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Patient Profile: Jessica Adani

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Jessica Adani, 37, has an active case of Crohn’s disease for a dozen years. She is director of the Annual Fund and leadership giving at the Fenn School in Concord, MA. She lives in Wayland, MA, with her husband, Jon, and their three -year-old son, Gavin. Adani is a member of the CIRCLE program’s patient advisory board.

The diagnosis

I was diagnosed in 2002. It was just before my 25th birthday. I had been a cheerleader and had a lot of wrist injuries from tumbling and stunting. I was recovering from my third wrist surgery. I am allergic to anesthesia, so I thought, ‘I’m still sick from the anesthesia.’ At my one-month checkup, the doctor said to me—and my mom was with me—“Your wrist looks great, but you look like —-.” And you don’t cuss in front of my mother, so that was funny. So I started to describe the GI symptoms—I couldn’t keep food down, I was exhausted, I was running to the bathroom all the time, I had lost 10 pounds. And he just looked at me and said, “Sounds like you have Crohn’s disease or something. Go see a gastroenterologist.” Overall, I’d say it took about nine months to really get the right idea about the extent of the illness and that it was Crohn’s and not colitis.

Advice to new patients: Slow down

I was working as a fundraiser at The Park School in Brookline and coaching an all-star cheer squad when I got sick. There were days at school that I would go to my car in the parking lot and just fall asleep for an hour because I was so tired. Part of it is because I didn’t realize I was as sick as I was. You know, they say, “You have this disease,” so you’re like, “Okay, this is what it is, so I’m just going to deal with it.” My attitude was I’m not going to let it slow me down. But I often would do that to my detriment, because when I would get flares, they would be really, really bad flares, and I would wear myself out. Now I would tell newly diagnosed patients to slow down. Be aware of the disease. If you don’t feel well, don’t push yourself too much.

 

“The world doesn’t stop because you don’t feel well, so embrace the good parts, focus on those and go with it!”

Hospitalized for the first time

I was hospitalized for about two weeks, nine months after I was diagnosed. I had massive internal bleeding. That was reason for the two-week stay—I had to wait for the bleeding to stop. I was also in pain and, you know, had all the usual symptoms. It was during that hospitalization that they started me on high doses of steroids and Imuran.

STEROID SIDE EFFECTS

I came out of there looking like Two-Ton Tessie and the Pillsbury Dough Boy. Massive. That was the hardest part, was the weight gain. And I had to stay on steroids. If I went below 30 milligrams of prednisone, I would immediately flare. I couldn’t taper down. I was on 30 milligrams and higher for about 18 months. I had every side effect in the book. I had extreme puffiness. I was a crazy lunatic at night, couldn’t sleep, and then was exhausted during the day. I was ravenously hungry. I had some muscle atrophy, so I had a really hard time, like, walking up stairs. The steroids and IV antibiotics—they fried all my hair, so I had to cut my hair really, really short, and a lot of it fell out. I finally got off the prednisone when the Remicade started to work. I think there was about three or four months of overlap when I was taking both.

Surgery: ‘Why did I wait so long?’

I think one of the best decisions I made was to have surgery in 2005. It’s one of those things. You think, “I don’t want surgery, I don’t want surgery,” and then you have the surgery and you’re like, “Why did I wait so long?” The surgeon removed a small part of my small intestine that contained scar tissue that was causing strictures and lots of pain. I healed nicely.

MY WEDDING: EVERY GIRL’S DREAM

I started taking Humira after the surgery. If I started to flare, they would put me on Entocort, a sustained-release steroid that has fewer side effects. I had a pretty good two- to three-year period after that. I was never in remission but that was definitely the closest I was ever going to get. I got married to Jon on May 27, 2007. It was a beautiful, black-tie evening wedding. Every girl’s dream. I felt great. The best part was I got my gown at Filene Basement’s Running of the Brides!

