One month ago today I had my final surgery! What a month it has been - Such a roller coaster! My surgery went great. A few hours after my first meal, I got to test out my new plumbing. It worked! I felt like I should get a reward like I used to give my kids when we were potty training them. Everything was going great so they released me back into the wild a couple days later. If only things had stayed that way.... About 4:00 am the next morning, everything fell apart. I started feeling really sick. My abdomen puffed up like a toad in the sun. I was cramping up big time and after barfing my face off in the shower, I knew something wasn't right. Back to the hospital. After a CT scan and some blood tests, they determined that my intestines had decided to stop absorbing any of the water I was drinking. I had become super dehydrated. They hooked me up to IV’s and I would end up spending the next week in the hospital being pumped full of fluids. Happily after a couple of days, my intestines woke up and started doing their job, They kept me there for the rest of the week to make sure I didn’t relapse. Those were some long days and I had several low moments. Mostly, I had zero appetite, and just did not feel well. This was on top of constantly making trips to the toilet. I knew it was going to be tough, but I’m not sure there is anyway to fully prepare yourself for how hard those moments can be. When your in the thick of it, it can be really tough to see the light at the end.
I had heard that during the adjustment period, people often miss their Ostomy bag. While I never hated having the bag, I didn’t miss it. Despite being miserable, It was kind of nice not having that bag pulling on me and always having to check it to see how full it was. Mostly, I think I had mentally moved on. My bag was now replaced with a 1 inch diameter open wound that they would teach me to pack with gauze twice a day. I was not prepared for how deep that thing was. My surgeon warned me that taking the gauze out of it was like seeing a bad magic trick. It just kept coming and coming. I’m told this will eventually close up and heal to a scar the size of a thumbnail.
Fast forward to a month later. I’m definitely still adjusting to the new plumbing. I’m making around 6 - 9 trips to the bathroom a day. Most of which are in the afternoon and evening. Honestly, if this is as good as it gets, it will have been worth it and I’d do it again. With my Ostomy, I was having to go to the bathroom to empty it around 12 times a day. My only hope is that my system figures out how to fully empty itself. Many times, I’ll think I’m done and a minute or two after I leave the bathroom, my guts start gurgling and I’m feeling like I got to go back. It is uncomfortable but, It’s never urgent, which is amazing! I think I still have a little PTSD from my UC days when I would get a sudden feeling of urgency and know that I had literally nine seconds to find a toilet or I would be throwing away another pair of pants. I can’t explain how nice it is not to have that be part of my life anymore.
So, while one month is still super early in the recovery realm of J-pouches, I am really happy and optimistic with how things are going. I will continue to dial in ways to counter the “butt-burn” that comes with having a j-pouch. Since I no longer have a colon to absorb most the acid out of my stool, sometimes it comes out a bit like red-hot itchy lava. The barrier cream and bidet definitely help, but it is absolutely there, and is definitely not fun. I hear this gets better with time. I believe it will.
The past year has been the hardest year of my life without question. However, I am so grateful for the things I’ve learned this year. I feel like I appreciate every aspect of my life so much more. I feel so blessed to be born in a time when the medical world can do all this stuff and make us pretty close to normal again. I’m so glad I had these surgeries. It was the right choice for me. I’m really enjoying being UC free!
One month post surgery -
I had heard that during the adjustment period, people often miss their Ostomy bag. While I never hated having the bag, I didn’t miss it. Despite being miserable, It was kind of nice not having that bag pulling on me and always having to check it to see how full it was. Mostly, I think I had mentally moved on. My bag was now replaced with a 1 inch diameter open wound that they would teach me to pack with gauze twice a day. I was not prepared for how deep that thing was. My surgeon warned me that taking the gauze out of it was like seeing a bad magic trick. It just kept coming and coming. I’m told this will eventually close up and heal to a scar the size of a thumbnail.
Fast forward to a month later. I’m definitely still adjusting to the new plumbing. I’m making around 6 - 9 trips to the bathroom a day. Most of which are in the afternoon and evening. Honestly, if this is as good as it gets, it will have been worth it and I’d do it again. With my Ostomy, I was having to go to the bathroom to empty it around 12 times a day. My only hope is that my system figures out how to fully empty itself. Many times, I’ll think I’m done and a minute or two after I leave the bathroom, my guts start gurgling and I’m feeling like I got to go back. It is uncomfortable but, It’s never urgent, which is amazing! I think I still have a little PTSD from my UC days when I would get a sudden feeling of urgency and know that I had literally nine seconds to find a toilet or I would be throwing away another pair of pants. I can’t explain how nice it is not to have that be part of my life anymore.
So, while one month is still super early in the recovery realm of J-pouches, I am really happy and optimistic with how things are going. I will continue to dial in ways to counter the “butt-burn” that comes with having a j-pouch. Since I no longer have a colon to absorb most the acid out of my stool, sometimes it comes out a bit like red-hot itchy lava. The barrier cream and bidet definitely help, but it is absolutely there, and is definitely not fun. I hear this gets better with time. I believe it will.
One month post surgery -
