My Hospital Stay, Explained

Now that I’ve been home a bit, I thought I’d explain how an expected hospital stay went from 2-3 days to 12 days.

Surgery was on Thursday, July 9th. The day before I had to do a bowel prep, which I expected. Bowel prep for surgery isn’t that different from the prep for a colonoscopy. Essentially, you drink a bunch of laxatives to clean out your intestines. In the case of surgery, it’s to decrease the risk of infection. Stool inside the abdomen is a recipe for infection. However, that can leave you dehydrated. That effect is worsened with an ileostomy. I was then NPO starting at midnight (nothing by mouth) until after surgery. All of that meant that by the time I was in preop Thursday morning, I was pretty dehydrated. To combat the ugly dehydration headache, they first gave me fentanyl. Fentanyl was great for the headache, but not long lasting. When it became clear that surgery wasn’t going to start on time, they gave me something more sedating. It was sedating enough that I’m one minute I was talking to the nurse and the next minute I had an IV in my hand with no recollection of how it got there. My headache was definitely gone though.

For my previous surgeries, my parents were allowed to be with me throughout preop. With COVID, my mom was only brought back to preop when it was time to say goodbye before I was taken to the OR. It made for a weird time in preop, especially as it dragged on. I did take my phone with me into preop, so I could keep her informed as things went on.

Surgery itself went well with no issues. My surgeon was able to go through my existing stoma to fix the fistula. In broad terms, he detached my stoma from my abdominal muscle, pulled out my intestine and respected it below the location of the fistula, and then attached the new end of my intestine to my abdominal muscle, using the same hole in my abdomen. This was the way we had hoped things would go. We didn’t know though until surgery whether previous adhesions (scar tissue) would inhibit my surgeon’s ability to pull out my intestine. I’ve had two open abdominal surgeries in the past and the thing about surgeries in general is that they tend to produce scar tissue. Scar tissue tends to make things inside the body stick together. There’s no doubt I have scar tissue, but thankfully it didn’t cause problems this time.

I spent a long time in recovery while I got a room assigned to me. By the time I got out of recovery, it was mid evening. I ended up on the 10th floor, the surgery, trauma, and colon & rectal surgery floor. By the time I got to my room, my mom was already waiting for me. That night wasn’t much different than any night post surgery – good drugs and innumerable nurse interruptions.

At this point, my blood pressure was lower than my doctors and nurses would like. My usual blood pressure is around 115/60. Typically when one is dehydrated, their blood pressure drops. That was initially the case with me. Low blood pressure also can cause dizziness, and for me it did.

My real problems began on Friday, though I didn’t know that until Saturday. Anytime I’ve been in the hospital, they’ve measured both my urine output and my ostomy output. Ileostomy output is very liquid. This is because stool is coming out of the small intestine, rather than the colon (large intestine). One of the things the colon does is remove water from stool and circulate it back into the body. As a result, dehydration is always a risk for anyone with an ileostomy. Normal output for an ileostomy is around 1000 ml per day. My output for Friday was 2000ml. That explained my dizziness and muddled thinking. With output that high, my doctor couldn’t release me because as a practical reality, I would struggle to drink enough fluids to remain hydrated.

Through this, there were many times my blood pressure struggled to reach 95/65. I had several days where I was dizzy and so muddle headed I struggled to text coherently. I had two sets of doctors while in the hospital – my surgeon’s group and a group of internal medicine doctors. Between them they worked to get my output under control. In general, ileostomy output is controlled in two ways. One is slowing down the gut and one is thickening output. In my case, we did both. The first was done via Imodium and the second was done via Metamucil.

Things were going well until Thursday when I had a very ugly pain day. It was a massive struggle to get my pain under control that day. My family and I have suspicions as to why it was a struggle, but that’s a story for a different day. On Friday, we talked to the resident working with my surgeon. We had the choice of trying to talk with pain management in the hospital that day, or being discharged and trying to work with pain management on our own. I opted to try and meet with pain management in the hospital. Pain management was never able to meet with us, but it turned out to be a good thing I was still in the hospital.

