Surgery went well and given what my surgeon told my mom, it was a success. He did find a staple from my last surgery and that’s likely what caused the fistula (as opposed to an abscess or infection). He did take a sample of something and send it off to pathology, but I don’t know to what extent that is standard operating procedure.
It’s 9:30 now and I’ll be heading to sleep in the next hour. The day began at 9 with one of those special showers with a special soap. Truthfully I didn’t sleep much since I made sure to get up every few hours to check my ostomy bag. We got to the hospital about 10:30 for a 12:30 surgery and by about 10:45 I was in preop getting prepped. Unfortunately with COVID, my mom couldn’t stay in preop with me. Preop in general didn’t take very long, but I was there awhile. The doctor using the OR ahead of me was running behind, so surgery got pushed back about an hour. While I was in preop, I got good drugs for the dehydration headache I had. In the end, they gave me some better drugs, to the point where I was drowsy and didn’t even notice when the nurse started my redials IV. Thankfully, they also used my port. Before they took me back to surgery, I did get to see my mom again.
Surgery went well enough that I do not have any new scars. They also did a flex sig to look at what’s left of my rectum as long I was already under. By 3:40 I was in recovery and by 4 I was well on my way to awake. My fairly low blood pressure kept me from getting pain meds for awhile (pain meds can lower blood pressure). Eventually it stabilized, even if it didn’t go up much. But my nurse started with low doses of dilaudid and had my blood pressure stayed stable, he gave me a bigger dose. It took a couple rounds of .2mg doses before I was comfortable. Unfortunately for me, it took awhile for me to get a room cleared and assigned on the appropriate floor and then to be transported up there. As a result, it was after 8pm before I finally got to see my mom again.
Tomorrow will include a visit by an ostomy nurse to check things over. Hopefully we’ll also be able to change my ostomy bag. The hospital used a two piece and I just hate two piece bags. They are so much harder with so much more tough plastic. I just don’t find the comfortable to wear. I was smart enough though to bring enough of my own supplies for a couple of bag changes.
I doubt I’ll be going home tomorrow, so the only question then is does the weekend push my discharge date to Monday or will I be discharged over the weekend.
One last piece of fun. In our family when you have a lengthy hospital stay or surgery, you get a stuffed animal. Here’s my new one.
Edit: I wrote the below section last night. I had my pre admissions testing this morning and discovered the clinic lost my COVID test from Monday. As such, I had to have another one today. Yuck.
I have more details now on Thursday’s surgery. If all goes well, there will be no new incision. They will instead free my small intestine from where it exits my abdomen, resect the intestine down to where the fistula is, and then using the same stoma location, attach the new section of intestine to the abdomen. All that means I’ll have the same stoma location, but a new piece of intestine will be the stoma. The location part is great, as it’s a location that works fairly well. The new intestine part of the surgery means I’m in for an annoying 6-8 weeks as things heal. I’ll be back to measuring my stoma every time I have to change my bag. I’ll be more prone to leaks. Hopefully the same bag system I use now will be appropriate for the new stoma. It probably will, but there’s no guarantee.
Surgery itself shouldn’t be too long. The surgical resident I talked to today said I’ll spend more time in pre and post op than I will actually in surgery. Unsurprisingly, I do have to do a bowel prep. This time it’s a combination of magnesium citrate, dulcolax, antibiotics, and potassium. For a good chunk of tomorrow, I’m taking something every hour or two. At least my pre op testing appointment is early enough in the morning that I’ll be well home before I have to start prep. I’m on a liquid diet tomorrow to make the prep easier. It won’t be a particularly pleasant day, but I expected that. Anytime there is surgery done on the bowels, or where there’s a risk of injuring the bowels, doctors prescribe a bowel prep to completely empty the bowels of stool.
I should only be in the hospital a couple days. We’ll just have to wait and see how long it takes for my intestine to wake up and work as it should again. I’m hopeful that if surgery goes as it should that I won’t have a ton of pain. The biggest thing that could derail surgery is how much scar tissue I have. I’ve had two previous open abdominal surgeries so scar tissue is a potential problem. Scar tissue tends to make things stick together and that sticking could make it difficult to pull my intestine out of my current stoma location. If scar tissue were to make things tricky, then if would likely become yet another open surgery and a longer hospital stay.
This will be my third intestinal surgery in under two years. By comparison, this should be an easy surgery. I’m really not worried about this one. Even if it becomes an open surgery, I’ve been there before. I have the scars to prove it.
I recently moved to Florida from Wisconsin and had to find a whole new set of doctors. In Wisconsin, I had a surgeon I saw for issues with my ileostomy. Interestingly enough, it is not gastrointestinal that deals with ostomies, even once they’re created and working well. No, for any GI issues once you have a stoma, it’s back to a colorectal surgeon. In my case, I hadn’t expected to need a colorectal surgeon in Florida. My stoma was working well. I expected to need an ostomy nurse to help with pouching issues from time, but that wasn’t a big deal. Unfortunately, I needed to find one.
