Choosing to Trust

I’ve been trying to write this post for weeks now, but the words just weren’t there. I couldn’t seem to put into words what choosing to trust the Lord really means. It’s been on my mind for a few months now, and I think I finally know what I want to say.

What does it mean to trust the Lord? In my mind, it means to put your life in His hands and trust He will see you through whatever storm you face. It’s not really that easy; nothing important ever is. I’ve come to believe it’s supposed to be hard. Unconditional trust isn’t something the natural man knows how to do. We have to learn to trust the Lord unconditionally. We do that a little bit at a time, day by day. Every single day we have to choose to trust the Lord.

It’s easy to trust the Lord when things are going well. How do we trust Him when it’s hard and we don’t know what comes next? How do we trust the Lord when it looks like nothing could ever be right again? How do we trust the Lord when it appears His promises could never come true? To a certain extent, it’s like stepping into the abyss. You just have to do it. It’s scary to trust what you can’t see, especially when your mortal eyes and mortal perspective can’t possibly see a way through. When in doubt, choose to trust the Lord.

Over the last few years, I’ve learned the hard way how to choose to trust the Lord. Even then, I don’t always remember to trust. Sometimes fear gets to me and overwhelms that urge to trust. How do you trust the Lord when facing down a possible terminal illness? How do you trust the Lord’s promises when you can’t see past what’s in front of you?

Trust takes practice, even when it involves trusting the Lord. It also takes a change in perspective. It also means remembering that the Savior has been down every road any of us will ever travel. Heavenly Father knows all. Together, they will lead us through whatever storm we face. Although we may not be able to see the path ahead, they can see it. They are holding their hands out to us, willing to lead us through the dark, but it’s up to us to take hold.

This idea of trust, it doesn’t overtake the practice of faith. Rather, it’s an aspect of faith. Learning to trust is something we can do to help build our faith in Heavenly Father and Jesus Christ. As we learn to trust Them, we get to know them. We begin to understand Their nature, to the extent that we can. They will never let us down. Our Savior has been through everything we have been through. As we come to understand that, we come to better understand the Atonement. With increased understanding comes increased faith. With increased faith, the gospel goes from abstract to something that works in our daily lives. We can see how the Plan of Salvation actually works in our daily lives.

The better we get at trusting the Lord and His promises, the less room there is in our lives for fear. This is because trust leads to faith, and where there is faith there is no fear. When we have faith, there is simply no room for fear. That’s not to say it’s easy, because it isn’t. Like anything else in life, it takes practice to get better. But we’re also human and sometimes we make mistakes. Sometimes we forget to turn first to the Lord. We forget He is reaching out His hand to us, ready to comfort us and lead us through the storm. But every day we can choose to trust Heavenly Father and Jesus Christ. We can make that conscious choice and in time we’ll come to know them and trust them in good times and in bad.

Every day, I do my best to trust my Heavenly Father to see me through whatever comes next. My medical status right now is what I would call stable but unknown. Earlier this month, I spent several days in the hospital with dizziness and blood pressure issues. At one point, my blood pressure got down to 79/40. I saw many different doctors and they ran several different tests. None of those tests produced a diagnosis. Thanks to two medications, my blood pressure stabilized back in the normal range and I was discharged. Following a hospital stay in late August, I had seen both an endocrinologist and a nephrologist for a lower than normal blood pressure. Endocrinology produced blood work that pointed perhaps to hypothyroidism, but not classic hypothyroidism. For now I’m on a low dose of a synthetic thyroid hormone. Further testing still cannot point to what exactly is going on with my endocrine system.

I saw my nephrologist again and he essentially threw his hands up in defeat. He has no idea what is going on. The hospital tested for all the usual answers and none of them were the right answer. So here I am with two medications to my list and no answers as to why my blood pressure is so wonky. I have no answers as to my dizziness either, dizziness that is sometimes so bad all I can do is lay in bed. I don’t know why my thyroid blood work is out of whack. A trip to Mayo Clinic is in my future, but there are no guarantees that they will have answers either. In the meantime, my only answer is to put my trust in my Heavenly Father, and trust that He will see me through whatever comes next.

Finding Routine

Over the last month, life has found a certain rhythm, a routine if you will. My day begins around 9am, with breakfast and meds right after. By 10, I’m getting hooked up to my fluids – 1 liter of lactated ringers. By 11:30, my fluids are done and I’m ready for a nap. Some days it’s a long nap, some days it’s not. Most days though it’s a long nap. I’m usually up again between 2 & 3 and awake until 9 or 10. Bedtime is at 9 or 10, whenever I lose my first wind. Then I’m up a couple times at night to empty my bag and then the day starts all over again.

