Last weekend Taylor came into town to celebrate my 30th birthday again! She is the best!! This time around I dare to say I was more fun than last time because I don't have to care for the ileostomy anymore (that thing stressed me out). It was much needed Taylor time! My life is finally getting to a healthy chapter and she is about to start a different chapter in hers. It's awesome to see her dreams becoming a reality! Our friendship finds a way to grow through these different chapters of life and I love that.
Dana and I had a belated birthday celebration with some of the MarathonFest ladies while Taylor was in town. We went to dinner downtown and saw a show at Sak Comedy. Special shout-out to Lynn for celebrating my birthday again!
Taylor started a vlog! Check it out and subscribe to follow along as she begins a new chapter.
This is the video she made during her visit for my birthday:
https://youtu.be/0v7IrOcP91Y
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Showing posts with label ileostomy. Show all posts
Showing posts with label ileostomy. Show all posts
Sunday, June 17, 2018
Wednesday, May 30, 2018
Fart in a Bottle
Kim has been in town for the past week and she leaves to go home tomorrow. I wish we had more time to spend together. At dinner tonight with my family, I reminisced about the meltdown I had the last time she was in town and how far I have come since then. During Kim's last visit, I was just about a month into recovery from my first surgery. When she hugged me before she left to go to the airport, I lost it. I sobbed about how overwhelmed I felt with the stoma and ostomy. I cried because recovery was hard and it sucked. Tears also found my face-cheeks because I knew I was going to miss her. I was a mess. I felt defeated even though surgery went better than expected.
My family was shocked to learn that I had been overwhelmed and emotional about the surgery and ostomy. Is that a testament to my ability to keep things bottled up? They couldn't have known I struggled coping with my new reality if I didn't tell them. For having uncontrollable bowels at times, I sure know how to keep shit to myself. My instincts were to avoid feelings, bury them, and hope they went away. For the most part, it worked. My emotional maturity is questionable. I don't know what it was about that moment with Kim that cracked the bottle with the things. Once she left, I collected myself and put the things back in the proverbial bottle.
I hugged Kim goodbye tonight and I didn't have a meltdown. There weren't any feelings I was suppressing either. I am a lot stronger emotionally and physically than I was a few months ago. I can't wait to see her in August!!!
I think if I trapped a fart in a bottle and I left it in there long enough, eventually it would not stink when I opened the bottle. I also think if I bottle up feelings long enough, eventually they will lose their potency when/if the bottle gets cracked. I could probably afford to get better at expressing myself. But then again, I think my "fart in a bottle" analogy is pretty fucking expressive. It could also be absolute bullshit.
My family was shocked to learn that I had been overwhelmed and emotional about the surgery and ostomy. Is that a testament to my ability to keep things bottled up? They couldn't have known I struggled coping with my new reality if I didn't tell them. For having uncontrollable bowels at times, I sure know how to keep shit to myself. My instincts were to avoid feelings, bury them, and hope they went away. For the most part, it worked. My emotional maturity is questionable. I don't know what it was about that moment with Kim that cracked the bottle with the things. Once she left, I collected myself and put the things back in the proverbial bottle.
I hugged Kim goodbye tonight and I didn't have a meltdown. There weren't any feelings I was suppressing either. I am a lot stronger emotionally and physically than I was a few months ago. I can't wait to see her in August!!!
I think if I trapped a fart in a bottle and I left it in there long enough, eventually it would not stink when I opened the bottle. I also think if I bottle up feelings long enough, eventually they will lose their potency when/if the bottle gets cracked. I could probably afford to get better at expressing myself. But then again, I think my "fart in a bottle" analogy is pretty fucking expressive. It could also be absolute bullshit.
Monday, May 7, 2018
Hello from the Other Side
I fell a little behind (haha "behind") on blogging. I had my post-op follow-up appointment at the Cleveland Clinic on April 9, 2018. They lifted all of my physical and dietary restrictions and I do not have to go back unless I have major issues! The wound where Scarlett used to be has completely scared over. I finished all three of my Remicade loading doses and I am officially on the eight week schedule. According to my gastro, we no longer have to monitor the stricture I had closest to my rectum because it's not there anymore! That means fewer rectal exams!!! For the most part, I am doing well. Shitty days are to be expected and thankfully they have been few and far between.
Sunday, February 25, 2018
One Less Asshole
I have finally been cleared for ostomy reversal surgery at the Cleveland Clinic on Wednesday, February 28, 2018. The colonoscopy and biopsy results came back showing mildly active Crohn's disease in my rectum and throughout my colon.The active inflammation won't keep me from moving forward with surgery though. It sucks to be told Crohn's is active again. I haven't had a dose of Remicade since September 5, 2017. My gastro thinks it's best to wait to start back on Remicade two weeks to a month after surgery.
