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Lonely and scared


Thu, September 13, 2018 3:26 PM

Hey everyone! My name is Mekenzie. I'm 20 years old and was diagnosed in April of 2018 with Chron's disease. I'm a sophomore in college; I'm a nursing major. Getting this diagnosis caused me to have to take a one year medical leave of school. Since my story is long I'll give a brief overview. I had my gallbladder removed, rectal surgery, a kidney stone removed, was diagnosed with beta thalassemia minor, malnutrition, life threatning C-diff colitis, and Chron's disease. I lost a lot of my friends and the majority of my hair. This is the hardest thing I've ever been thru and I wouldn't wish this on anyone. I'm watching my friends move on with their lives but it feels like I'm not moving on with mine. I know that I'll hopefully be starting back in January but sometimes its hard to stay positive. please share your story with me and offer any advice you have. I just want to talk to someone who's been thru this and understands how much life changes after this diagnosis. 

FPO mekenzieb
Joined Sep 13, 2018

Fri, January 04, 2019 2:03 AM

Reply posted for mekenzieb.

Hello!

Everything that you described in your message sounds so awful and you are such a strong person for making it through to this point. I was actually diagnosed around the same time as you and have gone through 5 surgeries since my diagnosis. I am lucky enough to be out of school and to have employers who are super supportive and flexible. I couldn’t imagine going through all this while still being in school, especially with such a difficult major. I really hope you are able to get back to school and continue your studies because this experience will make you a phenomenal nurse and caregiver.

I’ve found that this disease and the pain associated with it really causes me to isolate myself and it’s something that I am trying to work on. I push people away and some people take that as an invitation to leave. It’s sad, but it really makes me appreciate the friends and family members who continuously stick around and those are the people I want to use my limited amount of energy to associate with. If you feel like your support system could use another member, let me know. :)

FPO Boston0225
Joined Jan 4, 2019

Tue, December 18, 2018 8:51 AM

Reply posted for mekenzieb.

Hey! I’m almost in the exact same boat! Also 20 got diagnosed at around the same time as you! I tried to keep doing uni but I could feel everything deteriorating. Failing subjects and struggling to keep up with my social life. I only did one subject in this last semester and only even then just scraped through. I have been seeing Chinese medicine kind of doctors to help me with my eating. I’m hoping that once this flare goes away everything will start to become easier. I struggle to even get up in the mornings just because I have no motivation. I have been trying to reastablish connections with friends by doing common interests like basket ball but I know it’s hard. Hope your doing okay

FPO Popcorn1306
Joined Dec 18, 2018

Sat, September 29, 2018 1:05 PM

Reply posted for mekenzieb.

All right, go back to my original reply later.  Watch these first*:

https://www.youtube.com/watch?v=nbc4csSoMUM (Seattle Children's Hospital)
https://www.umassmed.edu/nutrition/ibd/  (UMass med school, watch both videos)
https://www.today.com/video/mom-s-bakery-venture-blossomed-from-mission-to-help-her-daughter-1331929667590 (This past Friday!)

* from end of my initial reply

Cheers,

Raman

FPO rprasad
Joined Sep 24, 2013

Sat, September 29, 2018 1:02 PM

Reply posted for mekenzieb.

Hope you're doing ok!

(1) You're definitely far from being alone https://www.youtube.com/watch?v=rEGTvgaPQhg 

(2) Definitely try to connect with people and groups in your area

(3) Professionals can definitely help.  A large Swiss study** found that 19%+ people with Crohn's had PTSD from the disease itself.  e.g., check out The Body Keeps the Score by van der Kolk -- some of the therapies in that book are definitely applicable

I've been using SCD** for a long, long while with good results. Definitely check out this site, with content from GI dept at Seattle Children's Hospital:  https://www.nimbal.org/

(There's a supportive FB group for SCD here: https://www.facebook.com/groups/254381904904394) 

You'll be an amazing nurse as you work through this.  Some good inspiration--opposite of 1st video:
https://www.youtube.com/watch?v=nbc4csSoMUM (Seattle Children's)
https://www.umassmed.edu/nutrition/ibd/  (UMass med school, watch both videos)
https://www.today.com/video/mom-s-bakery-venture-blossomed-from-mission-to-help-her-daughter-1331929667590 (This past Friday!)

** https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854716/

 

FPO rprasad
Joined Sep 24, 2013

Wed, September 19, 2018 7:47 PM

Reply posted for mekenzieb.

All the patients here have some things in common for sure, but we're all very unique, and have had unique experiences. Crohn's is just one of those diseases that varies a lot from person to person. I have Crohn's, before this year it was classified as UC since 2005, but I haven't really had much of the experiences you've described. I have yet to have any surgeries, but I am one of those patients that either doesn't respond very well to some medications, or initially responds, then stops responding after a year. I've been hospitalized twice. Last time I even started questioning my immediate mortality. I even found myself crying in my hospital bed, and in general I'm someone who copes pretty well with life's curveballs. I would never say something so meaningless like "try to stay positive", because that's effectively the same as asking a sad person to be happy for no reason. So, I'll ask a question instead. Have you tried everything? Have you gotten a lot of professional opinions from IBD specialists? Have you tried all the drugs out there that exist? If you answer no to any of these questions, then you definitely have hope.

This disease ebbs and flows. There will be bad days, but there should also be good days. Sometimes people get to remission all by themselves by doing nothing in particular. Also, I'd say, just make the threatment of your disease your top priority in life, and try to solve every problem one step at a time.

But if you still find it difficult to cope with on an emotional level when it's all said and done, there are doctors for that sort of thing as well, and seeing one is nothing to be ashamed of.

FPO kumputer
Joined Jul 19, 2013

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