I have created a separate blog on Bowel Resection Home Recovery. I have a recurrence of colo/rectal cancer and am starting to record early. If you wish to go to the new blog please go to http://bowelresectionhomerecover.blogspot.com/
May 30, 2011
The ABC’s of Bowel Resection Recovery @ Home
I did not make an exhaustive search of the internet concerning home recovery after bowel resection surgery. Most of what I found were what to expect after surgery but while still in the hospital. I wished I had some information on the recovery after you left the hospital and were home. I did have support from a sister who had uterine cancer, but that is not a bowel resection, she could only tell me so much. I had a niece and daughter that had a hysterectomy but once again not a bowel resection.
One thing my support group did get through to me was be patient it will take a long time before you start feeling well, food will not taste the same and your stamina will be very poor. All of those things were true. They warned me about elevated anxiety that was to prove accurate. Other than relatives I could not find actual experience concerning issues I may encounter while recovering at home.
I decided to write about my own experience and perhaps it might help others who undergo the major surgical procedure called bowel resection.
I am writing this at the end of week 5 after surgery. I just did not have the motivation or inspiration to write it earlier, so I may leave out some details but I believe those details will be minor.
About the Author:
I am a white male, 62 years of age. I take medication for high blood pressure, high cholesterol, arrhythmia, and am a Type II diabetic, In addition I do encounter episodes of Premature Ventricular Contractions (PVC’s) although infrequently. Sounds like I am not doing so well but actually I consider myself in pretty good shape. My problems are under control and I do exercise regularly. I am also a recovering alcoholic with over twenty years sobriety, and I quite smoking thirty years ago.
I was required to see a cardiologist prior to surgery to assess my ability to withstand the procedure. The cardiologist perform EKG tests and an Echo Cardiogram and found no evidence of blockage, I passed the stress test with flying colors and was OK’d for surgery.
About the Surgery
Surgery went well. The suspicious mass found in the Colonoscopy was down low in my large colon. The Doctor attempted laparoscopic surgery but ended up having to use the traditional surgical technique of opening the abdomen. So my stay in the hospital was 6 – 7 days instead of 4 – 5. If you want to read about recovery in the hospital go to Google and search under Bowel Resection you will find several sites that give you the check list of things the hospital staff do to aid in your recovery. Remember, each hospital is a little different and all surgeons do not do things exactly the same ways so don’t be concerned if you don’t see certain things you read about being done. However, ask questions.
We are not alike
Everyone of is different. Our bodies will react differently, however much of what we experience will be similar. I do not pretend to suggest that what you read below you will experience. You may however, experience similar events and draw knowledge and/or comfort from knowing that you were not alone.
Anger
Often when I am uncomfortable I want to be left alone. Remember that people around you do not know the level of discomfort you feel. It is easy to feel that you want people to do things for you but you do not wish to talk, you can’t have it both ways. People who are around need to try to understand your level of discomfort, by the same token you need to practice a little patience.
Anxiety
I was told that anxiety is part of major surgery.
My first bout with anxiety was in the hospital. Having found out the growth was malignant but caught very early didn’t really ease my mind. I think the anxiety comes from a combination of anesthesia; the pain you encounter and the fact that you realize you are dependent on a group of people for your needs. Perhaps a little of having to come to grips with your own mortality again is part of the equation.
Don’t hide that you are fearful. It is a common occurrence. I would tell the nurses when I was afraid, sometimes they were able to help me, sometimes just being their eased my fear. When I came home I would get these anxious moments. Some people are sleepers, in other words when they feel bad they are able to put their heads down and go to sleep. I am not, I stay awake, my mind seems to take its own lead and I can become quite anxious. One other thing, pain medication may give you freedom from pain, but it does not necessarily allow you to rest. I got wired (high) and had a real hard time falling asleep.
Make sure your Family Doctor is aware of your surgery. Surgeons know little of anti-anxiety drugs while Family Doctors deal with anxiety a lot. If you experience anxious moments call the Family Doctor, he may be able to help. (See the section on Drugs for additional information of anxiety.)
Bowels
My bowels were cut on, they did not like it. They were trying to figure out the new operating methods with a loss of direction. It took three days at home, nine days after surgery before I had my first bowel movement. I was eating soft, bland foods I am sure that contributed to the time lapse. The Surgeon had told me to go ahead and resume my normal diet when I got home, HA!