At my pre-op clearance appointment with my primary care doctor, I had lab work and a urinary analysis (UA) done. The UA came back showing a urinary tract infection (UTI). I'm skeptical that it was really an infection because I had zero symptoms. They prescribed Cipro, an antibiotic, and asked me to come back in to get another UA. The second UA also came back showing a UTI even though I had taken Cipro.They prescribed me a different antibiotic (Sulfamethoxazole-TMP). I can't bring myself to believe that the alleged UTI was really an infection as I had not experienced any symptoms. I considered not taking the second antibiotic at all. However, after I spoke with one of my nurse friends, I decided to only take the second antibiotic for three days instead of the prescribed five days.
Surgery is only three days away! I changed my ostomy appliance for the last time today. I'm still trying to wrap my head around it. In just a few days, Scarlett will be gone and I will be shitting out of my original asshole again! The world will soon have one less asshole in it. This makes me happy! I went into the first surgery expecting to have an ostomy for the rest of my life. Three months later, I find myself going into the second surgery to reverse the ostomy. It's mind boggling! Recovery will have its challenges, but I am ready to get through another surgery. I can't wait to put this behind me.
Surgery time is to be determined on February 28th. They expect surgery to take about two hours and they expect me to be in the hospital for two to four days.
At my pre-op clearance appointment with my primary care doctor, I had lab work and a urinary analysis (UA) done. The UA came back showing a urinary tract infection (UTI). I'm skeptical that it was really an infection because I had zero symptoms. They prescribed Cipro, an antibiotic, and asked me to come back in to get another UA. The second UA also came back showing a UTI even though I had taken Cipro.They prescribed me a different antibiotic (Sulfamethoxazole-TMP). I can't bring myself to believe that the alleged UTI was really an infection as I had not experienced any symptoms. I considered not taking the second antibiotic at all. However, after I spoke with one of my nurse friends, I decided to only take the second antibiotic for three days instead of the prescribed five days.
Surgery is only three days away! I changed my ostomy appliance for the last time today. I'm still trying to wrap my head around it. In just a few days, Scarlett will be gone and I will be shitting out of my original asshole again! The world will soon have one less asshole in it. This makes me happy! I went into the first surgery expecting to have an ostomy for the rest of my life. Three months later, I find myself going into the second surgery to reverse the ostomy. It's mind boggling! Recovery will have its challenges, but I am ready to get through another surgery. I can't wait to put this behind me.
Surgery time is to be determined on February 28th. They expect surgery to take about two hours and they expect me to be in the hospital for two to four days.
Tuesday, February 13, 2018
My Ordinary Reality
If you endure something long enough, it will slowly become your new normal. This post is about my new normal. The forthcoming sentences and pictures have strangely become my ordinary reality during the past few months. It may be disgusting. I can't close my browser to stop being repulsed by my new reality though. I have to deal with this shit no matter how nauseating it is at times. It sucks, but I'm getting better at it.
My preferred way to empty the shit in my pouch into the toilet is to lift the toilet seat and get on my knees to get closer to the water line so that I decrease the amount of splash caused by dumping the shit into the toilet. This is hard on my knees and troublesome when the floor is wet. Before I got the ostomy, I would never touch a toilet seat outside of my house. I'm great at squatting and hovering. lol Now, I find myself touching the toilet seat with my hand in every bathroom I use. There is nothing neat about dumping the shit into the toilet. Even though I reduce splatter, I do not eliminate it. It is common for shitty toilet water to splash back up onto the toilet rim, my hands, arms, and/or clothes. I use wipes and/or toilet paper to clean the opening of my ostomy before rolling it to close it and sometimes my finger pokes a hole in the wipe/toilet paper causing my finger to make direct contact with shit.
I also come in direct contact with my shit on change days. Scarlett is almost always producing output while I change the ostomy appliance. I inevitably end up getting shit on me during the process. I recorded Scarlett shitting on me this morning, but due to technical difficulties I could not upload the video on here. You'll have to settle for pictures instead.
My preferred way to empty the shit in my pouch into the toilet is to lift the toilet seat and get on my knees to get closer to the water line so that I decrease the amount of splash caused by dumping the shit into the toilet. This is hard on my knees and troublesome when the floor is wet. Before I got the ostomy, I would never touch a toilet seat outside of my house. I'm great at squatting and hovering. lol Now, I find myself touching the toilet seat with my hand in every bathroom I use. There is nothing neat about dumping the shit into the toilet. Even though I reduce splatter, I do not eliminate it. It is common for shitty toilet water to splash back up onto the toilet rim, my hands, arms, and/or clothes. I use wipes and/or toilet paper to clean the opening of my ostomy before rolling it to close it and sometimes my finger pokes a hole in the wipe/toilet paper causing my finger to make direct contact with shit.
I also come in direct contact with my shit on change days. Scarlett is almost always producing output while I change the ostomy appliance. I inevitably end up getting shit on me during the process. I recorded Scarlett shitting on me this morning, but due to technical difficulties I could not upload the video on here. You'll have to settle for pictures instead.
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My stoma is now 7/8", which is just slightly smaller than a quarter.
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I set out my ostomy supplies to prepare for change day.
