franandaj
I'm so happy, I could BOUNCE!
- Joined
- Nov 15, 2009
Hello! And welcome to another franandaj Cruise Trip Report!
This one is going to be a little different than previous Trip reports. If you have read my reports in the past, whether they be a cruise, a trip to WDW, or just my day trips to the parks at Disneyland Resort, you know that my wife Fran and I tend to be pretty mellow. We spend a lot of our time dining, whether it’s at a fancy restaurant or burgers, hot dogs or Mac n cheese, we love to eat good food. We aren’t ride junkies, and we rarely make rope drop. I expect this trip is going to be a lot more mellow than others especially for Fran.
Now we are not alone on this trip. On our last cruise in 2018, where we finally made Platinum, we traveled with a very fun group of friends. All of whom were met here on the DIS.
Back when we were on our trip to Disneyworld in February of 2022, I got a text from our friends Karin and Tom from Austria that they had just booked a cruise out of San Diego in February of 2023 for a “great price”! Several months earlier, I had booked a cruise in April of 2023 for a “not” so great price. When I checked the price of the cruise in February the price was $2K cheaper than the spring cruise!
It was a no-brainer to switch to the earlier cruise with friends and less money! Little did we know that we were on the brink of a life threatening disaster, but I’ll get to that in a moment.
This cruise is 7 nights long on the Disney Wonder, departs out of San Diego, and we have our favorite handicapped accessible stateroom booked. We sailed in this room about 7 ½ years ago, it's the one with a little room for a house elf! We will probably not be participating in a lot of excursions, and just generally be mellow and hang out. I need the downtime.
In case you need a reminder, this is me and Fran in our natural environment.
And also us at WDW last year.
So getting to our situation for the past year. Bear with me, it’s a long story and I’ve tried to be as succinct as possible, but a lot happened. I’m leaving out a lot of details, but giving you the basic facts. Fran has come to terms with everything that has happened and has agreed that I can share her condition. You won’t be hearing the gory details, just the cleansed version, but it will give you insight into traveling under some not so ideal circumstances.
For about three or four years Fran had been experiencing severe stomach cramps, which became increasingly uncomfortable. She had seen a gastroenterologist regularly and even had one of the last colonoscopies done by hospitals in March of 2020. About three days after she did it all elective surgeries were canceled due to covid. They found nothing remarkable with that test.
She continued to see the doctor through tele-med visits, and even saw his assistant several times in the office once things began to open up. She did all kinds of tests, took various medicines, and still the pain persisted. At one point we even thought that drinking Mtn. Dew was causing the problem.
The pain reached excruciating levels at the end of March in 2022. Our Primary doctor even prescribed blood work to see if she could determine what was wrong. There was nothing of note on that blood work. After the blood test, Fran laid down for a bit. When she woke her stomach had a hard lump that wasn't there before. I sent pictures to the doctor and she said, "Go to the ER, now!"
Well it turns out that her colon had ruptured. The surgeon that we were assigned to did emergency exploratory surgery. We later learned that the only thing he did was clean up her insides (removing a portion of her colon), vent her colon out her stomach, and give her an ileostomy to save her life. Most people are familiar with the concept of a colostomy, this is similar, but at an earlier point in the digestive system.
The Doctor’s plan was to allow her time to get her strength back and heal some. Then he would go back in with another exploratory surgery and discover what had caused her colon to rupture, there was a blockage in there somewhere and he needed to find and fix it. Once he had repaired the blockage, he could reverse the ileostomy and "hook her back up" with a normal digestive system.
Following the emergency surgery, Fran spent a week in ICU, a week in Telemetry, and two weeks at a skilled nursing facility before coming home. It was during this time that she got acquainted with her ileostomy. She basically had two wounds in her stomach. One was spewing out
. The other was mostly dormant. So she named her ileostomy “Winnie” short for “Winnie da Pooh”. 
The other wound on her stomach she named Piglet because he is such a good friend to Winnie. She referred to her entire belly as the “Hundred Acre Wood”.
It was a long period of recovery and after many setbacks, disappointments and just generally tough times, we finally got a surgery date in August of 2022. The surgeon was able to repair the blockage, and in the process he closed up Piglet. However, he still couldn’t reverse the ileostomy. We had another 2 ½ months dealing with Winnie. Without going into detail, let me just say that an ileostomy is difficult to take care of. She wore a bag on her right side and it would constantly leak. She did not go out of the house much, and we had to carry an emergency medical supply bag whenever we went anywhere. The few times we did go places, we ended up with minor emergencies to take care of in the restroom. Sometimes we brought a change of clothes, but luckily that wasn’t necessary.