Esophageal inflammation: ‘Worst pain of my life’

I got CMV [cytomegalovirus] from being immunosuppressed about a year after my wedding. I had to stop taking Humira and another immunosuppressant, Imuran, because the only way to get rid the virus was not to be immunosuppressed. About six months later I developed oral Crohn’s, which is very, very rare. It started in my gums and tongue and then it started to affect my esophagus. My gut was actually somewhat okay—minor symptoms, but nothing crazy. But then the inflammation in my esophagus started getting really, really bad. I was using a steroid inhaler like an asthma inhaler, and swallowing it so I would get some steroid into my esophagus. I was losing weight because it hurt to eat. I was taking painkillers. Nothing touched the pain. Up till this date, this was the worse pain I’d ever felt in my life. I called Beth-Ann Norton, the nurse practitioner here, and Josh [Dr. Korzenik] and said, “This is not Crohn’s. Nothing can hurt this bad.” And I was begging them to take out my esophagus. They said, um, “We can’t really do that.” I’m like, “Put in a garden hose. That will work. It’s the same consistency. Just take it out.” It only got better when I started taking Tysabri.

FOUGHT TAKING TYSABRI

I had fought taking Tysabri because of the unknown risks to the fetus. Back when I started taking Tysabri, I knew, 100 percent that it meant I was not having a biological baby. I came out of the womb wanting to be a mother. But I had no choice. I mean, there was the PML [progressive multifocal leukoencephalopathy] risk, but I was a little more comfortable with that. All of these drugs have risks. And they monitor you so closely.

Adoption: Hard times and hugs

We adopted Gavin three years ago. He makes having Crohn’s a lot harder sometimes. I’m often really tired, and have a hard time keeping up with such a young, energetic, 3-year-old. But he also makes me re-evaluate my life and what is really important. No matter how bad I feel, his smile or hug can always brighten my day. It also forces you to power through at times that you don’t think you can. It’s getting a little harder now to explain things because he is more aware of when I am, and am not, around. We have started to put words and concepts out there so he can understand why mommy doesn’t eat certain food, sleeps a lot, and takes lots of pills.

URGENCY BECAME A PROBLEM

The Tysabri stopped working several years ago. I switched to Stelera and methotrexate, but the methotrexate nauseated me, so now I am on Stelera and 6MP. There have been other major stresses in my life. But since Gavin was born I’ve been hospitalized twice, had two colonoscopies and four endoscopies, and been on total parenteral nutrition—intravenous feeding—for seven weeks. I also developed a new problem: urgency—the need to go to the bathroom without warning. It’s better now. But for a while there it would be a minute between, ‘Oh, I think I have to go to the bathroom,’ to pulling over right now and thinking ‘I’m not going to make it.’ I have been in the woods, in Prada heels, scrunched over, having diarrhea. I had one horrendous accident when I was with Gavin. It was the worst experience.

Alternative medicine: Massage helped

I mean, there are crazy diets out there. I am careful with what I eat, but for me, those diets haven’t worked. And I tried acupuncture for a while. Didn’t do anything for me. When I first got sick, I got a massage once a month. That really helped. I don’t know if it was because I’m such a go-go Energizer Bunny that it just forced me to stop and relax, which I don’t do well. When I start to flare, I do something like that, something that deals with the mind-body-stress connections. And I have taken probiotics for years.

Explaining IBD to others

After being immersed in the IBD world for so long, I am not shy about talking about things with my co-workers. I don’t hide my symptoms and it’s amazing how much I talk about poop! But I am limited about who I share my illness with. I don’t hide anything. I just don’t offer it. Everyone I have told has always been sweet and helpful and supportive. But I don’t like people to feel sorry for me and my struggle.

Striking a balance in my career

I had to make a very conscious decision about what type of career I would have and what I could really handle. But it’s often a struggle internally. One day I want to be the president of a company. The next I want to not work and stay in bed. Overall, I try to be a little more realistic about my career so I have the right balance.

My attitude

Everybody comments on my attitude. I mean, anybody I speak to, whether it’s somebody else who is sick with IBD, or a good friend, or somebody who is hearingmy story, I hear that the most: “You have such a good attitude.” It is what it is. I have an active, severe case of Crohn’s, and if I dwell on it, what good does that do me? I’m not going to walk around, crying and being bummed out. If I sit there and think about how I don’t feel well, that doesn’t help anyone. Gavin doesn’t care that I don’t feel well. When he gets up at six o’clock in the morning and he wants mommy to jump on the trampoline, that’s what he wants. You can’t let Crohn’s control your life or get your down. The world doesn’t stop because you don’t feel well, so embrace the good parts, focus on those and go with it!

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