Recently I received another email from a reader of my ABC's of Home Recovery. She is less than two weeks out of surgery and was having a bad weekend so I was emailing her back and forth trying to ease her anxiety. During out emails she mentioned one of her Dr.s used the term "Cluster Movements." I Googled it and sure enough the description was almost exactly what I have been experiencing for some time. Because my colon is now so short and the rectum virtually gone stools don't have as much time to have the water removed by the colon. The result is a thick, viscous stool that can be formed but difficult to clean. In addition because the accumulation chamber of the rectum is much smaller stool want to pass right through so you have a frequency problem.
The cure, well there is none. However, you can retrain your system to a more normal regularity. It takes a combination of deciding what meal you wish to have a BM after then setting the meal up to stimulate the peristaltic and hopefully have a BM soon after eating. By repeating the routine you should eventually retrain your system.
I have been doing some of that but now have embarked on an actual program. I am taking two anti-diarrheals before going to bed. This slows the system down and while I may have two or three BM's before going to sleep seem to be sleeping more soundly and not waking up as often.
I take one anti-diarrheal with breakfast to slow down the morning, however I have been having several BM's before noon. In the afternoon nothing and I eat dinner and take nothing to slow the action. I am now going to the bathroom several times during the evening, but I consider that the best time of day for me as I am most often home and can handle the situation with comfort.
What I have noticed is the consistency of the stool is getting firmer and less messy. In addition I have not had an episode in a week or two. However, I am also cutting down on snacks and large meals. My weight has dropped about three pounds and seems to be staying there. I am hoping for more weight loss.
I have also upped my fiber supplements to five a day, two in the morning and three at night. However I try not to drink too much liquid with the fiber because the idea is to slow the movement of the material through my system, not speed it up. The other thing I have done is begun to take a probiotic daily to improve the bacterial action in my gut. That also seems to be making a difference.
I am going quite slowly because there are so many variables that one can't point to anyone thing and say that's the fix. However I have shown good improvement in control and consistency in the past few weeks and hope to improve even more over time.
Friday, June 21, 2013
Sunday, June 9, 2013
A Life on the Toilet: Ill Health and Bowel Cancer by Kat Ward
I recently finished a short book by Kat Ward chronicling her bout with bowel cancer. It sounds like the same type of cancer I had only the tumor had gotten way bigger than mine. This lady had a lot of problems that compounded the cancer or in someways disguised it. She suffers from panic attacks and has a phobia about vomiting that forces her to make a decision to discontinue chemo treatment that I did not encounter. Kat has a long history of bowel troubles including chronic diarrhea and bleeding, turned out they also diagnosed Diverticulitis which masked the cancer.
At first the book is an ongoing litany of trouble with her bowels and after a while you start to dislike this lady instead of commiserating with her. Her panic attacks and bowel issues tend to rule her decisions when logic suggests you take a different course of action. Kat antagonizes doctors, nurses and other health care people. She refuses treatments, she disdains appointments, she is rude and selfish. I have a hard time with that behavior because it is so far removed from mine. She seems ruled by emotional outbursts and unable to think through what is being suggested to her because her panic or phobia so rule her decision making.
As the book goes on she finds that some of the procedure and treatment she receives are not nearly as bad as her mind conjures. This realization only seems to temporarily improve her confidence which can be dashed by her own imaginings. Nonetheless Kat gets through the treatment and surgery. She only takes one week of chemo, but does have a full month of radiation. She only has one week of chemo because of nausea and her fear of vomiting. Frankly, it was the radiation that caused me severe side effects that she seems to avoid. However, her chronic diarrhea may mask the side effects.
In the end she has a good prognosis although she seems to have some misgivings. She does make amends with many of the people she was rude to and seems to come away with a greater realization of friends and what they mean to her. I will say, she has an amazing number of friends who seem to put up with a lot of abuse and demands that I'm not sure I could tolerate. I trust she has attributes that outweigh the emotional outbursts.
At different times she becomes suicidal and I think if it had not been for her sons and friends she may have carried it out. Kat does realize what a selfish act that would be and what pain she would cause, particularly her sons and obviously does not commit that act.
What did I learn? Well I learned that people with different types of behavior patterns can have a very hard time. I also learned about the health care system in Great Britain and it appears to be nowhere as cumbersome and bureaucratic as critics of one payer systems in the U.S. make it out to be. She gets into doctors and clinics very readily, and has home health care beyond what I ever had, and for longer periods. However, the missed diagnosis of diverticulitis is bad, it caused her long periods of suffering that may not have been necessary. Misdiagnosis however can happen regardless of the health care system.
This story is not particularly inspiring, but it is educational and for that reason I must say I liked it. I don't like Kat very much, but it is a remarkable journey and I hope her outcome is positive.
