I had the priviledge to email some questions to Jeff LeVine from A Guy With Crohn's
As you can see, he is just a regular guy who has a random monkey sitting on his shoulder. Please take a few moments to read through his interview below.
Spoiler Alert: Jeff is working on a petition to have Port-a-Potties installed on the side of highways so people like us do not have to dread the ever so fun road trip! Pretty cool!
Keep reading to find out if you have anything in common with Jeff.
----------------------------------------------------------
Please tell everyone your name and website if applicable:
My name is Jeffrey LeVine and my website is www.aguywithcrohns.com
How long have you had Crohn’s?
I have had Crohn’s Disease since 1988.
How long did you have symptoms before diagnosis?
Looking back I probably had symptoms all my life. I would get really sick when I was young and always had what my parents called a nervous stomach. When I was 15 I got really sick with nausea, vomiting and diarrhea. After being sick for a week and losing a lot of weight, I went to a pediatric GI, got admitted to the hospital and had a diagnosis within a couple of days.
If there was a gap between symptoms and diagnosis, why did you wait to go to the doctor?
When I first got sick, we all just thought it was a stomach virus. After I had problems getting out of bed and I wasn’t getting better, my parents realized it was probably something more and brought me to the doctor. I am thankful that my parents didn’t wait weeks or months to help me.
What is the most frustrating aspect of dealing with your condition?
One of the most frustrating aspects of my condition is finding out how to control it. Most people will take medicine and feel better within weeks. For me, I have had adverse effects to almost every medicine out there for Crohn’s. It is very disheartening to constantly try new meds to only have them fail.
How have you overcome this frustration?
I can’t really say I have overcome my frustration. I recently went off Humira which was one of my last hopes. I am now on Low Dose Naltrexone which isn’t an approved med for CD. I am doing well on it but one day I may not and will have to switch again.
What experiences have made you a better person from your dealing with IBD?
One experience that has made me a better person was going through my last flare. I was sure that I had gotten a1000% worse and was going to need surgery. I started researching online and found so many people not only with IBD but many who were willing to share their experiences with no strings attached. I found many inspiring people that helped me calm down, deal with my disease and realize that no matter what happens, my life will go on. Before this, I had pretty much ignored that I had a chronic illness. Now I embrace it and try to help out others in need.
What medications are taking? How much? How long?
I am currently on 4.5 mg of Naltrexone which is known as LDN or Low Dose Naltrexone. I have been on this since late September 2012.
Are they working for you?
I can’t say if the medicine is helping but I am feeling the best then I have in years. I don’t feel any adverse side effects from the medicine.
Have you tried any natural remedies? If so, what? If not, why not?
I have not tried any natural medicines. I currently receive massages once a month but I can’t say that it is helping my CD.
Do you follow any special diet?
I am currently on a gluten free diet. I started this back in January 2012 while in my worst flare. I feel this has helped in controlling my Crohn’s to date.
What are you working on right now to progress your fight against IBD?
Right now I mainly blog on my website to help others know that they are not alone. I grew up with IBD, not knowing anyone with it, and not knowing just what the disease was. I grew up alone and scared. Things have changed over the years and now no one has to go at their disease alone.
Another thing I am working on is to get a petition together to get port a potty rest areas built on our interstates and thruways where there are many miles between rest stops and exits.
How can people get involved with you?
I like to conduct interviews with fellow IBDers and share their stories with others. Another way is to sign my petition on http://www.change.org/petitions/us-dot-federal-highway-administration-create-port-a-potty-rest-stops-on-side-of-interstates-and-thruways-2 to help get port a potties put on our thruways and interstates where there are long stretches between exits and rest stops.
What changes have you seen in this arena in the last year and what do you think is changing for the upcoming year?
I have seen a lot of new medicines come out but unfortunately they have a lot of negative side effects. I know of one study that shows great potential for a vaccine for IBD. I am hoping that in the next year that this will go to human trials. If we can get a vaccine, to me that is one step closer to a cure.