Crohn’s Disease: Coping

As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover what living with Crohn’s is like.

Once diagnosed with Crohn’s Disease, odds are your doctor gave you some version of “you’re going to need to make some changes.” They probably prescribed a bunch of new medications and told you that you’ll need to take them for the rest of your life. You were told that you’ll need to make some changes to what you eat and what you drink. Since the odds are you’re still young, you’re probably feeling as if life is essentially over. That’s normal, but as I and millions of other “Chronies” can tell you – life isn’t over. It just got more interesting. If you haven’t read through the posts on symptoms and treatments yet, take a few minutes and do so now. One of your best weapons in the fight against Crohn’s disease is education and this is good place to start. I also suggest going through the Crohn’s & Colitis Foundation’s website. It is an invaluable source for information.

Your first major change is that you and your doctors are about to become fast friends. Before my diagnosis, I didn’t have a regular doctor. I was a typical, healthy 25 year old and only went to see one if there was something really wrong – and it had to be really wrong before anyone could force me to step foot into a doctor’s office. The gastroenterologist who diagnosed me was as strange to me as an alien who dropped in from Mars. He was a nice enough guy, but I didn’t particularly like him and because of that, wasn’t sure I should how far I should trust him. So rule #1 about living with Crohn’s: find two doctors that you not only like but can absolutely trust with your life: a gastroenterologist (for your guts) and a general practitioner (for everything else). Because how you handle those relationships will go a long way in determining how well you live your life. In my case, I’ve had the same primary care physician for 10 years now and GI doctor for 8. The reason is not only are they very good doctors, but we have a great relationship. They know me by sight, including my medical history. How well? About three years ago, I had my left knee rebuilt and was in the hospital for the pre-op when my GI doctor was racing down the hall past my room. When she spotted me lying in bed, she put on the brakes, turned around and walked into my room – concerned I was having a flare. Then she made sure my chart mentioned my Crohn’s and that I’m allergic to tetracycline before continuing on to where she was headed. That type of relationship with your doctor is crucial to not only living with Crohn’s, but living well. Besides the peace of mind you get from that type of relationship, it has practical implications. When Cimzia was first approved for use, my GI doctor called me with the news and asked if I was interested in trying it. Had I waited for my scheduled appointment, I would have waited another four months before beginning treatment.

That brings up my next point: make certain you keep all of your medical appointments. Things come up that we never expect in our lives, but it is critical that seeing your doctor regularly. Even if you’re feeling well, your doctor may spot something and be able to put out the fire before it begins. Make certain you take all of your medications as prescribed. There’s a good chance some of them will need to be taken multiple times a day (mine do). A tip: nowadays, almost everyone carries a cell phone. And many of us carry a smartphone. A great way to remind yourself to take your meds is to set reminders on your phone. In many cases, you can synch those reminders with your computer, too.

It’s also important to have a good support network, other than the medical professionals. Friends and family are going to be important as you live with Crohn’s. Some of the people you consider friends won’t want to be bothered with helping out when you’re having a flare – it’s actually a fringe benefit to Crohn’s. You’ll find out who your real friends are and who was just a hanger on. Part of the reason is mental. Nobody may have told you this (although you might have suspected), but living with Crohn’s can have some very down moments. You need to mentally prepare yourself for frequent hospital stays and often feeling like – pardon the pun – crap. There are times when you will be so physically ill you can’t leave the house; having a friend or family member willing to run errands during those times is invaluable. Depressed feelings go hand-in-hand with so often being unable to do much more than run to the bathroom, with the frequent hospitalizations and being isolated. Having friends who are willing to drop by, make hospital visits and just generally keep your spirits up is more valuable than having a million dollars in the bank.

I also suggest finding a Crohn’s patient network, or if you’re ambitious starting one yourself. There are a lot of us Chronies out there – probably more than you imagined. Nobody has an exact count, but it’s estimated that as many as 43,000 people in the United States have Crohn’s. There are also on-line support groups available, such as the Crohn’s Disease Support Network, MD Junction and Daily Strength. Why join a support group? Because while having friends and family is important, it’s also important to be able to discuss how Crohn’s is affecting your life with other people who have experienced exactly what you’re going through. If you’re reading this, chances are you want to find out more from someone who’s been there and done that. Support groups offer that and more.

IF you’ve read this far, you are almost certainly wondering what in the world you did to deserve this. After all, all I’ve written about is that you can expect pain, hospital stays, frequent bathroom trips and finding people to talk to. None of that stuff is fun and you’re probably saying to yourself, “My life is OVER!” Well, now for the good news: your life is hardly over. You’ll need to make some changes, sure, but consider them course corrections. Having Crohn’s doesn’t preclude you from living a full, happy and productive life. If I’m not proof enough of that, Wikipedia has a list of some pretty famous people who also have Crohn’s Disease – and it includes athletes, actors, musicians, politicians and others. The steps I’ve outlined above are just preparatory to living the life you want. Here’s some common, everyday hints and tips for not only surviving but thriving with Crohn’s:

Work

While it’s true that some Crohn’s patients are permanently disabled, the vast majority of us work for a living. And most of our employers are glad to have us, even if it means having to make a few accommodations to allow us to work. The key is to make certain you let your employer know that you have Crohn’s Disease ahead of time. I obviously haven’t held the same job for the past 20 years (who has, nowadays?) and one of my keys to finding productive employment is to always let prospective employers know I have Crohn’s. I may have lost a few jobs because prospective employers didn’t want to bother with it, but I’ve always looked at it as their loss. Your co-workers will understand the reason you take a few extra bathroom breaks during the day, pop pills at odd times and are occasionally late arriving.

