Living with Ulcerative Colitis

Living with Ulcerative Colitis

Hello everyone, my name is Charlie, and I have been living with ulcerative colitis for the last 10 years. Believe me when I say I have seen the worst of flare-ups, and have gone through hell and back with this awful chronic disease! Whether you are recently diagnosed with ulcerative colitis, are a UC veteran, or simply have stumbled your way onto my site, I invite you to stay, read my blog, and learn more about the lifestyle changes that revolve around ulcerative colitis.

The one thing that I cannot emphasize enough is that ulcerative colitis is a very serious chronic illness. Chronic simply means that the condition never goes away. If you do not take care of yourself, then UC has ways of devastating your body, to the point of permanent changes.

If you have ulcerative colitis, then your body is telling you a lifestyle change may be in order. In fact, a lifestyle change is necessary. Every aspect of life is affected, including diet, exercise, family, relationships, treatments, career, and overall quality of life. How you handle yourself can determine how quickly ulcerative colitis heals, and how long you stay in remission.

Diet

Keeping a healthy diet is very important for people with ulcerative colitis. Personally, I try to stick with natural foods as much as possible. If it is a man-made, or processed food, I tend to stay away. That's not to say I don't let myself splurge or anything, because I do enjoy my greasy potato chips, but for the most part I tend to eat foods that help strengthen my body.

When I am in remission and completely healthy, I can eat just about anything I want. I can cook all assortments of food, even spicy! I get good amounts of fiber from fruits, vegetables, and whole wheat products. Lean protein comes from fish and chicken or turkey.

I tend to avoid soft drinks for several reasons. One, they are loaded with sugar, and can cause obesity. That alone is enough to make me shun them! But factor in that soft drinks can make ulcerative colitis symptoms worse, well...that's an no-brainer. Caffeine can stimulate intestines, so when a flare-up occurs, say nay to the caffeinated drinks! Also, carbonation does not help relieve gas...it may intensify it instead.

Eating 5 meals a day is also something I try to practice. Not only is it good for keeping high metabolism, but it puts less stress on your digestive system.

When it comes to alcoholic drinks, I was blessed early on to never have developed a strong taste for them. I do enjoy an occasional glass of wine, and when in remission, I am perfectly okay to enjoy my favorite glass of Chardonnay or Merlot. Drinking heavily is never good, especially with ulcerative colitis. Always be careful and smart when drinking, but take that one step further and try to avoid them at all costs during ulcerative colitis flare-ups.

Exercise

Being physically fit, reducing obesity by losing weight, and staying active is important to body health, especially when suffering from a chronic disease such as ulcerative colitis. One thing you may notice, especially when on certain medications, such as Prednisone, is that you gain weight easier. Appetite is increased, and you always seem hungry.

I gained over 25 pounds while on some heavy doses of steroids. This pushed me past the point of "overweight" for my age and height, and I rapidly got myself onto a workout program that helped me shed the pounds. Now, I maintain a body weight of around 160 to 165 pounds at 5'11" and 28 years fo age. Not too shabby at all!

Family and Relationships

Having your family close by during an ulcerative colitis episode can be a great comfort. It also helps them understand the seriousness of your condition by seeing what it does to you firsthand. I know when my first serious uclerative colitis flare-ups occurred, I wound up in the hospital both times, with my family at my side. After CT scans, ultrasounds, NG tubes, IVs, PICC lines, central lines, and luckily no surgery, they went through the ordeal just as much as I did.

Dating and eventually marriage can be tough for people with ulcerative colitis, because the fear of 'needing to go' can cause some people to be leery about revealing their disorder. Plus, even when a significant other knows about your ulcerative colitis, they may not fully understand the seriousness of your condition. This can lead to a rapid education for your special someone when a flare-up happens.

It is important for those in relationships with someone who has ulcerative colitis to remember that when that person has a flare-up, they need to focus as much energy as they can on getting better. This means lots of rest, careful dieting, and as little amounts of stress as possible. And understanding companion can make this process easier, and an impatient one can make it worse.

For those of us with ulcerative colitis, I have found it is best to ease knowledge onto those you date. For girls I dated seriously, I would simply tell them I have a condition where I get ulcers in my colon occasionally. Then, if they wanted to ask questions, I was an open book, but careful not to be too dusgusting with the details. And let's face it...ulcerative colitis is no fairy tale illness when it comes to the...occurrences that happen.

When I met my wife, I knew I had found someone incredibly special. When I told her about my ulcerative colitis, she was concerned and asked questions. My first real flare-up happened after around 6 months of dating, and she got her first taste of the ugly truth that ulcerative colitis is. Her adaptation was fast, and ever since then she has been an angel for me when I have needed my time to recuperate.

