Tag: ileostomy

A Neverending Cycle

Published on by Jacqueline1 Comment

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

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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

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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!

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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

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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

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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

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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

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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

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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’s Complications

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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.