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Oh no, Scarlett is about to blow!
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She always thinks it's a good time to shit when she's free. She's a non-stop asshole like that. I'm 30 years old and still shitting myself regularly.
Tuesday, February 6, 2018
Birthday Weekend 2018
I don't know where to start. I felt special and loved this weekend even though it didn't go quite as planned. This past Friday, Taylor came to visit and she arrived at the house before I got home. Without getting into the gritty details, my mom said and did some things that were mean and not hospitable to Taylor. It upset Taylor to the point of tears. When Taylor told me she didn't want to stay at my place on Friday night, I didn't blame her. I was so mad in my car on my way home when I found out what happened that I wanted to cry! Taylor did not deserve to be treated that way. My chest still feels heavy from what happened on Friday. While it annoys me to be having these feelings, it is better than being numb at the moment.
I drafted a whole post on the bad part about it along with insight on my relationship with my mom, but I can't bring myself to share it in its entirety. I always try to keep my grievances to myself, so I'm going to share a little background on the drama that built these walls around me instead of sharing something that may cause a loss of dignity. Somewhere along the way enough proverbial stones were thrown at me for me to become numb to the pain. I don't care (at least that's what I tell myself) because it isn't worth the fight anymore. Don't get me wrong, I'm not innocent in this drama. At some point though, I realized the drama made me someone I didn't want to be and I closed myself off. I flipped an emotional switch. I stopped playing the game. I built these walls around me and I struggle to let anyone in because of it.
Taylor apologized for not being strong. I apologized for my mom. Taylor doesn't have the walls protecting her that I had. She isn't numb to the pain my mom's words can inflict and my mom's words cut her deeply. It devastated me to see the emotional pain my mom caused Taylor. Suddenly, I was no longer numb to my mom's bullshit. This time, my mom's words cut me. Taylor is stronger than she gives herself credit for. After we had time to talk about what had happened, she told me not to give up on my mom.
Big sister to the rescue! Lynn, didn't hesitate to welcome Taylor and I to stay the night at her place. I was a little terrified to be having my first sleep over since getting the ostomy. It helped that I could make myself at home and use the bathrooms whenever I needed to without feeling embarrassed. We snuggled on the couch and watched T.V. Taylor and I had tequila. It was my first time having alcohol since surgery and other than having a burning sensation around my stoma in the middle of the night, it was okay. A huge shout out to Lynn for taking us in!
Lynn had to leave early in the morning. She was awesome and let us sleep in. Taylor and I had a fun day on Saturday spending time together and catching up! We went to the Winter Park Farmer's Market where I bought Girl Scout cookies. We strolled around Park Avenue. Taylor had her wedding ring cleaned. We ate lunch at he Cheesecake Factory and our waitress recommended a nail salon close by for pedicures. Taylor treated me to a pedicure. They used a cheese grater to remove all of my dead skin. I don't think my feet have ever been this smooth before. After getting our nails done, we went to the Florida Mall to shop for some ostomy friendly shirts I could wear to work. By this time, my pouch was full and it was easy to tell if the shirts I tried on were loose enough to hide the shit in the bag under the shirt. I got two shirts courtesy of Taylor! Thank you for spending time and money on me, Taylor! I love my feet and I love my new shirts!
When we were done at the mall, we went back to my place. We kept to ourselves and didn't interact with anyone else at the house. The tension in the house was a little awkward. Soon enough Lynn arrived for movie and pizza night in my room. We ordered pizza and watched the first and second Miss Congeniality. I enjoyed our relaxing time together.
Sunday, Taylor and I relaxed as I prepped for my colonoscopy. I was on a clear liquid diet all day. Taylor walked with me while I went rollerblading. We took a three hour nap and we watched Wild Hogs on Netflix. We watched part of the Super Bowl with my family. My mom acted as if nothing had happened. It was stressful and weird. I did an enema before we went to bed around 8:30pm.
I woke up at 4:30am on my birthday to do another enema before Taylor took me to my colonoscopy appointment. I'll blog about that later. After my colonoscopy, we stopped at Wawa and Taylor took me back to my place. We made the most of our time together! I can't wait to celebrate my 30th birthday for real when I'm fully recovered from my next surgery.
Big sister to the rescue! Lynn, didn't hesitate to welcome Taylor and I to stay the night at her place. I was a little terrified to be having my first sleep over since getting the ostomy. It helped that I could make myself at home and use the bathrooms whenever I needed to without feeling embarrassed. We snuggled on the couch and watched T.V. Taylor and I had tequila. It was my first time having alcohol since surgery and other than having a burning sensation around my stoma in the middle of the night, it was okay. A huge shout out to Lynn for taking us in!
