Healthier Stay


Crohn’s Has Hit the Big Time

When I was a kid, my Dad was in the hospital a lot. Trying to explain what was wrong with him was definitely an arduous task. There was not very much information available. When I was four years old, I would tell people that my Daddy’s tummy was trying to eat him. That’s how I understood the situation because Crohn’s was such an enigmatic disease. Some of his guts were bad and the doctor had to remove them because they did not play well with others. In less than 30 years, Crohn’s has exploded from a rare, enigmatic disease to an all star ailment. Crohn’s has hit the Big Time. For years, my dad was the only one I knew with Crohn’s and now almost everyone I meet has heard of Crohn’s disease.

Obviously, there are pros and cons to this development, these days approximately 500,000 people are diagnosed with Crohn’s in theUnited States. There are definitely more occurrences than when my dad was diagnosed. It is also much easier to pinpoint the symptoms of Crohn’s these days. Tests and biopsies are usually outpatient and no longer have to leave permanent scars, so more people are properly diagnosed.

The reason I think Crohn’s has become a “Big Time Player” is we now have public exposure (the good kind not the trench coat kind). We have resources that have not been available in recent years. I’m really happy because there is a plethora of information about Crohn’s and other Inflammatory Bowel Diseases. There are commercials, Public Service Announcements, web sites and Celebrity Spokespersons. Heck, there are even Class-Action lawsuits! Crohn’s and IBD are in the spotlight and I am thrilled. More awareness means more research, which leads to better chances of a cure!

With the new celebrity status, and celebrity patients, the internet is teeming with information for patients. That’s fantastic, but with great exposure comes great consternation. It can be hard to know which resource is the best for your needs. There are lots of books, web sites and WebTV channels out there; these are the sites, channels and organizations that I use. *Disclaimer-I am not a health care professional. I use these resources to research my posts and my own illness. Any information or regimen changes should be discussed with your own medical team.*

Websites:

The Crohn’s and Colitis Foundation is the foremost expert about Crohn’s and IBD and also the most well known.

Webmd.com is known for their helpful information and a user friendly site.

Health.com I like this site a lot. I think it is very easy to use and answers a lot of the questions I have in slide show form. Fun!

Emedicinehealth.com is another great resource that explains the disease, symptoms and procedures.

Everydayhealth.com easy to understand and explains Crohn’s from the early stages through remission.

Wegohealth.com a web TV service where patient advocates share their stories and advice on the Crohn’s channel.

Painchannel.tv is more for the chronic pain that accompanies Crohn’s and other chronic illnesses. Each episode deals with different types of pain care and management.

Of course I also recommend www.healthierstay.com andwww.whatthejules.comfor more info and interaction with the Crohn’s, Patient Advocate and Chronically Awesome community.

I hope these will be of help to you. So much has changed since I was little and we now have great resources. I’m always trying to find new developments that will help us, as patients, lead healthier, more normal lives. One thing I have learned is Crohn’s is an autoimmune disease and my four year old explanation wasn’t so far off.

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Crohnically Dreaming

Posted in Archive Blogs by Healthier Stay on February 27, 2012
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Since age 12, I have wanted to be a Marine Biologist. I wanted to work with marine mammals while living on a boat and eating Crepes Suzette with Philippe Cousteau. In high school my science club spent two spring breaks in Key LargoFL, with the Marine Resource Development Foundation (MRDF). We studied mariculture, ecology, biology and astronomy. The first year we snorkeled the mangrove forests, turtle grass shoals, gorgeous coral reefs and way out in the deep blue sea. Year two, we were SCUBA certified and able to experience those areas in a more in-depth manner. I was in heaven. This was what I wanted to do forever. The one thing I missed was a manatee. I wanted to work with the manatees.

Since Ohio is a land-locked state, I studied Biology with the hopes of going to grad school in Guam. Then I got sick. I realized that with Crohn’s I would not be able to live out on a boat, away from quality medical access and ready access to bathrooms. I switched my major to secondary education and decided I would share my love of Biology with
high school students. Then I fell in love with the Hebrew language and Archaeology and switched my major again. Eventually I was too sick for school and I had to drop out with 4 quarters left. Life sucked. I thought I would just have to deal with the fact that my dreams and my life were no longer compatible.

