I've grown accustomed to my pads

The title could be sung to the tune of I've Grown Accustomed to Your Face, but then...

My surgeries have left me pretty much devoid of the sensations a normal person experiences when having a BM. I do not get the full feeling deep in the abdomen. I may get a bloated feeling or some cramps but they can also just go away. I do not usually get much of a sense that I have to go, but when I get the sensation I get I'd better get to a bathroom because I'm going to have some kind of action pretty soon.

When my system gets really upset I can have explosive results that just happen unexpectedly. I can be standing two feet from the commode and can't make it in time.

I have learned to wear pads. It has been a hard transition. At first I kept thinking about how feminine it was. I was embarrassed, even though only my wife knew. However, time and experience has tempered that and I now wear a pad when I leave the house. Even when I work around the house I'll wear a pad if I'm having one of those days where I have episodes. I've been out by the shop and couldn't make the commode in time.

I have a greater sense of when things are OK and when they are not. I've learned to not take a chance.

It does restrict my activities. I eat a meal and I'll wait a half hour or so to see how my system is going to react. Even then if I am going to leave the house for a period of time I put on a pad and carry a spar.

I use Imodium to slow down the bowel activity and it seems to generally work, but even then I cannot trust it completely. However, when the bowel activity is slowed if I have an accident it usually is not very serious and requires a change of pad and a little cleaning. I keep a package of flushable wipes with me, but when you are "out and about" that is awkward. So, I try to really be aware of my system if I am going "O & A."

My condition requires an adjustment to my life style, but seeing I really am a home body and most comfortable around the house it is not big deal. If I have to travel I get a little preoccupied with what might happen, but some thought and my knew found confidence in wearing pads can help a lot.

In the meantime I cannot say enough about my wife. She has never made fun of me. I have some diapers at home when I have this explosive experience so I can sleep in bed at night. Recently my wife came down with a stomach bug and was experiencing that explosive problem and without any concern she got up and put on a pair of diapers. She just takes care of things without much personal stress. It taught me to take care of the problem, don't just feel embarrassed. When I've really gotten sick which seems to happen when I prep for a colonoscopy she cleans up after me without complaint. She is willing to do just about any task to help my situation. She is a blessing.

Support, love, and respect help enormously in dealing with the kind of issues I face.

Don't read unless you have bowel issues

I have undergone two bowel resections for colon cancer. I literally don't have a rectum anymore. I don't have a colostomy and if possible I do not want one. However I do encounter what are called cluster movements. Because my rectum is all but gone I do not have the same sensations a person with a rectum has. The rectum is a collection pouch for fecal matter. As it fills we get that "full feeling" sensation that signals we may have a bowel movement. When you have a bowel movement you feel relief, the rectum is emptied and the process starts all over and takes sometimes a predictable amount of time so we are what you refer to as "regular."

I am not regular. I may have a BM between 15 and 25 times a day. Once and a while I hit a stretch where I am almost normal, but usually no more than a day or two. Other times I encounter an episode where for several hours to a day I may have to go 3 to 4 times an hour.

I have tried to monitor my food intake. Sometimes when I have certain foods, often quite greasy or fatty I may have an episode. Other times I may have too much chocolate or snack foods that are made rich in fat and that'll trigger a series of movements. There are other times that the consistency of my stool is like axle grease and cleaning is an issue. Other times if I really get out of whack it is thin and runny and then I have to wear diapers.

I were a pad much of the time. For sure when I go out and about. The reason is because I cannot feel a movement until it is almost upon me, or I can even encounter periods of bowel incontinence. I have no idea that something happened, an "accident," until I can feel the sensation of a stained pad. This can happen anyplace at anytime.

When I drive to work I have about an hour on the road. I usually begin my day with breakfast and then stick around home for a half and hour to an hour. That is so I can gauge the reaction of my system. Many times I encounter an accident while on the road and have to clean myself at work. Therefore I carry a back pack with a pocket stuffed with necessaries. I have extra pads, a packet of flushable personal wipes, and another bag with a change of clothes just in case I really have a problem. That has not happened for a long time.

I have been in meetings where I simply cannot escape in time sitting there knowing that when the meeting is over I have to find a rest room and take care of myself. There are times that I have not had my supply bag with me and end up wetting paper towels and using toilet paper stuffed in my drawers to handle any emergencies until I can get to a replacement pad.

It is frustrating. There have been times around the house I can't get some projects done because I'm going to the bathroom every 15 minutes or so. So life sounds difficult and in some ways it is.

However, I feel great. I have a good attitude and I think that a lot of my difficulties are my own doing. There are times I eat too much, especially when my wife makes a particularly good favorite meal. It is hard to stop. Or I might get a day where I say to hell with it and gorge myself on some sweet delectable that I crave. I pay for it.

I have started taking one Imodium after every meal and that does seem to help. It slows down the movement of the fecal matter so I don't go so often and the consistency of the stool is firm enough to make cleaning less of an effort. When things are going well they are great. When things are going badly I concentrate on the moment and just take care of what I have to. I weather the storm because I do not have a choice and I basically do feel well. As time goes along I am getting a better understanding of what effects what and am trying to adjust my eating habits and food to improve my results.

It isn't bad, it's just life.

Cluster Movement

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.

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.

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

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.

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.