Jun 12 2012
This week, I’m interviewing a very special guest. Sheri A. Wilkinson, who has graciously accepted my offer to share her battle with Crohn’s disease with my readers, in hopes of raising consciousness, educating people, and allowing us to get a glimpse into her world. Sheri is one of the coolest peeps I know — a ninja warrior with a big heart, a fighting spirit, and a love for her family and friends that knows no bounds. (Sheri has kindly updated us on her life since the original publication of this blog in 2012. You can find that update at the end of this interview.)
Hey, Sheri. Thanks so much for being my very special guest this week. Please, tell the cool peeps about yourself.
I am originally from Chicago, born and raised until 1998 when I moved out to rural Illinois. I am happily married; I have two daughters, five stepdaughters, four grandsons and two granddaughters. My family is my whole world. I am also a Crohn’s warrior, avid reader and animal lover.
I’m very honored that you’ve chosen to talk to us about Crohn’s Disease (CD) and your personal battle with it. It is important for everyone to understand that you are here as a person battling CD, not as a doctor or medical authority, and that your responses are based on your personal experience and knowledge only.
Yes, thank you for stating that. I always let everyone know I am not a physician and even though I feel an expert on the subject, any questions or doubt on what I say should be discussed with your doctor. If this interview can help one person, I would feel as if I made a contribution to society. So many people suffer in silence and embarrassment when they don’t have to.
Most people have heard of CD but many do not understand exactly what it is. Can you explain?
Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea and even malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.
The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications. Sadly there is no cure for CD, my dream is to one day wake and find there is a magic pill/drug to cure this disease.
What are the causes of CD? Who gets it? Why?
The exact cause of Crohn’s disease remains unknown. Previously, diet and stress were suspected, but now doctors know that although these factors may aggravate existing Crohn’s disease, they don’t cause it. Now, researchers believe that a number of factors, such as heredity and a malfunctioning immune system play a role in the development of Crohn’s disease. My doctors believe I was born with a deformation in my transverse colon (upper part of small intestines).
Why people get it is still not know, Some researchers suggest that people living in large metropolitan areas are more susceptible, but this has not been documented to my knowledge, as fact. As I mentioned, I am from Chicago, a large area, so my personal belief is that this could be true.
What are the symptoms of CD?
Inflammation: In some people, just the small intestine is affected. In others, it’s confined to the colon (part of the large intestine). Inflammation may be confined to the bowel wall, which can lead to scarring (stenosis), or inflammation may spread through the bowel wall causing a (fistula).
Signs and symptoms of Crohn’s disease can range from mild to severe and may develop gradually or come on suddenly, without warning. Some of the symptoms are:
Abdominal pain and cramping. (In serious cases, the pain may be severe and include nausea and vomiting.)
Blood in the stool.
Ulcers (As well as ulcers in the mouth similar to canker sores.)
Reduced appetite and weight loss.
People with severe Crohn’s disease, like me, have also experienced:
fever, fatigue, arthritis, eye inflammation, mouth sores, skin disorders.
How is CD diagnosed? Is CD often mistaken for something else?
When CD cannot be diagnosed it is often just classified as Irritable Bowel Syndrome, or in my case stress and anxiety. And I must tell you having this does cause stress and anxiety!
Some of the tests to diagnose CD are:
Blood Tests, fecal occult blood test, colonoscopy, flexible sigmoidoscopy, computerized tomography (CT), magnetic resonance Imaging, capsule endoscopy, double balloon endoscopy, small bowel Imaging, barium enema.
I have had all of the above except the capsule, and though these tests are not pleasant, I feel it is necessary to get a correct diagnosis and to ease suffering faster. The final test that gave me a definite diagnosis was a biopsy; that was when I knew I officially had Crohn’s Disease. It was a bit frightening and depressing knowing there is no cure and what lies ahead for me.
Are there certain risk factors?
Yes here are some risk factors for Crohn’s:
Age. Crohn’s disease can occur at any age, Most people who develop Crohn’s disease are diagnosed before they’re 30 years old.
I was in my mid 40s when finally diagnoses and was told I had probably had it for over 20 years due to all the damage and scarring to my intestinal tract. I went through so many tests and medications and was told it must be stress. I am happy to say I finally found the right doctors, and am glad times have changed. My life would have been much more painless if I had found out, say 20 years ago.
Ethnicity is another factor. Although whites have the highest risk of the disease, it can affect any ethnic group. People of Eastern European (Ashkenazi) Jewish descent have an even higher risk.
