Surgery-Gone-Wrong one year later
That wasn't the plan but maybe the recovery was still worth it.
It has been one year since my surgery1. One year since I went in for a same day, laparoscopic, full hysterectomy + small fibroid removal and came out of the hospital 3 days later with a partial hysterectomy, significant endometrial excision, large fibroid removal, and 2 inches less of my sigmoid colon. And then, if that wasn’t fun enough, I was in the ER 9 days later with a blood clot in my liver, 3 more days in the hospital. Plus 2 more super fun ER visits, one on July 4th while at the cabin. Not to mention dozens of follow up regular doctor appointments.
I wrote a bit about it last summer2 and I shared in January that I had not yet reached enough perspective to summarize the year in a friendly Christmas card. But getting to the end of this year long ordeal I am starting to find some clarity and peace about the experience.
I definitely can still spin myself up into a froth of anger over what happened and what I have endured. But it is exhausting to be mad at a doctor I no longer have contact with who was never going to admit she made a mistake anyway. And, somewhere along the line I realized that while I am still coming to terms with the lifestyle changes the colon resection has necessitated, my over all health has significantly improved. As if I really did need that hysterectomy, as if I desperately needed to remove that big fibroid3 and all that endometriosis, as if those things were in fact negatively affecting my quality of life and I really did need this surgery. When I step back on this side of recovery to look at the big picture I can see that my improved health has been significant. For a while I second guessed my decision to get the hysterectomy at all. A year later I am thankful I went in even if things took an unwelcome turn.
What have I noticed?
The Good and Bad:
Off HRT
I had to go off the HRT because of the blood thinners I took after the clot. I was concerned about what would happen to my mental health which was the main reason I was on them. The brain fog, random anxiety and occasional depression was far worse than my hot flashes. So I was prepared to ask for Zoloft or some other anti depression drug and was carefully monitoring my moods. I had initially pushed for the HRT instead of one of those options reasoning that if hormones were throwing off my mental health that was the most logical way to treat it. Turns out it was the endometriosis throwing off my hormones even more than menopause. It seems getting all the endometrial adhesions, each of which was producing additional hormones, out of me has caused my hormones to balance themselves right out and I continue to feel great a year later. Additionally, I significantly changed my diet over the summer to heal my liver and I think that detox helped too. (I am a big believer in food as medicine.) I continue to monitor my mental health but so far so good. The occasional hot flash has returned but they are pretty mild and I am happy to endure them when my mind is feeling strong.
Lost 30 Pounds
I lost a lot of weight. At first this was just pissing me off because it was the result of the pain I was in. Everything made me nauseous so I wasn’t eating and dropped 10 pounds in a couple weeks. When I did eat I couldn’t poop so then I was taking laxatives. So that is the secret to losing weight, starve yourself and then take laxatives. (eye roll) Obviously I would gain it back once I was better because there was nothing sustainable about this weight loss. So why bother enjoying it? By the time I returned to health I was down close to 20 pounds and decided it was enjoyable enough I should figure out how to keep it off. I lost 10 more as I slowly started feeling better and have been holding here for the last 6+ months. While I love how I look the truth is what has been more motivating has been how great I feel, how much easier it is to move my body. While looking good is rewarding, it has never motivated me like feeling good. I didn’t even realize how much my bigger body, and I wasn’t even that big, was slowing me down, getting in my way, etc. Small things when the weight comes on slowly but huge when you suddenly get those movements back.
Keeping the weight off has has required some changes, I didn’t go back to eating the way I was pre surgery but I also did not stay on the diet I was on last summer while healing my liver. I live somewhere in between while also doing Intermittent Fasting4. I have returned to an occasional alcoholic drink but limited and honestly it is something I am trying to decide where I will land. Last summer even communion wine would trigger a liver reaction, now I am not quite that sensitive but more than one drink or more than one night in a row seem to be too much for me. Which is making me wonder why I drink at all lately. Things I am thinking about.
