It’s World IBD Day 2019!! What a better way to celebrate and spread awareness than to interview someone else who has Crohn’s disease!
This is something new! I have spent a majority of my adult life being single. I’ve been working on myself for many years now and originally began my journey with Crohn’s disease with the support of family and friends, but never a partner. I think that the idea of introducing someone to my lifestyle with Crohn’s was kind of a daunting thought. Would someone understand my weird diet restrictions? Would someone understand that some days I have endless energy and others I can’t even get out of bed? Well, the solution to these presented themselves in the form of my partner, Lanny Perelman, who also happens to have Crohn’s. Approximately 780,000 Americans currently have Crohn’s disease (stats) and I somehow managed to find one. As we began discussing our experiences with Crohn’s disease we realized that even though we definitely have common understandings, we have had such different paths to get to where we are now in our diagnosis and treatments.
It was because of this that I realized that sharing someone else’s experiences with my readers could help shed some light on how complicated this disease can be to treat and diagnose because each person is so different! So without further ado, here’s my interview with Lanny!
How many years ago were you diagnosed with Crohn’s? How old were you?
I was diagnosed in 2006-2007. I was around 20 I believe. I don’t remember exactly when.
I know for me it took a long time from when I began having symptoms to when I was diagnosed – Where would you say your journey with Crohn’s began?
My symptoms began in high school, but after being officially diagnosed years later I’d say my journey with Crohn’s officially began.
What were some of your symptoms early on?
My extreme and rapid weight loss was the first sign that something wasn’t right. I was always overweight and I started high school weighing around 230 pounds. I wound up graduating at around 170 pounds – not from dieting or exercising – All from having Crohn’s Disease.
What medications have you taken for Crohn’s? What were your experiences with each?
In the beginning I wasn’t taking any medications because I was young, naive, and living on the road with my band for close to a decade. Once I decided to start taking my health more seriously I was put on a Remicade infusion every 2 or 3 months. I don’t remember Remicade working that well for me unfortunately and a couple of years later I wound up needing my first bowel resection. Next I was started on the Humira injection every week. I didn’t noticed a huge improvement in my health with Humira either. In 2016 I once again needed surgery for my second bowel resection and since then I’ve been on the Entyvio infusion which has worked the best so far. I think that it’s working the best because it is designed specifically for Crohn’s patients, not just any autoimmune disease. I don’t feel I’ve ever truly been in remission since my diagnosis was made all those years ago, but Entyvio seems to give me the most hope that one day I will.
You mentioned some bowel resection surgeries. How many surgeries have you had in relation to Crohn’s?
I’ve had 3 surgeries relating to Crohn’s. Two bowel resections where both large and small bowel were removed. I’ve also had a peri-anal fistula repair. Sexy huh?
What about non-surgical procedures? How many colonoscopies and endoscopies have you had?
I’ve lost count of how many colonoscopies – at least in the 5-10 range. I’ve had only one or two endoscopies so far.
What preps have you used for colonoscopies?
I’ve only used Gavilyte (Colyte) And it never gets any less gross.
What are some other things that you’ve done besides medication to battle Crohn’s disease?
I’m planning on finding quality CBD products and starting that soon. (Read this article regarding CBD & Crohn’s Here!) It’s difficult because this type of treatment is not covered by insurance. Also eating clean diet seems to help with my symptoms sometimes – reducing sugar intake is big one even though I have a huge sweet tooth! But again, my Crohn’s can strike without warning at anytime regardless of what I eat or don’t eat or medications that I take. So I’ve come to the realization that I have to live one day at a time, and be prepared mentally and physically for anything and everything. I also see a psychiatrist to help me work through the mental aspect of Crohn’s. It definitely helps to talk to someone about how isolated this disease can make you feel.
What advice would you give to someone who may have some of the same symptoms that you have had or someone who is newly diagnosed with Crohn’s?
Honestly, be your own advocate. Don’t let people bring you down with their ignorance. Like I said earlier, try to be as prepared as you can for anything. Preparation and being careful will help a lot. Don’t over exert yourself regardless of what people expect of you. They don’t know what it’s like. Research on your own is huge. Read, learn, and experiment. What works for you, won’t work for others and vice versa. And trust your body. Don’t second guess yourself if something doesn’t feel right – You know your body better than any doctor or specialist.
Please feel free to reach out to us if you ever have any questions about medical insurance or digestive health! We have been lucky enough to find support in each other and know how important it is to talk to people who can not only sympathize with you, but truly understand what you may be going through! There are also tons of support groups and resources for more information regarding IBD & Crohn’s:
No one with IBD ever has to feel isolated—the Crohn’s & Colitis Foundation of America (CCFA) is dedicated to providing the support that people with IBD need to manage their disease and live full, active lives. Some of the many resources we offer include:
• Local Chapters: Provide educational programming, support groups, student forums, and events, serving all 50 states and the District of Columbia. Access local information by visiting our website at http://www.ccfa.org/chapters
• Irwin M. and Suzanne R. Rosenthal IBD Resource Center (IBD Help Center): Is a free service designed to provide you with disease-specific information, guidance and support. The IBD Help Center can be reached toll-free by phone at 888-MY-GUTPAIN (888-694-8872) or through email (info@ccfa. org) Monday through Friday, 9:00 am to 5:00 pm Eastern Standard Time.
• CCFA Website: http://www.ccfa.org • Camp Oasis: Co-ed residential camp program for children with IBD. http://www.ccfa.org/camps • Crohn’s & Colitis Community: Online support program http://www.ccfacommunity.org
• I’ll Be Determined: Online education program http://www.ibdetermined.org • GI Buddy: CCFA’s interactive disease management tool that allows patients to manage and track all aspects of their disease, including symptoms, treatments, diet and overall well-being. GI Buddy is accessible online and as an iPhone and Android app (www.ccfa.org/gibuddyhttps://www.crohnscolitisfoundation.org/assets/pdfs/updatedibdfactbook.pdf