That Friday, my ileostomy output went nuts again, this time measuring over 2300 ml. I was all set on Saturday to be discharged until the surgeon on call came by and did his rounds. He came into my room and let me know that with that kind out output and the Florida heat, he couldn’t in good conscience discharge me. He said I’d be there until at least Monday. Thankfully, a tweak in my medication got my output back under control and I was discharged Monday morning.

That first Saturday I was in the hospital, when my surgeon told me about my increased output, he tried to explain what was going on. He said that for a small subset of people, when doctors mess with the bowel, their output just goes nuts. Apparently I belong to that small subset. Another instance of not doing things the easy way. And that’s the story of how an expected 2-3 day hospital stay turned into my longest hospital stay yet (12 days).

Still Here

The hope yesterday had been that I’d get to go home today. Turns out that was a pipe dream. While my BP got better yesterday after fluids, it’s back to struggling to get over 100. This morning it was under 90 and only got a couple points better when I sat up. It did get high enough for my nurse to be comfortable giving my the dose of dilaudid.

The bigger issue is that my ileostomy output yesterday was more than 2 liters. That’s way too much for the doc to be comfortable discharging next. In doing a little research, normal output for an ileostomy should be 800-1000 ml/day. Pharmacy screwed up with they input my medications into the system and didn’t put in that I take Imodium and Metamucil at home. So until this morning, I had had either. I’ve now had a dose of Metamucil and at some point will have a dose of Imodium. Together, they slow down the passage of fluids & nutrition through my small bowel. That gives it time to properly digest things and absorb the things it needs to. Those two meds also help thicken up my stool so I’m not constantly losing fluid. One of the functions of the colon is to remove the liquid from stool and put it back into the body. That is one of the few functions the small bowel cannot take on following a total colectomy. Between the very liquid stool and urinating, it can be difficult at times to stay hydrated and then when you become dehydrated, it’s difficult to fix without medical intervention.

My technician came in and checked my blood pressure. Even after a full bag of fluids (1 liter), my blood pressure is still low. It was 95/54. Normal for me is around 115/60. It got that high after heater’s round of fluids but today it’s been in the tank again.

My mom will be here shortly and we’ll see if I can walk the halls. I haven’t seen people walking the halls the few times I’ve had my door open but wouldn’t surprise me if we’ll not allowed to walk the halls. If that’s the case, the next best thing is to sit in the big chair in my room.

I did get a look at my new stoma last night when I changed my bag. It took a good chunk of the day to get someone to help me change it. I literally just needed another set of hands while I changed it myself. With the pain, I don’t have quite the range of motion right now. So I needed someone to help me make sure everything made it in the garbage and to hand me things that might end up on the floor or just too far to reach. I had all my supplies and changed it myself with that extra pair of hands. Initially, the nurse and tech didn’t understand why I’d want to change it, mostly because they assumed I’d simply be putting on the same appliance. It took them a few minutes to grasp I was going to put on a bag Id brought from home. My stoma right now is pretty ugly and somewhat bloody. It’s also very big and my usual bags are just barely big enough to accommodate it. It’s hard to know right now how the stoma is pointed, but I’m hoping my current bag system will work with it long term. I know for sure though that I’m not interested in a two piece system. There’s too much hard plastic that can dig into my skin (this wasn’t my first run in with a two piece system). My own bag has some plastic of course, but it’s so much softer and pliable that by a few hours after a bag change, I don’t even notice it. The bag change went well and so far no leaks. While it heals, I’ll be much more prone to leaks as the stoma itself will shrink as it heals. While I don’t know how big my stoma will be when it heals, it won’t be as big as it is now.

To end, I’ll be praying I get out of here tomorrow, but that’s largely determined by whether we can get my stoma back on track. Right now it’s in overdrive.

Surgery

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.

Thursday’s Surgery

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.

Surgery, Again

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.