Medical Issues

I know I told y’all all about my hospital stay and surgery and blah blah blah, but have I introduced you to my stoma? I don’t think I did. So, while I am not going to show you a picture of mine, I will tell you a little bit about what “it” is, and the things I need to take care of “it”.

If you have never heard of a stoma or colostomy before, you are not alone. I had no idea what a colostomy was until I was about 53 years old, when my mother had emergency surgery for a ruptured diverticuli and received one. She is now 84 years old, and had her colostomy reversed a few years ago.

After I received my colostomy in May, I also learned that there are different kinds of ostomies, which I also never knew. From the WebMD website:

A colostomy and an ileostomy are two kinds of surgery. These surgeries are done when a part of your intestine is diseased or damaged and doesn’t work right. The surgeon makes a hole in your belly and connects part of the small or large intestine to that opening in the skin. This opening is called the stoma.

This picture is also from the WebMD website. It is an illustration of what a stoma looks like.

My stoma is on my left side, and is still healing, so it is rather large right now. Stomas can and do change their size and shape as time goes on. Sometimes a colostomy can be reversed, and mine probably can be, but since I have no health insurance right now, it probably won’t happen, because the reversal would be an elective procedure. Unless I win the lottery or somehow manage to find an insurance company that will cover me, I will have my stoma for life.

After the surgery is done to place the stoma, you will no longer have your bowel movements through your rectum. That is now the purpose of the stoma. Something you should know, but I was not told, is that you have no control over what the stoma does. “It” will pass your fecal matter at will, and will also pass gas at will. Because there is no feeling in the stoma, you will not know when this is going to happen.

So, now that you know what a stoma is and what it does, I will tell you a little bit about what I have to do to take care of it. Because it is a “poop machine” that operates on it’s own schedule, if you have one, you will have to wear an ostomy appliance. This is also called a pouch or bag. I have what I call a “Blow Out Bag” that I take with me everywhere I go:

The company that sent me my starter kit of supplies sent this little travel bag. It is ugly, and really not big enough to carry everything that I need if I have to change the bag when I am out somewhere. So, I started using this backpack that I made. It is cute and pretty, and holds all the things I need:

Inside this bag is everything I need to be able to change the ostomy appliance when I am traveling away from home. I take it everywhere I go, just like when I had my babies and took a diaper bag with me.

So, just to educate you on what is needed to take care of a stoma, I have pictured the things that are in my backpack:

1. Adhesive remover wipes. This helps get the old bag off. If I don’t use one of these to help get the adhesive off, it hurts and can tear my skin. Don’t want that to happen, so I keep a supply of these in the bag.

2. Adhesive wipe. This one has a special type of glue on it to help adhere the wafer, or flange, to your body. You want that wafer to stick tightly so you don’t have a leak, or blow out.

3. Stoma adhesive paste. The paste is applied to the wafer in a bead around the hole that fits around the stoma. It forms an extra little barrier to help prevent leakage. It is much like denture adhesive.

4. Adhesive spray. Yep, another type of glue to help make sure that wafer stays put. I might not use all three of these things at once but I have them all “just in case”. I want to make dang sure I have no leaks.

5. Scissors. Sometimes if my skin is tender or irritated in one spot where the tape on the wafer would go, I use these to cut out a place so that tender area is not taped. Very handy to have.

6. Stoma size chart. Because the stoma can change size and shape as time goes on, you have to use this to measure it before ordering supplies. It is important to order the right size wafers. The right size helps prevent leaks.

7. A mirror. I have a much smaller one that came with the starter kit, but I can’t see much with it. I keep this larger mirror in the bag so I can see what I am doing. Since the ostomy is on my abdomen, having a mirror is very helpful.

8. Rubber gloves. Just in case of leakage.

9.  One of my “kits”. I put these together when I received my supplies, to make it easier to have everything I need in one place when it is time to change the appliance.

To make my kit, I use a gallon size zip lock bag. Inside that, there is a quart size zip lock bag, an adhesive remover wipe, an adhesive wipe, and an ostomy bag:

Notice that the bag has a plastic ring near the top. It fastens to the wafer much like a tupperware lid fits onto a tupperware bowl. The bottom is open so that you can empty the bag when needed, and is held closed by a plastic clip, which is not shown.