At first the book is an ongoing litany of trouble with her bowels and after a while you start to dislike this lady instead of commiserating with her. Her panic attacks and bowel issues tend to rule her decisions when logic suggests you take a different course of action. Kat antagonizes doctors, nurses and other health care people. She refuses treatments, she disdains appointments, she is rude and selfish. I have a hard time with that behavior because it is so far removed from mine. She seems ruled by emotional outbursts and unable to think through what is being suggested to her because her panic or phobia so rule her decision making.
As the book goes on she finds that some of the procedure and treatment she receives are not nearly as bad as her mind conjures. This realization only seems to temporarily improve her confidence which can be dashed by her own imaginings. Nonetheless Kat gets through the treatment and surgery. She only takes one week of chemo, but does have a full month of radiation. She only has one week of chemo because of nausea and her fear of vomiting. Frankly, it was the radiation that caused me severe side effects that she seems to avoid. However, her chronic diarrhea may mask the side effects.
In the end she has a good prognosis although she seems to have some misgivings. She does make amends with many of the people she was rude to and seems to come away with a greater realization of friends and what they mean to her. I will say, she has an amazing number of friends who seem to put up with a lot of abuse and demands that I'm not sure I could tolerate. I trust she has attributes that outweigh the emotional outbursts.
At different times she becomes suicidal and I think if it had not been for her sons and friends she may have carried it out. Kat does realize what a selfish act that would be and what pain she would cause, particularly her sons and obviously does not commit that act.
What did I learn? Well I learned that people with different types of behavior patterns can have a very hard time. I also learned about the health care system in Great Britain and it appears to be nowhere as cumbersome and bureaucratic as critics of one payer systems in the U.S. make it out to be. She gets into doctors and clinics very readily, and has home health care beyond what I ever had, and for longer periods. However, the missed diagnosis of diverticulitis is bad, it caused her long periods of suffering that may not have been necessary. Misdiagnosis however can happen regardless of the health care system.
This story is not particularly inspiring, but it is educational and for that reason I must say I liked it. I don't like Kat very much, but it is a remarkable journey and I hope her outcome is positive.
Sunday, March 17, 2013
Ah, vacation
I am on vacation this week of 3-17-2013. The first two days were beautiful days in Arkansas, 70's and a lot of work done outdoors. I am trying very hard to limit my snacking and to record calories in order to lose weight. It works, it has in the past and it is pretty much a tried and true method for me.
I have noticed some results that I thought might be there but wasn't sure. The less I eat, the longer space I get between eating something the more regular my bowels seem to become. The last two days I have not gone BM until the evening. I have not gone as frequently and I have had greater volume of output. I think there are two things at work here. First is I've cut down on the amount of snacking. Second the stress level of getting up and going to work is reduced and my days have pretty been my own to start. I've gotten a lot done and have been more physically active in the last couple of days than normal. All of that is good.
In addition I've stayed away from an excess of chocolate, fatty candy bars. That also seems to be a trigger. So right now, the early indications are good, I am relaxed, work at my own pace, don't have too much in the way of obligations and my system seems to be functioning quite nicely.
My wife always says, moderation. For a person who has most often lived a life of excess that is tough to follow, but the proof is hard to ignore.
Paragould, Arkansas 3-17-13
Tuesday, February 26, 2013
Update: 1.5 years.
It has been approximately a year and a half since I had my second bowel resection. This morning I had my forth Flex-Sigmoidoscopy. This is a modified colonoscopy to check the sigmoid region of the colon. This is where the cancer was located the last two times. It has been a procedure on two levels. Preparation and procedure.
The preparation is different than a colonoscopy. The preparation has consisted of me taking two enemas at home in the evening and then one at the hospital right before the procedure. The idea is to clean out the the lower part of the colon so the Dr. can see the area clearly. In a colonoscopy you drink a prep that is a powerful laxative and flushes the colon all the way to the small intestine so the Dr. can get a clear view of the entire colon. Both are effective procedures for what they are intended.
The procedure is nothing. The prep is a pain. The last time I had a flex-sig my system did not react well. I soiled myself in the recovery room, I soiled myself on the way home and had to hit the shower and take my clothes off. My system does not seem to tolerate invasive inspection and I have a heck of a mess. Plus for a day maybe two I can have accidents and it is humiliating.
This time I prepped a little differently. I took a whole bottle of laxative, I think the name is Magnesium Calcitrate. It is a fairly strong laxative but not of the flushing variety. I stopped eating any solids at noon the day before the procedure. I took the laxative in two doses one at 4 PM the other about 5:30 PM. It worked, I went quite a bit and was fairly comfortable except my lower abdomen felt bloated and crampy. I took the first enema about 8 PM. I ended up going until about 1 in the morning and wore adult paper diapers because I don't have control when I am prepping.
