I'm in Limbo.

[KillJoySpaceBoy]

Hi. I'm 20 years old.

For the last two or three years I've been having gastrointestinal problems. It started with a IBS diagnosis, then inactive colitis after my first colonoscopy. After being medicated for about a year or so I had an upper GI and I was diagnosed with Acid Reflux Syndrome and I've got a 5cm hiatal hernia. That was last summer.

Finally last November I had been experiencing severe stomach pains for a few days and went to Urgent Care, thinking it was my appendix. They sent me to the Emergency room, also under the impression it was my appendix. They gave me an MRI and apparently it wasn't my appendix but my ileum that was causing the pain. I've had another colonoscopy since and I've pretty much been living on vicodin for the pain. We're still not 100% sure it's Crohns, so I may be here under false pretenses. I'm in the middle of switching doctors because the GI I've been seeing the last couple years is pretty useless and literally nothing he has done has cured or helped anything I've been diagnosed with (if they were even accurate diagnostics to begin with). Unfortunately my new guy is apparently in high demand and I've been on the wait-list since January. My appointment is on April 12th.

My parents and I always have always had it in the back of our heads that it may be Crohns. My grandmother died in 2002 of Crohns and it apparently skips generations.

So here I am, in limbo.

I look forward to meeting all of you.

 

[glum chump]

Hi KillJoySpaceBoy:

Welcome to the forum! A year (or more?) is a long time to be in pain and not know what's going on. It's unfortunate that your GI was so unhelpful and didn't offer to do the different diagnostics to see what's going on.

Did you see a GI while you were/are in hospital? Were you prescribed any medication other than pain killers? Any prednisone? There isn't a cure for Crohn's, but there are several drugs that can be used to minimize the disease or induce remission.

April 12th is a long time away, especially when you're in so much pain. I don't think anyone on this forum would consider you to be here under "false pretences"! If you search the forum, there's actually an "Undiagnosed Club" with several other people who have IBD symptoms but haven't had a definitive diagnosis. There's also a lot of information on dealing with and managing symptoms, available treatments, and around diet and nutrition that I've found really helpful.

There is a genetic component to Crohn's. My sisters and mom have it (didn't skip a generation in my family---drats!) with varying symptoms and experiences of the disease.

Take a look around the forum and have a read of some of the posts---perhaps something will resonate for you...

Wishing you well.

 

[xJillx]

:welcome:

Hi and welcome! Unfortunately, many people have to remain in limbo until getting their diagnosis. This can be very frustrating, especially when you are suffering so. And I wish you could have seen your new guy sooner. He must be very good if it takes 4 months to get in to see him! And I sure hope he is, so he can help you to get to the bottom of this. Please stick around and update us with how your appointment goes. I wish you luck and hope you're feeling better real soon!

 

[KillJoySpaceBoy]

Yeah, it's been a roller coaster.
The pseudo GI at the hospital prescribed me vicodin and some sort of anti-nausea medication which I never took.
I've been on Famotidine for about a year, but have been recently upgraded to Nexium for the Acid Reflux.
I was on Dicyclomine for IBS for about two years but I stopped taking it and I feel better.
I'm also taking Venepro because I am also dealing with hemorrhoids (yeah, I know, fun times) that my old GI had no solutions for.

I don't smoke. I don't drink. I used to have a little alcohol every once in a while but I recently decided to stop drinking all together... with all the medications I'm on I don't think I need any more help destroying my liver.

I've got Polycystic Ovarian Syndrome (PCOS) as well. It doesn't have too much to do with anythign GI related but does add to discomfort when everything in my lower torso is swollen.

I'm really looking forward to what the new doctor will tell me. I've been meaning to sign up for the forum because I don't really have a lot of people to talk to about this.

My boyfriend is totally supportive and listens when I rant, but he can't relate to what I'm going through, you know? My mom's pretty supportive of course but sometimes I get scared to tell her everything I'm dealing with or feeling because she goes into mom-mode and worries.

I live with two friends right now and next month I'm moving into a place by myself which I feel will take some of the stress off because I won't feel like I have an audience outside my bathroom.

I hope I can be kind of open here and I look forward to the "I know exactly what you're going through"s. I think I'm at a point where I need that.

 

[AndiGirl]

Hi KillJoySpaceBoy! Welcome to the forum. Your story sounds kind of similar to mine. I went through the diagnosis of IBS, umbilical hernia, hiatus hernia (reflux), and even suspected peptic ulcers. Being in limbo is never fun and you will have your share of ups and downs. After a change of doctors and many different tests here's what they found to be true: Crohn's Disease, acid reflux causing stomach mild stomach errosions, an umbilical hernia, and non-functioning gallbladder. They fixed my hernia when they took my gallbladder out. Please continue to pursue a diagnosis. I am not taking medications that are offering some relief. It's nice to finally know what is wrong. Hang in there!

 

[ameslouise]

I hope I can be kind of open here

Uh, yeah. You definitely came to the right place for that! Feel free to tell your tales of woe - we've heard it all - vomiting, pooping, accidents, sharts, burning a-holes, you name it, we've got it!

It's great to hear you have a wonderful support system. But you are right, there is nothing like talking to a bunch of people who know EXACTLY what you are going thru!

So welcome to our little forum! Lots of friendly and knowledgable folks here and lots of good info and advice!

- Amy

 

[CDDad]

No skip of generation for me. My Mom and I are both plagued with Crohn's. Welcome to the forum and good luck with your new doc.

 

[KillJoySpaceBoy]

I've only heard in passing about the whole skipping generations thing, and I guess I believed it because my grandma had it but no one else in my family is afflicted.

I'm one of the first people to say there's always thousands of people who have it worse than you, but it's frustrating sometimes. In a weak moment when you think about everything that "wrong" with you and it get's kind of hard sometimes I guess. I know I know, cry me a river. All of you, I'm sure, have been through worse, and I respect you all for that and having the courage to share it.

I still don't know a whole lot about my condition. I don't understand a lot of the things I read online, and my old doctor was very poor at answering my questions. Plus my natural information retention is bad enough as it is. My worse fear is to have to get a Proctocolectomy (I know, my grandma had one).

 

[CDDad]

It was my worst fear too. Now that I have it I'm living better than ever. No more Crohn's (at least for now), and training hard for my 2nd half marathon since my surgery.

But enough of that - hopfully your new GI will be great and get you on the right meds and you won't have to think about surgery!