Overall I’m dealing with a lot of fatigue along with some joint issues. A few weeks ago I started having some joint pain out of nowhere, including in my fingers. I’m still having output issues and a lousy appetite.

I finally saw my oncologist today and cancer wise, I’m still in the clear. My scans all looked great. He echoed seeing an endocrinologist, so I’ll be making that appointment tomorrow. He also ordered some basic thyroid blood work that I’ll have done tomorrow. Thyroid issues would explain my issues. I also have an appointment with a nephrologist the first week of October. My next oncology appointment isn’t until 2021!

I’m beyond ready to go back to maintenance appointments. I miss feeling really good. I’ve been thinking about last summer and how amazing I felt. I had a great big party celebrating a year cancer free and then a few weeks later traveled to Utah for a friend’s wedding. I had times this spring where I felt really good, but not in awhile. Last summer I was finally starting to drop the length of my naps. Then I had my big surgery and naps were back in full force (as expected). After that, I had naps nearly every day, but I did well after the nap. These days, I have my nap and could still go back to sleep. And sleep. And sleep.

I’ve been reminded again that once you’ve been diagnosed with cancer, there’s no going back to the way things were before. Not emotionally, not physically, not medically. Even with the great strides made in cancer treatment, it’s still a bit of a scorched earth approach. And in the end, you do what you have to in order to get to NED and stay that way. But it leaves scars. It can easily leave behind additional medical issues, some more immediate and some that crop up down the way.

For me, it’s left behind an ostomy and the issues and complications it brings. It’s left me with an ovarian fragment to be dealt with one day. It’s left me with “scanxiety,” despite being pretty good at dealing with anxiety. Even once you get to NED, there’s no going back to before.

A Neverending Cycle

Sometimes my life feels like a neverending circle of doctors. I’ve not even been in Florida six months and already I’ve had one surgery, two separate hospital stays, and parts of 17 days in the hospital. And now I’m on IV fluids at home for the foreseeable future.

My ileostomy is still dysfunctional, nearly six weeks out from surgery. My output is still too high and too thin. As a result, I was discharged from my last hospital stay (August 3rd) with orders for IV hydration at home three times a week. Last week my surgeon upped that to daily IV hydration. I saw my surgeon again yesterday and he told me at this point, it’s likely to be another 3-6 months before my ileostomy sorts itself out. Yes, that’s months. So then I’m probably going to be on home IV fluids for awhile too.

My quarterly oncology appointment is next week, with my abdomen/pelvis/chest CT scans having been completed last week. No matter how good someone might be at controlling anxiety, “scanxiety” gets even the best of us. “Scanxiety” is anxiety surrounding new medical scans of any variety and waiting for the results. My anxiety is typically well controlled, but scanxiety still sneaks up on me from time to time. Hopefully everything is normal so that I can have a relatively boring appointment with my oncologist next week.

None of this is what I expected when I moved to Florida this May with my parents. I certainly didn’t expect needing to find a colorectal surgeon or having a new medical experience (at home fluids). I sincerely miss the days when medically my life was uncomplicated. I’ll even take going back to last summer when I was feeling great and doing whatever I wanted. I had recovered from chemo & my latest hospital stay and my second surgery hadn’t happened yet. But I can’t go back. All I can do is move forward and make the best of what I’ve got.

Hospital Stay #2

Yep, for those unaware, I had a second hospital stay recently. I was discharged from my initial hospital stay on July 20th and had an appointment the following Monday (27th) to see my surgeon for a followup. My stoma didn’t look great, but that’s a different conversation. Otherwise, things were going well enough when I saw my surgeon. Output was still a little high, but I was managing alright. However, that Monday night, my output went nuts again. I ended up going to urgent care for fluids on Tuesday as I was dehydrated. They called my surgeon who then wanted to see me the following day – Wednesday the 29th.

When I saw my surgeon, he prescribed a couple new medications to try. One was a drug similar to Imodium, but more powerful. The other was a cholesterol medication you mixed into a drink. He wanted to see me again on Friday. He also said if I was still feeling bad the next day or prior to my appointment on Friday, I could call his office for a direct admit to the hospital. For those unaware, direct admits are when your doctor admits you to the hospital and bypasses the ER.