Had one funny incident. I had plumbed the hot water heater in our trailer that afternoon before the prep. I was going over to check on the repair so I did not end up with water on the floor. I went over there about the time I thought the trips to the john had slowed down. However upon trying to return I couldn't take ten steps without heading to the toilet. I was wearying sweat pants and briefs on the bottom. You learn to wear clothes you can pull down easily when you prep. Also, tuck your tee shirt into your sweats. That way you don't waste any time fumbling with a long tee trying to get you pants down. Well, anyway, I had a couple of accidents. Soon I was reduced to nakedness on the bottom and it was raining cats and dogs out, it was cool, in the 40's and I'm stuck in the trailer. Finally my situation eased to the point I thought I could make it back to the house. It is a short distance, some 30 feet, but with few clothes on, and heavy rain and cold air on you butt the trip back was rather stimulating.
I was finally able to go to sleep about 1 AM. I figured on getting up at 3 to take the second enema. I slept in until 4, Terry woke up and started the morning ritual so we could be off to the hospital. I was supposed to be there at 5:30 AM. I got up, did the enema with good results I felt no cramping of bloating so I think my prep from the day before was paying off. The drive into the hospital was uneventful.
After checking in I was taken directly to the procedure room. No stop in the prep room, the hospital was overflowing with patients and in fact the procedure prep room was half full of regular patients because they had no more rooms. So the nurses that participate in the procedure helped in the prep. Everything went well and I was feeling good. Now usually I have to take one more enema, but because everyone was out of procedure it was overlooked and I was not going to say anything. I've had some pretty disastrous episodes in the prep room when I take that enema and I did not want to repeat. Especially since I was so far from the bathroom and so many people I had to walk/run/scamper past.
I do not take any drugs for this procedure. During a colonoscopy they give you amnesia drugs so you don't remember the discomfort.
The flex-sig is only going up a short distance and is not uncomfortable. Well, if you are a guy and had a prostrate check you know the feeling and it isn't even that bad. I was awake, the Dr. and I carried on a conversation. He did go up the colon some and ran into a dirty area. He asked if we did a prep and I said yes, I told him what I had done and asked if it wasn't enough. He said it was OK for our purposes.
The procedure concluded and I am fine. The surgeon did have an observing Doctor. Terry said she looked Indian, (SE Asia) and was quiet. I was in the same room as my doctor dictated his findings. He went on to explain to the visiting doctor my situation. I learned a few things. First the procedure shows no indication of recurrence and everything looks fine. There are some titanium stitches working their way out but no cause for concern.
The biggest information I learned from the conversation between the two Dr.s. follows. My surgeon explained that I had had an initial resection in 2007. The tumor recurred on the anastamosis which is the surgery point of the initial surgery. This type of recurrence is very infrequent. That I knew. What I did not know was that the Dr.s considered this case to be complicated and were maintaining an above average monitoring of the situation. On one hand that made me feel good. On another level it was scary. I also learned that which I suspected that the "rectum cavity" is for all intents and purposes gone. He showed me where the outer skin had been brought around into the anus to make up for the lack of internal material. The rectum cavity is a collection point. Most fecal material accumulates in the rectum and when it is full we feel that need to evacuate and so we have a BM. I don't have any storage facility so I end up going a lot. I also don't have the normal warning system. When I get that feeling I'd better get to a bathroom. That is good to know, I suspected that was the reason for my frequent BM's it also explains the low level of control I have. The sphincter muscles have been weakened by surgery and it becomes difficult to hold back the tide so to speak.
After all I learned today I am happy that recovery seems to be going well. I am happy that there are mechanical reasons for some of the issues I face. I am happy to be pain free and to feel somewhat normal. However, like many cancer victims I have times of apprehension and concern. Every time you feel a pain or a swelling you spend endless amounts of time figuring out the cause so you can convince yourself you do not have stage four cancer and only six months to live. It is a common mental state we survivors end up putting up with. I am happier than I have been in years, I feel better than I have in years. My wife notices a big change in my willingness to get projects going and to make repairs around the house. I am deeply in love with my wife. She has really been a strong support through all of this and has not shrunk back once but done things I know she has a great distaste for just to help me. She is one fine partner.
The preparation is different than a colonoscopy. The preparation has consisted of me taking two enemas at home in the evening and then one at the hospital right before the procedure. The idea is to clean out the the lower part of the colon so the Dr. can see the area clearly. In a colonoscopy you drink a prep that is a powerful laxative and flushes the colon all the way to the small intestine so the Dr. can get a clear view of the entire colon. Both are effective procedures for what they are intended.
