But you don't look sick!

But you look healthy? 

 

This was something that I heard a lot of while I was sick with Ulcerative Colitis and while I have been dealing with my ostomy.  Invisible illnesses and disabilities can be some of the most difficult things to deal with.  If people can see that you look sick or that you need assistance from something they are more willing to understand and help out. 

I do not like showing off my ostomy bag so I do everything I can to conceal it when I go out.  Also it makes it easier for me if I have my bag secured to my stomach and do not have it just hanging, just think a bag of poop does get heavy after a while so I hold it up with a stomach wrap.  As you saw in my previous post just ask Jude about my bag and he will be more than happy to show it off to you.

The things that people do not understand are that when I was in a flair with ulcerative colitis I was going to the bathroom 20-40 times on a bad day.  Just so we can put that in perspective if I am up from 6am-10pm that is 16 hours.  So if you are going 20 times that is 1.25 times per hour and if it is really bad it's 2.5 times per hour.  I used to get so jealous of people saying that they only pooped once a day or even that they went every other day.  I was praying for several hours off from the bathroom.  Those were also the times that I made it to the bathroom, there were several times that I was running to the bathroom and didn't make it.  So much fun let me tell you when you are at work that you have to sneak out of the bathroom to your car to leave because you had an accident. 

So I went forward to have the surgery.  Now I am just waiting for the wound to heal.  I have been going to the doctor almost every day to have a wound cared for since January 9^th, and I have to pay a copay every time.  Now throw on top of this that I have a bag that I poop into and have to change every three days and I have to empty my bag usually about every four hours.  There is always the possibility that it might leak or pop off like it has when I stand up and get it caught on something.  I have to be careful lifting things so that I do not herniate my stoma.  Also because of my open wound I have to wear diapers ever day due to the wound trying to heal.  So with all of that going on I am to remain positive all the time despite the anxiety and depression that have come along with it and have been exasperated by the prednisone that I was on. 

Yes I am getting healthy and let me be the first to tell you I am very thankful for this but there are days that I wish I had been healthy enough not to have to have an ostomy.  So next time you see someone and just assume that because they look healthy and are not needing your assistance right away that they are ok and do not need a helping hand every now and then.  We all need some support every now and then.  I like to tell Jude all the time that even Superman and Spiderman need help from their friends every now and then.