• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

In Hiding

I'm finally coming around to the fact that I've done a great disservice to myself and my friends & family by hiding/denying my condition for so long. I was diagnosed with Crohn's (lower ileum) when I was 24 years old in 2002. One day after lunch at work I was bent over in pain at my desk; like I had been shot in the abdomen. I remember lying in a hospital bed listening to a doctor tell me I can never again drink alcohol or smoke cigarettes. "Yeah right," I thought, "No f****** chance!" I had a colonoscopy and a lower GI / barium what-have-you, and the official word was, "Well, it might be Crohn's, it might be a bad sandwich you ate." I voted for the sandwich and carried on with life as usual, with a decent degree of success, I guess. Success with diarrhea, anyway. And heartburn. And hemorrhoids. So I just accepted that my insides were rotten, and I just have to carry baby wipes at all times, no exceptions. And sure, I can go out to eat, but I have to go home afterwards, no exceptions. Sure, I made a couple exceptions; ALL BAD. You know when you start sweating and blacking out and you wish you weren't in a Record Store?

I never see a doctor unless it's an emergency, and sometimes even then. When I was 30 I waited until Day 2 of bleeding out my a$$, Bubonic-style, before I picked up the phone (from work) and hooked myself up with another colonoscopy to eventually be told an internal roid had burst. What? Now, this was a surprise. I asked the doctor what I could do to avoid this in the future, or what I had done to bring it about, and he said, "Nothing dude. Just going to happen sometimes." Note to self, this reinforced your tendency to avoid treatment.

I did the best I could to hide all of this entirely from my girlfriend, whom I met when I was 30. I actually pulled it off for a couple years too, but eventually... By the way, how are you supposed to think about sex when you're focusing so much of your attention on not s******* yourself? (Can we talk about that, forum?)

So this brings me to where I am now, 33 with another flareup. I'm no stranger to spending a few days / weeks effectively out of order, but this is the first time I haven't had pot during a flareup. I never before realized how much this was helping me; in fact, I honestly thought that I only believed it helped because I'm a pothead and I wanted it to. <------- (actual quote from the voices in my head)

Being without my medicine this time, and "coming out" to my girlfriend (Crohn's Closet, anyone?) about the nature and severity of my condition have led me to give "doctors" another shot. (And by "doctors" I probably mean another colonoscopy but whatever) I have since moved out of state and don't have a doctor where I live, but I'm having my records faxed here and I'm hoping to find a doctor that will tell me something besides, "Eh, you like kinda maybe, so just whatever." And if not, at least I tried. Might have to pack up and move to a Medical Marijuana state, because I'd rather have diarrhea than have diarrhea in jail.

Sorry for being weird. I feel weird. Thanks.
 

David

Co-Founder
Location
Naples, Florida
Hi Arbusto and welcome :) I'm sorry to hear you're having another flareup.

First off, yes, you can talk about that ;)

Second, I'm glad you're heading to a new doctor. I agree that it's time to find a good one who can help you figure out the best treatment regimen so you can live life without constant worry.

I hope you keep us updated as to your progress and I wish you nothing but the best.
 
Hello Arbusto and welcome to the forum...:)
You can talk about most anything here..Crohns related...:)
Hope things start improving for you now.. Great community here for help and support..
Take care....
 
Location
Ireland
Hi Arbusto. I know what you mean about the denial thing. Just wanted to say welcome and hope the forum can provide some answers.
 

xJillx

Your Story Forum Monitor
Welcome, Arbusto! You aren't weird at all! I really enjoyed reading your story. I think many can relate to your struggles.

I am glad you decided to come out. And by joining the forum, I think you'll quickly become more comfortable talking about your Crohn's. Nothing is off the table here - sex, poop, gas, etc. We all know what each other is going through. Make yourself at home.

Good luck with your new doctor and possible colonoscopy. Keep us posted.
 

Jessi

Moderator
Hey Arbusto. Glad you joined the family! Your writing has a way of pulling me in. I wanted to read more, but it was over. You'd be a great author.

I'm sorry that you're flaring again. It's never fun. I really hope your girlfriend is supportive and that you're getting the help that you need. :hug: We're very lucky to have people like that in our lives.

Again, welcome, and I hope you feel well really soon.
 
Arbusto you are not alone. I am so happy to read your story because it reads much like my story. I was a great actor in life hiding my crohns disease, meds, diarrhea, severe pains, bladder fistula, fatigue, sh*ting the pants, throwing away undies....to name a few:>) I couldn't hide the change of weight and I had slip ups of showing pain discomfort in my face, but I always said, "sorry i was thinking about something that happened today and left it at that"...In my career, it was very tough, being on and putting on an act to keep my job or gig...which took me to many different countries where healthcare is not so good...through it all, I survived.

I came out a few times, when I couldn't hide anymore. My biggest coming out was my first surgery, followed by my second surgery, at which point, left me with 22 inches less and a 17 inch belly scar down really well down my treasure trail. The second surgery left me with a 50-50 chance and I survived. Most people accepted me, when I came out. And those that did not were not meant to be in my life.

I too have smoked for 25+ years, because it works best to give me an appetite and slows the muscle contractions in my intestines.

You are not alone.

The toughest thing sometimes is...How do you tell someone you feel like shit when they say, "You LOOK GREAT!

Hang in there Arbusto, don't over stress, it's not like your gay and coming out of the closet like I did 30 years ago:>)) Or is it? hahahaha

jeffrey
 
Top