I Have a Life Again! Updated for those who are interested
Posted: Wed Aug 02, 2017 4:59 pm
Sorry this is so long, but I feel the information might help other members.
As anyone who has followed my journey knows, I had most of my rectum removed, scored severe on the LARS syndrome test, and have been basically been a hermit trapped in my house since my reversal a year and a half ago. I have good control (thank you Kegal exercises during the time I had temp ileostomy!) but had wicked unpredictability. I tried a limited diet, food and poop journals, medications, bowel training, etc. but still would have days when I went 4-5 times and others when I went 10-12 times, no matter what I ate or what pills I took. I was pretty miserable.
My colorectal surgeon had no suggestions except Metamucil, which helped a bit but not nearly enough. My oncologist said to give it more time. A month ago I went to see my family doctor for my regular checkup. I've been seeing him for about 20 years and I trust him. He is the first doctor to listen to me describe the LARS issues and tell me that is no way to live. I had been taking a half of a Percocet at bedtime for back and knee issues and Ativan 1 mg. twice a day. He increased the Percocet to 1/2 to 1 in the morning for pain and to slow things down, upped the Ativan to 2 mg. twice a day also to slow things down, and told me to take 1/2 an Immodium in the morning. He said I could increase the Percocet and Immodium as needed. We also talked about daily enemas and a permanent colostomy, but I told him about all the issues I had with the ileostomy tearing my thin skin and we decided that was a last resort option. He also said that I'm a perfect candidate for medical marijuana once it is set up here in PA because of my back and osteoarthritis issues and he will prescribe it as soon as it's available.
So I started doing my fiber in the morning along with Percocet, Ativan, and a half Immodium. It did work to slow things down and I didn't have to go as often, but I was still pretty tied to the bathroom and had to be very careful of what I ate. Then in the evening, I would do fiber again, Percocet, and Ativan. But I still had that freaking crampy feeling like I had to go most of the time. And I still had sore butt from going so often. And as a bonus, my back and knee ached more from all the time spent on the potty.
One of my four daughters is starting graduate school in September to become a Physician Assistant and won't have much free time for a couple of years. She asked if we could take a family vacation before her life grew too crazy. Two of my daughters are married so there are eight of us who need to have schedules co-ordinated, flights organized, lodging booked, etc. We decided to spend two weeks in Jackson Hole, Wyoming so we could visit Yellowstone and Grand Teton National Parks. I was in a panic over the long flights, the long days spent in the car exploring areas with few bathrooms, and if my limitations would ruin the trip for everyone.
So with much trepidation, I decided to try the nuclear option--daily enemas.
You have to understand I used to be a very private person. I never pooped in a public restroom and the only people to see the back end of me were my husband and my gynecologist. That changed quickly once I got cancer. I had to give myself an enema before several of the procedures during treatment, so I knew I could do it. That didn't mean I wanted to, but I had the knowledge and ability.
I started two weeks before our trip. The first time I tried, I just emptied out a couple of Fleet enema bottles I already had and filled them with tap water. I laid on the bathroom floor and did the best I could. I couldn't get all the water out of them, but I did well enough that I had six straight hours without needing to go or even feeling that crampy need to go ache. It was great! Such a feeling of freedom.
I decided to go with disposable enema bags since I didn't want the worry or hassle of making sure everything was properly cleaned and sanitized. I also decided to move operations to my bed since I'm too old and creaky to get up off a hard tile floor. I put two disposable bed pads down on the bed, a couple of napkins just in case they are needed, I fill the bag with warm tap water until it's a little more than halfway full, and I hang it from an S hook attached to the headboard. I bought the surgical lubricant they use for rectal and gyn exams since I knew it wasn't sticky and didn't irritate me. I apply the lube to the end of the tube, lie on my side, use a hand mirror to make sure I'm inserting in the right place
and I'm good to go. It takes me about five minutes to set up. Once I release the clamp to allow the water to flow, I keep one hand on the tube where it's inserted so it doesn't slip out and one hand higher up on the tube so I can bend it to slow or stop the flow if I feel crampy. Within five minutes, the bag is empty. I clamp it off so there isn't any leakage and then pull the tube gently out and cap it. I lay there for a minute or two, then get up and throw away the bag and put everything else away. I try to hold it in as long as I can as I walk around washing my hands and tidying. Then I spend about 15 minutes on the toilet emptying out. When it feels like I'm finished, I get up and walk some more. Sometimes that's all there is and sometimes I have to go back for a quick visit or two to empty the last bit. For about 15 to 30 minutes after that, I feel a little crampy as though more needs to come out, but nothing does. The whole process takes less than an hour.
I started a month ago. A week and a half ago, we flew to Wyoming. I had no issues on the plane whatsoever. We've been here 10 days and I have spent 12 hour days in the car exploring the area without once having to stop to poop. That would have been impossible a month ago. I've eaten so much food that I haven't had since my diagnosis-ribs, ice cream, spaghetti, hamburgers, french fries, strawberries, chocolate, etc. and everything stayed in nicely until my enema the next day. I've had some gas pains in the evenings a couple times which I feared were from the enema, but my daughters told me they were having the same issue---too much takeout, high altitude, disruption of regular eating habits, etc.