The procedure is nothing. The prep is a pain. The last time I had a flex-sig my system did not react well. I soiled myself in the recovery room, I soiled myself on the way home and had to hit the shower and take my clothes off. My system does not seem to tolerate invasive inspection and I have a heck of a mess. Plus for a day maybe two I can have accidents and it is humiliating.
This time I prepped a little differently. I took a whole bottle of laxative, I think the name is Magnesium Calcitrate. It is a fairly strong laxative but not of the flushing variety. I stopped eating any solids at noon the day before the procedure. I took the laxative in two doses one at 4 PM the other about 5:30 PM. It worked, I went quite a bit and was fairly comfortable except my lower abdomen felt bloated and crampy. I took the first enema about 8 PM. I ended up going until about 1 in the morning and wore adult paper diapers because I don't have control when I am prepping.
Had one funny incident. I had plumbed the hot water heater in our trailer that afternoon before the prep. I was going over to check on the repair so I did not end up with water on the floor. I went over there about the time I thought the trips to the john had slowed down. However upon trying to return I couldn't take ten steps without heading to the toilet. I was wearying sweat pants and briefs on the bottom. You learn to wear clothes you can pull down easily when you prep. Also, tuck your tee shirt into your sweats. That way you don't waste any time fumbling with a long tee trying to get you pants down. Well, anyway, I had a couple of accidents. Soon I was reduced to nakedness on the bottom and it was raining cats and dogs out, it was cool, in the 40's and I'm stuck in the trailer. Finally my situation eased to the point I thought I could make it back to the house. It is a short distance, some 30 feet, but with few clothes on, and heavy rain and cold air on you butt the trip back was rather stimulating.
I was finally able to go to sleep about 1 AM. I figured on getting up at 3 to take the second enema. I slept in until 4, Terry woke up and started the morning ritual so we could be off to the hospital. I was supposed to be there at 5:30 AM. I got up, did the enema with good results I felt no cramping of bloating so I think my prep from the day before was paying off. The drive into the hospital was uneventful.
After checking in I was taken directly to the procedure room. No stop in the prep room, the hospital was overflowing with patients and in fact the procedure prep room was half full of regular patients because they had no more rooms. So the nurses that participate in the procedure helped in the prep. Everything went well and I was feeling good. Now usually I have to take one more enema, but because everyone was out of procedure it was overlooked and I was not going to say anything. I've had some pretty disastrous episodes in the prep room when I take that enema and I did not want to repeat. Especially since I was so far from the bathroom and so many people I had to walk/run/scamper past.
I do not take any drugs for this procedure. During a colonoscopy they give you amnesia drugs so you don't remember the discomfort.
The flex-sig is only going up a short distance and is not uncomfortable. Well, if you are a guy and had a prostrate check you know the feeling and it isn't even that bad. I was awake, the Dr. and I carried on a conversation. He did go up the colon some and ran into a dirty area. He asked if we did a prep and I said yes, I told him what I had done and asked if it wasn't enough. He said it was OK for our purposes.
The procedure concluded and I am fine. The surgeon did have an observing Doctor. Terry said she looked Indian, (SE Asia) and was quiet. I was in the same room as my doctor dictated his findings. He went on to explain to the visiting doctor my situation. I learned a few things. First the procedure shows no indication of recurrence and everything looks fine. There are some titanium stitches working their way out but no cause for concern.
The biggest information I learned from the conversation between the two Dr.s. follows. My surgeon explained that I had had an initial resection in 2007. The tumor recurred on the anastamosis which is the surgery point of the initial surgery. This type of recurrence is very infrequent. That I knew. What I did not know was that the Dr.s considered this case to be complicated and were maintaining an above average monitoring of the situation. On one hand that made me feel good. On another level it was scary. I also learned that which I suspected that the "rectum cavity" is for all intents and purposes gone. He showed me where the outer skin had been brought around into the anus to make up for the lack of internal material. The rectum cavity is a collection point. Most fecal material accumulates in the rectum and when it is full we feel that need to evacuate and so we have a BM. I don't have any storage facility so I end up going a lot. I also don't have the normal warning system. When I get that feeling I'd better get to a bathroom. That is good to know, I suspected that was the reason for my frequent BM's it also explains the low level of control I have. The sphincter muscles have been weakened by surgery and it becomes difficult to hold back the tide so to speak.
After all I learned today I am happy that recovery seems to be going well. I am happy that there are mechanical reasons for some of the issues I face. I am happy to be pain free and to feel somewhat normal. However, like many cancer victims I have times of apprehension and concern. Every time you feel a pain or a swelling you spend endless amounts of time figuring out the cause so you can convince yourself you do not have stage four cancer and only six months to live. It is a common mental state we survivors end up putting up with. I am happier than I have been in years, I feel better than I have in years. My wife notices a big change in my willingness to get projects going and to make repairs around the house. I am deeply in love with my wife. She has really been a strong support through all of this and has not shrunk back once but done things I know she has a great distaste for just to help me. She is one fine partner.