First of all food doesn’t taste good. You might like Peach Cobbler, but it won’t taste the same. My appetite was almost nonexistent. I had lost twenty pounds in the hospital and continued to lose at home.
I will tell you this; your bowels apparently failed basic high school physics. They are unable to tell the difference between solids and gases. Early on at home I would have a bowel movement and the stool would slip out. Very little strain, it was like the way was greased and out it came. The problem was I would go a little a lot. The first few weeks I would end up sitting on the commode fifteen to twenty times a day. Sometimes I could go, other times I could not, however I felt the need to go almost constantly. Even after five weeks I have some trouble.
Panty Liners: Yes that’s right Panty Liners. My wife made the suggestion. It seems that I suffered from leakage of some sort. I am working my way through my second box of Carefree Body Shape Long (46 liners). They have an adhesive that allows you to attach them to your underwear. I am wearing briefs. Sometimes I have a bowel movement, some times I have gas, sometimes I get a little of both. In addition I get some leakage apparently when I pass gas. Either use panty liners or stock up on underwear and be prepared to change often.
Some other difficulties:
1. I experience the feeling like I had to go to the bathroom often, early on in some cases almost constantly. Most of the time it was a false alarm, but the problem was I could not differentiate between the real thing and a false alarm.
2. Hang fires, these are very uncomfortable. You feel like you have to have a BM (bowel movement) So you sit on the commode, sure enough a stool comes, problem is you cannot void the entire stool and it breaks off leaving you with an incomplete BM. Your muscle tone is such that you cannot void the remaining stool. So you are left with this constant feeling of having to go, but you can’t. It is uncomfortable as hell, however within a hour it will pass. Be patient. In the meantime you walk around with a constant straining feeling. (Oh well at this stage of your recovery what else were you going to do, play tennis?)
3. Rabbit pellets: Sometimes you will feel like you really have to go, when you sit on the commode a stool the size of a rabbit pellet comes out and that’s all. It is not really uncomfortable, just disappointing.
4. Lost confidence: This is a term my Dad used when he had diarrhea. I come from a family where passing gas, breaking wind, farting is a normal humorous event. I have spent untold hours laughing over this topic. It ain’t funny in recovery. I normally do not encounter stomach problems, but now my stomach bloats quite often. Sometimes I can pass gas to relieve the symptoms. However, quite often I’m not sure what is going to happen, sometimes I pass gas sometimes it feels like a little stool came along for the ride. Go check. I have also had to hurry to the “john” trying to hold the event in only to pass gas in spite of all my cheek clenching.
It gets better. I am coming to the end of week five since surgery. My bowels are still not settled, however I am having longer periods of freedom from feeling like I have to go. I am still wearing Panty Liners though, and still experience some type of leakage, but I am growing more confident.
Care
I was fortunate. My wife took off two weeks from work so she could stay with me through recovery in the hospital and the first week at home. Our daughter is a surgical nurse for a hospital in our area and was in between jobs so between she and my wife I had twenty-four hour coverage the first week while I was in the hospital. In addition, because of her surgical background she could shed light on the operation, but not much on the recovery If you've heard the term patient advocate, I suggest you have a relative with you at all times in the hospital to look out for your care. .
I recommend you make some provisions for care at home during the first week or two. Obviously the hospital has professional care givers on duty around the clock. However, you have to remember they are caring for a number of patients, not just you. You can have a problem that in your mind requires immediate attention and having someone there for you helps.
At home, you will need help. Your abdomen is sore, you feel like hell, your bowels are giving you grief and there is nothing enjoyable about the first week or two, or more. Having someone to help you or just listen to you bitch the first week is helpful.
Dehydration
When I left the hospital a few of the nurses reminded me to drink plenty of water. At home my stomach was so upset I drank soda to try and burp and relieve the gas build up, I finally became so sick I drank little at all. At the beginning of week four after surgery my daughter who is an LPN on a Medical/Surgical floor of a hospital up north came to visit. She performed a patient assessment and during a simple what is called pinch test she felt I was dehydrated. This was on a Sunday morning after I had been through three days of being really sick at my stomach all day long. I felt so bad I was ready to go back to the hospital. After my daughter decided I was dehydrated and began reading me the symptoms of clinical dehydration a lot my symptoms were covered in her information. I began to drink water. A lot of water, within hours the symptoms started to let up, the upset stomach went away, my appetite improved, and my tolerance for my somewhat spicy pizza was OK.
