Advice

[bear]

Hello to everyone. I am new to this Crohn's Forum. What a wonderful find.
I wasn't sure who to visit with or share my issues with. It isn't a topic easly talked about to anyone. So let me thank you all for sharing and being there.

I was in the first grade when I was told I had Crohn's Disease. I am now 42.
For many years, I hid the pain, symptoms from my parents and doctors. I was so embarrassed. It got to the point where I was being hospitalized once a month the last three years. In May, the doctors had to do an emergency surgery. Due to the fact I waited so long, my rectum and colon had cancer cells. My surgery was 6 hours long. I woke up with my anus being stitched up, no colon, most of my large intestine taken and this bag on my stomach.

It's been 5 months now since that awful day. I feel so isolated and alone.
I feel dirty, gross and unattractive. My partner keeps on saying it's no big deal and we are in this together. It almost feels as if he feels he has to be there to help me.

I still can not look at my stoma when I am naked in the shower. I can't barely even touch it. I just want it gone.....It's looks so abnormal to me.
I have issues with clothing. I have to wear elastic pants like sweat pants and large shirts to cover up. I tried to dress up and the bag is right on my waist line and most pants rub against the bag or my bag looks like a balloon under my clothing.

My left side where the stoma is seems larger than the otherside? Will that go down with time?

I feel so strange to share this information with strangers but I thank you for taking the time to read this and look forward to some advice.

Isolated male.....Bear

 

[Crohn's 35]

Hi bear :welcome: you are lucky to have a supportive partner who is there for you. I understand you are feeling "cut off" from the real world of normalcy , but there are many people here with stoma's and have a wonderful attitude and have learned to lead a normal life. I have NOT had a stoma but I know some day I might be.

Since this is an embarrassing thing to discuss with anyone, we understand and that is normal for us. Cancer in the colon can be cured if caught in time. I am so sorry you had to endure most of this on your own. We are here to help you cope. NOT easy I know. Most of the others who are the forum are either working or at school, they will be along to help you. Take care, one day at a time ok?

 

[Del]

Hi Bear and welcome to this great helpful and supportive forum..
Please no longer feel embarrassed about your condition or your appearance or having these discussions. Before the internet..people truly did feel isolated and alone...but not now.
I work in a hospital and it is quite funny to hear a table full of health care workers all sitting around talking about cleaning a patients bowel movements while tucking into a hearty meal...and not flinching.. We with CD are made of the same strong stuff.
I am sure someone will be a long soon who can answer your queries.....
Take care...

 

[bear]

Dear Pen and Del,

Just on my lunch break from teaching and decided to read CD Forum. Thank you both so much for responding and just reading my words.

First time, I have shared my condition to anyone outside of my partner and my mother, who is a retired RN.

I feel as if the Stoma has taken over my whole life, like it is in control of me.
So how, some way I want to learn to be in control of my body. I have lots of learning to do.

I read from some of these forums from younger people. What wisdom and strength they show me, all of you. I have lots to learn from all of you.

God Bless, Bearanda-wave-t:

 

[Del]

bear

I read from some of these forums from younger people. What wisdom and strength they show me, all of you. I have lots to learn from all of you.

I 100% agree with you on that one bear.
The stories here are almost unbelievable to read...they give me so much strength just reading them.. as you are finding too.
Take care..