And so it goes

Well a 2nd recurrence. The prognosis for success is dropping. I do not know to what level, and I don't care to ask. The colo-rectal tumor has reappeared right next to the part of the colon the previous two surgeries occurred. It is small, 2.5 X 3.5 cm, about the size of half of my small finger nail. It has not spread, but seems to be contained.

It is in an area that does not lend itself well to further traditional surgery. There is so much scar tissue from the radiation and previous surgeries that the doctors feel a heightened risk of creating a fatal bleed if they go in there again.

Right now I am taking further chemo to reduce the size of the tumor and buy us time to search for alternative. There are several. There is a new technology called nano-knife that uses small electrodes implanted in the tumor to collapse and destroy the cells which are then reabsorbed by the body. However, it is new technology and doesn't have much history.

I am to meet with a cancer surgeon in Little Rock sometime soon, I hope. He also expressed concern over the surgery, but is willing to talk with me. What I want to really explore is what is possible and what the efficacy is? It is a small tumor. I've had two unsuccessful surgeries and would like it clean up so I can get on with a cancer free life for some years.

I originally would like to have beaten my dad's life span of 94 years. I've shortened that. Ten more years would be great so I could experience the wonders and enjoyment of retirement and living with my lovely wife Terry. I'd also get to see my grandchildren grow. That is very important to me.

In the meantime am trying to take one day at a time. I do find my mind wondering if I'll be here next year, or the next year. I worry about that, but I am adjusting and just trying to enjoy the work I have to do today, the sun and the breeze and the afternoon pleasantries with my lovely wife. So goes this life.

What I have learned about Fecal Incontinence.

Well, I have written about my side effects of a shortened colon, I go to the bathroom quite often. I don't count anymore, but I will say that the average is probably ten times a day. Some days I have peace for several days, then some days I have all kinds of problems.

Let me try and give those who struggle with frequent BM's some of the things I have learned:

1. I wear pads all of the time. I used to think I could anticipate a BM, or that if I could just find the right kind of diet I would go less frequently and have more control. I cannot seem to find the right diet, mainly because it has not become a top priority for me. I react fine to bacon and eggs, but sometimes ham upsets the apple cart. I have not been able to pin a diet on reduced BM's.
2. I experience some days of peace, no BM's and I don't worry about it. I take Immodium to try and slow the digestive tract down, but quite frankly when I first take Immodium my system seems to respond by trying to eliminate as much waste as possible, then a few hours later it settles down.
3. Lying down seems to enhance the movement of stool through the system. I cannot tell you how many times I want to just lay down in bed, relax, play a solitaire game or three and go to sleep. Not to be, I'll get up between two and four times every fifteen minutes or so to go pass a small stool. Plus because I experience fecal incontinence I sometimes won't feel the passage and find I have soiled my pad which necessitates clean up and a new pad. It can be very frustrating.
4. Tips:
1. I am switching to pads that are called overnight pads, they have a longer tail piece and offer more protection. They are the same price as other pads, $12.58 at Sam's Club for a box of 76.
2. I am moving away from adults wipes to flushable wipes. All of a sudden there seems to be a lot to choose from and flushable wipes mean I'm not trying to disguise a large wad of dirty wipe and make it to the waste basket before everyone spots me in a public restroom.
3. I carry a "fanny pack" with a package of flushable wipes and about four pads when my wife and I go out shopping or out for an evening.
4. I no longer am self-conscious about putting a roll of used pads in the trash in a public restroom. You can use the new pad's plastic wrap to roll the soiled pad in and it usually has some type of adhesive strip to prevent the pad from unrolling. 
5. Traveling is an adventure. I recently went to Chicago and the trip up and the day or two we spent were fine. However I made the mistake of over indulging in chocolate and on the way home it was frequent stops, clean ups and replace pads. It is uncomfortable and humiliating, although I have learned to disguise my problem very well.
6. Frankly, unless you have good control over you BM's I do not recommend travel unless necessary. The unexpected always happens and sometimes its good, but sometimes it is just down right trouble. 