Sunday, February 10, 2013
Over a year out.
It has now been over a year since I had the reversal surgery to hook my small intestines back to my colon. It has not been the easiest year but I feel so good I can't complain too much. The year has not been easy because I have to go to the bathroom so much. I have had days where 25 BM's was the challenge of the day. On the other hand I have had days when I did not go at all, but that is very rare. Lately however, it seems to be settling down to around 10 maybe. Seems like after I have breakfast I have to go a few times, lunch will have the same occurrence and evening after supper and while lying in bed I more go a few more times. They are all pain free. The consistency varies and that seems to depend upon what I eat, or how much. Our diet consists of meats for most meals, some starch, some veggies, and some sweets. I think the sweets are the biggest contributor. I can eat some vending machine pastries and if I do too much I end up with frequent trips to the bathroom and glue is the consistency making cleaning yourself a difficult, messy task.
I do wear a pad during the day, if I am at work. I do not have accidents, but I have had and a pad just provides some insurance. If I am at home I am usually just a few steps away from a bathroom so it is not a big deal.
I feel great. My enthusiasm for living has returned. I have been engaged in remodeling our back hall and stairway and it is a great deal of satisfaction to watch it come together. I do not work very fast, and I don't work in the evening so work days kill the work days at home. The project is coming along fine. I am delighted with the tools I have acquired over the years and now making use of so much. Life is great.
If I still continue to go to the bathroom quite frequently I'll be fine. I'm learning to adjust and am thankful for the health I have.
I do wear a pad during the day, if I am at work. I do not have accidents, but I have had and a pad just provides some insurance. If I am at home I am usually just a few steps away from a bathroom so it is not a big deal.
I feel great. My enthusiasm for living has returned. I have been engaged in remodeling our back hall and stairway and it is a great deal of satisfaction to watch it come together. I do not work very fast, and I don't work in the evening so work days kill the work days at home. The project is coming along fine. I am delighted with the tools I have acquired over the years and now making use of so much. Life is great.
If I still continue to go to the bathroom quite frequently I'll be fine. I'm learning to adjust and am thankful for the health I have.
Sunday, November 18, 2012
Reversal Part 6
The reversal will require a hospital stay. I go through the usual pre-op blood work, discussion with a nurse and if I understand the procedure being performed. It goes well. I am anxious to have this procedure as the illeostomy is such an aggravation. The skin erosion hurts and looks like hell, the bag still gives us some problems with coming loose, and the routine is fatiguing.
We show up at 5:30 AM and I go into the pre-op room. The nurses are kind, the nurse anesthesiologist is nice and they remember I do not react well to morphine. Seems like even the surgical people are getting to know me. That is not good. Dr. Jones comes in and we discuss what is to take place and that is is a fairly simple procedure as the small intestine has not actually been cut in half but more butterflied and one section poked up through my side. I'm looking forward to having this over with.
I wake up in the recovery room. Once again everyone is nice. Terry comes in to sit with me and I actually begin to feel quite good. No bag, no bags to replace, a sense of freedom. To think that a few months ago I was praying for the bag to get relief from the inflammation and pain of radiation treatments. It seems so long ago.
In the hospital room I really begin to feel good. The Dr. comes to check on me and says he might even let me go home in the morning if I continue to do so well. This is a Friday. Terry goes home hoping that when I call on Saturday she will come and get me. However, things take a downward turn in the evening. I begin to experience diarrhea and it burns my bottom. I go about every fifteen minutes and do not feel well at all. The nurse comes in and explains that diarrhea is a normal reaction to the reversal surgery and helps as best she can but there isn't much she can do. I am up and down most of the night with very little sleep and a real pain in the ass. The acid in my stomach and small intestine is not moderated by the large intestine and burns the rectal area.
Long about morning is starts to lessen but I do not feel good. Being Saturday the Dr. on call is Jones partner. He takes one look at me and says, "You're not ready to go home today." Damn, but he is right. I hurt and don't feel well. By the time he comes in it is Sunday noon and Terry and I decide that she should stay home and we'll see about Sunday. I spend the entire day alone in the room, TV is a distraction but when you don't feel good just having someone there is better. However. Terry has had enough of sitting in hospital rooms and I do not want her to go through that discomfort.
Sunday, I feel a little better. The diarrhea has stopped and I am eating some semi-soft food. I get some ice cream from the nurse, it feels and tastes good. Terry comes and the day passes without too much discomfort.