Finally, in November, seven and a half months after the initial surgery, the surgeon scheduled her for the reversal of the ileostomy. Though she was released after four nights in the hospital, we could tell there was something very wrong going on. She was readmitted to the hospital one week after the reversal surgery. It turns out that she had developed a fistula. A fistula is an abnormal connection between an organ, vessel, or intestine and another organ, vessel or intestine, or the skin. Fistulas can be thought of as tubes connecting internal tubular structures, such as arteries, veins, or intestine, to one another or to the skin.
Piglet was a fistula. The one she had developed after the reversal went from the colon out of the body via a place that it wasn’t supposed to. She was released again and the surgeon said he would consult with a colon specialist as to how to proceed. Because of this fistula she developed an e coli infection in her blood and developed sepsis. After an unbelievably awful Emergency Department experience she was finally re-admitted to the hospital on December 10th.
Her surgeon visited her while she was in emergency and revealed his solution for her fistula. He would give her a reversible colostomy on the other side to take the pressure off the lower colon while the area with the current issue could heal. During that surgery he would also repair the fistula to the best of his ability. She was in the hospital for 27 days that time, in and out of ICU, and finally released with a gaping wound in the middle of her stomach in addition to the colostomy. She was released from the hospital exactly 50 days before our cruise. There were several times when I seriously doubted that we would be able to go. While she did have some Physical Therapy in the hospital those 27 days on her back really took a toll on her strength.
She still has great difficulty moving. Getting out of bed, or even standing up from being seated is difficult. It requires a great amount of effort on her part. You have to give her kudos for not giving up!
For almost two months a home nurse visited her daily to change the dressing on the wound as it healed. When she left the hospital in January the wound was very large, however, the doctor told us that it would be “nothing that we couldn’t manage on our own”, when we asked him about this cruise at a follow up visit. He was right, the wound continued to shrink in size. When I saw the wound for the first time in the hospital it was large enough that you could have placed a "lunchbox" sized apple inside. When the nurse changed the dressing the day before the cruise, it was small enough that a date would fill the cavity.
The doctor also assured us that many people live their entire lives with a colostomy and we did not need to alter our plans. Never in our wildest dreams did we think that almost a year later that we would still be dealing with this, but here we are. The colostomy has been much more manageable than the ileostomy. While we would be changing bags 4-5 times a day with the former, we are going 4-5 days without having to change the bag now.
And of course she still calls it Winnie, but it’s Winnie2!
I hope you’ll join us and find out how we tackle this challenging situation and get back to living our lives after a year of putting life on hold.
This one is going to be a little different than previous Trip reports. If you have read my reports in the past, whether they be a cruise, a trip to WDW, or just my day trips to the parks at Disneyland Resort, you know that my wife Fran and I tend to be pretty mellow. We spend a lot of our time dining, whether it’s at a fancy restaurant or burgers, hot dogs or Mac n cheese, we love to eat good food. We aren’t ride junkies, and we rarely make rope drop. I expect this trip is going to be a lot more mellow than others especially for Fran.
Now we are not alone on this trip. On our last cruise in 2018, where we finally made Platinum, we traveled with a very fun group of friends. All of whom were met here on the DIS.
Back when we were on our trip to Disneyworld in February of 2022, I got a text from our friends Karin and Tom from Austria that they had just booked a cruise out of San Diego in February of 2023 for a “great price”! Several months earlier, I had booked a cruise in April of 2023 for a “not” so great price. When I checked the price of the cruise in February the price was $2K cheaper than the spring cruise!
It was a no-brainer to switch to the earlier cruise with friends and less money! Little did we know that we were on the brink of a life threatening disaster, but I’ll get to that in a moment.
This cruise is 7 nights long on the Disney Wonder, departs out of San Diego, and we have our favorite handicapped accessible stateroom booked. We sailed in this room about 7 ½ years ago, it's the one with a little room for a house elf! We will probably not be participating in a lot of excursions, and just generally be mellow and hang out. I need the downtime.
In case you need a reminder, this is me and Fran in our natural environment.
And also us at WDW last year.
So getting to our situation for the past year. Bear with me, it’s a long story and I’ve tried to be as succinct as possible, but a lot happened. I’m leaving out a lot of details, but giving you the basic facts. Fran has come to terms with everything that has happened and has agreed that I can share her condition. You won’t be hearing the gory details, just the cleansed version, but it will give you insight into traveling under some not so ideal circumstances.
For about three or four years Fran had been experiencing severe stomach cramps, which became increasingly uncomfortable. She had seen a gastroenterologist regularly and even had one of the last colonoscopies done by hospitals in March of 2020. About three days after she did it all elective surgeries were canceled due to covid. They found nothing remarkable with that test.
