Why do people get shocked when they know I have Crohn's?

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minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2831
   Posted 9/7/2018 12:23 PM (GMT -6)   
My outer appearance doesn't show that I have Crohn's as I make sure to wear make up and look very good no matter how sick I might be. Also, being on pred for many years, has left me some kilograms which made me look healthy. However, whenever I talk to anybody and mention that I have Crohn's, especially those who are aware of the disease, they get shocked. It is as if they want to tell me"You don't deserve this". I don't want to say that at work they couldn't find a similar case of a staff member who got an autoimmune disease and who needed to reduce the teaching hours. What's the propspective of this disease? Tbh, such people's reactions make me feel that the future of my disease is not bright and that I will have to resign or go on pension early though my GI never makes me feel that I'm sick. On the contrary, he tells me I've never prohibited you from doing any activity: do whatever you want.
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
___________________
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 9/7/2018 1:43 PM (GMT -6)   
Minnie, do not let people influence your outlook, that’s allowing someone to get in your head. While people may be aware of crohns they truly are not an expert on it by any means.

We have a friend that has been battling cancer for years. To look at her you would never guess it. So don’t let others drag you down.

Keep doing what you have been doing!
Susie
Moderator in Chronic Pain & Psoriasis Forums

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2831
   Posted 9/7/2018 2:56 PM (GMT -6)   
Straydog, they don't influence me. I think it's inside me. I don't know why I started comparing myself to others. I know I'm different. I know that I cannot do now what I used to do 11 years ago. Maybe I do pity myself sometimes and what my GI has told me a couple of months ago is still vivid in my mind. He said that I might get severe bleeding, uncontrollable diarrhea and that my disease is not mild anymore. I'm very cautious with food and also activity but I feel that as time progresses, I don't feel well though my Crohn's is under control. A friend who got RA and is on another biologic other than Remicade asserts me that these biologics rip energy out of us and that we will never be the same as we used to be in the past.
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
___________________
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 9/7/2018 3:14 PM (GMT -6)   
Minnie, I let myself have a pity party once in awhile for a day only, then I move on. Your drs words of "might", is not a definite thing this will happen. In all honesty, he doesn't have a crystal ball so he cannot predict what may or may not happen. There are many things I use to do that I no longer can do, some related to medical conditions & age. I concentrate on the things I can still do. Food, boy do I ever miss quite a few things I could eat before my resection.


I take things a day at a time. Worrying about the what if's take too much out of us & has no real value when you think about it.
Susie
Moderator in Chronic Pain & Psoriasis Forums

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2831
   Posted 9/7/2018 4:11 PM (GMT -6)   
You're right, Susie. I might be having this pity party because I'm not feeling well. I don't have the traditional symptoms of cramping, diarrhea and vomiting but I don't feel well. There is something wrong but I can't tell what it is.
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
___________________
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

Andrina
Veteran Member


Date Joined Aug 2011
Total Posts : 3154
   Posted 9/9/2018 8:14 PM (GMT -6)   
I agree with Susie.

I tried makeup to look better but with 33 years I'm still not good with it so I stopped. Right now everyone can immediately tell when I get a fever because my cheeks get bright red (they are always red I believe it's rosacea but i don't have a diagnosis. I had red checks constantly since I was a teen). I stopped caring how I look as long as I showered and my clothes are clean. I lost a bunch of weight but it's not really visible because before my flare started I bought bigger pants (I wear them now with a belt) after 5 years of weight gain. I finally reached 65 kg and it was the prime of my life then bam! I flare again. Now I'm back to the weight I was at 5 years ago within just a couple of weeks. That really goes on my substance.
UC since 2002
Flaring since March 2018
Currently on Simponi, Wellbutrin 150 mg, Zoloft 50 mg, plant based calcium
CT scan on 4/18 showed pancolitis
Dexa scan on 10/09/2017 showed decreased bone density but some improvement in the spine

mirowpl
Veteran Member


Date Joined Nov 2009
Total Posts : 527
   Posted 9/10/2018 8:14 AM (GMT -6)   
I being a male i know i have a slightly different perspective, but I consistently get told I am the healthiest looking sick person they have ever seen, this even comes from medical staff. One day I was seeing a new Dr who had all my files. The nurse calls my name and i walk over, she proceeds to restate my name and said you cant be ..please state your birthday...she said she assumed i was in a wheel chair...ugh.

I have had plenty of pity parties the last 24 months with all i have had going on. Only when i finally accepted I needed help and went to a therapist did I finally get comfortable with myself and how i feel and how no one else understands how you feel. I too never wanted to stop working, yet, but the therapist got with my GI and they said I needed to go out on long term disability. I am in that process right now, but I am so much happier being around my family and friends who truly understand me.

I suggest you find a good therapist or such if you can. I assumed I was Superman and could manage the stress since i do it all day at work with my job, but the therapist has been the best thing i have done in a long time. He works closely with my GI and now my PCP o make sure they are addressing me in total.

I hope this helps
surgeries: 2 resections at terminal ilium, open heart surgery, infected lymphocele surgically removed, crainotomy to remove benign tumor; adominal hernia,

Failed: remicade, cimzia, methotrexate, humire, 6MP, entyvio
G
medications: stelara , verapamil , quinipril, labetalol, clorithidone, atorvastatin, alluporinol, elliquis, Xanax ER

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 404
   Posted 9/10/2018 11:28 AM (GMT -6)   
I really want to stop working. I would rather rest and read a book at home, not awakened by an alarm clock in the early morning hours, take a leisure stroll in the afternoon, become a volunteer at my community or at HealingWell forum. But, for the majority of us, we have to work. It's not a choice. I would imagine my heath improving and living much longer If I can afford to travel to receive the best-in-class medical service.

I have done extensive research and found that for most of us with long duration of the illness, we have two main concerns: (1) uncertainty surrounding the future; (2) lack of full energy.

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 9/10/2018 3:24 PM (GMT -6)   
This disease has really taken its toll on me, especially this past year. I am 29, almost 30. I have had this disease for 20 years... so a majority of my life. I have lived a very busy life, most either working and going to school, or working two jobs plus taking care of a family. I have pushed and pushed forward through many struggles.

This past year, I got diagnosed with small bowel cancer due to the many issues of my Crohn's for so many years. I have struggled the most I have in my life, over this past year. I had to leave a new job I had just started after a month due to the four hospitalizations over two months I had, before getting surgery and finding I had cancer, too.

I am now back at work again, working part time. But even that is harder than it used to be. I need fluids three times a week to keep my electrolites balanced. It has been a struggle. I have debated disability, but I cannot bring myself to that at my young age. Though, I may have to if I keep getting hospitalized.

For each person with this disease, it is a different story and different situation. However there is never anything you should feel guilty about, or feel upset about. I have started going to a therapist for the stress of this past year, and I echo the statement above... it is a huge help in trying to manage life (for me, my wife and child, work, and poor health).

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 9/11/2018 6:04 AM (GMT -6)   
I too am a firm believer in getting professional help. Admittedly, I was not so keen in the beginning. I always considered myself being capable of handling anything thrown my way. I just kept pushing the buttons to keep going. I think there are a lot of us like this. When I had to stop working, it felt like it was the end of my world. The emotional aspect is every bit as hard as the physical side. Had it not been for seeing the psychologist, I just don’t know. Her teenage son had a life long chronic illness & she had some great insight as a result.

All we can do is try to do what is best for ourselves. But, never think needing help is a sign of weakness.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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