I was then up all night Wednesday night emptying my bag. It was filling up every 90-120 minutes. At that speed, not only could I not drink enough to keep up, my digestive system was moving so fast that it couldn’t absorb anything I drank. I made the decision after I got up to call my doctor for a direct admit. I called my doctor’s office to leave a message and a little while later got a call back telling me my doctor had put in the orders and the hospital would give me a call as soon as they had a bed open. To my surprise, nearly as soon as I hung up with my doctor’s office, the hospital called. They had a bed ready. Even with packing a bag for the stay and 35 minute drive, I was settled in my hospital room by 11:30. It took some time for my doctor to put the orders in, but eventually I got put on fluids. After being on fluids for 36 hours, I was finally feeling more like myself. My output was still nuts so I was kept on fluids. It was decided that I would get an IV line I could go home with so I could receive IV fluids at home. My output was still high, but with a plan in place for fluids at home, I was discharged on Monday with an IV called a midline. I’ve taken to calling my midline my “appendage.”

I’ve now gotten fluids three times at home and it’s amazing to me how much better I feel afterwards. We had some kinks to work out with the fluid setup, but we’ve now got it working well. Right now I’m set to get fluids three times a week, but I see my doctor tomorrow and will see if I can get fluids every other day. I got fluids on Friday and the plan had been to wait until Monday for the next round, but I needed them today. I noticeably drag by day two and with a headache that just doesn’t quit until I get fluids. That headache is generally my first sign I’m getting dehydrated, especially since neither tylenol or advil will get rid of it. Hopefully fluids aren’t a permanent thing, but I was aware it was a possible complication when I had surgery a year ago to remove my remaining colon and go from a colostomy to an ileostomy.

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).

Hopefully Home Tomorrow!

Yesterday was a very rough day, pain wise. We opted to try going off IV pain meds. Any of you who have been with me from the beginning knows how bad that has gone in the past. A number of factors played in but I didn’t get the new round of pain meds my doctor prescribed until three hours after he prescribed me. By that point I was in a lot of pain. That meant that by midnight, the doc on call authorized a one time only dose of 1mg of iv dilaudid. That finally broke through all my pain and stopped the viscous cycle. Today, I am on ibuprofen, Tylenol, a muscle relaxer, gabapentin, and 4mg of oral dilaudid. I am finally comfortable. 

The hope was to talk to pain management today but it doesn’t look like that’s going to happen, so I’ll be discharged tomorrow with enough meds for at least the weekend before dealing with pain management on our own next week. The reason we’re talking to pain management is that PM has many more options to keep me comfortable than my surgeon does.

All of this has been a great reminder of how dangerous a stomach/flu bug can be to me with my ileostomy. I know people who have gotten sick with what most consider the stomach flu and wind up in the hospital for a week because they can’t stay adequately dehydrated. Dehydration can lead to low BP, which can lead to respiratory distress, so it really matters. This spring before we moved, my parents both got the stomach flu. We did a good job isolating me from my parents and I did not get it. All of this is an easy reminder of how dangerous stomach bugs are to me.

Once Again, Not the Easy Way

It’s Sunday and I’m still in the hospital. I’m still having too much output from my ileostomy and it’s keeping me dehydrated and dizzy. My blood pressure overnight was great, but it bottomed out again this morning. In general, having an ileostomy leaves you at higher risk of dehydration because out is so liquid. Mine got all screwed up with surgery and bowel prep and it’s a struggle to get it back under control. Between my urine output and my ileostomy output, I’m losing too much fluid for me to manage the dehydration risk at home. I also can’t have the good pain meds until my blood pressure gets up over 100. That is because the pain meds can send my blood pressure down too. If my blood pressure gets too low, it can lead to respiratory distress.

I am now on both Metamucil and Imodium to bulk up my stool and slow it down. Bulking it up means I lose less liquid. I’m also getting two bags of fluid this morning. Unfortunately, the first bag only sent my blood pressure up by a point.

Since surgery itself went so well, I figured I was in the clear and that for once, I’d done things the easy way. As it turned out, I spoke so soon. I’ve had post surgery issues no one expected. My mind is all muddled and I hate it. The nurses won’t let me walk the halls with my dizziness, in case I were to fall. It’s like trying to think through molasses. That’s more disconcerting that my pain level. I can’t wait until I can go home and sleep in my own bed.

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.