Phoenix Rising, Introducing Jacoby Goodwin #crohns #ibd #colitis #crohnsfordummies

I have had Crohn’s disease for a very long time, but it is the kids, teens, and young adults living with this disease that have my heart. It is a struggle for me, but I KNOW it is far worse for those just entering adulthood. We need to make people aware of this incurable disease so that additional funding can be directed toward research. It is never easy to share ones challenges with Crohn's disease, but Jacoby has stepped forward with a willingness that astounds even me. 

Thanks for guesting on my blog this weekend, Jacoby! I appreciate your willingness to discuss your condition and to reveal how far you have come in just six months.  Tell us, why have you decided to come forward? Do you have concerns about stepping up? If so, what are they? 
         
When I was first diagnosed, I had no idea what the severity was and didn’t really think anything of it. I stuck to my old habits, continuing to eat poorly, and never wanted to take my medication because it did nothing. I was as confused as
anyone else was about Crohn’s and could hardly tell people what I was going through. As I started to get extremely sick, I realized that all of this could be a potential learning experience for me and my community, and had no clue how
big it would end up actually being. I do, on occasion, have a few worries. I fear that the advice that I give to my fellow Crohnies may not always work for them like they did for me, but knowing how mysterious Crohn’s is and how
unpredictable and various everyone’s symptoms are, I know that I can’t be right all the time and I have accepted it. I’m just so thankful that I get to give people a little extra hope with my story.

 I get what you mean. Crohn's is so individual. How old were you when you were first diagnosed and did you find it overwhelming?  
      
I remember having digestive issues and flare ups ever since I was eleven or twelve years old, and was misdiagnosed up until I was eighteen. I was told that it was just a weak spot in my back and that I needed to stay active and strengthen it
with weights. Unfortunately, it wasn’t until I started having seizure-like episodes and internal bleeding that the doctors understood that there was something a little more serious going on in my body. The whole experience was
very frustrating and overwhelming. In the back of my mind I felt inferior to the rest of the world because I was so limited on things I could and couldn’t do or eat, but most of all I was scared. I was completely unaware of everything and
had no idea how to react.

How many medications have you been on and what, in your opinion, put you into remission?

When I was first diagnosed, I was only on Pentasa. For those that don’t know, Pentasa is an anti-inflammatory drug called mesalamine. It’s a low dose pill that really is only supposed to be for moderate Crohn’s Disease patients. After my first emergency room visit and colonoscopy, the doctor prescribed Humira. The Humira pen and I never got along. Much like people are deathly afraid of spiders or heights, my biggest fear in the whole world was needles, so I was always
reluctant and “forget” to take my shots. As of right now, I am back on Pentasa. It’s the only medicine I take specifically for Crohn’s on top of my alternative meds. I take iron, calcium, vitamin D, and three other whole food multivitamins.
I also make myself an essential oils pill every single day and, in my opinion, it works better than anything. I take frankincense, digestzen, melaleuca, and lemon or peppermint extract. 
 
How many surgeries have you had in regards to your disease?

I have had three surgeries, but two of them I don’t like to count. The first two landed me in the hospital for about a week. They went in and drained infectious fluid out of my abdomen to relieve some of the pain I had newly been dealing
with. After the last colonoscopy, the doctor told me that the inflammation had gotten so bad that I wouldn’t make it unless it was removed. They ended up taking out a little over a foot of my small intestine and two inches of my large
intestine right at the terminal ileum. 

How does your family handle your condition? I know mine is very overprotective, sometimes too much so. I have adult kids that call me every single day. Do you find your parents and siblings supportive? 
        
My family has been the biggest support throughout this whole experience. They tell me all the time how thankful they are to have me around still and definitely never want to experience anything close to that again, so having said that,
everyone is on my case about my diet, making sure I eat right remembering to take my pills. I honestly could not ask for a better support group in my life and I love them all so much.

 LOL I call my family the Food Police. I hate the rush to the restroom. What do you find most challenging about Crohn’s disease?
      
The biggest challenge for me would be understanding my limits and disciplining myself not to cheat. 

Me too. I have found that giving up bread was pretty easy. Easier than I expected. How do you manage school and social life? 
       
I manage just like any other person. I promised myself that I would not let Crohn’s Disease control my life and to live to the fullest. I still go out and have fun with my friends, I still play lots of golf and I try not to use my Crohn’s as an excuse to not do fun things. I take the necessary precautions and know my limits.

 What was your worst experience in a hospital and what was the best? 
        
The  worst experience I had in the hospital was the fifth or sixth night in recovery. I was hooked up to so many things and I couldn’t sleep. I had literally gone over twenty-four hours without even shutting my eyes. In the morning I was
convinced that I was going to die. I couldn’t stand or walk, I couldn’t eat, I couldn’t even look at people in the face because I was so zombified. It wasn’t until my mom and aunt came in and talked to me. Just talked. They told me I could do this and to not give up. That there were so many people out there that would be devastated to see me just give up. That night I slept like a rock. I woke up the next morning feeling better than I had in ten years. I was full of energy and I was actually excited for once to get up and take my daily walk around my hospital wing. I was doing so good, in fact, that the doctors looked at me and said you look like you are ready to go home, and after being on nothing but a liquid dies for over a month, they gave me french toast, and let me tell you, that was the best tasting meal of my entire life.
 
When you share with friends what you are going through, what do you say?    
    
I  show them my Crohn’s diary. I have taken so many medical classes and I am a Certified Nurse’s Assistant, so explaining things to my friends has been much easier than expected, although I do get stumped once in a while with some
questions. I wish they would come out with a Crohn’s Disease for Dummies to make all of our lives a little easier. 

I would give that book to all friends and family. What is the most important thing you have learned from Crohn’s disease and, if you could share one bit of wisdom for your readers, what would it be?
        
Life is way too short to not enjoy every single day on this earth. You’ve only got one life so live while you got it because one thing is for sure, tomorrow is not promised.

 And lastly, I have to ask this one because, um, well, the girls in the group think you’re kind of hot. So, do you have a
girlfriend?
    
Sweet! Oh my gosh, that’s exciting. No, there is no girlfriend. I definitely would be more than happy to talk to the ladies.

Once again thank you. Now, for all our readers, Jacoby's journey in pictures.

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