Neighborhood walks
We only got up to our cabin a couple times and only went on the 4 wheeler once (twice?) last summer. Even when we were up there we did things that involved sitting not hiking, exploring or generally moving. On the other hand, by late summer, when we were most able to go up, my recovery involved short walks a couple times a day. I got to explore beyond the one block area of town we generally hang out in. It was fun to observe how the streets a couple blocks away felt different than our little corner of town. I wonder if the talk around town was about the weird lady slow shuffling down the sidewalks holding her stomach. My walks could be summarized, “get me out of this house”, “get me off this couch” but also “do not let me go too far from it because I will need to sit back down soon”. The walks also helped me get stronger so I could be away from a chair longer and longer. Through the process I have really come to love neighborhood walks. It was amazing to experience my body getting stronger every day with such simple movements. And it was a thrill when I finally decided to do a 2 mile out and back walk instead in small circles around my home so I could get home quickly. I have been asking myself this year if we undervalue the simple daily movements and put too much value on the hard gym work out. I love a good work out and probably won’t abandon them completely but I feel less compelled in this particular season to do a lot more than my daily walk knowing how big a difference it is making.
Along with strengthening my whole body the walk was good for my mind and my colon. John says that in the ER they tell people if you want your bowels to move you have to move. After a summer of more effort that one would like trying to move my bowels, I can testify that getting in daily walks really helps.
The New Normal
I started Pelvic Floor PT last fall, have had all the tests you don’t even want to know exist regarding a bodies ability to expel waste, and it has been determined there is nothing wrong with me and this new normal is just my new normal. Daily laxatives and daily movement seems to be the best balance. Instead of being obsessed with getting enough protein like most menopausal women I am obsessed with my fiber intake. I spent most of this year fighting that prescription. I did not have to take laxatives before this surgery, could walk or not walk and everything still came out easily and regularly. I was told my recovery was normal, going well, and the doctor had no additional need to follow up with me. However, I did not feel normal, did not think things were going well and wanted to know how to find the sweet spot on the amount of laxative, and when exactly I was going to be able to stop taking it all together. Because outside of that I did not see how we could call me recovered. If I was going to return to normal I expected that normal to be defined by my experience before the surgery.
I am going to be honest here, there are holes in the medical system. What I was experiencing in recovery was their definition of normal and acceptable. The fact that it was not my normal and I was not finding it acceptable did not seem to compute with anyone. The colo-rectal and gastroentologists did not seem to understand my frustrations or my questions. They just ordered tests and procedures and told me they were all normal and couldn’t understand why I was getting angrier. Ultimately I was able to find a doctor who at least answered some of my questions and was the first one to actually say, “you might have to take a laxative the rest of your life”. Honestly, I just wanted someone to say that. To admit that I was not going to have a full recovery and was going to be managing things the rest of my life. Tell me what is true and I can live with it. Act like I am the problem because I am not having the experience you are telling me I am having and I will not hold back on my opinion of your patient care. (just sayin’)
More Content in my Life
I wrote a little about this a couple weeks ago but I am more at peace after a summer on the couch. Nothing feels like an emergency anymore. I just do what is next and let things happen in time. I suppose last summer was a reality check about life and gave me a new perspective on who I am and what is important. I suspect this is another both/and moment. Talking to friends it seems like this is something we are all noodling. How hard we need to strive, what is important? We’ve lived long enough to know things work out and this too shall pass. I just got a crash course in resting and time to reset my life in the midst of that season.
The Interesting:
What day is it?
One of the more interesting aspects of recovery has been my minds inability to fast forward past the lost months. I can visually see summer is arriving, I look at my calendar and write the correct date on documents, but when I am projecting out I think fall is 6 months from now. Basically I have lost a whole season and this past year my mind has not been able to reset. I am hopeful that starting the year over again and having this whole summer will catch my body and mind back up in time.
What did we do last summer?
One of the funny things I did this winter was say things like, “Why didn’t we go to the farmer’s market last summer? I was going to do that regularly”. Generally John would just look at me for a few minutes while my brain reviewed my life and remembered.
Titanium staples
The entire year I have been very aware of the spot my colon was resected. Can feel it when I move. I worried it meant something was wrong until a few months ago when I saw a new doctor who finally told me this is a common observations among patients who have this procedure. Once I knew it was OK I realized it sort of makes sense. While titanium staples aren’t heavy I do have a series of them all around my colon and logically my body is aware of them and my mind is constantly noting the new experience. I’m assuming my brain will eventually get used to them. Its not a pain, just an awareness. Particularly noticeable when I walk up and down stairs lifting my left leg and pushing that part of my colon around. Fun and fascinating now that I know what it is.
