Well, I knew this would happen some time during the month. Life has gotten in the way and I find myself with not a lot of time to write a blog. So, for today’s story, I am going to reprint a guest post I did for The Gutsy Generation. I don’t think I ever posted it on my site so this might be the first time you are reading it. I really enjoyed writing this one so I am so happy to reshare it with everyone.
I look in the mirror and don’t recognize the man I see there. The grey hairs are starting to take over on top. I always seem to have a 5:00 shadow. And, are those wrinkles?? When did this all start? I am pushing 40 on the outside, but inside I am still 15. I can picture it like it was yesterday.
There I am, lying in my bed still in my pajamas. I am sweating from my fever. I am no nauseous that I can’t even think about eating…and come to think of it, when did I eat last. Oh no, time to run to the bathroom. Man, not diarrhea again. What is wrong with me? It’s been a week and I still feel like crap. So, now it is off to a new doctor that my pediatrician recommended. It is someone that is a gastroenterologist. What are they??
Ok, so this exam isn’t bad. Don’t know what he found so let’s go into his office to hear what he has to say. What is that you say…possible Ulcerative Colitis. What is that?? How can I have an ulcer..I am only 15? You want me to go to the hospital for a couple of days and get test done. This doesn’t sound good, but I am so tired, sick and weak that I will do anything at this point.
So, this hospital isn’t so bad. Been here for a couple of days. Everyone seems nice. Oh boy, time for another test. I have to do an upper GI. What is that?? Ok, drink some liquid and get x-rayed…I can do that. What flavor do I want? Can I have vanilla or chocolate…wait…all you have is strawberry?? I hate strawberry. Oh man, this is horrible tasting. There is no way I can get this down. Wait!!!! Don’t put that tube up my nose to force the liquid down…I will drink it. I promise. Just let me wipe the tears away first. I want this to be over.
What a day…oh, hi nurse. Enema? What? A colonoscopy. This can’t be good. But you’re a cute nurse, so I’ll let you give me one.
I will get Demerol and Valium. Ok. They will relax me and take away the pain while the scope is in…ok. Wait…I feel that. Ow, this hurt. Oh my god this really hurts. I can’t watch the monitor because there are too many tears in my eyes. When do the meds kick in? Should I be in this much pain?
Been here a week. When do I get a diagnosis already? Here comes the dr. Ok. IBD. Ulcerative Colitis. What is all this? Thanks for the pamphlet…but what is this disease I have??
That was my short version of how I found out I had Crohn’s Disease. Yes, I was originally told UC but after finding a good doctor, I was told I had CD. This was all back in the 80’s, before computers and the internet. I had no clue what I had. I read the literature from The Crohn’s and Colitis Foundation of America but it never really hit home of what I had. I couldn’t talk to others with the disease and I went through my teens and 20’s without any real knowledge of my disease. I was always told I had a mild case of CD, but going through the journey alone, I had nothing to compare my symptoms to.
Fast forward to January of 2012. I was in the middle of really nasty flare and going to the bathroom 30 times a day. I was on Humira 40 mg every week. I was so depressed that I had convinced myself I was going to need surgery. I thought I was going to need a “bag” and it hit me….I don’t even know what they look like. The internet had been around for a good 15 years now and I never looked up or researched anything about my disease…so here I go.
And that is how I turned my life around and became an online activist for IBD. When I started researching my disease I found a number of inspiring people that showed me that no matter what my disease brings me…it is not who I am. I have a life to live and I shouldn’t let some symptoms run my life. I felt like I was entering a new phase with my disease. I grew up alone with my Crohn’s and there is technology now that can make it so no one would have to ever go at this disease alone. So that is my mission now.
When I write or talk, it is experience and advice that I spew. I want to be able to help all the youth out there that have this disease. I know what it is like to be a kid and have all the problems that come with IBD. Inside, I am still that little kid. Because I lost my childhood at 15, I chose to hold onto it mentally. I have the knowledge of an adult, but the drive of a kid. I like to joke around. I like to explore. I like to have a fun and be carefree. There is time later to act like an adult.
I started www.aguywithcrohns.com with one thought in mind…to help anyone that needed it. I try to give out advice on what I have learned throughout my life so others can learn from it. I want people to know that they aren’t alone and if no one else listens…I do. I am here to listen and help. Doctors don’t seem to truly care much. Friends seem to get annoyed to fast. Parents just want to do what they feel like they should be doing to help, whether it works or not. But online friends seem to listen no matter the situation and are always there. That is who I am. I am only a keystroke away. I might not always have an answer but together we can find it.