10 years later… I went to visit my friend Kara in Florida. I decided that I wanted to go somewhere for my 29th birthday. I saved up my money and left for St. Pete the day after my birthday. Kara and I have been friends since 6th grade. She was also in the science club and we were dive buddies for both years. Kara was able to stay on her dream track and now works as an Oceanographer. She had planned a wonderful vacation for us; we went kayaking with alligators, hiking in treetops of a national park and –Dun Dun Dunnnnnnn– snorkeling with manatees in Crystal River! Best birthday trip EVER! The manatees were everything I had expected and so much more. They love to play and be scratched and tickled and one little guy had a crush on me. He kissed me at least five times. I was finally able to swim with the manatees and I was so happy. That was five years ago and I still grin every time I think about it.

This summer my dreams have been reinstated. I volunteer for St. Jude Children’s ResearchHospital’s-Columbus Office, and at their big dinner event each year at The Columbus Zoo. This was my third year at the event and I finally got to meet Jack Hanna! By the way, he is exactly the same in real life as he is on TV. I knew I only had a minute to speak to him, so I complimented him on the manatee exhibit. I told him that I had been to  Crystal River to swim with the manatees and that it was one of the most amazing experiences of my life. I gushed and gushed for about two minutes straight. Finally, when I came up for air, Jack told me that they need volunteers to help tend to the manatees and aquarium here. All I need to do is take a SCUBA re-certification class. I can’t even tell you how excited I am. I thought I would have to give up on my dreams because of my disabilities, instead, I just have modify accordingly for my abilities

I have several dreams that I gave up, but I’m revisiting them and will do my best to incorporate them into my life. I may not be able to live on a boat, but I can volunteer at the zoo. There is a bathroom next to the exhibit and I don’t need to worry about medical access. I may have Crohn’s for the rest of my life, but now I will have my dreams too. To both of them I say, “Bring it on!”

From Donna Downer to Donna Kay

Posted in Archive Blogs by Healthier Stay on February 27, 2012
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I’ve had an attitude adjustment in the last few years. When I was younger and learning to cope with my Crohn’s disease, I only saw some of my friends 3 times a year. I would go to my friend’s birthday party in June, her annual Halloween party and another friend’s Christmas party. Someone would always ask me how things were going. My usual reply was: My dad’s really sick and in the hospital for…, my brother is really sick and I’m sick, exhausted and in pain. I would expound on all of the symptoms, problems and weird complications that Crohn’s had “gifted” on our family and generally suck all of the happiness out of the room. Merry freaking Christmas! I didn’t realize how depressing my stories were and I didn’t think it was a problem because people kept asking and acting genuinely interested. They are very good friends because I was definitely, Donna Downer. All I focused on were the bad things in my life and none of the good.

 

One day, as I was reciting my problems to my friend, I realized I sounded like a broken record and I told him about the Sunday school class I was teaching. You would not believe his reaction! He had the biggest grin on his face and said, “Oh Donna, I am so glad you have something positive to hold onto in your life!”. I was shocked! I had plenty of great things in my life, but they weren’t the “Headlines” of my conversations. I needed to re-evaluate the way I approached my life, my illness and my family’s problems. Yes, we had a bunch of woes, but we had even more positives. My family dealt with every problem by banding together, we were and are one of the closest families I’ve ever known. We had a wonderful church that was there for support, care and strength on a 24/7 basis. I also had other friends who would pick me up and take me to do things several times a month, just to spend time with me and help me stay sane. All of these great blessings and all I could talk about were my dad’s Toxic Mega-Colon, or my fainting spells {they lasted 2 years and no one knows what caused them}. Yes, my family could give Ripley an entire season of Believe it or Not episodes, but we also could have had a bunch of “very special” Growing Pains too. I just needed to learn how to change my attitude and the synopses of my life. That is so hard, but I’ve learned that Fake it, till you make it is very true and helpful. Sometimes I even keep things too close to the vest these days, but I am a work in progress.

 

I’m still learning when to share the good, the bad and the fugly. A large social gathering is not the place to talk about bowel resections and diarrhea, but I can share how well my treatment is going with Entocort, a “mild” steroid (Ha ha ha). I can talk to my friends in private, sometimes they have to pry it out because, like I said, “work in progress”. Of course I can talk to my family and we work hard to keep each other in good spirits and to lift each other up, no matter what we are going through.

