When your sick child isn’t a child: my adult daughter gets the diagnosis of Crohn’s disease

My daughter was diagnosed with Crohn’s disease last week.

This is a tough diagnosis to get. Crohn’s is a type of inflammatory bowel disease. There are lots of good treatments and reasons to be optimistic, but it is a disease that can bring pain and risk—and it is forever. There is no cure.

Michaela’s had stomach problems for years that have never been fully clear, despite various appointments and tests. Things had seemed better, although she still had vague complaints that came and went. At the end of her winter college break, she told me about some new symptoms. I thought about calling her pediatrician and the pediatric gastroenterologist she’d seen, but Michaela is 20 years old. It was time, I decided, to officially move her out of pediatric care and into adult care. With the help of writing colleague and All-Around Great Person Dr. Lori Tishler, she quickly got appointments with an internist and gastroenterologist at Brigham and Women’s Hospital, right near her college campus.

Do I go myself?, she texted me. You can do it, I told her. I will be there if you want, but you can get there yourself and do this, you are old enough.

I’ll do it myself.

I took her to the colonoscopy, but they took her in without me—it was so strange to be left behind in a waiting room, to be The Ride, not the one to hold her hand and hear everything before her, instead of her.

She went to the follow-up appointment herself—the colonoscopy had gone well, they saw something but we hoped it wasn’t anything. I was seeing patients when she sent me a text:

I have Crohns disease

I called her. It’s going to be okay, I told her. This is going to make your life more complicated, but there are lots of good treatments. She was starting to cry. Do you want to come home this weekend?, I asked, fighting back tears myself (we mothers are not allowed to cry in these situations). No, she said, I have plans.

“If she were younger, I would know how to be. I would take charge. But she’s an adult, so I can’t do these things.”

If she were younger, I would know how to be. I would take charge. I would talk with everyone involved, set up her appointments, be there for every single one, tell her what to do. But she’s an adult, so I can’t do these things. Nor should I; this is her disease, which she will be dealing with for the rest of her life. The sooner she learns to manage her health and her health care by herself, the better.

But she is my child. She will always be my child.

This is new territory for me, but it’s old territory for so many parents of children with chronic disease. I’ve been thinking about the patients I’ve transitioned to adult care, and understanding more than ever before how their parents felt. At some point, one has to let go and let them do it themselves—but this is different than handing them the keys to the car. This is about their health, their life. There is so much at stake.

Maybe it’s lucky, in a way, that Michaela got this diagnosis after moving out of pediatric care. There is less to hand off, less disentangling, no need to make new therapeutic relationships. There is less to navigate—although we still have navigating to do.

We talked on the phone; she hadn’t looked at the websites I’d sent her yet. She promised she would, and that she would get her medication from the pharmacy. We talked a little about Crohn’s; she sounded sad, but calm. Of all my children, Michaela is the one most capable of dealing with something like this. She is incredibly responsible, but more than that, she has always been the best at rolling with the punches, the best at finding joy and fun in small things. Over the years, I have learned so much from her.

I asked about her next follow-up appointment. I’d like to be there, I said.

I’d like you to be there, she said, and my eyes filled with tears.

I can’t say: I’m in charge. Do as I say.

I can say: I’ve got your back. Forever.

12 thoughts on “When your sick child isn’t a child: my adult daughter gets the diagnosis of Crohn’s disease

  1. Have your daughter check into Celiac Disease too. Inflamm Bowel Dis. 2005 Jul;11(7):662-666.

  2. I recently read some interesting information about using CP-1 (custom probiotics) to help with IBS. I hope her recovery is quick.

  3. I trully love this article because it I have a daughter in her 1st year @ college with sickle cell disease. I am trying to allow myself to let her manage her own health issues but still feel confused as what she can and can’t do. Your daughter is still going to need you no matter how old she gets.

