As lead guitarist for Pearl Jam, Mike McCready has lived the charmed life of a rock star for a long time, or so it seemed to fans. But rock star status couldn't change the fact that Mike was also living the life of a Crohn's disease patient. More than once, a Crohn's attack forced him to run off stage in the middle of a concert in a desperate search for a bathroom. In a HealthTalk interview with Rick Turner, Mike shares his good and bad moments with Crohn’s disease and offers advice, encouragement and a lot of heart to others living with Crohn's.

How Mike Got the Courage to Talk About His Crohn's Disease

Rick:

You take a straight-up approach when talking about a disease that many people are ashamed of, frankly, and pretty secretive about. Why are you so out there with your Crohn's disease?

Mike:

I was not always that way. I was quite embarrassed by it and ashamed and wanted to not talk about it and hide. After years of doing that and living miserably, my wife got tired of me complaining about it, and said, “Hey, look, you should try to lend your voice to this and promote awareness. Do something positive with this experience.” And so a light went off in my head, and I was like, “Okay, I think that's right.” And by doing that, it has enhanced my life in innumerable ways - socially, spiritually, medical-wise. To just meet people that have Crohn's or colitis and to hear their stories gives me a lot of hope and a lot of courage.

The Shock of a Crohn's Diagnosis

Rick:

Let's talk a little bit more about your own story. How old were you when you were diagnosed, Mike?

Mike:

I was just 21. And I had moved down to Los Angeles to try to make it in my band, Shadow. We came down and had dropped out of college, and I was going for it. We were starving, but having a good time or whatever.

I remember the day, I don't know the exact date, but I remember I was at a Johnny Rockets, and all of a sudden I had to get to the bathroom immediately. And I remember a guy was in there, and I was like, “Oh, man, did I eat something wrong? What happened?” And so I figured it was something that I might have eaten because I wasn't really eating that great.

At that point, it continued for about a week or two weeks, and then I went in to the doctor's office, and the guy said, “Well, it looks like you have ulcerative colitis.” And they put me on sulfasalazine at that time, which periodically worked. It worked on and off for about a year. And then they had to put me on prednisone, which is just so nasty and caused me a bunch of problems. Throughout my life of having Crohn's, I've been on and off prednisone when other stuff was not working. But 1986 is when that happened.

How Crohn's Changed Mike's Life

Rick:

You were just getting started in a big, new career. How did Crohn’s disease affect your lifestyle?

Mike:

It affected it immensely. It shattered my whole hopes and dreams. And it was a whole new chapter on my life. It was like, dude, you have got to do something with your life. It affected me in a way like well, maybe I can't even do music, or maybe I need to get back home and take care of this and see what could happen. So it was very much a deciding factor of me going back to Seattle at that time - because I was sick, and I was away from home, and I didn't know what the hell was going on, and I was young, and it felt like it was the end.

Later on I had gotten on Remicade (infliximab) before it was, I think, FDA-approved. And that worked for quite a long time for me. I stopped taking it. I kind of got lackadaisical, and I didn't keep my treatments up. And my body has since grown an immunity to it, so it didn't work.

Mike's Band Mates Support Him Through Tough Times

Rick:

As the popularity of Pearl Jam grew, I imagine that you did a lot of touring which creates its own set of special problems. You have to adjust to the travel, the food, the hotels, and not to mention knowing if there is going to be a bathroom around. I would think this was something you couldn't just keep to yourself. Everybody in the band had to be aware of this, right?

Mike:

For sure, and they were all super receptive to my problems concerning Crohn's, and that's why I love those guys, because we were all in that together. When our band took off, we were all in this microcosm of a hurricane or whatever it was. It was a crazy, crazy dream come true with nightmares floating around it, and all sorts of stuff was happening and my Crohn's was happening. So they were very receptive to my needs. For me it was hard on tour buses because you can't go number two on a tour bus. And maybe you can now, but you couldn't back then, so that's not saying I didn't do it. I mean, when I had to go, I went.

Unpredictable Eating on the Road

Rick:

And how about the diets that you encountered, Mike, did it matter if you were in Mexico or wherever?

Mike:

Yeah, I would say it did. It just depends. Crohn's patients differentiate their diet. You know, what I can handle and tolerate, another person couldn't, and what they can, I can't. So it just depended on where I was. Sometimes when I am in Portugal, I will have some issues, and in Europe, I don't know if it's because it's unpasteurized food over there, and I am used to having pasteurized food from living here.

I had some oysters one time that really screwed me up, and that's what brought on my last Crohn's attack.

Crohn's Doesn't Mix with Rock Star Habits

Rick:

Part of the rock star image and mythology is the lifestyle of debauchery with drugs and alcohol. All those things are wide open to you. Do Crohn's and heavy partying mix?

Mike:

Not at all. Not in any way, shape or form. That being said, you know, I did go through that phase of alcohol and drugs, and it was quite devastating to my system and to my life and to people around me. It did nothing but cause chaos. I had fun at times, but generally that was maybe five percent of the time. The other 95 was a nightmare.

Whether that was due to rock or whether I would have went down that path had I not been in a band, I don't know. I probably would still have gone down that path. It didn't help my Crohn's at all. The only thing I know is when I was taking some opiates - they were Vicodins or whatever - it would slow my system down. And I think I used that as justification to do that. It was just like, “Okay, now I don't have go, you know, 20 times a day. Now I can go once every three days.” And for somebody that has Crohn's, that was my justification to do some drugs.