As I look back into the mirror, I can still see that 15 year old. The lines are growing. The hair is changing. But I can see him in the eyes. I see the twinkle. I have made it 24 years with disease. No matter what happens…I can live life. The disease hasn’t beaten me…and it never will. And that is the best advice I can give anyone….Never let it beat you…you are too strong.
Hello this is Laurie Evans again. I have left replies to you before. I feel compelled to do so yet again. Your post this morning brought me to tears. Your writing really has a way connecting with me. This year has been one of my worst with CD. I got sick in December of 1999, granted I was 25 and didn’t have to deal with this as a child but like you had no idea what CD was. Actually I got sick in 1999 they thought it was IBS so they treated me for that………….put me on meds and I wasn’t getting any better but they said they take awhile to work. Then the decided it was UC. New meds and again I didn’t get better but they took while to work too. Fast forward to January of 2001 when they finally did a Colonoscopy and realized I had CD. From what I heard it isn’t uncommon for it to take a while to get a correct diagnosis. I have been on all kinds of meds over the years. Asacol, Levbid, 6MP, Remicade, too many to remember. This year has been my worst to date…..first time that I had an accident and couldn’t make it to the bathroom….I just cried! I was on every other week Humiara, Asacol, Levbid and still having problems. Thought is was my IBS acting up because yes, I have that too! Did another Colonoscopy to see I was in a horrible flare (which I didn’t need that test to tell me that). Now I have been on weekly Humiara and they put me on a high dose of steroids…..Entercort. Also found in my last colonoscopy the formations of all kinds of Diverticuli pockets, so Diverticulitis could also be in my future…..lucky me. I guess I seem to be doing better…….I go back in December. He said if I am not better by then I am going off the steroids and back on 6MP! Meanwhile I am a single mother to a 5 year old boy with and Autism Spectrum Disorder. He started Kindergarten this year and it’s been a struggle. Plus he has Play Therapy, Behavior Therapy, waiting on a TSS and I just don’t have time to be sick. Child support stopped coming in September and now I am struggling to make ends meet and to top this off I found out that I am losing the insurance I have at the end of this year!!!! What now this? And I am not suppose to stress because stress is bad for my disease…..all I have is stress. I guess reading your posts makes me feel not as alone. Don’t get me wrong my parents have been great……….yes at the Age of 38 I still depend on my parents a great deal but I think they only person who understands the disease is other people with it. So thank you for continuing to brighten my days with your writings. Sorry I ranted, guess I needed to vent and oddly enough feel “safe” doing so to a complete stranger! Just wanted you to realize how your writing affects me and thank you for continuing to be the “voice” that so many of us have inside but can’t get it out! Oh and if you ever want to use my name, feel free!!!!!
Laurie…you are never alone. I always felt it until this year. Their is such a big community of IBDers out there to help us. And if you ever need to vent..feel free. I am sorry you are having such a hard time. Sadly to enjoy good times, we have to go through some bad ones. Our ride with IBD is like a roller coaster. We just have to sit back, throw our hands in the air and screem. Sometimes we are scared and sometimes we are excited. But it is a very interesting ride. If you ever want to vent, or would like some info on online resources let me know. You can email me at email@example.com
I just found your blog and have been reading it with great amusement. In all the years I have had CD, (I was 13 when diagnosed) am now 43, I have learned to have a sense of humour with all the tests and many of them unpleasant, although I must be the only one that enjoys having a Colonoscopy as I call it my annual detox!
It is very interesting reading your updates and relating to them totally, I guess I just never said it out loud. You put into words what all of us suffers each and every day but now I don’t feel alone. I have never let CD stop me from doing anything and for the last 9 years have moved from England to Canada and now to the USA. I have to say that the manner in which I have been treated for this disease here in the States has been terrific. They say that stress can bring on some added issues with Crohn’s and I would say that moving a lot doesn’t help especially when you have to keep finding a new GI.
My dad is also a Crohn’s patient and was told he had this disease in the early 80’s I just remember my Mum spending hours in the library trying to find information as she thought he was dying. It was a scary time and she never let on how worried she was until I was diagnosed years later so I can relate to your blog. Anyhow I just wanted to say that i am enjoying reading it very much and look forward to reading more.
Sharon, you lived like I have, growing up with a library as a resource, which wasn’t that great. I especially liked what you said..”Now I don’t feel alone”. I think us middle agers grew up in the dark and alone from this disease and that was my main purpose for doing this blog. I want to let everyone know that they aren’t alone. Sharon, you might have been alone in the past, but you will never be alone again.
I also really liked hearing how you have lived in so many places. The moving around must not have been easy with your CD and I would love to hear some of your stories. Hope you are feeling good now and stay strong.