And finally, this is the wafer, or flange, that fits over the stoma and adheres to your abdomen. This one is still in the packaging, but you can see that it is fitted with a plastic ring where the bag attaches to it. Once you glue the wafer to your abdomen, and snap on the bag, you are finished.

I also keep a supply of wipes in the bag to use for cleaning up around the stoma.

I use the quart size zip lock bag to put the used pouch and wafer in when I take it off. Then, I put all the packaging from the new wafer and the zipped closed quart sized bag, into the gallon size bag, and throw it all away.

So, there you have the 101 on stoma care. If you have any questions, just ask. I will answer if I can. And if I can’t, I’ll ask over at Inspire.com, which is the best ostomy support group out there!

When I was still in the hospital, I was desperate for a pony tail holder. My hair was driving me crazy–I couldn’t wash it for almost a month except for a “chemical” wash in a thing like a shower cap. One day a volunteer came in to deliver my mail, and asked if there was anything she could do for me. I told her if she could get me a pony tail holder, I would be forever grateful. And she found one! It was one of the most wonderful moments of my life to be able to put my hair up! Thank you, mam, for your volunteer service at the hospital.

Also while I was in the hospital, I received mail. I got mail every day. When the volunteer came in to deliver my mail, they always said “You get more mail than anyone in this hospital.” In all, I got more than a hundred pieces of mail. There were so many cards and letters, and drawings from the sender’s children. Some days, all the pieces of mail were in yellow envelopes. Some days they were all in purple envelopes. And on one day all the mail I received was from former members of Girl Scout Troop 147, which I was the leader of from 1984 until 1990. I was amazed that those girls still thought of me after all this time.

Getting all that mail meant so much to me. It made me feel less alone, and more loved, than any of you who took the time to write my name on an envelope and stick a stamp on it will ever know. Being in a hospital 2000 miles from your family and friends, and 200 miles from your home, is a very lonely time. Getting all that mail really helped me feel better.

Another small thing was a phone call from Elaine, who I worked with at BellSouth back in the late 1980’s. She is one of my Facebook friends, and we tried to meet up for dinner a couple of years ago before the Zappa Plays Zappa concert in Atlanta, but things got too busy and we were only able to talk for a few minutes at the concert. She called me to tell me that she, too, had a colostomy back in 199o something. She talked about how she coped with it, and gave me some good advice. Mostly, for me, it was something I really needed at the time–to know that I was not alone and that there was someone who I could talk to at any time. Thank you, Elaine!

And last, I received 218 text messages from so many different people. I normally don’t text–I have email and Facebook, and use those almost exclusively to communicate with my family and friends. But when they put the first tube in my throat, I sent out a message that I would not be able to talk so if anyone wanted to say something to me, they should send a text message. And boy did they ever. Those texts, at all hours of the day and night, really helped me feel like people had not forgotten me.

So, yes, all of these are little things, but had huge impact on me. Thank you to everyone who reached out in some way. Every little thing helped me feel better.

I know I promised a post about my stay in the ICU a while back, but to be perfectly honest–I don’t remember much about those days. It wasn’t until I received a copy of my medical records from the hospital yesterday that I found out what happened during that time.

If you have never heard of ICU Psychosis, Let just tell you a little bit about it.  ICU psychosis is a condition that causes patients in an intensive care unit (ICU) or a similar setting to experience serious psychiatric symptoms.  ICU psychosis is also a form of delirium, or acute brain failure.

There are a number of reasons why ICU patients develop ICU Psychosis: Sensory Deprivation, Sleep Deprivation, Stress, and Medical Monitoring, are listed among environmental causes. Medical causes add to the list with pain, critical illness, medication reactions and side effects, infection, and dehydration. All of these things added together can cause a patient in ICU to develop serious psychosis responses.

So, you ask, what are the symptoms of ICU Psychosis? They include extreme excitement, anxiety, restlessness, hearing voices, hallucinations, nightmares, paranoia, disorientation, agitation, delusions, and abnormal behaviour.