Lynn had to leave early in the morning. She was awesome and let us sleep in. Taylor and I had a fun day on Saturday spending time together and catching up! We went to the Winter Park Farmer's Market where I bought Girl Scout cookies. We strolled around Park Avenue. Taylor had her wedding ring cleaned. We ate lunch at he Cheesecake Factory and our waitress recommended a nail salon close by for pedicures. Taylor treated me to a pedicure. They used a cheese grater to remove all of my dead skin. I don't think my feet have ever been this smooth before. After getting our nails done, we went to the Florida Mall to shop for some ostomy friendly shirts I could wear to work. By this time, my pouch was full and it was easy to tell if the shirts I tried on were loose enough to hide the shit in the bag under the shirt. I got two shirts courtesy of Taylor! Thank you for spending time and money on me, Taylor! I love my feet and I love my new shirts!
When we were done at the mall, we went back to my place. We kept to ourselves and didn't interact with anyone else at the house. The tension in the house was a little awkward. Soon enough Lynn arrived for movie and pizza night in my room. We ordered pizza and watched the first and second Miss Congeniality. I enjoyed our relaxing time together.
Sunday, Taylor and I relaxed as I prepped for my colonoscopy. I was on a clear liquid diet all day. Taylor walked with me while I went rollerblading. We took a three hour nap and we watched Wild Hogs on Netflix. We watched part of the Super Bowl with my family. My mom acted as if nothing had happened. It was stressful and weird. I did an enema before we went to bed around 8:30pm.
I woke up at 4:30am on my birthday to do another enema before Taylor took me to my colonoscopy appointment. I'll blog about that later. After my colonoscopy, we stopped at Wawa and Taylor took me back to my place. We made the most of our time together! I can't wait to celebrate my 30th birthday for real when I'm fully recovered from my next surgery.
Sunday, January 28, 2018
Progress
On January 15th, I had my post-op follow-up appointments at the Cleveland Clinic. Before my appointment with my surgeon, I had a gastro-graphic enema. During the procedure, they put a considerable amount of liquid contrast up my butt (my original butt) as they took x-rays of my intestines. They warned me that the contrast would cause discomfort and pain, but I felt okay during the procedure while I was on the table. Afterwards, they pulled the tube out of my butt and helped me off the x-ray table. Some of the contrast had leaked out of my butt onto the table causing the paper to stick to my ass when I stood up. I waddled to the bathroom connected to the x-ray room with the paper stuck to my butt. Once I peeled the paper off and put it in the trash, I sat on the toilet to let some of the contrast out of my bowel. I was in such a hurry to get out of there that I put my pants on backwards when I got dressed. It wasn't until I was in the chick-fil-a parking lot struggling to put my phone in my pocket that I realized I had put my pants on wrong. The contrast left over in my bowel caused multiple sensations of and actual uncontrollable bowel movements. It wasn't regular shit coming out of my butt. Rather, it was a combination of mucus and contrast.
At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry. She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.
The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?
At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.
At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry. She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.
The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?
At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.
Friday, January 12, 2018
Scarlett
The anticipation of surgery is over. The results are in and it turned out better than expected. It wasn't an open surgery, it was laparoscopic. The ileostomy is not permanent, it's temporary and it will hopefully be taken down by early March. I went back to work on January 3, 2018 after being off for only five weeks. Since being discharged from the hospital, the pain has been manageable without pain meds. Everything seemed to fall into place and the best case scenarios prevailed. Even though things have been going better than expected, it doesn't mean that it's been easy.
It's common among ostomates to name the ostomy, also known as a stoma. After many suggestions and much consideration, I named mine Scarlett. She's my second butt, my front butt. She's an asshole. I love that her name has a double "t" like the word "butt". My stoma is a red-ish color and once it's reversed it will leave a scar. Scarlett is not well behaved. She farts and shits at will. Is it okay that I don't like her?
People told me that an ostomy would give me my life back; however, I don't think my life was far enough gone for me to have the same sentiment. Yes, Scarlett is serving her purpose for me to get back to normal one day. I don't see it happening while she's functioning as my second asshole though. If Scarlett was permanent, how would my future look? Right now, I'm just waiting for her to leave so that I can move on with my life.
I have this unexplained, constant fear. I bring spare clothes with me to leave in the car wherever I go in case she leaks. I carry spare ostomy supplies with me in my purse and I keep spare supplies at work in case the unimaginable happens. What if she leaks? Will I figure out how to minimize the mess and patch the leak? Or, will I have to change the whole fucking thing while she's still shitting? I am still abiding by the dietary restrictions. The fear of a blockage and subsequent emergency surgery has been instilled in me. Is everyone looking at my stomach? Can they see the bag filling with shit through my shirt? Shut up, Scarlett, we are not making friends today. I don't want to go anywhere. I don't want to do anything.
I change my ostomy appliance every three days. Scarlett is supposed to be less active in the morning, but she shits whenever she wants. The changes are the hardest when Scarlett is constantly shitting during the change. I use adhesive remover to remove the bag and clean off the leftover adhesive residue from my skin around the stoma. I use wet paper towels soaked in baby soap to clean the stoma and surrounding skin and I follow that by wiping it down with wet paper towels to remove any soap left behind. At first, I would measure my stoma and then cut the barrier opening of the two piece appliance at this point.