This vacation would have been vastly different if I hadn't started doing enemas. I would have been sitting at the resort instead of with my family as we rode a raft down Snake River, hiked for miles to see the hot springs and geysers, stood ten feet away from a momma moose and her two babies, and watched a herd of bison wander 15 feet away from our van. The only thing I've passed on was horseback riding through some trails and that was because of my back issues, not my poop issues. I ask for an hour of privacy in the morning while I drink my coffee, do my enema, and then shower. My family grabs breakfast, takes their own showers, and we are all ready to hit the road at the same time.
I never in a million years would have thought I would performing such an intimate task on myself and telling people about it, but then again, I never thought I would be emptying surgical drains full of bodily fluids or dealing with an open incision or handling a temp ileostomy or having numerous doctors stick their gloved fingers up the most private part of my body. Life changes and you have to change with it if you want to give yourself the best quality of life possible.
I know this isn't the answer for everyone, but for me, it's been a complete game-changer. Not only has it given me freedom from poop for 23 hours each day and ended that annoying constant have-to-go feeling I always had, but I feel stronger, more in control, and have gone from depressed desperation to looking forward to all I can do now that my life doesn't revolve around being near a bathroom. I don't have a problem with it psychologically. I just look at it as another daily task that needs to be taken care of like showering, brushing your teeth, or putting on your makeup. When I get home, I'll probably experiment more to see if evenings are better than mornings or if I can go longer than 24 hours comfortably, but for now, this is working perfectly for me.
I hope this post helps someone else and if you have any questions you'd rather not share on the board, feel free to pm me. I have two more days in this glorious place with my funny as hell family and then I fly home on Saturday. After that, I have weddings and showers that I had planned to RSVP negatively that will now be marked with a "Hell yes I'll be there!" I also bought tickets to a concert in September and I'm looking into writers' conferences that I can work into my schedule. I plan to make up for lost time.
Love to all of you from beautiful Yellowstone Park!
Judy
As anyone who has followed my journey knows, I had most of my rectum removed, scored severe on the LARS syndrome test, and have been basically been a hermit trapped in my house since my reversal a year and a half ago. I have good control (thank you Kegal exercises during the time I had temp ileostomy!) but had wicked unpredictability. I tried a limited diet, food and poop journals, medications, bowel training, etc. but still would have days when I went 4-5 times and others when I went 10-12 times, no matter what I ate or what pills I took. I was pretty miserable.
My colorectal surgeon had no suggestions except Metamucil, which helped a bit but not nearly enough. My oncologist said to give it more time. A month ago I went to see my family doctor for my regular checkup. I've been seeing him for about 20 years and I trust him. He is the first doctor to listen to me describe the LARS issues and tell me that is no way to live. I had been taking a half of a Percocet at bedtime for back and knee issues and Ativan 1 mg. twice a day. He increased the Percocet to 1/2 to 1 in the morning for pain and to slow things down, upped the Ativan to 2 mg. twice a day also to slow things down, and told me to take 1/2 an Immodium in the morning. He said I could increase the Percocet and Immodium as needed. We also talked about daily enemas and a permanent colostomy, but I told him about all the issues I had with the ileostomy tearing my thin skin and we decided that was a last resort option. He also said that I'm a perfect candidate for medical marijuana once it is set up here in PA because of my back and osteoarthritis issues and he will prescribe it as soon as it's available.
So I started doing my fiber in the morning along with Percocet, Ativan, and a half Immodium. It did work to slow things down and I didn't have to go as often, but I was still pretty tied to the bathroom and had to be very careful of what I ate. Then in the evening, I would do fiber again, Percocet, and Ativan. But I still had that freaking crampy feeling like I had to go most of the time. And I still had sore butt from going so often. And as a bonus, my back and knee ached more from all the time spent on the potty.
One of my four daughters is starting graduate school in September to become a Physician Assistant and won't have much free time for a couple of years. She asked if we could take a family vacation before her life grew too crazy. Two of my daughters are married so there are eight of us who need to have schedules co-ordinated, flights organized, lodging booked, etc. We decided to spend two weeks in Jackson Hole, Wyoming so we could visit Yellowstone and Grand Teton National Parks. I was in a panic over the long flights, the long days spent in the car exploring areas with few bathrooms, and if my limitations would ruin the trip for everyone.
So with much trepidation, I decided to try the nuclear option--daily enemas.
You have to understand I used to be a very private person. I never pooped in a public restroom and the only people to see the back end of me were my husband and my gynecologist. That changed quickly once I got cancer. I had to give myself an enema before several of the procedures during treatment, so I knew I could do it. That didn't mean I wanted to, but I had the knowledge and ability.
