The excruciating pain I felt after my first surgery was like nothing I had ever experienced before. Prior to this surgery, I had never broken a bone or needed any kind of major internal surgery. When I woke up, I remember asking for my family. The nurse told me that she would call them down soon-but first we needed to get my pain under control. I actually think in my delirious state I even joked around about my dog Gibson. I can’t recall the joke, but can only tell you that I think my gibberish had the nurse laughing.
It quickly went from jokes to internal pain and torture. I can’t recall a lot, and I usually only remember things in flashes and they are in no particular order. However, I do remember-quite vividly-when they pulled the drain tube out of my stomach and had to sew my stomach back up (all while I watched). In conjunction with that, they also decided to change the bag for the first time at this point. I was so freaked out by the fact that an organ, that is usually never seen by most of us, was now protruding out of my stomach and moving. I cried at the sight of it and felt like an alien. It was like something you’d see on a medical show or a horror film. In that moment, I felt as if my life was one giant horror film. I remember feeling extremely embarrassed, and thinking that if anyone knew-really knew- what I had gone through and that this was the outcome…no one would ever look at me the same. My husband had seen me at my worst, but I was most embarrassed to have him see what his wife had become. I would begin to make jokes that helped deal with my insecurities about having a stoma and the bag. I’d say things to him like, “Don’t be jealous, just because I can do the dishes and take a poo.” I constantly remind him that I’m always multitasking. He found it humorous and although not everyday is laughs and butterflies with the stoma, this was how I communicated to him. I would respond to some of his sarcastic jokes by saying, “I’m the perfect woman, I really don’t poo out of my butt.” I think that’s an inside joke most girls will understand. In front of our husbands/boyfriends/significant others we pretend for the first few months (while dating) that we don’t fart, poo, or do anything of the sort. Obviously, we all know differently-however it’s a façade I know most woman try to maintain for as along as humanely possible. I think people would be surprised to know that after the first surgery I did not go to the bathroom rectally. Not a fart, not a poo-nothing. It was as if nothing existed. However, for a while I would get what we jpouchers call phantom poops…this is what happens when you feel like you should be going but you can’t. You could sit there all day long, and still end up without any results at the end of the day. But the sensation in your stomach makes you feel as if you need to go. It’s a strange concept to imagine unless you’ve dealt with this yourself.
At this time last year I was just beginning to accept the snail as a part of my life. It’s similar to being in a relationship. You’re unsure if you like the stoma or not-you know in your head that you kind of should…but you still find ways to complain about it. The pain from the UC was gone but you just don’t know how to feel about this new invasion. I was never fond of the stoma and I’m still not. It’s annoying and has a mind of its own 100% of the time. I have no control over when the bag will leak/break. Or when I decide to change the bag if it will allow me to do so. I’ve described changing the bag to a friend in this way-it’s like trying to play the game jenga and wipe your butt at the same time.
I remember the very first time the seal broke like it was yesterday. I was sitting at the kitchen table, Josh was sitting to the left of me and my mom was pouring herself coffee. The seal had broken-which now I can attribute to more than likely the swelling going down. When you first have surgery your bloated and swollen, however as the days pass and you still have the same appliance on your body-and your body changes but the molds have already formed to you. I think it’s important to remember this-for all you new ostomates reading this. It could be nothing you’ve done, but your body changes and the appliance doesn’t always catch up. Nonetheless, I was sitting at the kitchen table eating breakfast when I felt the seal come undone. I was beyond petrified. I’m so lucky that I had my mom and my husband both there to assist with the changing process. I became so overwhelmed and nervous I nearly passed out (no joke). I had to lay on the bathroom floor while together my mom and my husband tried their best to remember the order and the steps in which every part of the appliance belonged. The first time the bag breaks its frustrating and you probably won’t be prepared but-it will happen-it will pass and it will be ok. Easier said that done though. As I laid on the bathroom floor, and they put all the pieces to the ostomy bag puzzle together, I felt embarrassed. It was the first time I needed help at home and it just so happened to be Labor Day weekend when I got out of the hospital. So, of course, that meant that the at home healthcare agency wasn’t able to come out to my house to assist with the changing of the first bag. I got through it though, that’s what I remind myself of everyday. I’ll get through it, this too will pass and it’s a mountain now but it’ll only be a grain of sand tomorrow. In the moment, we all get frustrated with this lifestyle. Changing the bag is the equivalent to a volcano. No one can predict when a volcano is going to erupt, you can guess but you can’t be sure on the exact moment-well folks….having an ileostomy is the exact same thing. It’s unpredictable and at times it feels unmanageable. However, during these moments of despair and defeat it’s important to remember that this too shall pass.