Eating Out

Eating out can pose a special challenge for Crohn’s patients. Rule #1 about eating out: avoid fast food. While McDonald’s, Taco Bell, Wendy’s and Burger King are cheap, quick and tasty dining alternatives they play havoc with our insides. They’re just as fast coming out as going in. Like everything related to our diets, you can’t necessarily rule them out forever. But it should be on your “last alternative” list. Rule #2: be proactive about asking how food is prepared and what ingredients are in a dish. I made the terrible mistake of not asking several weeks ago and paid for it for two days. Remember, it’s your health and your right to know what you’re eating. I’ve yet to find a restaurant that isn’t willing to tell me.

Along with eating out is drinking. Again, this is the “anything in moderation” meme. If your friends are going out to get hammered, volunteer to be the designated driver. If you’re having a beer after work with a couple of buddies, listen to your gut. If your symptomatic, it’s probably best to have a glass of water (or ginger ale) instead. If you’re otherwise healthy, one or two drinks is probably ok. But more than that and you will be asking for trouble. And if you’re drinking anything alcoholic, eat something – it helps slow the absorption of alcohol and your stomach will thank you. Trust me on this one – a hangover with Crohn’s is twice as bad as any you ever had without it.

Traveling

There might be no greater horror for a Chronie than being on the road and needing to find a bathroom – NOW – and not being able to find oneThis has happened to everyone with Crohn’s; you’re not alone in this experience. But there are a few tips that can reduce the chances of it happening. First, map your route and the public restrooms along the way. There are some great on-line resources for this, generally localized to your region. If you happen to have an iPhone or Blackberry, download the SitOrSquat app. It’s a terrific resource for finding a public toilet. (For the rest of us, you can text 368266 and get back a list of nearby bathrooms). Tip #2: check with your doctor if it’s ok to take an anti-diarrheal before heading out. If so, then go ahead and pop that Immodium® or Kaopectate®. Third, do your best to use a toilet before leaving.

Even doing all of this won’t prevent accidents from happening. They will, so it’s best to be prepared. I always carry an emergency pair of underwear in my briefcase, along with some baby wipes and one of those plastic bags you get from the grocery store. Most of my friends understand why my briefcase goes with me everywhere (even to the beach, although I don’t take it on the beach). Ladies, you can do the same with your purse.

Dating

Most of what I covered above applies to dating, as well. Your date will just need to be understanding if you need to excuse yourself from the table during dinner, or take a leave of absence during a movie. But one thing to note about Crohn’s is that stress can bring on symptoms – and dating can be a stressful event. As with work, let your date know ahead of time that you have Crohn’s. If they beg off or stand you up, well, then they definitely weren’t right for you, were they? Romantic situations can be difficult (after all, excusing yourself and running to the bathroom can ruin the mood), but you and your significant other will figure those out as you go along.

Starting a Family

One of the most important decisions a person ever makes is if and when to start a family. For a Crohn’s patient, the decision becomes even more difficult. I can’t tell you whether or not to have children, or when the time is right. I can only relate my personal experience and that I wouldn’t trade my three sons for all the tea in China. But things you definitely want to consider include the possibility of passing along Crohn’s (about 1 in 3 Cronies have a family member who suffers). You also need to take into account how well your Crohn’s is responding to treatment and how the additional stress of children may affect you. Finally, while all prospective patients need to take into account their financial situation, Crohn’s patients need to be especially mindful of the fact that as a result of their condition, they may face periods with reduced (or no) income.

Stress

Moderating your stress level is key to living well, either with Crohn’s or without. It’s just that for those of with Crohn’s, we need to pay a bit more attention to it than most people. If you perused that list of famed Cronies, then you’ll notice quite a few of them had stressful occupations. (Imagine the stress Dwight Eisenhower was under, first as the man tasked with defeating Hitler and later as President of the United States!). None of them could reach the pinnacles of their professions without learning to manager stress and the good news is you can, too. Whether it’s working out in a gym, running, prayer, meditation or something else, find it and practice it. For me, it’s a combination of prayer and working out. I work out at least three times a week and every morning starts off with a bible reading and prayer.

Outdoor Activities

If you’re anything like me, you probably enjoy being outdoors and doing things. And there’s absolutely no reason you can’t, even though you have Crohn’s. I played baseball until age and bad knees caught up to me, I’m still an avid bicyclist, I play golf and I still love taking hikes through the woods and spending time on the beach. If you enjoy the great outdoors, just follow the tips for traveling above and you should be fine. If you’re also into organized sports, most leagues are willing to grant you a “time-out” so you can use the restroom.

Ok, I think I covered most situations here. But if you have any other questions, feel free to drop me an email at rayrothfeldt@aol.com.