I started two weeks before our trip. The first time I tried, I just emptied out a couple of Fleet enema bottles I already had and filled them with tap water. I laid on the bathroom floor and did the best I could. I couldn't get all the water out of them, but I did well enough that I had six straight hours without needing to go or even feeling that crampy need to go ache. It was great! Such a feeling of freedom.
I decided to go with disposable enema bags since I didn't want the worry or hassle of making sure everything was properly cleaned and sanitized. I also decided to move operations to my bed since I'm too old and creaky to get up off a hard tile floor. I put two disposable bed pads down on the bed, a couple of napkins just in case they are needed, I fill the bag with warm tap water until it's a little more than halfway full, and I hang it from an S hook attached to the headboard. I bought the surgical lubricant they use for rectal and gyn exams since I knew it wasn't sticky and didn't irritate me. I apply the lube to the end of the tube, lie on my side, use a hand mirror to make sure I'm inserting in the right place
and I'm good to go. It takes me about five minutes to set up. Once I release the clamp to allow the water to flow, I keep one hand on the tube where it's inserted so it doesn't slip out and one hand higher up on the tube so I can bend it to slow or stop the flow if I feel crampy. Within five minutes, the bag is empty. I clamp it off so there isn't any leakage and then pull the tube gently out and cap it. I lay there for a minute or two, then get up and throw away the bag and put everything else away. I try to hold it in as long as I can as I walk around washing my hands and tidying. Then I spend about 15 minutes on the toilet emptying out. When it feels like I'm finished, I get up and walk some more. Sometimes that's all there is and sometimes I have to go back for a quick visit or two to empty the last bit. For about 15 to 30 minutes after that, I feel a little crampy as though more needs to come out, but nothing does. The whole process takes less than an hour. I started a month ago. A week and a half ago, we flew to Wyoming. I had no issues on the plane whatsoever. We've been here 10 days and I have spent 12 hour days in the car exploring the area without once having to stop to poop. That would have been impossible a month ago. I've eaten so much food that I haven't had since my diagnosis-ribs, ice cream, spaghetti, hamburgers, french fries, strawberries, chocolate, etc. and everything stayed in nicely until my enema the next day. I've had some gas pains in the evenings a couple times which I feared were from the enema, but my daughters told me they were having the same issue---too much takeout, high altitude, disruption of regular eating habits, etc.
This vacation would have been vastly different if I hadn't started doing enemas. I would have been sitting at the resort instead of with my family as we rode a raft down Snake River, hiked for miles to see the hot springs and geysers, stood ten feet away from a momma moose and her two babies, and watched a herd of bison wander 15 feet away from our van. The only thing I've passed on was horseback riding through some trails and that was because of my back issues, not my poop issues. I ask for an hour of privacy in the morning while I drink my coffee, do my enema, and then shower. My family grabs breakfast, takes their own showers, and we are all ready to hit the road at the same time.
I never in a million years would have thought I would performing such an intimate task on myself and telling people about it, but then again, I never thought I would be emptying surgical drains full of bodily fluids or dealing with an open incision or handling a temp ileostomy or having numerous doctors stick their gloved fingers up the most private part of my body. Life changes and you have to change with it if you want to give yourself the best quality of life possible.
I know this isn't the answer for everyone, but for me, it's been a complete game-changer. Not only has it given me freedom from poop for 23 hours each day and ended that annoying constant have-to-go feeling I always had, but I feel stronger, more in control, and have gone from depressed desperation to looking forward to all I can do now that my life doesn't revolve around being near a bathroom. I don't have a problem with it psychologically. I just look at it as another daily task that needs to be taken care of like showering, brushing your teeth, or putting on your makeup. When I get home, I'll probably experiment more to see if evenings are better than mornings or if I can go longer than 24 hours comfortably, but for now, this is working perfectly for me.
I hope this post helps someone else and if you have any questions you'd rather not share on the board, feel free to pm me. I have two more days in this glorious place with my funny as hell family and then I fly home on Saturday. After that, I have weddings and showers that I had planned to RSVP negatively that will now be marked with a "Hell yes I'll be there!" I also bought tickets to a concert in September and I'm looking into writers' conferences that I can work into my schedule. I plan to make up for lost time.
Love to all of you from beautiful Yellowstone Park!
Judy
). I also find that laying a heating pad on my stomach eases gas pains. I didn't have any problems with gas before the trip, so I really think it's the steady diet of restaurant food that's causing the few pains I'm having. I'll let you know how things develop once I'm home and eating more regularly. I know you've talked about your problems with gas pains from the enemas before. I hope you can find a solution so the enemas work for you on a regular basis. 
but it's still a lot. Even with the pain the enemas are the best option for me also. I feel like I have my life back. I was asking about the percocet etc because I take one and a half percocets a day for spine pain from radiation. I wonder sometimes if that slows things down to cause gas. I have to keep trying things. I'm determined to get this to work.