After the barrier opening is in place, I connect the drainable pouch. The plastic ring on the bag (drainable pouch) in the picture to the left connects to the barrier opening. The bottom of the bag is rolled up three times and held in place with Velcro as shown in the photo on the right. Once the bag fills with shit, I use the Velcro opening to empty it into the toilet (more on that in an upcoming post). The bags the hospital provided were clear. I hated being able to see my shit through the bag, so I'm glad my prescription bags are opaque. An ostomy is actually considered to be a prosthetic.
Once the bag is off, it's difficult to keep the area clean and dry while doing all of the steps above at the same time Scarlett is shitting. Some changes are harder than others. I am getting better at handling it each time. I recently discovered that Huggies Wipes are amazing when it comes to keeping it clean during high output change days.
It's common among ostomates to name the ostomy, also known as a stoma. After many suggestions and much consideration, I named mine Scarlett. She's my second butt, my front butt. She's an asshole. I love that her name has a double "t" like the word "butt". My stoma is a red-ish color and once it's reversed it will leave a scar. Scarlett is not well behaved. She farts and shits at will. Is it okay that I don't like her?
People told me that an ostomy would give me my life back; however, I don't think my life was far enough gone for me to have the same sentiment. Yes, Scarlett is serving her purpose for me to get back to normal one day. I don't see it happening while she's functioning as my second asshole though. If Scarlett was permanent, how would my future look? Right now, I'm just waiting for her to leave so that I can move on with my life.
I have this unexplained, constant fear. I bring spare clothes with me to leave in the car wherever I go in case she leaks. I carry spare ostomy supplies with me in my purse and I keep spare supplies at work in case the unimaginable happens. What if she leaks? Will I figure out how to minimize the mess and patch the leak? Or, will I have to change the whole fucking thing while she's still shitting? I am still abiding by the dietary restrictions. The fear of a blockage and subsequent emergency surgery has been instilled in me. Is everyone looking at my stomach? Can they see the bag filling with shit through my shirt? Shut up, Scarlett, we are not making friends today. I don't want to go anywhere. I don't want to do anything.
I change my ostomy appliance every three days. Scarlett is supposed to be less active in the morning, but she shits whenever she wants. The changes are the hardest when Scarlett is constantly shitting during the change. I use adhesive remover to remove the bag and clean off the leftover adhesive residue from my skin around the stoma. I use wet paper towels soaked in baby soap to clean the stoma and surrounding skin and I follow that by wiping it down with wet paper towels to remove any soap left behind. At first, I would measure my stoma and then cut the barrier opening of the two piece appliance at this point.
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Barrier Opening. I cut in between the 1" and 1 1/4". This
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Barrier Opening. This is the side Scarlett peeks through
on and also the side the two piece drainable pouch
connects to.
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Now that I know the size of my stoma is slightly over one inch, I cut the barrier opening before removing the bag because Scarlett is an asshole and she can't be trusted in the open. I use skin protective spray and wipes on my skin around Scarlett and as it dries I make sure the barrier opening is cut to the right size making necessary minor adjustments. Next, I open the ring barrier protector (super sticky ring shaped thing that goes around my stoma first), cut it, and stretch it so that it will fit around my stoma.
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Ring Barrier Protector. This is the first thing that
goes on my skin around my stoma.
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Cutting it was not advised by most of my nurses, but it allows me to get a perfect fit around my stoma by overlapping a bit of it. Otherwise, it's easy to overstretch the ring and then it won't fit correctly. I do make sure to overlap it at the top and not the bottom since shit is not immune to gravity. I figured if the overlap crack is at the top it will be less likely to leak. Once the ring barrier protector is around the stoma, I put the barrier opening of the two piece appliance on top by peeling a few layers to reveal the adhesive and putting Scarlett through the hole I previously cut.
Once the bag is off, it's difficult to keep the area clean and dry while doing all of the steps above at the same time Scarlett is shitting. Some changes are harder than others. I am getting better at handling it each time. I recently discovered that Huggies Wipes are amazing when it comes to keeping it clean during high output change days.
My belly definitely looks different than it did before. It's been tough, but I've been tougher!
Friday, December 22, 2017
My Eight Day Hospital Stay
If you think this post is long, try staying in the hospital for eight days. After surgery, I was on a clear liquid diet for two days, a GI soft diet for three days, one day of NPO (nothing by mouth), and then regular hospital food thereafter. My appetite was non-existent. The fact that the food and liquids tasted like shit didn't help.
I had a morphine pump for three days after surgery. There was a button I could press whenever I was in pain to activate the morphine through my IV. I could only press it every ten minutes, which wasn't an issue. I only pressed it once and I don't remember when that was. The nurses constantly told me not to be afraid to press the morphine button. I have experienced far more agony than what I felt in the hospital, so it was difficult for me to determine if I needed pain meds or not. I've pushed through much higher pain levels without medication on my own because Crohn's is fucking torture sometimes. In the hospital, I occasionally moaned in pain, but the pain never brought me to tears and the pain didn't feel debilitating. After they unhooked the morphine pump, they offered me Oxycodone for pain. Again, the nurses told me not to be afraid of it. A couple of friends told me not to be a Martyr. Was I really choosing to suffer in pain rather than admit I was in pain and take the meds? I definitely experienced pain in the hospital, but I didn't think it was that bad because I've felt worse before and managed it without any pain meds. I think I accepted Oxy three different times.