The message is drink lots of water. I now have breakfast, drink a little coffee then about 10:00 AM I start sipping a large glass of water and have it with me throughout the day. I don’t know how much water I take in, but it is a hell of lot more than I did before. I perform the little pinch test on the back of your hand to see of the skin tents or snaps back down. If the skin tents slightly instead of returning to its original position immediately you could be dehydrated. After increasing my water intake my hands look better, less wrinkled than before. So drink lots of water.
Drugs
When I came home from the hospital I should have waited some time, maybe up to a day before I took any pain medication. The reason: to ascertain the level of pain I was encountering. I found out from a pharmacist that drugs flush out from your body in a half life. In other words, if a physician says the drugs should flush out in four hours, what that means is one half of the drug level will flush out in four hours. For example, you may lose the pain fighting capability of a drug in four hours, but the drug isn’t gone so you could end up with a drug build up lasting longer than anticipated. One other thing, usually the Doctor prescribes the pain killer to be taken as needed, put as much time between pills as you can stand.
This is why I recommend you determine the level of pain you are experiencing. Reason: when you in the hospital you will have had access to some pretty powerful pain killing drugs. Plus you will have a PCA, which is device with which you can administer your own pain killing drugs on command, within reason. You may not be aware of your level of pain because you and the nurses kept it disguised while in the hospital.
I have a fairly high tolerance for pain. I made a mistake though and just kept on taking the pain pills at home without understanding what the side effects were and whether or not I really needed them. The instructions for my pain pills were every four hours as needed. That means do not take them less often than four hours, but take them as needed, and I never let them flush out to see if I needed them. This led to a nasty experience.
When I first arrived home I started taking the pain pills without waiting to see if I really needed them. The pills were the generic form of Lortab 500 MG. The first few days I felt pretty good, I wanted to talk to people, I wrote emails, I acted just like I did when I drank, exuberant, sentimental, and quite emotional. Our daughter pointed out that I was “wired.” Later in the week I started encountering spells of anxiousness. As the weekend approached I decided to get on the program of taking these pain pills every four hours. I grew increasingly anxious and fearful. Finally on Sunday morning at 3:00 AM I took a pill and tried to lie down. Within fifteen minutes I jumped out of bed and began pacing the floor, wringing my hands and telling my wife I was so afraid I did not know what to do. I was exhausted because the drugs were not letting me sleep any more than four hours a night and now I was so afraid of laying down and not waking up I couldn’t sleep. It was not a pretty scene.
About 4:00 AM I went down stairs and got the drug monograph and read about the side effects. There was one section that said, “Notify your physician immediately if your experience any of the following: Anxiety, Fear, Shallow Breathing.” The reason I was so fearful was that when I lay down it seemed difficult to breath.
I stopped taking the drugs. Further research lead to no satisfactory resolution to my problem by calling the Surgeon on Duty at the clinic performing my surgery. In fact the Surgeon on call said he doubted the pain pills caused the anxiety. Finally after waiting for the local Wal*Mart to open a Pharmacist on duty said the drugs could definitely cause fear and anxiety. He was no help in suggesting an alternative, but he was the person who explained drug half-life to me. Finally calling my Family Doctor’s new clinic he joined got me a Doctor who did a mea culpa. This Doctor suggested a natural sleep remedy OTC (Over The Counter) and would not prescribe something else as it would just be adding another drug. I was in trouble, exhausted, sick, sore and needed help.
Later Sunday I took some Benadryl that helped me sleep but that left me feeling drugged, nauseous, and lethargic. At least I got some sleep.
Daily I was having an upset stomach with nausea. The Benadryl induced sleep was not good, I felt lethargic and the rest was not satisfying.
Finally on Friday I went to the Family Clinic my normal Doctor was at, but had to see another physician. He prescribed some Phenergan for nausea, Lunesta as a sleep aid, and Nexium to prevent a stress ulcer in my stomach. These helped. The nausea subsided by getting off the Benadryl, I was able to sleep at night with the aid of Lunesta, and I guess the Nexium was doing its thing.