The Reflections:
It is always easiest to be angry at other people and avoid looking at your own responsibility when things go wrong. And while I don’t feel like I should have known how to perform my own hysterectomy and explain to my doctor how to do it, I have had to admit that I spent the majority of my adult life knowing I was experiencing a lot of endometrial issues and choosing to manage them myself and avoid doctors. I knew I probably needed a hysterectomy for years but was stubbornly refusing to get one because I wanted to go into natural menopause5. (Why?) As a result I suffered far longer than I should have and when I did go in my issues were severe. And, because I didn’t have a doctor who had been following my history or look for one that had endo experience, we were all caught off guard by how bad things were. I’m learning to give myself a little grace that I was doing the best I could in the life we lived and not expect 35, 40, 45 year old Melanie to handle things with the knowledge and opportunities of 55 year old Melanie. (And give a tiny amount of grace to my doctor as well.)
We did not have good health insurance when I was younger and it would have cost so much money we did not have to find a good doctor and get the tests and treatments I needed. It was easier to just manage it myself. I can buy a years worth of Advil for the cost of a couple doctor appointments. God knew and in the right moment he pushed me forward. I generally wouldn’t chose the hard experiences that have been part of my life but never have I regretted the lessons I learned or wanted to give up what I gained as a result of the struggles. Not sure I am quite ready to say I am so glad I had this experience but I am learning to appreciate how I have grown as a result and allow for a little gratitude.
A year after a trauma we often say the body remembers. Certainly there are season in my life where I find small things more stressful or feel anxiety that seems out of proportion for the experiences. Every year fall is a sensitive season at our house. As the years have gone by it has gotten easier but that also means a trigger can catch us off guard. So we are all patient and full of grace for one another in the fall.
As I have marched toward this anniversary I have been carefully watching my moods and feelings waiting to fall apart. And while have felt all the feelings leading to this anniversary. I don’t feel trauma. I’ve been thinking this week about how we hold traumatic experiences. I have had hard things happen that have been held in my body for years, Losses I was not prepared for. Events that shook me to the core and I didn’t have the ability to property process. Those are the things that hit us in the fall. And so going into this anniversary I was expecting something similar. But my body just is not telling me that. I am reflective of the anniversary but don’t feel overwhelmed by it. I don’t want to shut down. I am not feeling any fear. And it has me thinking about the difference between a traumatic event that is hard and needs processing and a traumatic event that is so hard your body can’t process it and the event gets stuck in you. Last summer was traumatic but I am realizing I am not holding trauma over it. This anniversary is not something I dreaded but something I am glad to get past. To be on the other side of a whole year feeling stronger and basking in my improved health. I’m sure there will be some up and down days this summer as I do continue processing the experience but it feels more like healing than trauma.
This summer I am looking forward to long, bumpy rides on the 4-wheeler (we are heading to the cabin this weekend), many trips to the farmer’s market (hit the first one last weekend), long hikes in the woods, and continuing those daily neighborhood walks both at home and at the cabin. Along with a full summer with work, friends, family, and a few projects around the house.
Well, That Wasn't the Plan
Years ago I found a greeting card that said on the outside, “when life hands you lemons…” and on the inside, “put them in your bra. Couldn’t hurt, might help.”
I am convinced that fibroid was sitting on my bladder because the amount less I pee is SIGNIFICANT. It has always been a family joke how much I pee. Melanie never walks by a bathroom and I have reviewed the bathrooms everywhere I have ever been. Driving 4 hours to our cabin has at times required 4 stops. (that was extreme but 2 was normal) Suddenly I am doing the whole drive without a stop! I am going places and leaving without pausing at the bathroom. It is amazing! Is this how everyone else lives? I am here for it.
I have been following Gin Stephens starting with her book “Cleanish” and then listening to “Fast. Feast. Repeat.” She has a podcast too.
Why? Because all women in my family have gotten hysterectomies. (hint Melanie) I wanted to be the first that didn’t. So congrats to me that I suffered unnecessarily for years, made it into natural menopause and then immediately got a hysterectomy. And the funniest part is that I thought they would have to take my ovaries which was the big hold back, and when it came down to it my ovaries were so encased in scar tissue my doctor couldn’t get at them and left them. So I could have gone into menopause naturally without all the unpredictable bleeding that goes with that. Sigh…
I literally stopped mid way through reading this and went on a walk! Thank you! I'm so glad things are better for you and you're a year past all this and also just feeling better in general after getting all that crud scooped out!! May God be praised!!