Although I don’t recall much from my time in ICU, I do remember quite well some of the ridiculous things I did and experienced while there. I can not begin to imagine how much distress and worry I caused my family because of this.

My daughter, Becca, lives in Calgary, Alberta, Canada. I called her in the middle of the night ten times in a row, begging her to come and get me out of the hospital. I was convinced that her dog, Ilex, was sitting right outside the door to my room in ICU, so I was calling her to come and sit with me. Of course, in reality, neither Becca or Ilex were there.

I dreamed that I got a letter from a woman who told me that my husband was her boyfriend. I was so convinced that I got that letter that I was calling my children and step-daughter to tell them about it. I never took into consideration that Fabgrandpa and I live in a 32 foot RV trailer, and spend twenty four hours a day, seven days a week together, so there was no way at all that this could be true. And of course, that “letter” that I supposedly received was never found in the gigantic stack of mail that I did receive.

One of my best friends in the world works as a special agent for Department of Homeland Security. I called her one night, telling her that the hospital staff in ICU was trying to kill me, and that she needed to come to Flagstaff (from Florida) to arrest them all and take them to jail. I was thoroughly convinced that the nurses and doctors on staff were taking bets on what time I would die. Exceptionally crazy? Yes, I think so now, but at the time, I was convinced.I also thought she actually came to the hospital, and I could hear her talking out in the hallway. And of course, she wasn’t there.

I called all my friends and family, begging them to come and get me out of the hospital. Several times. Thinking back on it now, I think they never should have allowed me to have my cellphone with me in ICU, and If I ever wind up there again, they should take my phone until I am over the worst of things.

On the first day that I was out of ICU, I was determined to leave the hospital. I was wearing only a hospital gown and a colostomy bag, had no clothes, no truck, no money, but I was determined to leave. I tried to get up out of the bed, and only succeeded in messing up my colostomy bag and had to have the bed changed and be cleaned up by the nurses on duty.

On the second day, I pulled the NG tube out of my nose. When I did that, I immediately started throwing up all over my bed and myself. Again, the nurses and patient care techs had to change my bed and clean my up. After that ordeal, I got very hot, so I took off my hospital gown and laid in bed naked. IN the morning, a nurse came in and told me that I was being monitored via a camera in the ceiling. She said that they had observed me laying there with no clothes on all night, and she wanted me to know.

After that, I tried my best to behave and cooperate with the doctors and nurses, so I could get better enough to come home.

 

When we first got to Flagstaff Medical Center, I was told that I would not need surgery. The doctors said they could treat the infection, then do a colonoscopy prep to clean me out, and get rid of the obstruction in my bowel. Things didn’t happen quite that way.

The doctors waited 13 days for the infection to clear up. Most of what I am going to write today I learned from reading my daughters’ Facebook timelines, where they were keeping friends and family updated on my condition.

As I wrote yesterday, I was pretty much zinged out on morphine, and had an NG tube and a PICC line in my arm for IV feeding of TNP. There was also a PICC line in my groin, I’m not sure what that one was for.

On May 23, I started throwing up fecal matter. There is no pleasant way to say that. It was the most horrible thing, ever, even after all I have been through. Once I started that, the doctor decided to do a sigmoidoscopy. The doctor who did the sigmoidoscopy said that she couldn’t get the instrument past the small bowel. There was an obstruction there that prevented going any further. That is when they decided surgery was necessary. (again, I could be wrong about some of this because I do not even remember the sigmoid procedure. I was out cold!)

I was scheduled to go into the OR around 1:00 p.m. MST, but didn’t make it there until around 4:00 p.m. (I think). I am not sure what that surgery entailed. The updates on Facebook called it a “cleanout procedure”. Fabgrandpa told me they opened me up, cleaned out fecal matter and infection, cleaned my insides up, and covered it with a surgical sponge. The surgical incision was left open, and I was taken back to surgery at least two more times to change the sponge and cleanout infectious tissue.  At some point during all this surgery, the small bowel obstruction was removed and I received a colostomy.

Tomorrow, the ICU.

We arrived at Flagstaff Medical Center around noon (I think. Things start to get fuzzy for me around this time.) I was checked in to the emergency room, and asked a ton of questions. The bottom line of the problem for me was that I could not have a bowel movement and I was in a lot of pain. I couldn’t sit still, couldn’t button my pants, and was just plain miserable.

