Hey, What's it like to have an ostomy?

This is a question I tend to get quite frequently. Although a great option, it should be one of the last resorts. A doctor will scope you and and determine if your at the point of needing a bag. Im not going to lie, the first mention of an ostomy bag I cried. No one wants to have a third arm sticking out of their stomach. About four months ago I got a loop colostomy put in. The loop means it can be reversed and the col means it connects to my large intestine. Basically the doctor goes in and pulls your intestine to the surface and cuts it and stitches it in place, so your stool comes out in a bag instead of going the long route. Simply put, Its another butthole. Acording to Crohns and Colitis for Dummies, one should not have sex in their stoma. I dont know why that had to be mentioned but some weirdo needs to know not to do that. Anyways after I woke up from surgery I cried again and by day 3 an ostomy nurse came to change my bag. By this point I had named her Ursula so from now on if I talk about Ursula, its not some back talking friend that wont leave me alone. Its my stoma. BTW my stoma was gross in the beginning but after 6 weeks it shrank to 1 and 1/3 inch and is the cutest one ive ever seen. It took a long while of bags popping off and poop flying everywhere before I got the hang of putting my own bag on. Ursula also has a mind of her own. If im angry she farts, if im excited she farts, if im hungry she farts, if i feed her she farts. Basically im my niece's funniest aunt. Socially its hard. I cant wear the clothes I use to sometimes because I dont feel like being stared at. Going to the beach is like being an animal at the zoo, people cant, not look. With that being said, ive learned to be confident in my scars. They are my story and I love educating people about crohns and colitis, but it still upsets me when people stare a little too long or avoid me because they dont know what to say. Heres an idea, look and ask, or look and smile at me, im still a person. A pretty awesome one at that. I guess its also hard because before I had the bag you couldnt tell I was a sick person. I was skinny but I could choose to tell people I had crohns. Now I dont have an option, people can clearly see something isnt right and I feel obligated to explain. I dont want to be seen for my disease. I want people to see me for the funny, smart, kind person I am. Having a bag has taught me to always get to know people for who they are and not their circumstance. Ive learned to laugh at the good times and cry at the bad times. Its ok to cry. Feeling is good, feeling is raw, feeling is real. People say I inspire them with my strength, but in all honesty I cry a lot, I get mad at god for not healing me, I get depressed when I think about my life and all the things I havent been able to do, Things that I thought I would have done by now. I have disgust for the people who complain about lesser misfortunes. I have moments of weakness but then I remember how thankful I am for my loving family, how blessed I am to have a safe place to sleep at night, and I realise that many people face the same problems everyday. I thank god that all some people have to worry about is what someone said about them, because I would never want anyone to feel the pain ive felt. If I could take away all the pain in the world and have it be only mine I would, but I cant. All I can do is help others like me by putting myself out there. To do that I must be true, I must be willing to show the good, the bad, and the ugly. That, I am willing to do because I am proud of the person I am and I hope you can be just as proud of the person you are, whether you have Crohns disease or not, whether you have a bag or a butthole.

Comments

  1. It's been a tough road. As I always say. It could be worse. I am proud of the young women you have become. I hope you are able to help others and that they can reciprocate the support you also need. I love to witness crohnies talking and sharing their experiences. It makes my heart full and leaves me crying. From you biggest supporter M♡M

    ReplyDelete
  2. Thank you sooooo much for sharing your experience!!! I am looking at getting an ileostomy soon to heal my UC - been dealing with it for almost 10 years! That last year has been super tough - constantly on steroids to attempt to control it! UGH - again - thank you for sharing. Alot of tears have flowed to get to this decision, but I think it's the right one at this point. I still have a few weeks to change my mind......but I dont' think I will. Thank you from the bottom of my heart for sharing!

    ReplyDelete

Post a Comment

Popular Posts