That's it for now friends. I hope you find some help in what I've written. Take care and do the best you can.

Colonoscopy: More information

I completed my routine colonoscopy yesterday, the results were good.

I learned more about the procedure yesterday and thought I'd share that in case someone else was as confused by the description as I was.

The prep directions call for you to take some form of liquid or pills to stimulate your bowls to void the colon of everything. You have to fast for a day so you aren't adding to the task. I think that process is completely understood.

What confused me was the term "clear." The term clear is used in describing the output from your colon as you use the laxative cleansers. To me clear means water clear, I mean that you can see through, like from a tap. Not so. clear to the medical community means tan, light brown but free from suspended solids, water like. Well now that I have a better understanding I should be able in the future to better control the outcome of my part of the process.

Yesterday my output was like water, but it was dark brown in color and I could see what I would call suspended solids in the fluid. However it was running close to the time of the procedure and I was afraid to take anymore because my system gets unhappy with the laxative and will extend the time immeasurably. As a result the GI Guy rated my prep as poor. He knows what I've gone through and he went ahead an back flushed a lot and took longer than normal to get a good look. He was able to see all the way to the cecum and everything was normal. He did take a biopsy of the anastomosis (surgery resection joint) just to be sure because that is where the tumor recurred two and half years ago. I was grateful for his time and his attention to detail.

In the future however, I shall begin earlier so the night before I can take the third dose. The normal procedure calls for two doses, but I don't tolerate the bulk of material I have to ingest and get violently sick to my stomach. By reducing the dose but extending the time I made it without any ill effects but did not really get a good prep. Next time I'll have a plan for better carrying off my part of the procedure.

Colonoscopy Prep

Today, February 24, 2014 is a prep day for a colonoscopy scheduled for tomorrow. I have been unsuccessful the last three times in getting a good prep. It is really frustrating. I tried back in August 2013. I got sick trying to consume the large amount of laxative and as a result did not get a thorough prep. When the GI Guy did the procedure he had to shorten it to a flex sig because there was too much fecal material above the surgical joint for him to continue. So, I rescheduled for October. This time I tried Miralax. I had to consume two bottles over the period of a day and drink copious amounts of water. I got so sick I couldn't stand it. I called and cancelled the appointment, I experienced explosive diarrhea and couldn't eat for three days I felt so bad. No more Miralax for me, regardless of what MD Anderson says.

Finally I rescheduled for tomorrow. This time I talked to the Dr.'s nurse and she gave me a sample of a prep I'd read about where the volume of fluid you have to take is reduced and you do it once the day before, then again about 4 hours before the procedure. I altered the process. I actually began on Sunday, two days before. The reason is I have experienced explosive diarrhea from time to time and it is uncontrollable. So I took a bottle of Magnesium Citrate on Sunday about 3 PM. I took one half, waited an hour and then consumed the remaining amount. I drank some water, but not as much as I should have. Bulk seems to make me sick. About 7 PM it started to work and it was about 3 AM before I was able to get much sleep. I did experience explosive diarrhea but I was prepared, I had purchased disposable adult diapers, I had adult wipes at each commode and my mind set was to weather the storm. I never got sick although I did experience some fairly severe abdominal cramps. I even got a warning system worked out, when my intestines would rumble big time, I'd best get up and get to the commode because something was going to happen. As a result I did go a lot, the explosive diarrhea stopped around three in the morning and I feel fine today.

My plan today is to follow the directions on the prep I have. It requires I drink 16oz of the prep followed by two 16 oz containers of water over the intervening hour. I'll do that this afternoon so if I end up with explosive results again I have time to let it run its course. I don't think I'll have the explosive action as I went a lot yesterday, so I'm hoping this will just be a final clean out. Depending on what goes on this afternoon I'll probably skip the early morning prep. Once clean, I should stay clean. Besides, I don't want to be experiencing cramping while the Dr. is trying to run the test.

I'm feeling pretty good about this. I'm comfortable, I had a plan, I handled the mess and my wife did not have to help me.

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.