Living with IBD

Rachel Morrell, freelance writer for AMSURG, interviewed Chris Yoakum of Spring Hill, Tennessee. Chris was diagnosed with ulcerative colitis in 1995, but years later he was re-diagnosed with Crohn’s disease. Chris is a husband, father of three, an active member of his community and local church, and serves as the head of the IT Department at the Tennessee Baptist Children’s Home. Passionate about supporting others with IBD, Chris was willing to share his story.

When did you start showing symptoms of IBD?
IBD often runs in families. Interestingly enough, no one in my family has ever had IBD, to my knowledge. There was no history of diverticulitis or even mild colitis. It really does not make logical sense that I just began experiencing symptoms after feeling well for my entire life, but that is how it all began.
I remember every detail of the day I started showing symptoms. I was in the Air Force, and I was 20 years old. I had never had any surgeries, and I was in good health, although I had poor eating habits. It all literally started in a single day. I remember what I wore that day, and I even remember what I ate that day. I started feeling very ill. I had diarrhea, bloody stool and was vomiting. It sounds strange to feel fine one day and intensely sick the next, but that is how it was.

How long did it take before you were diagnosed?
It took about one month to diagnose me. Over that month, I had lost about 25 to 30 pounds. My original weight was 185, so this was a significant amount of weight. My military doctor took a biopsy of my colon and determined that I had ulcerative colitis. He also suggested that I leave the military. I was started on 40mg of prednisone, then 80 mg and reached doses as high as 120 mg. The side effects of the prednisone were significant weight gain and stretch marks in every corner of my body. The steroids reduced my symptoms, but I got up to 220 pounds. We tried to find the right dose of medication, but every time I went below 80 mg of prednisone, my symptoms would return.

How did you come to a decision to have your colon removed?
A few years later, in 1997, the inflammation in my colon was so severe that something needed to be done. My parents and I went to see a surgeon in Dallas who suggested that we remove the entire colon to prevent further inflammation and to get rid of any infected tissue that we may be missing. This was a difficult decision, but I decided to have my colon removed and have a J-pouch. This procedure involved removing my large intestine and taking some of my small intestine to create a replacement colon. The J-pouch healing process took about two months, during which I had an ileostomy which was reversible after the J-pouch healed. The second phase of the surgery was removing the ileostomy, and the J-pouch functioned as my colon.

The J-pouch worked well for several years, but after 5 years, the J-pouch became chronically inflamed. Doctors thought that all I needed were antibiotics, but eventually the inflammation would return. I assumed that the J-pouch was just reacting to doing what it was not designed to do. My treatment plan was difficult because I moved a lot, so I had about 15-20 gastroenterologists. Each doctor handled my case in much the same way: discovery of inflammation, prescription of antibiotics and an occasional scope every now and then. Although the scope results showed some inflammation, none of the gastroenterologists even mentioned the possibility that this might be Crohn’s Disease.
Tell me how you came to find out that you actually had Crohn’s disease and not ulcerative colitis.

A few years ago, I started to lose a lot of weight. Looking back, I should have been more proactive about finding the source of what was wrong, but I think that my body had gotten used to being in pain. I was an active person, too, so I was not very worried because I was still doing all the activities I wanted to do. The pain did not go away, but it eventually got much worse. I began to develop complete intestinal blockages which would last for several days (which I would spend in an emergency room) until the stool would pass.

These blockages became a pattern. I would go to the ER, have an MRI of the J-pouch and have IV fluids until the blockage passed. Now I know that the ileum was closing up due to scar tissue and inflammation. The pain from the blockages was so severe that I could not eat, and I reached the lowest body weight I have ever been. It just did not make logical sense that these blockages were due to ulcerative colitis.

About 3 or 4 years ago, I was told to obtain a referral to the IBD clinic at Vanderbilt, and things started to change. Vanderbilt has a gastro clinic, but it also has an IBD clinic that has a very innovative method of working with patients. Many of the methods of the clinic were adopted from the Mayo Clinic, and they were like nothing I had ever experienced.
First, I met with a psychologist who asked about my stress level, sleep habits, marriage and even my finances. This lasted for about an hour, and the purpose is to isolate any stressful event that may bring on IBD. Then, I got to speak to a dietician who analyzed my diet and suggested some non-inflammatory foods that would not aggravate my condition. Both the psychologist and dietician reported to my gastroenterologist, Dr. David Schwartz.

Almost immediately, Dr. Schwartz told me that he thought I had Crohn’s disease. He scheduled a scope and said the patterns of inflammation looked like Crohn’s disease and not ulcerative colitis. Even though Crohn’s disease and ulcerative colitis both fall under the IBD family, they are very different conditions that have specific treatments. I really attribute my correct diagnosis to Dr. Schwartz and Vanderbilt’s holistic approach to patient care.