Monday comes, I'm ready to go home and I am discharged. Hopefully I will not be back to the hospital for a long while. At home I do not have any BM;s because the system is empty. So I enjoy some days of peace and quiet and recover some strength. Pretty soon at night have I have these long, low sounding farts. They are great. They should be recorded. I guess the material is working its way through the large intestine, and pushing a long tube a gas out. It takes several days before I have a BM and it doesn't hurt to go. It doesn't hurt to go for the first time in about a year and a half. This is wonderful.
I fart, I go to the bathroom, frequently and I encounter no pain. I go back to work, but the stool is very soft and I encounter accidents which necessitates putting the pads back into my underwear. It is a small price to pay for not have a painful BM. However I do run into some problems with control and experience numerous occasion when I am with my friends at work where I have an accident as we are standing talking in the hall. No one knows it, but I can feel it and sometimes it is no small amount. I end up having a change of clothes at work and I feel that if I explain my problem to my co-workers that they will understand my strange coming and goings. They do. I recommend for anyone experiencing this type of problem let you coworkers know, you can describe in terms that are not gross. If they know they understand and have sympathy for your plight. Not that you want sympathy, but they come to take your actions as normal for you and you don't have to suffer the feeling that your coworkers must think you an odd duck.
The condition I experience is chronic diarrhea. The stool is not loose but I go frequently. I go some times as much as 25 times a day. It is a frustrating routine. The accidents I encounter are call incontinence. We associate that with the urinary tract, but it also happens with the digestive tract. I have a prescription drug called Limodal, and I also us Immodium, but I am reluctant to use too much. I'd rather go quite often than plug up.
So long term recovery begins. It is now December and I am back at work full time.
We show up at 5:30 AM and I go into the pre-op room. The nurses are kind, the nurse anesthesiologist is nice and they remember I do not react well to morphine. Seems like even the surgical people are getting to know me. That is not good. Dr. Jones comes in and we discuss what is to take place and that is is a fairly simple procedure as the small intestine has not actually been cut in half but more butterflied and one section poked up through my side. I'm looking forward to having this over with.
I wake up in the recovery room. Once again everyone is nice. Terry comes in to sit with me and I actually begin to feel quite good. No bag, no bags to replace, a sense of freedom. To think that a few months ago I was praying for the bag to get relief from the inflammation and pain of radiation treatments. It seems so long ago.
In the hospital room I really begin to feel good. The Dr. comes to check on me and says he might even let me go home in the morning if I continue to do so well. This is a Friday. Terry goes home hoping that when I call on Saturday she will come and get me. However, things take a downward turn in the evening. I begin to experience diarrhea and it burns my bottom. I go about every fifteen minutes and do not feel well at all. The nurse comes in and explains that diarrhea is a normal reaction to the reversal surgery and helps as best she can but there isn't much she can do. I am up and down most of the night with very little sleep and a real pain in the ass. The acid in my stomach and small intestine is not moderated by the large intestine and burns the rectal area.
Long about morning is starts to lessen but I do not feel good. Being Saturday the Dr. on call is Jones partner. He takes one look at me and says, "You're not ready to go home today." Damn, but he is right. I hurt and don't feel well. By the time he comes in it is Sunday noon and Terry and I decide that she should stay home and we'll see about Sunday. I spend the entire day alone in the room, TV is a distraction but when you don't feel good just having someone there is better. However. Terry has had enough of sitting in hospital rooms and I do not want her to go through that discomfort.
Sunday, I feel a little better. The diarrhea has stopped and I am eating some semi-soft food. I get some ice cream from the nurse, it feels and tastes good. Terry comes and the day passes without too much discomfort.
Monday comes, I'm ready to go home and I am discharged. Hopefully I will not be back to the hospital for a long while. At home I do not have any BM;s because the system is empty. So I enjoy some days of peace and quiet and recover some strength. Pretty soon at night have I have these long, low sounding farts. They are great. They should be recorded. I guess the material is working its way through the large intestine, and pushing a long tube a gas out. It takes several days before I have a BM and it doesn't hurt to go. It doesn't hurt to go for the first time in about a year and a half. This is wonderful.
I fart, I go to the bathroom, frequently and I encounter no pain. I go back to work, but the stool is very soft and I encounter accidents which necessitates putting the pads back into my underwear. It is a small price to pay for not have a painful BM. However I do run into some problems with control and experience numerous occasion when I am with my friends at work where I have an accident as we are standing talking in the hall. No one knows it, but I can feel it and sometimes it is no small amount. I end up having a change of clothes at work and I feel that if I explain my problem to my co-workers that they will understand my strange coming and goings. They do. I recommend for anyone experiencing this type of problem let you coworkers know, you can describe in terms that are not gross. If they know they understand and have sympathy for your plight. Not that you want sympathy, but they come to take your actions as normal for you and you don't have to suffer the feeling that your coworkers must think you an odd duck.
