*Warning - I composed this post whilst in a bit of a huff - sorry!*
WORLD WE NEED TO HAVE A TALK!
Crohn's Disease and Ulcerative Colitis are thought to be down to an abnormal gut reaction or imbalance of bacteria in our guts/colons triggered by an unknown environmental trigger. In the average person there is 'good bacteria' fighting off the 'bad bacteria'. When it comes to those with the illness it means our good bacteria is working over time and trying to fight off an infection (the bad bacteria) which does not even exist. So instead of attacking the bad bacteria, it attacks the wall of our intestines instead. This leads to inflammation and ulcers, cramps and pain.
Main symptoms just to get you up to speed are vomiting, fatigue, more trips to the loo, loss of appetite, weight-loss, swollen joints and many more. Not to mention all of the secondary symptoms from medications and problems caused by taking these long term. Alongside these there are things like Anemia, anxiety, depression etc!
My friends and family are aware that I have Ulcerative Colitis, I have told them TIME and TIME again. It either doesn't sink in, they FORGET or they don't know anything about it. Which I think is the most frustrating thing about this whole illness. People are keen to chip in with their opinions before even reading up on the illness.
I have a LIFE LONG INCURABLE ILLNESS. This means I will have Ulcerative Colitis FOR LIFE. (Unless they come up with a miracle cure, in which case we can all look back at this post and you can all prove me wrong.) For the time being, there is no cure. Cutting out a persons colon is a drastic treatment option NOT a cure for Ulcerative Colitis. Nor is it a guaranteed fix as a diagnosis of Ulcerative Colitis could be incorrect and in actual fact the person has Crohn's Disease (believe me, this happens) which means chopping out your colon will be of no benefit to them at all as Crohn's Disease can effect the whole digestive system!
I know you all mean well by sending me well wishes "hope you are well soon" "I can't wait for you to be better" and so forth. I don't have the flu. My illness is NOT GOING ANYWHERE or result in me becoming the 'old me' you once knew. I am now A NEW ME. Maybe this new me is a little more grouchy ha! It is here to stay - lucky me <-- this is sarcasm.
There is NO proven research to suggest that Crohn's Disease or Ulcerative Colitis are fixed by throwing all of your pills and medication in the bin and simply changing your diet. It is not proven so STOP suggesting it's just a diet change. I have read people say they have managed to come off medication because they tried a special diet, well done you. My best guess is that you have succeeded in reaching 'remission' which I imagine to a newly diagnosed patient may seem like their illness has improved...it will return, maybe not next week/month or year but it will be back don't take your eye off the ball. I am glad it has worked in your case. SUGGEST IT TO ME and I will probably compose a rather hostile reply. I am not interested in your magical grown purple carrots from pixie land, I just don't want to know about them.
Crohn's Disease and Ulcerative Colitis are pretty serious illnesses. Many with Crohn's Disease and fewer with Ulcerative Colitis go on to have major surgery to try and correct things. Surgery of any kind, no matter how big or small IS A BIG DEAL.
These illnesses come with HIDDEN dangers like isolation, loneliness, depression, anxiety, sadness. Even though a person does not LOOK sick please do not make the assumption that they are well. "But you don't look sick". Those suffering are super good at putting on a brave face. Through our illness we become driven, suborn, and unstoppable so chances are you will think we are fine. We are NOT fine, we are just super good at hiding it.
If you see me out, don't throw it back in my face. "But you were out the other day", yes and where was I the rest of the month? oh that's right, CONFINED TO MY HOUSE!! Stop making me feel bad on the one day I manage to muster the courage and strength to leave my front door. Stop punishing us for trying to lead a normal existence. Our illness has not magically VANISHED, we are simply ploughing on with life regardless of how sh*tty we feel.
PLEASE DO NOT nag, coax or persuade us to join in an activity if we have politely declined. CHRONIC FATIGUE comes along with our happy little illness. Think of your worst hangover, now imagine that staying with you day after day. I'm not talking 'sleepy' I'm talking "I can't think because it feels like my eyeballs are falling out of my head" kind of tired. Therefore, NO amount of nagging, pleading or begging will get us to show up to an event if we have thrown our hands up and admitted defeat due to tiredness.
Don't look to me for sympathy when you have the sniffles. I know you're feeling a little bleh but it is NOTHING compared to what I have been feeling like for YEARS. There is NO OFF SWITCH. There is never a break from Crohn's Disease or Ulcerative Colitis. It is with you 24/7 and is on your mind even when you dream! It's just there. Never leaves.
IBD (Inflammatory Bowel Disease) is NOT the same thing as IBS (Irritable Bowel Syndrome) TOTALLY not the same. It is like black and white - not the same. Neither is it like "I had food poising once, I felt rough" or "I had colitis once". No - not the same, not even close.
I CAN'T make plans with you because chances are I will spend the few days leading up to our big day out stressing and worrying if I will be well enough. Which means by the time the big day comes around I will be feeling poorly, have a HUGE knot in my tummy and will have to let you down. Please know that this IS NOT MY FAULT. I am not trying to be awkward by simply not showing up - I'm sick.
I CAN'T make plans with you because chances are I will spend the few days leading up to our big day out stressing and worrying if I will be well enough. Which means by the time the big day comes around I will be feeling poorly, have a HUGE knot in my tummy and will have to let you down. Please know that this IS NOT MY FAULT. I am not trying to be awkward by simply not showing up - I'm sick.
Both Crohn's Disease and Ulcerative Colitis will be with us FOREVER AND A DAY unless some super duper genius comes up with a CURE in which case I will quite happily get down and kiss his/her shoes!! Until then I would very much appreciate it if you would refrain from insulting us by thinking you know best when A) you have never heard of the illnesses, B) never read up on it or C) you don't have the illness yourself but think you know all the answers.
Please know that I AM TIRED. I do my best to 'blend in' and be as close to the OLD ME that you once knew. The truth is I am tired, I can't do all of the things I was once capable of doing. I don't have the strength to fight you as well as my illness. I have come to the stage where I DON'T CARE what you think of me, either accept me the way I am - with all of my stupid NEW quirks or bugger the heck off!
What I want most is for people to be EDUCATED about these illnesses so that we can stop sprouting silly things without even thinking. We have enough going on and to deal with, without the added pressure of people and their silly opinions. There are loads more but I have kept you here long enough.
Please know that I AM TIRED. I do my best to 'blend in' and be as close to the OLD ME that you once knew. The truth is I am tired, I can't do all of the things I was once capable of doing. I don't have the strength to fight you as well as my illness. I have come to the stage where I DON'T CARE what you think of me, either accept me the way I am - with all of my stupid NEW quirks or bugger the heck off!
What I want most is for people to be EDUCATED about these illnesses so that we can stop sprouting silly things without even thinking. We have enough going on and to deal with, without the added pressure of people and their silly opinions. There are loads more but I have kept you here long enough.
There - rant over! I'm off for a lay down :D