  4. Crohns runs in my family.I have other things , Like Trans verse myilitis,H- pylorie,IBS,.. Here just in the last month or so I have been getting sicker and it has been coming out in my skin. I got a very bad yeast infection and don’t have insurance to go to the doctor. My daughter said I had white stuff on the sides of my mouth and she ask to look at my tongue. She said my tongue was white and she thought I had Candida. So I looked Candida up. WELL,,,,,,,, OH MY GOD!,,, When I looked it up,It said so many things and what I was suffering fybromyagia,, joint ,bone and muscle pain,, yeast causes MS ,crohns, and so on,,, I had gone to so many doctors and they would look at me like I was just plain crazy ,, for me telling them that I felt like an old lady and I have been suffering this crap for many years. Allergies to yeast is a bad thing. It can even damage your organs.
    I started looking up everything I could about yeast , Candida, foods a person can eat and not eat.Fermented foods, vineagar,soy sauce,mustard ,breads ,pastrys, prunes ,raisins, figs,, chips all and anything that has flour, milk, sugar.. Yeast thrives on sugar.
    I studied and decided I was going to fix myself , so I went to health food store and bought 300.00 worth of foods and things I could eat. Garbonzo beans are very healthy for you and clean intestines up.Helps heal the lining of intestines. Went to the regular store and bought meats , veggies things without yeast.. I have been eating this way for a month now…
    It is very hard not to eat the foods I have grown to love and enjoy most of my life. I am getting better,,, I’m not going to the bathroom and pooping myself to death 8or 9 sometimes more a day,, Now only 2 or 3 times now.. It was like I had the heaves .My stomach is not feeling sick with indigestine,.I’ve lost 4 inches off my waist,in 2 weeks…My skin doesn’t hurt as bad,,,
    I can’t believe how I am starting to feel.. Doctors are great but they don’t know everything I was taking pills that the doctor prescribed and I was even allergic to them…You have to try and help yourselves,, Look up Candida,, how to eat without yeast,, food you can and can’t eat,, My Aunt is very sick with Crohns but she will not help herself.. She drinks Pepsi and eats all the foods that make her sick..She looks old too.
    I am only writing this because of your story about your daughter.. It might help her to eat food without yeast.. Thank you, Vicki ,

  5. My almost 21yo daughter has been dealing with epilepsy since age 8. That coupled with her having had 2 epileptologists leave within the last 2 years, one of whom was with her for 10 years has made the letting go hard. I am encouraging her to find a new epi that she can relate to, that is caring, and has her best interests at heart. But, I would be lying if I didn’t say I felt ‘out of the loop’. As you say, I am not in charge anymore….I don’t make the decisions anymore. She is a very responsible, level-headed young woman…I stand in awe of how she has dealt with some bad blows over the years related with epilepsy’s effects. Letting go is hard though.

  6. My son was diagnosed when he was a teenager. It was really a relief of sorts to know what had been a nagging problem all of his life. He has been on a medication that has changed his life. No more pain. Thank goodness the testing caught up with our children so that they could receive help. But I know just what you mean about letting them take control of their own health care. I guess we never stop worrying as parents.

  7. So what if your adult child is completely dependant on you for everyone of life’s needs? And the CHB Drs say we don’t want to see him anymore, go back to your home state and find adult Drs for him? And it’s very scary, because he’s had the “best” and now that he’s an adult, it won’t be available? How in the world can you build a team of new people who are not in the same city let alone hospital? Not the place I expected us to be. Not the “perfect” care we want for our son..still very much our baby even at 25.

  8. I have a 24yr old daughter who was diagnosed at 13yrs old. I was there for her then and I am there for now. Going to her appointments and testing with her. She was symptom free for 10 yrs. She recently has had a flare and needed to find a new doctor. She treated at Childrens with Menno Verhave,MD. Wonderful man. I wish she could have stayed with him forever, but she is an adult now and must move on. She is presently treating in Providence with another great female only doctor. Good Luck to you & your daughter.

    Dr. McCarthy is an outstanding doctor and mom. She was my daughter’s pediatrician for 14 years. Well wishes to you and your daughter Dr. McCarthy!

  10. Thumbs up to Kimberley Mitchell and the way she has dealed with her daughter’s sickle cell disease. Great job Kimberley!

  11. My daughter has fibromyalgia. She was diagnosed two years ago. She has fought through 11th and 12th grade and varsity basketball. She fought while moving to another state for college. She fought when she had to move home because she was sick and was having trouble going to doctors without a car and not really knowing anyone. She has fought trying another school and then my mom died and she was devastated. Now, four years later, she is a junior in college and is moving home after just three weeks of school because she is yet again, to sick to go to classes consistently.

    She wants our support, she wants me to help her with doctors appts. and referrals. But she also is fiercely independent and this is killing her to move home.

    I want to help but I’m heartbroken over it all. She is so young. I’ve “got her back”, but I don’t know what to do back there.

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