The condition I experience is chronic diarrhea. The stool is not loose but I go frequently. I go some times as much as 25 times a day. It is a frustrating routine. The accidents I encounter are call incontinence. We associate that with the urinary tract, but it also happens with the digestive tract. I have a prescription drug called Limodal, and I also us Immodium, but I am reluctant to use too much. I'd rather go quite often than plug up.
So long term recovery begins. It is now December and I am back at work full time.
Sunday, August 12, 2012
Part 5 Time to Reversal
Kristi arrives in the middle of the night and we talk for a while. One thing I can do with my two daughters is talk, we have some great conversations.
I sleep for a while then wake up in pain, and get another shot. It is not too bad, and I get some rest. The morning brings more meds and a Dr. visit, not the regular surgeon but his associate and that is who is on call during the weekend. It is Saturday. Kristi goes out and gets breakfast, I eat hospital fare as they don't want me to take in too much food until they can make a better determination as to the cause of the pain. The surgeon who did the work has already said he does not want to have to go in there now as it is too much of a mess and it might just really complicate matters.
Kristi comes back with some cards and a cribbage board. I have not played cribbage in years. I call Terry, she is rested and in better spirits and we talk about her not coming to the hospital. Kristi is with me and she will be staying until Thursday. So Terry stays home, gets some much needed peace and quiet and can nap when she wants to and I'm not underfoot.
Kris and I while away the day playing cribbage, reminiscing about the days when we played cribbage as a family and traveled to the U.P. of Michigan for vacations. It is easy talking with my daughter and I am much comforted. The pain seems to ease and the time grows between injections. In the afternoon they move me to a pill and everything is better. I still have bouts of pain as the meds wear off but they seem to becoming less frequent.
Sunday comes and the pain is eased quite a bit. Kris and I still seem to find a lot to talk about and we play cribbage, It is the most relaxing time I've had since the start of chemo/radiation. She is a knowledgeable nurse, is constantly critiquing the nursing care at NEA and is frankly impressed with the attention the patients received. Kristi is an RN on a cardio ward in Valparaiso, IN and their nights are so busy they often do not have time to just tend to their wards. NEA nurses seem to make time and have a nice way about them. They instill confidence that things are going OK.
Finally Monday morning, the Dr. comes in, a urologist and they decide they cannot pin point the source of the pain and seeing it has gotten much less intense I am released to go home.
Home, home, home. You just do not know how good that sounds when you are not feeling good. There is my wife, my dogs, my bed, my stuff and Nurse Kissy. That name comes from her nieces and my grandchildren. My other daughter Jenny's children.
So a pleasant week begins with the attentions of my own personal RN and my wife sharing the burden of care instead of carrying it alone. Kristi does not like the process of changing the bag, at one point she comments, "God, Dad, that is your intestine sticking out." She looks a little white around the gills. Terry and I smile, Terry has learned to tolerate the little devil.
However, all good things must come to an end and Kristi returns home and I miss her terribly. The load is now on Terry, but I am feeling better.
After a bit I go back to work for a while. I still do not like the rustle of the plastic bag under my clothing. I still have leakers, and Terry is much better at replacing the bag than I am. When I stand my tummy has too much of a bulge, lying down the skin lies flatter and is easier to work with.
I am still suffering skin erosion from the acidic output. It really burns some times and even may bleed a little. No one seems to have a solution. We go back to the Wound Clinic for follow up on the butt wound which is now completely healed. Still the nurses aren't able to make any great headway on appliance attachment. I now start looking forward to the "reversal" surgery in October as the skin irritation is sometimes quite annoying.
The one thing I am grateful for is I have no bowel issues with the illeostomy. The bag is one thing, but I empty it when I want, I do not have an urge to go to the bathroom, I have no pain in the anal area, no inflammation, and am at ease for the first time in four years. I am having should I keep it, should I reverse it talks with myself, but I lean more and more toward reversal as time goes by.
Days run together. I am working much of the time and still having bag problems. However Terry and I seem to have grown at ease with the issues and while neither of us like it we handle it. Terry has become quite good at handling bag replacement and has developed a method that is most reliable even though I still encounter leakage. It seems as if the stool erodes away the adhesive and will literally tunnel an escape route. When we remove the appliance we can follow the track of the leak.
Nothing we do seems to make much difference although once an a while we get one that stays for the full three days. Emptying the bag is my job. It opens and empties through an tunnel into the commode. I use a spray to flush it and rinse it out then reseal it with some clamps. It works until I forget to apply the clamp and then I am the creator of the leak. The initial odor upon releasing the content is quite over powering at times. It is job best done in private and by yourself as it is the nastiest part of the illeostomy. However neither Terry or I notice odors when the bag is sealed and works correctly. Like I said earlier, not having to go to the bathroom with the same frequency I did before surgery is a relief. At least I feel almost human when I'm out and about.