Family history and cigarette smoking is also a risk. Smoking is so dangerous in many, many ways. I highly suggest that you smokers quit. Being a former smoker, smoke-free for three years now, I just had to throw that in!
What complications can arise from CD?
Crohn’s disease may lead to many complications. Some are:
Ulcers. (They can occur anywhere in your digestive tract, including your mouth and anus, and in the genital area and anus.)
Fistulas. (They can be life-threatening if left untreated.)
Colon cancer. (Having Crohn’s disease that affects your colon increases your risk of colon cancer.)
How is CD treated?
Anti-inflammatory drugs are often the first step in the treatment of inflammatory bowel disease. Some are Sulfasalazine (Azulfidine) Mesalamine (Asacol, Rowasa). Corticosteroids.
If those fail then we move on to immunosuppressant drugs some are
Azathioprine (Imuran) and mercaptopurine (Purinethol). These are the most widely used immunosuppressants for treatment of inflammatory bowel disease.
Infliximab (Remicade). This drug is for adults and children with moderate to severe Crohn’s disease. It’s also used after other drugs have failed.
Adalimumab (Humira). This drug may cause remission, and is used when Infliximab has failed.
Certolizumab pegol (Cimzia)
Cyclosporine (Gengraf, Neoral, Sandimmune)
Frequently prescribed is Metronidazole (Flagyl). Ciprofloxacin (Cipro).
There are other medications to ease symptoms including:
Anti-diarrheals. Laxatives. Pain relievers. Iron supplements. Vitamin B-12 shots. Calcium and vitamin D supplements.
And the last resort is surgery. I am not sure of the percentage, but most people with CD will have at least one surgery in their lifetime.
What are some common misconceptions about people with CD? What are your personal pet peeves?
I feel the most common misconception that people have is, “you are just not eating right,” “it’s all in your head,” and it is “just stress.” Although stress does bring on “flares,” it is not the cause of CD. My biggest pet peeve is my weight (Isn’t that a touchy subject for most women? LOL).
As I have stated, the most common sign is diarrhea and most people with CD are thin (It is kind of hard to maintain weight with all that is going on in our digestive tracts). Plus we just do not like to talk about this. I cannot tell you how many times I have cried over the insensitive remarks people have made over my weight. I am a tiny woman to start, but before my surgery, I was so ill, malnourished, and underweight that I just stayed in my house to avoid whispers, stares and rude comments. If I had a dime for every time someone asked me if I was anorexic, I would be a millionaire!
I do not like when a complete stranger comes up to me and asks me if I am anorexic, how much do I weigh, and the dreaded, “My dear don’t you ever eat? You need some meat on your bones.” **eye roll** Can you see me rolling my eyes, Molly?
What can people do to raise awareness for CD and to understand more about the disease?
For one, The CCFA (Crohn’s & Colitis Foundation of America) CCFA.org has a lot of helpful info and ways people can help to (fund) research to find a cure. They also have so much information on Crohn’s Disease.
I also found support groups for IBD, since most people just do not understand us (people) with CD. And the main thing I feel is, if you know someone with CD ask questions!
We (at least I don’t) mind answering questions. I just wish more people understood what we go through daily. Having to plan trips around injections, making sure I know were a restroom is AT ALL TIMES, not eating the night before so I won’t have any “accidents” along the way. Just going to the grocery store or to the theatre can be a stressful event for me.
Is there anything else you want to tell us about CD that I haven’t asked you?
There are just a few things I would like to mention.
CD is not contagious; it is not easily recognizable, (unless we lift our shirts and show off our scars), and often we do not look sick.
Also, CD can be found anywhere in the body (although most common in the digestive tract). I have it in my intestines, stomach, esophagus, throat and mouth. Right now my gallbladder is being watched for signs of possible granulomas. But I will face that battle when the time comes. My friends know I have a great sense of humor and I call myself the CD ninja warrior.
It has taken over 20 years and many misdiagnoses before I finally was diagnosed with both CD and UC (Ulcerative Colitis). I have had a Right Hemicolectomy (also known as a bowel resection) along with my appendix removed.
You are a vociferous reader and friend to many authors. Please, tell us about your love for reading.
I have had a love for reading for as long as I can remember; I will read just about anything I can get my hands on! I have just recently entered the electronic world and yes, I caved and got a Kindle. I now have almost 200 books downloaded, but my love will always be a hardcover book. And, Molly, since your blog, I have to admit my TBR pile is rapidly growing! I have to admit if it were not for my books, I would not have made it through my recovery and all the horrid tests I endured.