I took my first couple of walks on Thursday, the day after surgery. To make matters more complicated, my period started on Thursday. I needed help to sit up. My abs had no strength. It was a process to unhook my compression calf sleeves that plug in and inflate and organize all of the IVs, cords, and tubes so I could walk. Taylor walked with me. Standing up felt weird. I don't know how else to describe it. My belly felt different and sore. Actually, my whole body was sore and stiff. They took out my catheter and my mom helped me out of bed whenever I had to pee. One time, I hollered out of the bathroom to the nurse, "Something is coming out of my butt!" To my surprise, the mucus coming out of my old asshole was normal and expected. I later found out that my new asshole, the loop ileostomy, has two holes. One hole for waste that collects in the ostomy pouch and another hole, which is considered a fistula, to secrete mucus through my lower intestines and out of my old asshole. Yes, I now have two assholes and stuff comes out of both of them. I can't make this shit up. It's a nightmare I didn't know existed. On the positive side, a loop ileostomy is always temporary.
Friday, the doctors realized there was a miscommunication. My catheter should not have been removed, so it needed to be re-inserted. Sure, the nursing student shadowing the nurse can do it. She didn't seem very confident, but she figured it out after asking the nurse to help her. The catheter made one more thing to carry with me on my walks. We tied a glove to the bottom of the IV stand so I could wheel it with me on my walks. Why don't they have a wheeled stand suitable to hold a catheter? I had three visitors on Friday, Badass Doreen, Sas, and Bonnie. They all happened to show up within minutes of each other around 11am. I felt loved and their well wishes lifted my spirits. Sas and Bonnie stayed about an hour. Badass Doreen was awesome and went to lunch with my mom so that I could take a nap. I woke up in the early afternoon moaning in pain. For my entire stay at the hospital, the nurse techs came by every few hours to take my vitals and empty my JP, catheter, and ileostomy. When the nurse tech took my temperature Friday evening, I had a 103 degree fever! I think they gave me Tylenol. My head hurt worse than my stomach at that point. Thankfully, Doreen was there for me and my mom. I think it took a while for my fever to break, but I don't remember when it did. I do know that Doreen left around 9pm and my mom stayed the night with me.
I don't remember much from Saturday and Sunday (I probably slept 85% of the time at the hospital), except that I had a 102.7 degree fever around 8:30pm on Sunday I think they gave me Tylenol again for the fever. I'm not sure when the fever broke. On Monday, I wasn't allowed to eat or drink anything. The nurses even stopped my IVs and stopped giving me the routine meds I was getting because I couldn't have water to swallow them down. The reason they gave me for being NPO was so that they could run tests to figure out what was causing the fevers. I found out later that it was likely in case they needed to take me back into surgery based on the results of the tests. Monday was the hardest day in the hospital. There I was trying to recover from surgery. I was already dehydrated and weak and they wouldn't let me eat or drink anything. I pressed my call button multiple times begging for some water or ice. "Bring me some fucking water!" My mouth felt as dry as a desert. My lips are still cracked at the corners from that day. It took them all day to take me to have two tests done and get blood cultures. The blood cultures came back okay. The first test, a cystogram, was done around 5pm. It was pretty easy since I already had a catheter in. Afterwards, the nurses and my mom wanted me to walk. Ha! I was so thirsty that I refused to walk if they couldn't give me water. Asking me to walk was bullshit. After the cystogram they hooked me up to an IV for antibiotics, but I still wasn't allowed to eat or drink. They took me to get a CT scan with an enema contrast right before midnight. By this point I was pissed, annoyed, thirsty, and hangry. Moving on and off the CT table with only one person helping me was a struggle and it hurt my stomach. When the tech was inserting the enema tip for the barium contrast, I realized that my stricture closest to my rectum was still there. No wonder the ostomy is temporary! I advised the tech of my stricture and the pain the large tip (lol) was causing in my anus. (Don't worry, I've already accepted that anal will never be for me.) I was happy once the CT was over, but disappointed that I had to wait for the results before they would clear me to eat and drink. When I got back to my hospital room after midnight, I slept until morning. I was completely drained. The blood cultures, cystogram, and CT results all came back okay. We never found out what caused the fevers. I think it was just my body trying to heal and recover. It was on overload. Although looking back, I would be curious to know if the fevers were a result of taking the pain meds. Even though I lost it a couple of times on Monday, I tried to hold it together and I was a lot nicer than I wanted to be.
