Nobody said it was easy
Hey friends,
I haven't written in a while, so I thought I'd post a little update now that I've hit the 2 month mark. I wish I had lots of happy progress to share, but the reality is that post-surgery life has been really, really hard. I will share some of what I'm going through, but I don't have a lot of explanations as to why these things are happening because I'm waiting to talk to my doctors next week. In the meantime they have been giving me medications, and I've just been blindly taking them because I need relief. I have so many questions to ask. Anyway, here's what's been happening on my end (oh bad pun...). The frequency of my BMs have not gone down to the expected levels for a person 2 months out from surgery. If I stay away from certain foods (until we meet again dear chocolate, tomato sauce, spicy cuisine), many of my days are manageable. Well, to be more precise, they're partly manageable because I modify my lifestyle. I basically stay close to home and near bathrooms at all times. But they're not painful. And then there are the (sometimes random) days when all heck breaks loose and I use a few rolls of TP in one day. Oh the butt burn on those days. Today is one of those days. I will not be eating a kale salad from Sweetgreen again. le sigh :( Nighttime continue to be my hardest time because I'm getting up a lot to use the bathroom. Some nights are better than others, but sleep is so important and my sleep cycles are constantly interrupted.
I was expecting the frequency, so even though it's bad, and it can get really bad, I am still trying to stay positive that my jpouch is just taking it's time to adapt and I need to be patient. Don't worry though, you can be sure I'll be asking my surgeon all about what's going on with the frequency when I see him next week. Still, what has been really rocking me to my core has been new symptoms: excessive sleep (sometimes 12-13 hours a night and I'm still tired) and joint pain, especially my knees and hands. In the past I've had days when I was so anemic that it was exhausting to go from the car to the house and I've had days (and still do) where I am careful to stay within a small radius of my house in case I have a bathroom emergency, but never, never has my actual mobility been compromised. I know this is fortunate because plenty of people with autoimmune diseases suffer daily from joint pain, some with no cure. Still, it felt like really odd timing for it to just pop up for the first time after my body part with the illness had been removed. It was like squeezing slime in my fist: I tried to tuck it all in, but it just popped out in a new place. I started to spiral thinking that maybe I had a new autoimmune disorder (sometimes a surgery can set off something new) and wondering if I would be able to handle dealing with more pain and suffering. My answer was no, I couldn't handle it. For anyone who's known me for some time, you know I'm a true optimist. Still, how much can one person handle? I just needed a break, and I needed it yesterday.
The good news is that after describing my joint pain symptoms on the phone to my doctor's office, I was prescribed a medication and it's been helping a LOT with the pain. Probably 90%. And I learned that there's a chance that I don't have a new auto immune, but rather this could be my colitis acting up in a new way. Sneaky colitis! I actually really hope this is the case. Again, I have loads of questions to ask at my appointment next week.
So chronic illness is tough. I'm still an optimist, but I'm also a realist. This is not like a surgery where you're back to normal in a snap. I'm likely going to be dealing with my new plumbing and various manifestations of colitis forever. I really hope that I will have long stretches throughout my life where there will be relief, but I am coming to terms with the fact that my body is needy. And that's ok, if I can get a rest here and there. (and don't worry, I won't keep blogging forever ;) )
Tomorrow (Friday) is World IBD Day. IBD is often invisible and even though people with IBD still look and sound like themselves, they probably have a lot going on inside. It can also be really socially isolating having a chronic illness. So, thank you to friends and family who continue to invite me to things even though I sometimes cancel last minute or I decline because it's too far outside of my realm of possibility right now. I love the texts and the silly anecdotes about your day and the photos of you and your kids and your pets. Keep it all coming. Most days I'm game to meet you anywhere in the Boston area where there is a bathroom nearby :)
I haven't written in a while, so I thought I'd post a little update now that I've hit the 2 month mark. I wish I had lots of happy progress to share, but the reality is that post-surgery life has been really, really hard. I will share some of what I'm going through, but I don't have a lot of explanations as to why these things are happening because I'm waiting to talk to my doctors next week. In the meantime they have been giving me medications, and I've just been blindly taking them because I need relief. I have so many questions to ask. Anyway, here's what's been happening on my end (oh bad pun...). The frequency of my BMs have not gone down to the expected levels for a person 2 months out from surgery. If I stay away from certain foods (until we meet again dear chocolate, tomato sauce, spicy cuisine), many of my days are manageable. Well, to be more precise, they're partly manageable because I modify my lifestyle. I basically stay close to home and near bathrooms at all times. But they're not painful. And then there are the (sometimes random) days when all heck breaks loose and I use a few rolls of TP in one day. Oh the butt burn on those days. Today is one of those days. I will not be eating a kale salad from Sweetgreen again. le sigh :( Nighttime continue to be my hardest time because I'm getting up a lot to use the bathroom. Some nights are better than others, but sleep is so important and my sleep cycles are constantly interrupted.
I was expecting the frequency, so even though it's bad, and it can get really bad, I am still trying to stay positive that my jpouch is just taking it's time to adapt and I need to be patient. Don't worry though, you can be sure I'll be asking my surgeon all about what's going on with the frequency when I see him next week. Still, what has been really rocking me to my core has been new symptoms: excessive sleep (sometimes 12-13 hours a night and I'm still tired) and joint pain, especially my knees and hands. In the past I've had days when I was so anemic that it was exhausting to go from the car to the house and I've had days (and still do) where I am careful to stay within a small radius of my house in case I have a bathroom emergency, but never, never has my actual mobility been compromised. I know this is fortunate because plenty of people with autoimmune diseases suffer daily from joint pain, some with no cure. Still, it felt like really odd timing for it to just pop up for the first time after my body part with the illness had been removed. It was like squeezing slime in my fist: I tried to tuck it all in, but it just popped out in a new place. I started to spiral thinking that maybe I had a new autoimmune disorder (sometimes a surgery can set off something new) and wondering if I would be able to handle dealing with more pain and suffering. My answer was no, I couldn't handle it. For anyone who's known me for some time, you know I'm a true optimist. Still, how much can one person handle? I just needed a break, and I needed it yesterday.
The good news is that after describing my joint pain symptoms on the phone to my doctor's office, I was prescribed a medication and it's been helping a LOT with the pain. Probably 90%. And I learned that there's a chance that I don't have a new auto immune, but rather this could be my colitis acting up in a new way. Sneaky colitis! I actually really hope this is the case. Again, I have loads of questions to ask at my appointment next week.
So chronic illness is tough. I'm still an optimist, but I'm also a realist. This is not like a surgery where you're back to normal in a snap. I'm likely going to be dealing with my new plumbing and various manifestations of colitis forever. I really hope that I will have long stretches throughout my life where there will be relief, but I am coming to terms with the fact that my body is needy. And that's ok, if I can get a rest here and there. (and don't worry, I won't keep blogging forever ;) )
Tomorrow (Friday) is World IBD Day. IBD is often invisible and even though people with IBD still look and sound like themselves, they probably have a lot going on inside. It can also be really socially isolating having a chronic illness. So, thank you to friends and family who continue to invite me to things even though I sometimes cancel last minute or I decline because it's too far outside of my realm of possibility right now. I love the texts and the silly anecdotes about your day and the photos of you and your kids and your pets. Keep it all coming. Most days I'm game to meet you anywhere in the Boston area where there is a bathroom nearby :)
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