Today marks a special weekend for me. Friday was one month from my surgery. I have such a hard time thinking about how much has changed in that short month. I guess I never realized how sick I really was until now. When you were as sick as I was for as long as I was, it becomes routine. It becomes normal. I lived in constant pain, discomfort, and fear for 6 years. One month ago that all changed. Its taken me a full month to grasp the fact that I’m healthy…I don’t know how to handle it. I got some blood work results back today and for the first time in 6 years they were normal. Every single result; normal! I, for the first time, can say my crohns is in remission. None of this would have been possible without my ileostomy. I can proudly say that I am an ostomate, and one month ago it saved my life. Today is National Ostomy Awareness Day, a day that I now feel very strongly for. I, for whatever reason, feel no shame about my disease and my ostomy and am happy to share it with the world, but so many others don’t feel the same. There are nearly 1 million ostomates in the United States, and 120,000 more are joining the “club” each year. So many of these people live in fear because society is not always accepting of anyone who is the slightest bit different. To me, this is just ignorance. People who judge others based on a disability that makes them look different is ignorant. But as an ostomate, I also feel it is doing ourselves a disability by not trying to share our unique stories so that society will learn that we are not gross, but rather just like everyone else except we just don’t have to sit down to poop! I look at my ileostomy bag as a gift. It changed my life and for that I am forever greatful to that little bag. On this ostomy awareness day, I urge all of you to help me bring awareness to IBD and ostomys. Irritable bowel diseases, like crohns, are considered “closeted” diseases, meaning they are not often talked about. In the past few years I’ve seen improvements in the amount crohns is talked about, but its not enough.

Because its ostomy awareness day, I wanted to talk about my ostomy and explain how my bag works a little bit. Before I had this surgery I knew next to nothing about ileostomy bags or how they worked. I had never seen one or known anyone who had one. However, now that I have one, I’ve learned so much about them and have found out that several people I know have them and I just never knew. The bag is very easy to hide and doesn’t have many restrictions associated with it. Once im cleared surgically, I will be able to do everything I was able to do before. Having this bag is not a handicap, I will still be able to swim, play sports, run, and do just about everything else. I probably wont be playing contact football anytime soon, but that’s ok! There are 3 main bag supply brands; Hollister, Coloplast, and CovaTec. There are limitless styles of bags and I’m still experimenting with which style works best for me. The companies are very helpful and I have a case manager at each company who has been helping me find the best style and size for me. They have all sent me different samples of the kinds I want to try and once I find the one I like I will be able to place a bigger order for them. There are different types of bags for different purposes, for example, there are mini bags that can be used when you are trying to hide the bag, during swimming or intimate moments. There are also one piece bags that are very easily hidden under clothes because of how smooth it is. I have narrowed down what I like to two basic styles. There are one piece bags, that you stick directly over your stoma and you cannot take off until you change the bag, and there are two piece bags that have a flange that you stick to your body over the stoma, and then the actual bag clicks directly on to the flange. The two piece bags can be taken off any time without having to change the whole appliance. I have tried both and prefer the two piece bag because I like the idea that I can take it off when I shower or if I’m just feeling claustrophobic. My main issue with the one piece bag was when I tried it I felt trapped that I couldn’t take it off if I wanted to, I had a mini panic attack about it and had to take the whole thing off because of it. The whole appliance is changed every 4-5 days, and the bag is emptied about 5 times a day. The process of changing the bag starts by eating marshmallows. I know it sounds silly, but eating two marshmallows about 30 minutes before you change the bag slows down your intestines and prevent stool from passing while you have the bag off. This trick can also be used when you shower or take a bath if you choose to do so without wearing the bag. Next, you use an adhesive remover to get the sticky part off (its like a giant very sticky Band-Aid). Next, you clean the area around the stoma. The stoma is the intestine that was pulled out of my abdomen. The stoma is about one inch in size and round and red. It feels like the inside of your cheek, its supposed to be wet and red. I have no feeling in it, so it doesn’t hurt. When I was in the hospital (and high on drugs) I named my stoma Rudolph because he looked like Rudolph the red nosed reindeer. We now call him Rudy for short. Cleaning the skin around Rudy is the most important part. The skin is pretty sensitive and having an adhesive on it 24/7 can cause irritation. When I change my bag I try to let the skin breathe for a little while to prevent irritation. Before you re-apply the flange (sticky part that the bag clicks onto) you apply a skin barrier/protectant to protect the skin from getting irritated. So far I haven’t had any skin issues, but if I ever get them I have an ostomy nurse at the hospital who is trained in just ostomys who can give me suggestions on what to do. Next, you basically just click the bag into place. There are a bunch of other smaller little steps in between, but that’s the general idea. The whole process takes about 15-20 minutes and I do it twice a week. Emptying the bag takes about 2 minutes and depending on the day I empty it about 4 or 5 times.

Overall it certainly has been a major adjustment, but I have to look at it as a blessing. The amount of time I spend in the bathroom has been cut in half and the crohns pain is gone! I hope I was able to teach you something you didn’t know about ostomys today so that if you ever encounter someone with one you will know a little bit about it.

Until next time, C

The stoma "Rudy"

Cleaning the skin around the stoma 

Applying the flange 

Finished!