Other than the skin erosion and the cleaning of the bag four or five times a day time passes and I am quite comfortable. October approaches and the date for the illeostomy reversal is soon at hand.
End of part 5
I sleep for a while then wake up in pain, and get another shot. It is not too bad, and I get some rest. The morning brings more meds and a Dr. visit, not the regular surgeon but his associate and that is who is on call during the weekend. It is Saturday. Kristi goes out and gets breakfast, I eat hospital fare as they don't want me to take in too much food until they can make a better determination as to the cause of the pain. The surgeon who did the work has already said he does not want to have to go in there now as it is too much of a mess and it might just really complicate matters.
Kristi comes back with some cards and a cribbage board. I have not played cribbage in years. I call Terry, she is rested and in better spirits and we talk about her not coming to the hospital. Kristi is with me and she will be staying until Thursday. So Terry stays home, gets some much needed peace and quiet and can nap when she wants to and I'm not underfoot.
Kris and I while away the day playing cribbage, reminiscing about the days when we played cribbage as a family and traveled to the U.P. of Michigan for vacations. It is easy talking with my daughter and I am much comforted. The pain seems to ease and the time grows between injections. In the afternoon they move me to a pill and everything is better. I still have bouts of pain as the meds wear off but they seem to becoming less frequent.
Sunday comes and the pain is eased quite a bit. Kris and I still seem to find a lot to talk about and we play cribbage, It is the most relaxing time I've had since the start of chemo/radiation. She is a knowledgeable nurse, is constantly critiquing the nursing care at NEA and is frankly impressed with the attention the patients received. Kristi is an RN on a cardio ward in Valparaiso, IN and their nights are so busy they often do not have time to just tend to their wards. NEA nurses seem to make time and have a nice way about them. They instill confidence that things are going OK.
Finally Monday morning, the Dr. comes in, a urologist and they decide they cannot pin point the source of the pain and seeing it has gotten much less intense I am released to go home.
Home, home, home. You just do not know how good that sounds when you are not feeling good. There is my wife, my dogs, my bed, my stuff and Nurse Kissy. That name comes from her nieces and my grandchildren. My other daughter Jenny's children.
So a pleasant week begins with the attentions of my own personal RN and my wife sharing the burden of care instead of carrying it alone. Kristi does not like the process of changing the bag, at one point she comments, "God, Dad, that is your intestine sticking out." She looks a little white around the gills. Terry and I smile, Terry has learned to tolerate the little devil.
However, all good things must come to an end and Kristi returns home and I miss her terribly. The load is now on Terry, but I am feeling better.
After a bit I go back to work for a while. I still do not like the rustle of the plastic bag under my clothing. I still have leakers, and Terry is much better at replacing the bag than I am. When I stand my tummy has too much of a bulge, lying down the skin lies flatter and is easier to work with.
I am still suffering skin erosion from the acidic output. It really burns some times and even may bleed a little. No one seems to have a solution. We go back to the Wound Clinic for follow up on the butt wound which is now completely healed. Still the nurses aren't able to make any great headway on appliance attachment. I now start looking forward to the "reversal" surgery in October as the skin irritation is sometimes quite annoying.
The one thing I am grateful for is I have no bowel issues with the illeostomy. The bag is one thing, but I empty it when I want, I do not have an urge to go to the bathroom, I have no pain in the anal area, no inflammation, and am at ease for the first time in four years. I am having should I keep it, should I reverse it talks with myself, but I lean more and more toward reversal as time goes by.
Days run together. I am working much of the time and still having bag problems. However Terry and I seem to have grown at ease with the issues and while neither of us like it we handle it. Terry has become quite good at handling bag replacement and has developed a method that is most reliable even though I still encounter leakage. It seems as if the stool erodes away the adhesive and will literally tunnel an escape route. When we remove the appliance we can follow the track of the leak.
Nothing we do seems to make much difference although once an a while we get one that stays for the full three days. Emptying the bag is my job. It opens and empties through an tunnel into the commode. I use a spray to flush it and rinse it out then reseal it with some clamps. It works until I forget to apply the clamp and then I am the creator of the leak. The initial odor upon releasing the content is quite over powering at times. It is job best done in private and by yourself as it is the nastiest part of the illeostomy. However neither Terry or I notice odors when the bag is sealed and works correctly. Like I said earlier, not having to go to the bathroom with the same frequency I did before surgery is a relief. At least I feel almost human when I'm out and about.
Other than the skin erosion and the cleaning of the bag four or five times a day time passes and I am quite comfortable. October approaches and the date for the illeostomy reversal is soon at hand.
End of part 5
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