By Tuesday, it started to feel like I would never get out of the hospital. It didn't matter that my appetite increased a little because every time a meal came, the nurse tech decided to come in and empty my JP, catheter, and ileostomy and then suddenly I wasn't hungry anymore. Eventually, I got the bright idea to start asking the nurse tech to wait until I finished eating. Taylor visited me, brought dry shampoo, and did my hair. I love her! I didn't shower the entire time I was in the hospital. They helped me wipe myself down, but that's just not the same as a shower. I walked six times on Tuesday! Yet again, I had another fever Tuesday night. This time it was only 101 degrees and it came down quickly after I took Tylenol. When my doctor and his team made their rounds early Wednesday morning, they let me know that if I can go 24 hours without a fever they will discharge me on Thursday. I walked six times on Wednesday, too.
Around 4:30am Thursday morning, the nurse tech took my temperature with a reading of 100 degrees. Knowing I wouldn't be discharged if I had a fever, I asked the tech to take my temperature again since I didn't feel like I had a fever. The tech immediately took my temperature again with a reading of 98.4 degrees. I don't understand how the thermometer can give those two different readings in a matter of seconds. We went with the second reading. Around 6am, my doctor and his team let me know that I would be discharged! It's a slow process to get discharged. The pharmacy had to fill my prescription, the ostomy nurse had to change my pouch and give me supplies so that I could change it on my own, and my nurse had to get all of the discharge instructions in order. When it was finally time to ditch the hospital around 1pm, my mom helped me change out of my butt flap gown and she put my socks and shoes on me. I was overwhelmed with emotion as I moved from the hospital bed to the wheelchair. I cried a little as the nurse wheeled me down to the car my dad pulled around. Other than that, I didn't cry in the hospital. I left the hospital with the JP and catheter and I had follow-up appointments the following week to have them removed.
I survived my first hospital stay due to Crohn's disease. I've had some terrible Crohn's days in the past fifteen years and it makes me wonder how I managed to avoid the hospital until surgery. The surgery, hospital stay, and staying in a hotel afterwards were the most difficult two weeks of my life. The results of the surgery were better than I expected going into it. Although I shouldn't be surprised it went so well because I had the best surgeon! The support from my family and friends meant the world to me! They are absolutely amazing! They made sure I knew I wasn't going through this alone.
When I need motivation, I blast this song: https://youtu.be/8hkmuTvkp_s
I had a morphine pump for three days after surgery. There was a button I could press whenever I was in pain to activate the morphine through my IV. I could only press it every ten minutes, which wasn't an issue. I only pressed it once and I don't remember when that was. The nurses constantly told me not to be afraid to press the morphine button. I have experienced far more agony than what I felt in the hospital, so it was difficult for me to determine if I needed pain meds or not. I've pushed through much higher pain levels without medication on my own because Crohn's is fucking torture sometimes. In the hospital, I occasionally moaned in pain, but the pain never brought me to tears and the pain didn't feel debilitating. After they unhooked the morphine pump, they offered me Oxycodone for pain. Again, the nurses told me not to be afraid of it. A couple of friends told me not to be a Martyr. Was I really choosing to suffer in pain rather than admit I was in pain and take the meds? I definitely experienced pain in the hospital, but I didn't think it was that bad because I've felt worse before and managed it without any pain meds. I think I accepted Oxy three different times.
I took my first couple of walks on Thursday, the day after surgery. To make matters more complicated, my period started on Thursday. I needed help to sit up. My abs had no strength. It was a process to unhook my compression calf sleeves that plug in and inflate and organize all of the IVs, cords, and tubes so I could walk. Taylor walked with me. Standing up felt weird. I don't know how else to describe it. My belly felt different and sore. Actually, my whole body was sore and stiff. They took out my catheter and my mom helped me out of bed whenever I had to pee. One time, I hollered out of the bathroom to the nurse, "Something is coming out of my butt!" To my surprise, the mucus coming out of my old asshole was normal and expected. I later found out that my new asshole, the loop ileostomy, has two holes. One hole for waste that collects in the ostomy pouch and another hole, which is considered a fistula, to secrete mucus through my lower intestines and out of my old asshole. Yes, I now have two assholes and stuff comes out of both of them. I can't make this shit up. It's a nightmare I didn't know existed. On the positive side, a loop ileostomy is always temporary.
Friday, the doctors realized there was a miscommunication. My catheter should not have been removed, so it needed to be re-inserted. Sure, the nursing student shadowing the nurse can do it. She didn't seem very confident, but she figured it out after asking the nurse to help her. The catheter made one more thing to carry with me on my walks. We tied a glove to the bottom of the IV stand so I could wheel it with me on my walks. Why don't they have a wheeled stand suitable to hold a catheter? I had three visitors on Friday, Badass Doreen, Sas, and Bonnie. They all happened to show up within minutes of each other around 11am. I felt loved and their well wishes lifted my spirits. Sas and Bonnie stayed about an hour. Badass Doreen was awesome and went to lunch with my mom so that I could take a nap. I woke up in the early afternoon moaning in pain. For my entire stay at the hospital, the nurse techs came by every few hours to take my vitals and empty my JP, catheter, and ileostomy. When the nurse tech took my temperature Friday evening, I had a 103 degree fever! I think they gave me Tylenol. My head hurt worse than my stomach at that point. Thankfully, Doreen was there for me and my mom. I think it took a while for my fever to break, but I don't remember when it did. I do know that Doreen left around 9pm and my mom stayed the night with me.