The admissions staff in the emergency room drew blood and took all my vital signs, then took me back to a cubicle. I was examined by a RN, and then by a gastroenterologist. They gave me a Gastrografin enema and sent me for  X-rays and a CT Scan. Some time around 3:00 p.m. they decided to admit me to the hospital.

At this point, I am not really sure of the order of things, or of what really happened because I was on morphine for pain and was out of it a lot of the time. I think the gastroenterologist and the surgeon decided to wait because I had a severe infection in my intestinal tract. I was put on continuous IV cipro and flagyl to fight the infection, and we waited. I was given a Gastrografin enema every day. At some point, I had an NG tube inserted in my nose. While getting that tube put in was an awful experience, it did relieve some of the pressure in my abdomen.  I do remember one time that they used a syringe to fill my stomach with Gastrografin through the NG tube, and filled the other end with an enema, so that they could do another CT Scan.

After the NG tube was inserted, I was not able to talk, so I requested a pencil and paper so I would be able to communicate. I thought I was making perfect sense, but Fabgrandpa and the nurses had a hard time deciphering what I was trying to say.  We waited 13 days for the infection to improve and for the obstruction to clear itself. On May 23, they decided to operate.

I have been asked by many people “What Happened”, so I am going to be writing about that in the next couple of days. Just as information, there is a lot of “TMI” in these posts but it is necessary to the story.

I think I had been sick since about October, but when I went to the doctor in December, she put me on a round of cipro and flagyl. I took them, but never really felt quite right since then. I had several bouts of constipation, but was still able to “go”.  I was taking a dose of Miralax every morning with breakfast, and I was at least feeling better, if not good.

Then, in April, we started on our trip from Georgia to Arizona. It is difficult to stay on a regular schedule for meals, and even more difficult to stay on a regular schedule for taking medications when you travel, especially something like Miralax that needs to be mixed with water. I really tried to stay on schedule with it, but got off that schedule.

After we arrived at the Grand Canyon on April 19, I had nothing to do until time to go to work on May 8. I got somewhat back on my daily schedule, but then, around May 1, I got where I couldn’t “go”. I couldn’t have a bowel movement. This continued for over a week.

I went to work on the first day of work, but was in so much pain I could barely sit still. My abdomen was distended and tight, and felt sore. I couldn’t button my pants. And no matter what I tried, I couldn’t do the deed.

On May 9, I told Fabgrandpa that he needed to take me to the doctor in Kanab, Utah, 85 miles away. We went down to the medical clinic there. The doctor there told me to take magnesium citrate, a powerful laxative, for two days in a row, and said that should take care of the problem. I went home and took the first bottle of that stuff, and four hours later I was throwing up but there was no bowel movement at all.

I couldn’t even think about getting the second bottle of magnesium citrate to my lips to drink it the next day, so I called the doctor in Kanab to ask what else we could do. By this time, I was in a lot of pain, and my abdomen was even more distended. He left orders for me to come in as an outpatient at the emergency room for an enema.

We went back down to Kanab, and I submitted myself for the enema. The nurse filled me up with that enema bag five times, and nothing passed. I did throw up again, but no bowel movement. I was in so much pain. I begged the nurse there at Kane County Medical Center to do something else, but she told me I had come in as an Outpatient, and there was nothing more she could do other than the orders the doctor had left for me.

I told her I was through being an outpatient, and was now checking in as an emergency room patient, but they refused to see me! The told me there was nothing they could do for me, and sent me home! I was so upset that they could do that. Anyway, Fabgrandpa took me the 85 miles home, where I tossed and turned and didn’t sleep much. Somewhere around daylight, I woke him up and told him he was going to have to take me to the emergency room in Flagstaff, 200 miles away.

Fabgrandpa wasn’t keen on the idea of driving to Flagstaff, but I told him if we didn’t go I would die. I firmly believe that if we had not gone to Flagstaff Medical Center I would have died. It had now been about a week and a half since I had been able to have a bowel movement.

Tomorrow: The Flagstaff Medical Center Emergency Room