Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical treatments available.

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Serious fear of dying?

Hi there. I'm 20 years old, was diagnosed with Crohn's disease when I was sixteen in 2013. I have had only one surgery and only a few hospital admissions. Currently, I am not on any medications. On the whole, I have been SO lucky. I don't know why, but the biggest struggle I have with crohn's disease is my fear of colon cancer/early death. Right now I live a very very active life, and my disease only minorly inhibits me from living the way I want to. I go to college away from home, and can even occasionally have a drink! I don't know why it is that I have such horrible anxieties over the worst of the worst of what could happen to me, especially when they're not happening now. I so want to accept that this disease is a part of my life and manage it in a healthy way, but every time I'm forced to think about my disease I just completely shut down because I'm just so afraid of dying. Does anyone else feel this way or is it just me? If anyone has, is there any specific ways you've tried to deal with this feeling? 

Replies

JeanCarlin
JeanCarlin

We all have anxiety about what could happen, but right now you are doing great, I don't have Crohn's I have UC, was diagnosed about 6 years ago but am on 2 oral meds and take shots of humira twice a month and still have really bad days. I really don't have any advice on how to cope with the fear cause I don't do all that well myself but it sounds like you're doing pretty good if not on any meds at all and are still able to live a normal life. I know this isn't much help but just try t live your life in the present and don't miss any of your tests to keep track of it. I wish you the best of luck!!
rmb
rmb

I too have UC, not Crohn's but I think most of us have concerns about the future, whether it's about complications from the disease, losing our colons, quality of life, etc. I think if you already have anxious tendencies, those concerns become more in the forefront of your mind. My advice is to try to stay present as much as possible, and to practice redirecting your thoughts when then drift to the fear based thoughts. It's good to be aware of the disease and all that can come of it but that has to be balanced with how you live and feel today. I try to look at the disease as a problem to be managed. When I think of it that way, it feels like it's not this big black cloud hanging over me that is dooming me to a miserable fate. I find exercise, even just talking daily walks helps to keep things in check mentally and emotionally. Yoga and meditation can help too.

Like JeanCarlin said, concern yourself with the stuff you can control, like keeping your appointments, discussing issues that may come up with your doctor, makes sure you have regular tests as prescribed by your doctor, etc.
Scott147
Scott147

Anxiety is a massive problem with IBD (or I imagine any chronic illness). I don't think my fear has been death so much as fear of being dead weight to my family. I'm able to work now, but I've had so many times where I wasn't able to. That was the most depressed I think I've felt, and I'm always afraid of it happening again. It is coming back now because my employer's likely to go out of business. I've found that the thing that helps me the most is just expressing my frustrations. This group has helped with that. When I was first on this site I used the journal feature and few times, and I think that helped. I hope that writing here has helped you.
THibl82
THibl82

I know exactly how you feel i worry about this since i just got diagnosed because i have. Had breast cancer at the age of 28 that my most fear of it going to my colon , may i ask you what kind surgerie they did for you im thinking that what their going. To have to do for me cause i cant hardly leave home without almost having a accident this worries me so much and im getting malnourished because anything that i eat or drink goes right through me i haven't weighed myself but i know ive lost a lot. And would love you visit with you about it , would it be ok if that i add you on here on my page.i hope and pray your doing ok your in my prayers
koftheheart
koftheheart

ok I am new here but I just had a CT and they say I may have it. I already have diverticulitis, so I did a lot of research and found a FB page for the diverticulitis but they also do UC/Crohns, and they use food combining. They have a book and everyone on it states it works so I'm going to buy it and try. The book is PainFreeFoods.com
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