Share Facebook
Crohn's Disease Forum » Your Story » Hi, I'm Laura and I just got diagnosed after a year of misdiagnosis.


03-19-2017, 03:00 PM   #1
RomGrl
 
RomGrl's Avatar
 
Join Date: Mar 2017
Location: Salt Lake City, Utah

My Support Groups:
Hi, I'm Laura and I just got diagnosed after a year of misdiagnosis.

Hey hey,

My name is Laura and I'm a 26/F. I just got diagnosed and I'm broken to say the least.

I hope everyone is well and not hurting today. It's like the title says, for a year I started having so many stomach problems. I tried gluten free, dairy free, FODMAPS and even fasting to try and figure out what had been causing my constant need to be in the bathroom and the pain as well.

I had so many tests done, ultrasounds on my vital organs, blood tests, stool tests etc. And they all came back negative. Until one day after being dosed with a cocktail of antibiotics for possible SIBO, parasites, etc I did a stool test and got c.diff.

It reoccured for me 3 times and after finally testing negative two times by EIA and once by PCR. The GI decided something else was going on and had me do a PillCam endoscopy. I had already completed a colonoscopy and endoscopy that came back clean before c.diff and my diagnosis of Crohn's.

It's been a crazy ride. I've lost more than a year of my life and now I feel like the diagnosis is some type of death sentence. I was put on Imuran 50mg and I'm terrified to be on these drugs. I'm honestly scared I don't/won't have much life left in me but decided to look for support because I've never been so down. My thing in life has always been health and I used to be in the gym everyday before my stomach revved up.

Nobody else in my family has had (that we know of) Crohn's. And the doctor was blaming c.diff.
03-19-2017, 03:09 PM   #2
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Laura,

Welcome. I'm sorry to hear about all the problems you are dealing with. I am affected by an unknown form of IBD. I understand your frustration. This is a very good place to come for support, information and to meet new friends.

Feel free to talk with us any time. We support each other through the ups and downs that this disease brings. You can pm me any time as well.


Welcome again,

cmack
03-19-2017, 03:18 PM   #3
Lizzie
Senior Member
 
Join Date: Jun 2011
Location: East Midlands

My Support Groups:
Hello, sorry that you've had to join us but this is a great forum, especially when you're going through a hard time. Crohns isn't normally a death sentence (I've read that on average it takes two years off a person's lifespan) but it certainly feels like it when you're first diagnosed. Some times are harder than others and there's always uncertainty about the course your individual disease will take - that's what I find hardest about Crohns. The drugs are scary but the consequences of not taking them can be worse. Hopefully you will find a way of coping with Crohns day to day and be able to get back to some of your previous routines. The only way of coping emotionally is to try and recognise that many people have their trials, and life should be precious, it can be taken away at any time so we should make the most of it, but I can't pretend it is easy to be philosophical all the time, especially as you're young and it must seem so unfair.
03-19-2017, 03:53 PM   #4
RomGrl
 
RomGrl's Avatar
 
Join Date: Mar 2017
Location: Salt Lake City, Utah

My Support Groups:
Thank you guys both.

Yeah, it def feels super unfair and I'm pretty sure I'm going through some grieving process. I just can't seem to make it down to acceptance. I keep thinking "oh well what's the point of everything now," and I used to be such a different person. I can't believe the last year of my life but I am alive and thankful for that even though sometimes I don't want to do FIGHT anymore...

C.diff wore me down and now Crohn's? I guess this is just the start of everything. I'm thankful to have found a good support group. Everyone seems really chill.
03-19-2017, 04:44 PM   #5
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. I agree with all that has been said.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-19-2017, 05:14 PM   #6
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
Welcome. I encourage you to be patient with yourself. You are in a grieving process, and it takes time. Even now, years after my diagnosis, I have days where I feel sad, frustrated, and angry at my own body for doing this to me. I've had more of those days lately since I had another flare.
But for the past few years, most days I have been able to forget about Crohn's for the most part, not think of myself as a sick person, and just focus on my life. The dietary changes and meds I've chosen became the norm, just part of the routine, not the main occupier of my brain space.
For now, if you need to take time to cry or scream or journal or talk to a friend or counselor - Do it. You don't have to be okay yet, trust that you'll get there. And when you do, you don't have to be okay all the time.
Best wishes and feel free to ask questions as you process this new diagnosis.
03-19-2017, 05:18 PM   #7
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Well put Magnolia. I totally agree.
03-19-2017, 05:25 PM   #8
Amac
 
Join Date: Mar 2017
Hi Laura same name as my sister except I call her loo in one sence it's a shock to hear that you have Crohn's but I think from what I hear the worst part is what you go through before diagnosis believe in yourself and have faith keep seeking advice and if you're not happy say it people will support you on here x
03-19-2017, 05:34 PM   #9
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Amen