I don't remember much from Saturday and Sunday (I probably slept 85% of the time at the hospital), except that I had a 102.7 degree fever around 8:30pm on Sunday I think they gave me Tylenol again for the fever. I'm not sure when the fever broke. On Monday, I wasn't allowed to eat or drink anything. The nurses even stopped my IVs and stopped giving me the routine meds I was getting because I couldn't have water to swallow them down. The reason they gave me for being NPO was so that they could run tests to figure out what was causing the fevers. I found out later that it was likely in case they needed to take me back into surgery based on the results of the tests. Monday was the hardest day in the hospital. There I was trying to recover from surgery. I was already dehydrated and weak and they wouldn't let me eat or drink anything. I pressed my call button multiple times begging for some water or ice. "Bring me some fucking water!" My mouth felt as dry as a desert. My lips are still cracked at the corners from that day. It took them all day to take me to have two tests done and get blood cultures. The blood cultures came back okay. The first test, a cystogram, was done around 5pm. It was pretty easy since I already had a catheter in. Afterwards, the nurses and my mom wanted me to walk. Ha! I was so thirsty that I refused to walk if they couldn't give me water. Asking me to walk was bullshit. After the cystogram they hooked me up to an IV for antibiotics, but I still wasn't allowed to eat or drink. They took me to get a CT scan with an enema contrast right before midnight. By this point I was pissed, annoyed, thirsty, and hangry. Moving on and off the CT table with only one person helping me was a struggle and it hurt my stomach. When the tech was inserting the enema tip for the barium contrast, I realized that my stricture closest to my rectum was still there. No wonder the ostomy is temporary! I advised the tech of my stricture and the pain the large tip (lol) was causing in my anus. (Don't worry, I've already accepted that anal will never be for me.) I was happy once the CT was over, but disappointed that I had to wait for the results before they would clear me to eat and drink. When I got back to my hospital room after midnight, I slept until morning. I was completely drained. The blood cultures, cystogram, and CT results all came back okay. We never found out what caused the fevers. I think it was just my body trying to heal and recover. It was on overload. Although looking back, I would be curious to know if the fevers were a result of taking the pain meds. Even though I lost it a couple of times on Monday, I tried to hold it together and I was a lot nicer than I wanted to be.
By Tuesday, it started to feel like I would never get out of the hospital. It didn't matter that my appetite increased a little because every time a meal came, the nurse tech decided to come in and empty my JP, catheter, and ileostomy and then suddenly I wasn't hungry anymore. Eventually, I got the bright idea to start asking the nurse tech to wait until I finished eating. Taylor visited me, brought dry shampoo, and did my hair. I love her! I didn't shower the entire time I was in the hospital. They helped me wipe myself down, but that's just not the same as a shower. I walked six times on Tuesday! Yet again, I had another fever Tuesday night. This time it was only 101 degrees and it came down quickly after I took Tylenol. When my doctor and his team made their rounds early Wednesday morning, they let me know that if I can go 24 hours without a fever they will discharge me on Thursday. I walked six times on Wednesday, too.
Around 4:30am Thursday morning, the nurse tech took my temperature with a reading of 100 degrees. Knowing I wouldn't be discharged if I had a fever, I asked the tech to take my temperature again since I didn't feel like I had a fever. The tech immediately took my temperature again with a reading of 98.4 degrees. I don't understand how the thermometer can give those two different readings in a matter of seconds. We went with the second reading. Around 6am, my doctor and his team let me know that I would be discharged! It's a slow process to get discharged. The pharmacy had to fill my prescription, the ostomy nurse had to change my pouch and give me supplies so that I could change it on my own, and my nurse had to get all of the discharge instructions in order. When it was finally time to ditch the hospital around 1pm, my mom helped me change out of my butt flap gown and she put my socks and shoes on me. I was overwhelmed with emotion as I moved from the hospital bed to the wheelchair. I cried a little as the nurse wheeled me down to the car my dad pulled around. Other than that, I didn't cry in the hospital. I left the hospital with the JP and catheter and I had follow-up appointments the following week to have them removed.
I survived my first hospital stay due to Crohn's disease. I've had some terrible Crohn's days in the past fifteen years and it makes me wonder how I managed to avoid the hospital until surgery. The surgery, hospital stay, and staying in a hotel afterwards were the most difficult two weeks of my life. The results of the surgery were better than I expected going into it. Although I shouldn't be surprised it went so well because I had the best surgeon! The support from my family and friends meant the world to me! They are absolutely amazing! They made sure I knew I wasn't going through this alone.
When I need motivation, I blast this song: https://youtu.be/8hkmuTvkp_s
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