Tracey69....I UNDERSTAND YOUR PAIN. My life coach gave me a GREAT reply. When someone asks how I am doing -- say F.I.N.E., which stands for Frustrated, In pain, neurotic, and extremely fatigued. Everytime I tell someone I am FINE, I smile to myself at what it REALLY means! Good luck!

I am so happy I have all of you here who understand,thank God for DS what would we do without it?I love the ideal of the F.I.N.E,I have to keep that in mind.
Love you all
Your friend
Tracey

Tracey, you know that you are not alone in feeling that others don't understand your pain. My husband says he understands, but doesn't even notice that in a 3 hour period I have spent 2 hours and 15 minutes in the bathroom.

My 21 year old daughter was home from college and asked me why I keep a towel on the seat of my new car. I said that it was in case I had an accident. She said she thought I was "past that". I told her that I will never be "past that". She asked when was the last time that happened, I said "this morning, but I was in the house so no one knew about it". I only pray that she will never be able to fully understand, because the only way to really understand is to live it.

yep,I too feel completly alone, nobody not even whom i thought was my closest family understands me or my illness, it's very difficult. I have learnt to hide my feelings and smile, pretending everything is fine keeps everyone happy

My Mom had polyp though luckily benign removed from her lower bowel and they had to reconstruct her rectum she refused to have a colostomy cuz her sister had it for bowel cancer surgery. So she understands me
but the rest of the family keep trying to give us diarrhea from putting irritating ingredients in our food when we get all together and visit. I keep extra pads, diapers and immodium, Etc., with me all the time for such emergencies or they have to give me special privileges to the
closest bathroom and laundry machine, bed
and clean clothes and someone to support me as I get weaker to need help me to the throne. Lol

This is to much there has to be away we can show them how we feel and get them to understand what we feel!We need our family and our friends by are side if we don't hve that then what do we have?

Yes,I feel I'm stuck withy this UC. You can tell friends & family but nobody really understands the pain that we are going through every day. Is kinda depressing for me.

it's very depressing. It's so hard for any one to understand what we go through unless they have been there. no matter how many times I try to explain, I still get those "deer in a headlight" looks.

You know if friends & family don't understand like with my family&friends .I turn to people who have the same problem ,like on this site.Is good to know that I'm not alone with this desease.Just learn to live with it,because it will never really go away,it gets better but with my next stress it will return.well that how it is in my case.....

Stress seems to be what sets me off too. which right now is out of hand. I am afraid I will lose my job. My husband is afraid I will lose my job which isn't helping. I don't know what to do

I totally understand you tch.You just have to see it possitive,I know I hate this phrase too lol.But try not to think about the bad stuff think what you can do to find a different job and start looking now. I was in the same situation about 6 month ago.My husband was looking for a job,it was really hard on me.But it was a matter of like 2 weeks and I almost lost it here,but thank god he has a job for like a year now.Talk to your friends about your fears maybe it helps it did it for me. Good Luck with your job or the one you are going to get,I will pray for you!

Do I feel like being alone ? .......ALL THE TIME ! And I know that's bad, but when you feel like such crap you just don't want to be around anyone so I agree with you this is a very lonely disease.

Yes,it is a lonely desease! Because the people who are not sick they will never understand in what kind of pain we are in sometimes or sometimes all the time.But like i said stress is a big factor with this desease.I can't handle every "normal" day stress,so I feel sick most of the time,but my Husband &my children are standing 100% behind me even so they will never (I hope)understand the pain.And that helps....

P.s. When I said my family don't understand about my desease! I was talking about my parents and siblings!!!!

Absolutely and that's really what's brought me here.....not knowing anyone else I can explain it to (or want to) without feeling like I'm whinging all the time.

It's a type of illness that isn't visible (e.g. a broken leg or you sat in a wheelchair), so you prob look healthy, hence the lack of sympathy or empathy you experience?

It is tough on family and friends because they desperately want to understand and to help, but sometimes they simply can't and that's hard for both you and them to accept.

Just remember that you are def not alone....look at all of us here! lol and talking to people going thru it can release a bit of the stress. Conversely, simply gritting your teeth, putting a smile on your face and doing things you enjoy can improve you quality of life massively and make you treasure the good times. Keep smiling! x