Oh man let me tell you last night and this morning, morale was so bad. Persistent bladder spasms, everything about the catheter was so bad and it seemed like it would never end, the bolster stitching made it hard to move, the catheter made it hard to move, I was miserable and felt like I had no control over my body I was just in constant pain. That’s all over now!
I had my first post op visit. Catheter gone, packing gone, bolster also gone. To check how well I could pee they pumped my bladder full of water then once it was at the “if I don’t unlock my front door first try I’m going to pee on my steps” level discomfort they stopped and pulled the catheter. It hurt like hell, some screaming was involved. Then they ran me off to the bathroom to measure how much I could get out of me
The packing was the world’s most cursed clown handkerchief trick. It’s shocking how much fits in there. It was kinda a weird ticklish feeling until right at the end there was a brief bit of pain
At this point I was very exhausted but we still had more to go. My doctor referred to it as “we’re going to give you a tour” and then poked around everywhere talking about stuff while I # watched with a mirror. Some of it was pretty painful but it mostly went smoothly
Lastly he finished by showing me how to use the dilator once with him doing it then a second time with me doing it. Not gonna lie it hurt a lot more than I was expecting. Some people have talked about having a magical feeling with the first time a dilator is used I mostly just had a lot of pain. But good news there is I maxed out the depth! Doctor said I’m up there near most depth a person can get without having a much larger frame
Already my pain is way better, mobility is better, morale has gone way up, I’m so happy they didn’t have to put that catheter back in. I’m recovering really well so far even with the hardships
Update 1: My life is now a blurry disjointed mess of memories in between dilating sessions. I don’t really know how many days have passed
Update 2: I managed to get the second dilator in me almost to max depth today! Also it seems so little but today was the first time I managed to get dressed without any help. The socks were the last holdout for things I couldn’t get myself. I cried happy when I got them on. We’re going to walk around outside some more today see how far I can make it past the driveway now that I’ve conquered the backyard
Welcome to your daily life for the next year, by which I mean dilating 🙃 It does definitely hurt at first, but it will get easier over time. I also remember getting the packing taken out. Pretty wild moment lol. The first month/two months are the hardest. Keep your chin up, keep focused on the day to day, and make sure to drink lots of water and eat well. Nutrition and hydration are very important in the earliest stages of recovery. Stick to the routine your surgeon advises you to. And as time goes on you’ll want to keep regularly mobile. By week 3 I started going on daily walks with my partner. Shorter ones at first, longer ones as time went on. Important to keep circulation up. Happy to hear that you’re feeling better ❤️
My first couple months is going to include finalizing my divorce, and in the last eight or so months my polycule has completely collapsed so I’m just by myself now, so I’m pretty worried about my mental health at that time. I’m doing everything I can though
I’m normally very physically active, walk everywhere, go rock climbing, so I think I’ll be able to bounce back relatively quickly. Even at the hospital when I was drugged out my gourd I was trying to walk around because being bed locked drives me so batty
I hear people talking about how dilation becomes your entire life basically. Is that just because of how regularly it has to happen? It doesn’t seem like that big of a time sync to me, am I missing something?
For the first month, I dilated 4 times a day. The whole process takes about at least an hour but more often a bit longer. Each step takes time especially with moving around taking longer than normal. Youve got cleaning your dilators, prepping your bed/couch where you will be dilating, actually dilating, cleaning up after, rinsing, douching, then cleaning your dilators again after. All together, dilating was easily 6 hours a day, often 8. On top of that my energy was pretty low, so my daytime hours were around 12 hours early on. You also won’t be able to stand for long periods of time early on, and sitting will also be a pretty infrequent and often uncomfortable thing. I could ideally sit for around an hour a day for the first 2 months. Sometimes a bit longer if I was feeling good, sometimes less. So you spend a lot of time laying down, often the same place you actually do your dilation.
All those factors together and yeah no dilating was literally my life. It wasn’t until 6 months after that I was down to once a day where it actually became manageable. After a month I was down to 3, which was a bit easier, and after 3 months I went down to 2 times a day. I just got past a year last month, and am in the process of winding down to once a week. But yeah that first 6 months dilating definitely felt like my whole life.
It’s good that you’re normally very physically active! Definitely helps. Be patient with yourself too though. Your body does need lots of rest fo heal properly. Extra strain can actually have very real consequences. So take things very slow early on.
Damn no wonder I hear so many stories of people falling behind on dilating that all sounds really extensive. I’ve got really good starting depth (like “don’t put the dilator in further you won’t be able to get it back out”) and expected starting girth so I don’t want to fuck this up
What was your dilation schedule like? Did you do equal times through the day or was it like split through your average active times and pause for sleep?
One thing that’s helpful to bear in mind is that it’s actually pretty hard to permanently lose depth after initial healing phase has passed. Like once the tissue has healed depth loss is usually not permanent. I’ve had reduced depth at points where I’ve messed up and not dilated for several days even. I made sure to dilate for longer than normal and more frequently and I’ve regained that lost depth. Do your best but it is inevitable that you’ll miss a dilation here or there over time and it’s okay!
My dilating schedule for the first 3 months was set by alarms and timers. For the first month, I dilated: when I woke up, before I ate lunch, mid afternoon, and in the evening. After the first month it went to: when I woke up, after lunch, and before bed. After 3 months, though, I stopped using alarms and timers as I went back to work, and my schedule was far less consistent. I just dilated once in the morning, however long before my shift started, and once in the evening/night after my shift ended.
I understand the time sync now. It takes me about 90 minutes from when the alarm goes off to when I’m done and I’ve got help from my mom doing things like getting me a hot water bottle and making sure I’m stocked on everything before she leaves me to my business. It would definitely be more like 2 or more hours plus a lot more exhaustion doing this by myself. My sleep schedule is completely fucked right now with everything other than dilating being in 4hr blocks
Yeah, it’s gonna be that way for a while. My sleep was a mess for the first couple weeks. You will need help during all of this, and I’m glad that you have your mom there to help out. Try and walk for like 10 minutes a day at first, even just around your home. Get your mom to help if you need her. Circulation issues prolong healing and also make sleeping harder. Make sure that your recovery area and your dilating area are calming environments, keep the area tidy as best you can and leave the windows and blinds open to keep light and air coming in. You also need to seperate your day into light time hours and dark time hours, it will help your circadian rhythm keep up with the changes in time and promote better sleep. Practice some destressing/anti anxiety techniques like meditation. Remember to look down from your phone and look at something distant for a couple minutes every so often. Eye fatigue becomes really frustrating when you’re already feeling meh in other ways.
Also, idk I’d you’ve stopped taking any opioid painkilles yet but be prepared for your stomach to be upset when you do. Wean off as best you can, increasing time between doses, staying very hydrated. Important to try and mitigate any stomach problems.