa: I think we all need to allow our moments of grief or our moments of mourning – In many ways, I mourned the child lost to this disease. The parts of Jonathan that had to change. In many ways, you’re no longer the person you were before this disease, and neither is the patient, and that’s okay. Allow for those changes and be unapologetic about it. It’s not up to you to make somebody else feel better about your position. Family and loved ones are invaluable, but it’s not up to you to make them feel better about the disease. They are concerned but you need to take all your energy to be the caregiver to not only who you are caring for, but for yourself. Once the mourning passes, rejoice in the strength of having prevailed. And find things that bring you peace and solace and allow for therapeutic moments of relief. I think I told you; I’ve written a memoir on Jonathan, because that was therapy for me.
| In many many ways, you’re no longer the person you were before that disease. And neither is the patient. |
Q: Is there anything else you would like to add?
A: I’d like to mention the Crohn’s and Colitis Foundation and how helpful it can be for families. I got involved with the foundation and it helped me tremendously. I work with them to advocate for the disease and help to raise awareness and funds for research. In fact we’ll take part in the Take Steps walk on June 7th Lisa M Viliott – Fundraising For Crohn’s & Colitis Foundation. It’s the biggest walk Crohn’s and Colitis does. The first time Jonathan and I did it, it was such an emotional experience, we cried. You’re in the presence of a community of people who understand what you have been through.
We also developed a new patient packet, for anyone who is newly diagnosed. Our goal is to help people know that there is help available to them.
I would also say to people who are going through this, to find that tribe, to find that community because I think it’s invaluable.
Brita: That’s fantastic. I will share those resources. I do know families with family members with Crohn’s and ulcerative colitis who could benefit from that. As one mom once said to me about the Type 1 Diabetes College Network, “This is a community we never wanted to be part of, but we’re thankful for daily.”
Lisa: Right. I’m so grateful that you wanted to talk to me.
Brita: Thank you, Lisa, for taking the time to meet with me and for making our readers aware of all the different dimensions of advocating for a child with a serious illness.
I want to close by saying that I have so much admiration for all of the advocacy that you did for your son. You were such a star for him, his hero. You helped him make difficult decisions, you worked as a team. I especially appreciate your emphasis on knowledge. A lot of patients think, “Oh well, I don’t want to know because I might come across some scary fact.”
Lisa: And you will. But not knowing doesn’t help.
********
The takeaway:
- Knowledge is power
- Don’t be afraid to ask questions
- Take the time you need to understand the clinician’s answers
- Know that every medical illness comes with mental health challenges that also need to be addressed.
More from Lisa Villiott:
If you enjoyed this interview, you can read Lisa Villiott’s story of her son’s journey as a new Crohn’s patient, The Blue Vinyl Chair, on the Crohn’s and Colitis Foundation website. Donations to the foundation are welcome and can be made here.
Medical Disclaimer:
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing and symptom management of all medical concerns.
