- Joined
- Aug 7, 2011
- Messages
- 75
I was reading a few threads about some people who either just got their stomas or are about to get theirs. I just felt like I should share a few thoughts about mine. I have had my stoma for about 8 months now and I am still adjusting to live with it. There are days like yesterday when all I wanted was to reverse it (mine is a temp ileo, for now anyway). Then there are days when I remember how sick I was and see pictures where people dont even recognize me because of how sick I was. If I can I'll add two pictures to show the major difference the ostomy made for me. Anyways for me there were some major concerns I had when the doctor told me that I was going to need an ileostomy or I may loose my life. I was 23 at the time and the surgery was scheduled for about 5 days before my 24th birthday (What a present right?) I was married but things werent going well and the surgery was the determining factor. I was worried about mu job that I had only had for a little over a year. I am a social worker and I loved my job but the Crohn's was taking a toll on me physically. When the dr told me about the ileostomy I looked at him like he was crazy. No way at 23 did I want a poop bag attached to me, but the look on faces of my parents and pastor and his wife who were there with me made me think the dr wasnt telling me everything. He told me that if I went home and didnt have the surgery my organs would start shutting down because I was too skinny and my body couldnt function anymore. I decided to have the surgery and was given a week to get work things in order since I would be out on medical leave for a couple months. I remember heading to church that Wednesday night before the surgery on Monday and I was listening to the Christian radio station and there was a song by Matthew West about how I know I'm not strong enough to go through everything in life without God's help. I balled my eyes out through that whole song. I got to church and of course everyone knew that I was going to be having surgery, not the exact type but still surgery to try and help the Crohns. My pastor made an announcement and asked everyone to pray for me and that made me and my mom cry. I just remember everything that week made me cry no matter what anyone said. I remember thinking no one will ever find me attractive, what if I dont know how to change the bag, what if people make fun of me, what if people can see it and smell it. I had all these concerns and I didnt even know what a stoma looked like. I had to go to the stoma nurses on Wednesday for pre op stuff and that when she marked my skin for where the stoma would go. I just kept looking for the rest of the week at the mark on my stomach thinking about what it would be like. I did so much research that week I felt very prepared going into surgery. I found out there is so many choices on bags, wafers, and other ostomy items. I found out there was a site called ostomysecrets.com that has wraps and panties just for ostomates. After I had my surgery I still had my concerns and then it came time for me to go back to work. I was terrified! I had a bag that filled with poop and I have a job that required me to sit in court on Tuesdays almost all day! I was worried that as I was sitting there that my co workers would smell it and that I wouldnt of closed it right. Right before I went back to work I went to Sams Club with my stepdad just to go out in public and be okay with it. That is one trip I will never forget. I had heard that when your bag fills up with air you can "burp" it, well I had the bags with a clip on the end and I thought ok let me reach up under my shorts and just burp it cause it is filled with air and I was driving around the wheelchair cause walking was still tiring for me. As I started to undo the clip, poop started coming out and I freaked out! I told my dad we need to go to the bathroom because I have to fix my bag. I got the door of the bathroom and as I stood up I hadnt put the clip on all the way and the bag emptied all over my legs, shorts, the floor, and the wheelchair. I was so embarrassed!!!! I just looked at my dad and he told me to go to the bathroom and clean up myself. By the time I made it out of the bathroom he had cleaned the floor and everything up for me! I have an awesome dad, but boy was I determined I was never leaving the house ever again. I got over that embarrassment by getting online to this forum and reading everyone elses embarrassing stories. Made me feel like I wasnt alone!
Since my surgery I have gone back to work, divorced my husband, and have actually had sex with a guy I was into who didnt even notice the bag! I was so self conscience about having sex with someone who didnt know about the bag so I told him ahead of time and he was perfectly fine with it, he didnt even care if it wasnt in a wrap. He made me feel beautiful and thats just what I needed. Me and him didnt work out but he made me see it may be possible to date again. I have had co workers who just last week told me they didnt even know I had a bag when I made a comment about it. They looked at me like I had two heads actually when I said I had a bag attached to my stomach. I showed her the bag and she was quite fascinated. I have another friend who kinda got freaked out about the bag, but we just dont talk about it not because I'm embarrassed but because its not something he wants to know about. I have another friend who wanted me to show him and his wife the bag and how it stays on and he actually wanted to see my stoma itself but I told him now because we were kinda out in public so I showed him a picture when I changed the bag one time. It honestly depends on the person. I try not to always bring it up but if people ask I tell them very vague details and I've found it they want to know they ask more questions. I remember people on this forum telling me that I would be okay and that life gets better with your stoma and I remember thinking thats them, not me. It really does give you a better life. I can go on road trips without the worry I'm going to have an accident in my pants because we cant find a bathroom. Having a stoma has changed my life, sometimes I dont like the way its changed my life but sometimes I realize I'm finally living again and how much I missed that. I dont have kids so I dont know how kids would react to the stoma, but I have siblings and they are younger then me. My brother thought it was cool and my sister told me she didnt want to see it or know about it, but still asks about it and thinks its cool. I had to be careful after my surgery when I was at church because I always had kids who wanted to be picked up by me. I just had to tell them I had a boo boo and needed to sit but they could climb up onto my lap. I had one child who was sitting on my lap and felt the wafer (I have a two piece system so they felt the plastic ring that clips together) the child just looked at me and I told them that I had a bag with secret powers under my shirt and they couldnt tell anyone about it. They thought it was so cool I had secret powers. You honestly just get used to life with an ostomy even though at the beginning you think that life sucks!
Since my surgery I have gone back to work, divorced my husband, and have actually had sex with a guy I was into who didnt even notice the bag! I was so self conscience about having sex with someone who didnt know about the bag so I told him ahead of time and he was perfectly fine with it, he didnt even care if it wasnt in a wrap. He made me feel beautiful and thats just what I needed. Me and him didnt work out but he made me see it may be possible to date again. I have had co workers who just last week told me they didnt even know I had a bag when I made a comment about it. They looked at me like I had two heads actually when I said I had a bag attached to my stomach. I showed her the bag and she was quite fascinated. I have another friend who kinda got freaked out about the bag, but we just dont talk about it not because I'm embarrassed but because its not something he wants to know about. I have another friend who wanted me to show him and his wife the bag and how it stays on and he actually wanted to see my stoma itself but I told him now because we were kinda out in public so I showed him a picture when I changed the bag one time. It honestly depends on the person. I try not to always bring it up but if people ask I tell them very vague details and I've found it they want to know they ask more questions. I remember people on this forum telling me that I would be okay and that life gets better with your stoma and I remember thinking thats them, not me. It really does give you a better life. I can go on road trips without the worry I'm going to have an accident in my pants because we cant find a bathroom. Having a stoma has changed my life, sometimes I dont like the way its changed my life but sometimes I realize I'm finally living again and how much I missed that. I dont have kids so I dont know how kids would react to the stoma, but I have siblings and they are younger then me. My brother thought it was cool and my sister told me she didnt want to see it or know about it, but still asks about it and thinks its cool. I had to be careful after my surgery when I was at church because I always had kids who wanted to be picked up by me. I just had to tell them I had a boo boo and needed to sit but they could climb up onto my lap. I had one child who was sitting on my lap and felt the wafer (I have a two piece system so they felt the plastic ring that clips together) the child just looked at me and I told them that I had a bag with secret powers under my shirt and they couldnt tell anyone about it. They thought it was so cool I had secret powers. You honestly just get used to life with an ostomy even though at the beginning you think that life sucks!