03-19-2017, 06:32 PM   #10
RomGrl
 
RomGrl's Avatar
 
Join Date: Mar 2017
Location: Salt Lake City, Utah

My Support Groups:
I hope that it gets easier. I've been pretty depressed about it all.
03-20-2017, 02:24 PM   #11
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
I think feeling depressed is a perfectly reasonable response to a life-altering diagnosis with no cure. It's a lot to take in. If it's too much to process on your own (and with friends, family, here on the forum), I would highly recommend seeing a therapist. When you find someone who is a good fit for you, it can be incredibly beneficial to talk to someone who is a professional and who is not involved in the situation.
03-20-2017, 02:37 PM   #12
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I agree.

03-20-2017, 04:48 PM   #13
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Laura,

How are you doing today? I was thinking of you. Give me a shout some time.


Your new friend,

cmack
03-20-2017, 05:13 PM   #14
RomGrl
 
RomGrl's Avatar
 
Join Date: Mar 2017
Location: Salt Lake City, Utah

My Support Groups:
I'm doing okay, I think... I'm just wondering when my little old me is going to come back. I swear, I haven't been able to focus on anything at this point.

How is everyone else doing? I got some organics today, I am gong to try eating a lot healthier. But then I have the thought "I might as well live happy and eat happy," but that mentality will mess me up more I think...

I love food lol.
03-20-2017, 05:16 PM   #15
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Doing okay. I love food also.

03-20-2017, 05:22 PM   #16
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
Hey, it is depressing to be diagnosed with Crohn's disease for sure. I've been diagnosed a year and still get sad about it but I am also pragmatic about it now. I've probably had it about 10 years or so but was misdiagnosed all that time. I had to have surgery as I was misdiagnosed with appendicitis and they removed all the damage Crohn's had caused. After that I felt fantastic. I travelled the world with friends and my boyfriend for months at a time. After 4 years unmonitored some niggly symptoms resurfaced which led to my diagnosis last year. I have always worked full-time and I am now completing my PhD full-time and go cycling at the weekends. No one can tell or would know I have Crohn's. I'm currently on imuran too and have had no side effects.
03-24-2017, 12:19 AM   #17
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
I'm doing okay, I think... I'm just wondering when my little old me is going to come back. I swear, I haven't been able to focus on anything at this point.

How is everyone else doing? I got some organics today, I am gong to try eating a lot healthier. But then I have the thought "I might as well live happy and eat happy," but that mentality will mess me up more I think...

I love food lol.

I also love food!...And also eat a very healthy, very restricted diet. Sometimes I feel sad about the foods I have given up. Sometimes I get cravings. But I also feel proud of how disciplined I've become. I am stronger. The choices I make on how to treat my body are more educated and conscientious. I have more appreciation for real, whole food - both for its nourishment, and its flavor, because cutting out processed foods and sugar makes the taste buds more sensitive to natural sweet and salty flavors. When I was in remission, my healthy diet gave me more energy than I had before I got sick.
So...I don't think I have gotten back to the old me. I think I've grown as a result from this illness... and while it is the worst, and I would give it back in a second...I also think I've grown in a lot of really positive ways because of it.
03-24-2017, 12:26 AM   #18
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
I also totally relate to not being able to focus on anything. I've been dealing with that since my crohns has flared back up. I'm a grad student with a demanding life...And some days I want to be able to just hit a pause button.

Nice to hear you sounding like you're doing a bit better. And I think it's great, and probably a good sign, that you're making some decisions about how you want to respond to this diagnosis. All the best to you!
03-24-2017, 12:36 AM   #19
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Laura,

You can talk to us any time. We are generally very supportive people.
03-25-2017, 03:50 AM   #20
IrritableBob
Hey Laura! I am 24 and was diagnosed with Crohn's alomst three years ago. Such a diagnosis is not just a physically altering experience, but it changes you mentally and emotionally as well (not always for the worst, as many have pointed out). That being said, it is most certainly tough especeally at our age.
I just passed my one year "anniversery" of being back to full time employement..it is still hard, but hard is not the same as impossible! Keep plugging away, vent/cry when you need to (I find this essential), and embrace small victories as major triumphs.

And come here any time you need to.
__________________
Diagnosed June 2014
Azythroprine (Imuran), Vitamin D3, Mulitvitamin, Probiotics, Essential Oils, DIET!

Previously on Remicade, Prednisone, Ondansetron (Zofran), Promethazine (Phenergan), Omeprazole (Prilosec)
Reply

Crohn's Disease Forum » Your Story » Hi, I'm Laura and I just got diagnosed after a year of misdiagnosis.
Thread Tools


All times are GMT -5. The time now is 02:51 PM.
Copyright 2006-2017 Crohnsforum.com