Last fall, not long after I had surgery and received my new stoma, I developed what I now know was a fistula. It was pretty small and just the occasional bubble came out. My surgeon’s PA at the time didn’t think it was a big deal and at the time, my stoma wasn’t being active and so she couldn’t see it in action. Fast forward to the last few months and that hole has been more and more active. I have more and more stool coming out through that hole. In general terms, a fistula is an abnormal hole between two body parts. Mine is from my small intestine through my skin and comes out where my stoma meets my skin. I saw an awesome ostomy nurse last week, who has been an ostomy nurse for more than 30 years and she confirmed that what I have is a fistula. Unlike the last time I saw someone about it, the fistula was very active and she captured several good photographs. I then saw a local colorectal surgeon today and the pictures were good enough that I didn’t even have to take my bag off for him to get a look at my stoma.
The outcome of today’s appointment is that I need surgery to fix the fistula.We’re aiming for laparoscopic and outpatient surgery, but that may not be possible. I’m hoping it is, but we just don’t know. The surgery itself is considered a stoma revision. It will undoubtedly include pre-surgery bowel prep. Bowel prep really isn’t fun, but hopefully it’s just magnesium citrate. I handle that better than something like colonoscopy prep (they both have the same purpose – to completely clean out your bowels). I will approach the surgery as if it will be inpatient and bring a bag of hospital supplies – things like a robe, dvds, personal stuff. I’ve got the hospital bag routine down pat and I’ll just prepare like I’m going to be admitted.
I am tired of all my complications. Some days I feel like my life the last two years has just been one complication after another. Aside from this current complication, my ovarian fragment will also have to be addressed in the coming years. I’m on medication for it now, but the medication isn’t a long term solution. So in addition to my new surgery, I have what will be a fourth surgery on the not so distant horizon. I’ve already managed 8+ months without a hospital admission (and that may go up depending on when I actually have surgery), but now I’d like to go a year.
Life is just full of complications. I’ve certainly had my own bunch of complications.Until the last few years, they were relegated to things like moving, finding new friends, a bout of depression, and ADD. Then a few years ago I was diagnosed with bipolar disorder. Thanks to some amazing people in my life, I found my equilibrium again. Two years later, I was diagnosed with stage iv colon cancer and discovered a whole new realm of complications and trials. The two year anniversary of my first hospital stay is tomorrow. It was during that week long stay that I was diagnosed. Including that first admission, I’ve had ten hospital admissions in the last two years. I spent 12 days in rehab after my first surgery because my surgeon stretched the femoral nerve going to my right leg. I’ve had a chest tube and two liver drains. I’ve had two major surgeries and a third to come in a few years. That first surgery unexpectedly left me with a colostomy. My second surgery purposefully left me with an ileostomy. I have a risky surgery yet to come to remove a piece of ovary accidentally left behind after my second surgery. And now I have a new complication.
I have what’s called a stomal fistula. In general terms, a fistula is an abnormal connection between two body parts or between an organ and the skin. As a general rule, fistulas aren’t a good thing and aren’t fun to deal with. Some are more serious than others. Mine is from my small intestine out to the skin where my stoma meets the skin. So instead of one hole with stool coming out, I have two. It makes changing my bag a little more challenging. It makes keeping my skin there healthy a challenge. I saw an ostomy nurse last week and she confirmed for me that it is a fistula and she gave me some tips on dealing with bag changes. She also recommended seeing a colorectal surgeon about it. It remains to be seen how serious it is. I’ll be making some phone calls tomorrow to see if I can see a colorectal surgeon anytime soon. I have to see a colorectal surgeon because they are the ones who manage ostomies. So hopefully I will soon find out just how big a complication I have on my hands.
It helps me to know this life was never meant to be easy. It was meant to be a time of testing and of trial. The Plan of Salvation helps us understand the role of trials in our lives. We agreed to come to earth, be given a physical body, and be tested to see if we would still follow our Heavenly Father with our memories of before forgotten. If we followed Heavenly Father and do as He asked, we would be able to live with Him again and even become like Him. We would be able to live with our family in Heaven forever. Being on earth means we all agreed to that plan. We agreed to be tested, believing that whatever happened to us on earth would be worth the reward of living with our Heavenly Father and our Savior Jesus Christ again.
The fall of Adam and Eve means we’re living in a fallen state and subject to the problems inherent in mortality. Without the fall of Adam and Even though, we couldn’t have children and create families. The fall of Adam and Eve means we can feel true joy, but it also means we can feel sorrow. Without sorrow, we would never know true joy. The combination of the Fall and mortality means we are subject to sorrow and sickness and infirmities. Another part of the Plan of Salvation included giving each of us the ability to make our own choices. Sometimes our choices hurt others, but God will not interfere in the choices of anyone.
And so life is full of complications. But each of us has our own trials and struggles to deal with. Some of those struggles are a direct result of our own decision making. Some are a result of another’s choices. And some are just a part of living in a fallen world. They aren’t anyone’s fault; they just happen. The Plan of Salvation is the answer to why bad things happen to good people. It is the answer as to why I was diagnosed with stage IV colon cancer at age 32.