She continued to see the doctor through tele-med visits, and even saw his assistant several times in the office once things began to open up. She did all kinds of tests, took various medicines, and still the pain persisted. At one point we even thought that drinking Mtn. Dew was causing the problem.
The pain reached excruciating levels at the end of March in 2022. Our Primary doctor even prescribed blood work to see if she could determine what was wrong. There was nothing of note on that blood work. After the blood test, Fran laid down for a bit. When she woke her stomach had a hard lump that wasn't there before. I sent pictures to the doctor and she said, "Go to the ER, now!"
Well it turns out that her colon had ruptured. The surgeon that we were assigned to did emergency exploratory surgery. We later learned that the only thing he did was clean up her insides (removing a portion of her colon), vent her colon out her stomach, and give her an ileostomy to save her life. Most people are familiar with the concept of a colostomy, this is similar, but at an earlier point in the digestive system.
The Doctor’s plan was to allow her time to get her strength back and heal some. Then he would go back in with another exploratory surgery and discover what had caused her colon to rupture, there was a blockage in there somewhere and he needed to find and fix it. Once he had repaired the blockage, he could reverse the ileostomy and "hook her back up" with a normal digestive system.
Following the emergency surgery, Fran spent a week in ICU, a week in Telemetry, and two weeks at a skilled nursing facility before coming home. It was during this time that she got acquainted with her ileostomy. She basically had two wounds in her stomach. One was spewing out
. The other was mostly dormant. So she named her ileostomy “Winnie” short for “Winnie da Pooh”. The other wound on her stomach she named Piglet because he is such a good friend to Winnie. She referred to her entire belly as the “Hundred Acre Wood”.It was a long period of recovery and after many setbacks, disappointments and just generally tough times, we finally got a surgery date in August of 2022. The surgeon was able to repair the blockage, and in the process he closed up Piglet. However, he still couldn’t reverse the ileostomy. We had another 2 ½ months dealing with Winnie. Without going into detail, let me just say that an ileostomy is difficult to take care of. She wore a bag on her right side and it would constantly leak. She did not go out of the house much, and we had to carry an emergency medical supply bag whenever we went anywhere. The few times we did go places, we ended up with minor emergencies to take care of in the restroom. Sometimes we brought a change of clothes, but luckily that wasn’t necessary.
Finally, in November, seven and a half months after the initial surgery, the surgeon scheduled her for the reversal of the ileostomy. Though she was released after four nights in the hospital, we could tell there was something very wrong going on. She was readmitted to the hospital one week after the reversal surgery. It turns out that she had developed a fistula. A fistula is an abnormal connection between an organ, vessel, or intestine and another organ, vessel or intestine, or the skin. Fistulas can be thought of as tubes connecting internal tubular structures, such as arteries, veins, or intestine, to one another or to the skin.
Piglet was a fistula. The one she had developed after the reversal went from the colon out of the body via a place that it wasn’t supposed to. She was released again and the surgeon said he would consult with a colon specialist as to how to proceed. Because of this fistula she developed an e coli infection in her blood and developed sepsis. After an unbelievably awful Emergency Department experience she was finally re-admitted to the hospital on December 10th.
Her surgeon visited her while she was in emergency and revealed his solution for her fistula. He would give her a reversible colostomy on the other side to take the pressure off the lower colon while the area with the current issue could heal. During that surgery he would also repair the fistula to the best of his ability. She was in the hospital for 27 days that time, in and out of ICU, and finally released with a gaping wound in the middle of her stomach in addition to the colostomy. She was released from the hospital exactly 50 days before our cruise. There were several times when I seriously doubted that we would be able to go. While she did have some Physical Therapy in the hospital those 27 days on her back really took a toll on her strength.
She still has great difficulty moving. Getting out of bed, or even standing up from being seated is difficult. It requires a great amount of effort on her part. You have to give her kudos for not giving up!
For almost two months a home nurse visited her daily to change the dressing on the wound as it healed. When she left the hospital in January the wound was very large, however, the doctor told us that it would be “nothing that we couldn’t manage on our own”, when we asked him about this cruise at a follow up visit. He was right, the wound continued to shrink in size. When I saw the wound for the first time in the hospital it was large enough that you could have placed a "lunchbox" sized apple inside. When the nurse changed the dressing the day before the cruise, it was small enough that a date would fill the cavity.
The doctor also assured us that many people live their entire lives with a colostomy and we did not need to alter our plans. Never in our wildest dreams did we think that almost a year later that we would still be dealing with this, but here we are. The colostomy has been much more manageable than the ileostomy. While we would be changing bags 4-5 times a day with the former, we are going 4-5 days without having to change the bag now.
And of course she still calls it Winnie, but it’s Winnie2!
I hope you’ll join us and find out how we tackle this challenging situation and get back to living our lives after a year of putting life on hold.
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