 

One person that I can share everything with is my pain therapist and I see him every week. His job is to listen to me about my problems, my pain and my life, and help me figure the best way to deal with them. I have gone through literally every single emotion I’ve ever known in his office. Being able to talk to someone who has to listen to me, but not pander to me, is truly refreshing. I started therapy to help get through losing my dad. He died from Crohn’s complications and, in less than a week, Crohn’s went from the horrible annoyance that caused us pain, to the terrifying menace that killed my father. I bottled my feelings and tried to stay strong for my family. I kept it up as long as I could and after 3 years I just started to feel brittle and my pain started overwhelming me. I brought this up to my pain doc and he suggested I try the therapy. Just knowing I have a safe place to talk is a huge comfort to me. We worked extensively on my grief and he was one of the first to encourage me to write my book and, by extension, this blog. Along with the head shrinking, he and I also work with relaxation therapy and have had some astounding results.

 

Now that I have these outlets, I don’t feel like I have to regurgitate horrible news to someone I haven’t seen in a while. I can keep my life in perspective and my attitude has improved exponentially. I have more chances to see my friends and, hopefully, they don’t fear seeing me anymore. I want to be social and I love that all of these problems are no longer living rent free in my head. I had to fake this attitude for 2 years and now I naturally lean toward the positive. I’ve gone from Donna Downer the chronically ill girl, to Donna Kay the Chronically Awesome woman and I couldn’t be happier!

Reflections On Shark Week

It’s Shark Week! The one week a year where the cable universe is devoted to the most majestic of underwater predators, the shark. I am a marine biology freak. My dream job has always been, Marine Mammologist, and I love snorkeling and SCUBA diving. Shark week is always a big thrill for me. It’s also a week of reflection. When I think of sharks I think of grace, agility, power, strength and pain. Sharks make me think of pain dreams.

Since I live with Crohn’s, Ulcerative Colitis (UC) and Chronic Functional Abdominal Pain (CFAP), pain is a part of my life every day. Chronic pain comes in many forms, mine include; cramping, burning, stabbing, searing, throbbing and pressure. I’ve learned to deal with most of it through medication, breathing and guided relaxation but there are times when I’ve had absolutely no power over my body. Pain medicine is not designed to take all of your pain away. It’s designed to take the edge off and restore some functionality. The best case scenario, in most cases, is a 50% pain reduction but that can take years and pain is never static. Breathing and relaxation are great to help when you are conscious, but what happens when you are asleep or if the pain knocks you out? I’ll tell you…pain dreams. When I am flaring I get nightmares so intense I actually feel like my body is being attacked. Sometimes I dream of lions but mostly it’s a great white shark literally tearing me to pieces. My pain gets so intense that my brain equates it with an external attack. I dream I’m getting eaten by an apex predator with a giant toothy grin. When this happens I can’t wake up, I start screaming and fighting for my life. Woe to anyone who tries to wake me up because I am apt to punch or kick them and I don’t even know they are there. I just keep trying to get away from the pain.

These horrible dreams were very common when I was first diagnosed, occurring anywhere from a couple a night to several a week. That was a truly frightening time for me, I couldn’t control my body and I was hurting the people I loved. I was most worried about my dad. He was onTPN(nutrition and medicine pumped through an IV) with his IV catheter attached to his heart. If he tried to help me while I was flailing I could have killed him. I was afraid to go to sleep and terrified of what I was going to wake up to. These dreams kept up for about 3 years, through sleeping pills, anticonvulsants, antidepressants, painful muscle blocks and sleep studies.

I finally found a doctor who listened to me; he changed my pain medicine and recommended a pain therapist. Finally, my dreams started to recede as I started a new regimen of opioids and relaxation therapy. I’ve been having a bad flare since January and I’ve only had one pain dream. I think my body has been trained to breathe and relax even when I’m unconscious. My pain keeps growing, but my body’s responses are better and I’m exploring better pain management, including a pain pump. The pump will deliver medicine through my opioid receptors and I won’t be held hostage to my faulty GI tract for pain relief anymore.

As I watch Shark Week this year, I can reflect on how far I’ve come. I enjoy the shows for what they are and celebrate an amazing, misunderstood animal that should be respected. As I watch, I think of my body the same way. Maybe with training, awareness and research we can win the battles against our bodies and save the sharks!


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