Did everything improve immediately after you found out you had Crohn’s Disease and not ulcerative colitis?
I still had some significant challenges. Two years ago, I had another blockage, and it began happening every month. Dr. Schwartz, my wife and I all decided that it was best to remove the J-pouch and put in a permanent ileostomy. Most of the inflammation was isolated to the J-pouch, so removing it would almost certainly relieve the inflammation. We were correct, and now I’m back to a healthy weight. I’m careful with what I eat, but I also do not follow a stringent diet. Some people are convinced that gluten or simple sugars aggravate Crohn’s, but I have not noticed a difference by giving up gluten or all simple sugars. I did notice that ice cream brought on significant abdominal pain.

What are some ways that Crohn’s disease (and not having a colon) changes your daily activities?
Crohn’s definitely changes my schedule. Every month, I have to get bloodwork done to see if I have nutrient deficiencies. Because I do not have a colon, there are many foods that I cannot digest such as salad, hard vegetables, celery, corn and spinach. I’m not getting nutritional value from foods if I cannot break them down, so I have to supplement with Ensure and vitamins like vitamin C, vitamin D and potassium.

I also have infusions called IVIG, or intravenous immunoglobulins, which are derived from plasma and help treat immune deficiency for patients with Crohn’s disease and other autoimmune disorders like rheumatoid arthritis. I go every two weeks for my infusions, and they have been very effective. I have not experienced any side effects, but the downside is that IVIG is not approved by all insurance companies and is extremely expensive.

What is it like living with an ileostomy?
It is extremely important to care for an ileostomy to make sure that it does not get infected, but it is more involved than that. There are probably a lot of aspects of daily life that all people take for granted. Sometimes I am concerned that I cannot do all the activities that I want to do like running long distances, swimming, or even taking my shirt off. I’m especially concerned about not being able to do stuff with my kids, but thankfully I’ve been able to adapt to having a permanent stoma bag and can participate in most activities.

I think that it’s important to keep a sense of humor in all areas of life, and having a stoma bag is no exception. I’ve actually named mine. It’s Oscar. Being able to talk about Oscar and joke about him has been very helpful to make my Crohn’s disease approachable for my kids. We can also talk about Oscar without anyone knowing what we’re talking about-—like our own code! Oscar is just part of the family.

I’m on some really good forums that offer support for those who have a permanent ileostomy, such as Undercover Ostomy, a nonprofit organization that offers support on diets and treatment. This is especially helpful for young people who need a community. My heart goes out to these young people because an ileostomy may make it difficult to seek a close relationship with someone. I’m so thankful for my amazing wife who is just extremely cool about everything and she is incredibly supportive.

Can you say that anything good has come from you having Crohn’s disease?
I actually think that Crohn’s disease has made me a better human being, and it definitely has made me who I am today. Before I was diagnosed with IBD, I was living a very unhealthy lifestyle, and now I am taking care of my body and I feel great. I play with my kids, I’m making healthy choices, and Crohn’s has made me resilient and tenacious. I think that dealing with a chronic autoimmune disease takes a certain attitude. Thankfully, I have a laid back, come-what-may personality, and you kind of need that adaptive nature with Crohn’s. But looking back, I had very little direction in my life before my diagnosis of IBD. Now, I see the strength of character that I have, and I attribute it to having to meet the challenges of IBD.

I do wish that we had known that I had Crohn’s disease back at my initial diagnosis. I would not have elected to have my colon removed, and I think that some of my issues could have been avoided. However, not much was known about IBD back then. It was still relatively new, and treatments were emerging. Now that we know that I have Crohn’s, we are headed in the right direction for my treatment. I’m so glad to have found the IBD clinic at Vanderbilt. Their philosophy of asking good questions, listening and working as a team has made all the difference.

What would be your advice for someone who is suffering from IBD or has a permanent ileostomy?
This tends to be a difficult subject for people to talk about, and it’s easy to feel alone, so what suggestions can you offer? I have discovered that so many more people than we know are dealing with some sort of IBD. It seems that as soon as I start to know someone, I find out that they are dealing with some G.I. problem and do not know how to get started. I have a hard time simply referring those to a general gastroenterology office due to what I have been through. Most everyone with IBD has gone through the same medicines and remedies and hopes there is something new to try. I think it is important to realize you must change your diet and reduce stress in your life. Before the Internet, chat rooms, Facebook groups and online health information, anyone dealing with IBD pretty much was on his/her own. One of the best things you can do is make that first “post” to a public forum/blog/chat room. You will instantly discover there are many people watching and reading. This is where you get the real encouragement. It is heart-breaking to see a post from someone who has been struggling for so long and you find they have no insurance and they just know they are soon to end up on an operating table as a last resort. For someone who has no insurance, there are lots of options with diet and supplements. Many people have proved that diet is more powerful than any medicine. And for anyone contemplating suicide triggered by their detrimental health, please post to these groups. You will be loved and encouraged, and you may just find the answers you were looking for. One more thing… finding your church family and your relationship with Christ can help you through medical financial hardships, will reduce stress and will ultimately save your life.

Most impactful book: The Makers Diet by Jordan S. Rubin
Blogs/Internet groups

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