Now, not all relationships are pretty and perfect for people with ulcerative colitis. Often times things don't work out, and special someone's never fully understand. As hard as it may be, remember that self-preservation is very important. By this, I mean that your body can only handle so much. You MUST take care of yourself when it comes down to it. If you have ulcerative colitis, you have to stand up for yourself, and make sure that your body is given the rest it needs to recover, heal, and slip back into remission.

Treatments

There are many, many types of treatment for ulcerative colitis. Ranging from diet changes and medications, to procedures and surgery, you are likely to find yourself on several different treatment options throughout your life.

Oral medications are the most common. There are many different types. I myself started with Sulfasalizine, then switched to Asacol, and finally have wound up with Lialda, which has been a miracle drug for me. Lialda has kept me in remission for 3+ years now. Prednisone, a steroid, is no stranger to me, and I have been on that for just about every flare-up. Twice I have been on an immunosuppresant drug, called 6-MP.

For a period of time I was also on an IV medication called Remicade. Remicade is an extremely strong medication, but it possesses the ability to heal the intestine as well. Fair warning: Remicade treatments are usually very expensive. Trust me.

If you are hospitalized, you may find yourself on IVs, PICC lines, or even central lines, to help keep your body hydrated. The constant bowel movements and diarrhea can lead to dehydration in ulcerative colitis patients, thus hydration via IV may be necessary. Also, medications may be delivered via IV as well.

I was so dehydrated for one of my flare-ups, in addition to the inability to keep anything down, that they had to try to insert a PICC line in my arm. My veins were so dehydrated that that method failed, so they inserted a central line into my chest. This fed me and hydrated me for over a week and a half.

My stomach was in such poor shape that they had to stick a tube down my nose and into my stomach to continuously suction out the crap that was being created by my system. This allowed my digestive system a chance to rest and heal. This last measure is what saved me from surgery. I was literally 24 hours away from a colectomy.

For others, they may not be as lucky as me, and surgery may be necessary. Removing part or all of the colon can 'cure' a person of ulcerative colitis, because UC only affects the large intestine (colon). Depending on the severity of the disease, a pouch can be made from the small intestine to store waste, allowing for stools to continually to pass fairly normally within the body. In more severe cases, a colostomy may be needed, where waste is passed from a tube in the intestines to a bag outside the body. This can either be temporary or permanent.

Needless to say, there are a variety of treatment options out there for ulcerative colitis. Your life will change in someway or another, whether it be adapting to an oral medication schedule, or adapting to life after surgery. It is up to you to find the calm balance of living in remission and keeping flare-ups at bay for as long as possible.

Career

One of the hardest things for people with ulcerative colitis to balance is their careers. Often, careers are our livelihood, and many things revolve around our jobs. Ulcerative colitis doesn't see it that way, and manages to creep into our lives, entangling itself in our everyday activities, even digging its roots into what we do for a living.

Frequent bowel movements, discomfort, and pain can create all sorts of distractions and issues in our careers. In jobs revolving around customer service and establsihing client relations, as well as many others, ulcerative colitis can be a severe detriment during a flare-up, when bowel movements and cramps come and go at will.

Stressful jobs also can play a hand in making an ulcerative colitis flare-up worse. They key to managing ulcerative colitis and continuing with a successful career, with as little hindrance from UC, is to keep your job as stress-free as possible, and to keep your body rested and healthy.

Personally. I switched careers from restaurant management (high stress environment) to a coordinator position in an intensive care unit. While I am still in a critical care environment, I switched from working 6 days a week, at times reaching 72 hours or more, to 3 days a week at 36 hours. Yes, I am making less money than before, but I have only had 2 serious flare-ups in the span of 8 years since my career change, whereas I had 4 serious flare-ups in the span of 2 years of restaurant management.

In a role-reversal home environment, I am the stay-at-home parent, where my wife has become the breadwinner. I do work full-time, but my schedule allows me to be home with my daughter when my wife is at work. We are both very happy with our current lifestyle.

Lifestyle Changes

Ulcerative colitis requires lifestyle changes. When your body gives in to an ulcerative colitis flare-up, that is your body telling you to slow down. Changing your lifestyle only during a flare-up is only a temporary fix. Lifestyle changes must be permanent to help keep ulcerative colitis at bay!

For myself, I am a stay-at-home dad, who works full-time (a delicate balancing act). I have a beautiful wife and one gorgeous daughter with another little one on the way! We are financially sound, and trying our best to keep ulcerative colitis a distant stranger. Sure, I will get a flare-up again at some point, but my goal is to keep my periods of remission for as long as possible.

What lifestyle changes have you made since being diagnosed with ulcerative colitis?