No More Partying for Mike

Rick:

And what was the impetus to change, leaving that destructive lifestyle behind and taking on a cleaner, healthier lifestyle?

Mike:

I think I just finally had enough of it. And I had been intervened on by my band and my parents, and I was like, “Wow, I am really hurting all these people.” And while I was in the midst of it, I didn't really care. I just wanted to do my drugs and feel better about having Crohn's and not feel anything, basically. And then when I realized how much I was hurting all these people around me, I finally said, “I've got to get it together, and I got lucky.”

Mike's Advice for Kids with Crohn's

Rick:

And how would you talk to young Crohn's patients today about those temptations, the world of drugs and alcohol and tobacco, and successfully managing their disease?

Mike:

I would say leave it up to the doctors. Don't leave it up to yourself or your peers. These are all obvious statements, but kids are going to be kids, and they are going to do what they want to do. And that's kind of unfortunate at times because that's how I felt too. I would say, read up about your disease and figure out things, but don't try to manage your own disease by giving yourself drugs because that's not going to do any good. All that will do is destroy your life.

Even Rock Stars Have Insurance Issues

Rick:

What do you see as the most important insurance issues for Crohn's patients, Mike?

Mike:

I think getting insurance for preexisting conditions is huge and certainly for people that don't have a lot of money. That being said, I go through problems myself with this, and there is a thing called prior authorization that they will put you through, and this has happened to me recently twice. And if it's happening to me, and I can afford this, I can't imagine how much this is happening to poor people, to young kids. And to me that's just the most wrong thing you can do. Your bottom line is not worth a person's life. So in response to that, there's a woman named Jennifer Jaffe that we do some work with and raise some money for, and she's a lawyer and an advocate for people with diseases that don't have any insurance, that have preexisting conditions.

And I think that she looks at it as a civil rights issue, which I totally agree with. And Jennifer Jaffe's Advocacy for Patients with Chronic Illness, at Advocacy for Patients with Chronic Illness has helped many, many people who are struggling with this disease and insurance companies will not help them because they have a prior condition.

The Rolling Stones and Crohn's: Mike's Worst Moments

Rick:

What was your worst moment or your worse incident with the illness?

Mike:

The one kind of classic one that I tell that sticks out in my mind was when we were opening for the Rolling Stones. I think it was in 1997 in Oakland. And they are my favorite band of all times, so this was a huge honor for us to be even part of it. So I was kind of sick at that time. We were about to go on. It was within a minute of us going on stage, and I had what I call a Crohn's attack, and so I'm about to just lose it right there, right before we go on, and I run up to Eddie [Vedder], and I say, “Hey, Ed, can you start with this song called ‘Sometimes’ because I'm not really on that song. I just do some little atmospheric things,” and he said sure. And those guys go out. I ditch and go find a bathroom. And I got to look into us open up for the Rolling Stones in the bathroom on stage, in a Port-A-Potty. And then I went out and did the show, but that's happened a few times. I mean, we were in, I think it was Rotterdam one time, and I was running around, and I was playing the lead, and all of a sudden it hit me again, and I couldn't go anywhere, but there, and I was in extreme pain, didn't wanted to hunch over or anything because we were playing in front of like 10,000 people. So I'm trying to hold it together and play, and I had to go, and I went right there while I was playing. And it stopped, and I had to change, and, you know, it was a nightmare.

And it has happened to me driving around Seattle. It's happened to me when I'm in my car, and I am trying to find a restaurant that will let me in to use it, or a store, and a lot of times they are not into that, and that drives me crazy. I think that's just wrong. It's like what do they think we are going to do in there? You know, we're going to use the bathroom most of the time.

Facing Crohn's Disease Head On

Rick:

And I guess you have a best moment?

Mike:

I have more best moments now that I've been able to talk about this and meet people. Chris Adams is a dear friend of mine now who has had a far more severe case of Crohn's than I have, and I look at him and he's just so positive and full of life and life affirming, and I think he is running a race this weekend for it.

And that's another thing we do, we do a run, a Crohn's & Colitis run each year, and I think we are doing a walk next year. And I do interviews about it and stuff. But, you know, best moments are getting to run at the Crohn's & Colitis thing last year, and I did it in 22 minutes, a 5K, which I was stoked about. And I couldn't walk for three days afterwards.

Reaching Out to Others with Crohn's

Rick:

How do you encourage the young people you talk to, Mike, who are struggling with Crohn's and worried about their social lives and everything else that goes with that?

Mike:

I try to tell them to realize that you yourself are an important individual and to maintain a positive attitude even though you are suffering and you are bleeding and your stomach is killing you or you are having to go through surgeries. That being said, having a positive attitude is very hard.

When you feel better, try to exercise. Try to figure out what you are eating that may be setting this off. Try to look at the medications that are out there, the diets. Try to look for different things in your life and go inwardly and figure out what works for you.

People have to realize that this is not a death sentence. You can learn things from this. I have learned solutions to living whether it be working out when I feel better, to eating a certain way, to certain medications, to talking to people through CCFA, there is a positive solution to this, and it has to come from within, from each individual patient.

Resources for Living Well with Crohn's Disease

To listen to the entire HealthTalk interview with Mike McCready and find out more about Crohn’s disease, check out these HealthTalk pages:

Crohn's Disease Basics