Who are the special people in your life you’d like to brag about?
There are too many to mention, all my friends and family are special to me in their own way. Molly, you, of course, are my favorite.
But I have to say number one is my husband Lewis, he has been my rock and been with me through all my “health Issues.” He has seen me at my best and at my worst. He is my strongest support and I could not have faced all of this without him.
Also my daughter Lizz, she is a remarkable young lady who is wise beyond her years. She is my “mini-me” and a tremendous helper. She is always there to help me in any way she can. Whether it be helping with housework, making my meals, and just sitting and reading with me or telling me about her day when I am at my physical worst.
And I could not end this without the mention of my wonderful doctors who have (literally) saved my life twice in 2011. Dr. Gregg Davis (my PCP), Dr. Jae Kim (my G/I) you are the man! And finally Dr. Mark Williams (my surgeon) who endured many humorous encounters with me, not knowing I was joking…seriously Doc do I look like I had breast implants!? Inside joke. LOL! I just have to make sure they read this interview.
All joking aside I would not be here today if it were not for these remarkable, wonderful, knowledgeable and awesome physicians/surgeons.
Social media, that ever-evolving beast, has changed the way we do everything. What are your favorite and least-favorite parts of it?
I love the chance at meeting new people, I have meet a few wonderful people online, namely one Ms. Lisette Brodey ☺! If I named everyone else, this interview would never end, but you all know who you are.
The bad part of social media is that private parts of my life (that I do not want made public) always manage to become public knowledge. Seems in this modern world we are losing our privacy, the price we pay to interact online.
I’ve been forever called picky, but I maintain that we’re all picky creatures. What are you picky about?
Cleanliness. I cannot stand clutter, dirt or disarray. Dirty dishes in the sink has to be my biggest pet peeve! I am a neat freak and my house can never be too clean. Call me OCD Sheri. I don’t care. My house has to be clean at all times.
Where can people find you in cyberspace?
Any parting words for the masses?
As I always say: “Life is too short to sweat the small stuff.”
I may have Crohn’s, but Crohn’s does NOT have me. Peace.
MARCH 2014: AN UPDATE: by Sheri A. Wilkinson
Thanks for having me back. A lot had changed since my surgery and this interview. Due to my wonderful doctors and medications I am finally in remission. My flares were minimal post surgery, they did not last long, nor were they intense. I have overcome some obstacles along the way. I have had problems with my HGB (Hemoglobin) and am now permanently anemic (Due to CD). I have had another blood and iron infusion. I will need to be monitored (through blood tests) for life. I also have lost 40% of my hearing in my right ear, and my vision is poor and I now need bifocals, due to the toxic medications I need to keep my CD under control. But this is just part of Crohn’s and I make the best of each day.
I still have to be careful around people. Since my immune system is weak, using Humira makes it worse. But to me it is my “miracle” drug. When I leave my house (especially during the cold and flu season) I have to wear a mask. I also have to sanitize my house with bleach and keep it as germ free as possible to avoid the risk of a serious illness. But I have always been a neat and organized person, so it is not a big deal to me to take extra precautions.
But all is not bad. I have good news as well. I have exceeded my weight goal! This to me (which may seem trivial to most), is my best news ever! Having Crohn’s makes it so hard to gain weight, like the average person. I am so thrilled to be able to wear adult clothes. I also love my new healthier weight. I no longer have people coming up to me (embarrassingly) asking how much I weigh, how much I eat etc. I can now enjoy food! Before due to all the pain and discomforts of Crohn’s eating was for survival, now eating is a pleasure.
I am adjusting well to my new life with Crohn’s and I still hope and pray for a cure some day. The CCFA (Crohn’s and Colitis Foundation of America) is a great organization that offers advice and raises money for research in hopes of one day eradicating this debilitating disease.
On a personal not I also gained a granddaughter, and another granddaughter due this July. I also lost both my parents, my father to liver disease and mother to cancer. My family is still the center of my universe. They all mean the world to me. Once again I have to give credit to my wonderful husband Lewis and My youngest daughter Elizabeth (Lizz). They help me when I am at my worst and deal with me when I feel like giving up. Yes they have seen the best and worst of me and they never give up on me.
My parting words, if you suspect something is wrong with your stomach/intestinal/digestive tract seek medical attention. Do not suffer in silence. Crohn’s is not a “designer disease.” Most people have heard of it but know little about it. You often cannot tell a person has it. Although the testing and procedure for a correct diagnosis are not pleasant, they can and will help you.