2 thoughts on “This Too Shall Pass…”
Your blog brings back so many memories for me . . . our stories are so similar, except I had an infant at the time I was going through all my sugeries. All the feelings you’ve written I could’ve written myself 9 years ago. Just as I did, you will get through it and it awfulness of it all does end. Nine years, one j-pouch, and a new baby later, all those feelings (frustration with the stoma, being so sick, feeling so helpless, relying on others, being in pain, being embarrased but thankful to be alive) seem both so long ago and yet I can remember them like yesterday – I still have dreams about having ostomy bag leaks. I love your photos — keep up the great blogging!
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Hi, I have Crohns I found out I had it 24 years ago & I was extremely sick had numerous surgeries with my last surgery having my colostomy which to an ileostomy. I started with a colostomy in 2000 & let me tell you that smell would clear a house after you went to the bathroom😂😂, but I was still getting extremely ill, but I finally saw a doctor that specializes in Crohns & colitis in 2001 Dr. Stephen Hanauer. It was a true blessing that I was able to get in & see him, my gastro doctor didn’t know what else to do to help get me better ( I too was on IV remecade & tones of other pills) I had just gotten out of the hospital & when I went to my follow up appointment my gastro dr told me she went to a seminar for Crohns & colitis & heard Dr. Hanauer speak & she suggest I see him. She had her nurse call his office to refer me & make an appointment, but his schedule was booked for a few months, but they told her they would call if they had a cancellation. I remember the day after the nursed called his office to schedule me an appointment, I was laying on my couch experiencing another painful episode & the phone rang its was Dr. Hanauer’s office……someone cancelled their appointment & they asked if I could come in. I called my husband he left work & took me to see him. When I went in his office he asked a lot of questions about my pain & where I was having my pain and he told me to lay down on the examine table so he could exam & look at my stomach, during the examination it seem like every where he pressed on my stomach was painful & after he was done with his examination he told me I had to be admitted into the hospital right then & there and I would have to surgery. I started crying hysterically cause that was the last thing I wanted to hear “I had to have another surgery”, but he calm me down & told me what I needed to have done & why and he told me that the surgeon he works with also specializes in Crohns & colotis surgery & he is one of the best in his field. But, I forgot to tell you Dr. Hanauer works at a teaching hospital in Chicago the University of Chicago Hospital. I would recommend anyone who’s extremely ill go to a teaching hospital cause they take the time to find out what’s wrong with you. I stayed in the hospital for Almost 30 days because I developed a blood clot from a procedure I had at another hospital ( I had a central line IV, put in my groan when I was at the other hospital & I develope a DVT) so, I was blessed twice by going to see him, cause all the X-rays & other test I had done prior to my surgery they found out about my blood clot, so I had to wait for another 10 days while they treated me for my blood clot to have my surgery. Oh, I had to have a stent put in my chest to stop the blood clot from traveling when I had my surgery. After I had the colostomy switched to an ileostomy I can honestly say I haven’t had a Crohns episode since 2002 prior to seeing Dr Hanauer. I’m so use to this stoma, it’s my way of living a healthy life….very few people know I have it & I prefer it that way because people can me funny & act strange around you once they know. I’m blessed my husband doesn’t have a problem with my stoma, he still finds me desirable and most of all he’s so happy I’m not sick any longer. I just wanted you to know when I read your blog it brought back a lot of memories & I’m glad you’re learning to adjust. 🙌🏾👍🏽😉. Also, I’m a huge fan of MAFS & Doug & Jamie are my favorites too. I found out about your blog on Jamie’s intagram😁😂
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