Sleep aids can cause dependency. The prescribing Doctor told me to take a Lunesta before bed for the first week, then go to bed and sleep. I did that, and it worked. The second week he asked that I try to go to sleep without Lunesta, but if I did not fall asleep within half and hour to take a pill and go to bed. I found that I did not have to take Lunesta again. I only took two Phenergan because I was not experiencing severe nausea as I had been. However, I was still encountering an upset stomach almost every morning.
Finally, two weeks later I did go see my regular Family Doctor, and was it good to see an old friend. This Doctor had me continue the Nexium, he felt that was a good idea. In addition he prescribed Flomax because I was experiencing frequent urination. When I say frequent I mean like every half hour or so. He also gave me a 0.5 MG pill that was the generic Xanax. I got a stern warning not to use these pills regularly. They were just to be used when I had an anxious moment and no more. In over a week I have taken one of these pills, it was good, but I really don’t even want to take another. One problem the Doctor did uncover was I have a slight urinary tract or bladder infection. This can result from the use of a catheter in the hospital. I am taking a generic from of CIPRO, an anti-biotic, that leaves you light headed and a little dizzy for a few days as your body adjusts to the medication. It is a fourteen day drug regime and I am completing day four. Already though I notice a difference when I have to urinate, the pain is lessened, the stream is stronger, and it doesn’t burn when I go.
My Advice: Read the drug monographs concerning the drug you are taking. For example, when I take Nexium I’m not supposed to ingest any food for an hour after taking. The anti-biotic doesn’t work well in the presence of milk. The Doctor’s don’t tell you this. It is worth the time to have the Pharmacist at your local drugstore explain the side effects. I have found Doctors to be unreliable in drug interaction.
Drugs I have taken during home recovery
Nexium 40 MG Capsule: The Family Doctor recommended I take this medication for a couple of months. I guess being a Type II diabetic and with the type of surgery I might be at risk for some type of ulcer. The Doctor said I might get a metallic taste in my mouth, and I do.
Hydroco/APAP10-500MG Capsule: The pain pill. Make sure your are aware of the side effects, and like I said, I wish I had not taken any at first to see what level of pain I was at. If you can get by without, that’s my recommendation.
Promethazine 25MG Tablet: Generic for Phenergan. I have only taken two of these pills. I took them when my stomach was extremely upset. If I could deal with the upset I did, but twice I took the pill and it worked well.
Lunesta 3MG Tablet: I was prescribed 30 pills and told to take them at bedtime for the first week. After one week I was to try to go to sleep without them. I only needed them the first week.
Alprzolam 0.5MG Tablet: Generic for Xanax. I was having anxious moments, especially late at night that interrupt sleep. My Family Doctor warned me to use these pills sparingly as you can form a dependency. In a week I have only taken 1 pill. The fact that I have them provides about as much comfort as taking the pill does.
Ciprofloxacn 500MG: Generic for Cipro. A slight bladder/urinary tract infection was detected so this anti-biotic was prescribed. You have to take two pills a day for fourteen days. You do have to watch your dairy product intake as it can effect the effectiveness of the pills. Once again, read the directions. This pill is having some effect on my body, the first day I was light headed and I experienced bloating. The drug is working, the pain I was encountering when I urinated has diminished.
Flomax 0.4 MG Capsule: I was urinating often. The first couple of weeks at home it seemed like every half hour, even at night. The Doctor prescribed this medication to lessen the frequency. It seems to be working, but I am drinking a lot of water to aid the anti-biotic so I might be my own worst enemy.
Exercise
I have always had the attitude that you need to exercise some. I am not a fitness buff, I’d like to be but I seem to lack the discipline. However, recovery will be aided if you will just start walking. I have a small home, my first walking track was around the living room and kitchen. Many times I did this because my stomach became upset while eating, but other times I just walked a few laps.
The Doctor’s will tell you that it stimulates the digestive system, and it does. Within the first week I walked around our circular driveway. I will say this, you will push too hard. I cannot over emphasize the lack of stamina you will encounter. I took this attitude, today I walked one lap, and tomorrow I’ll walk two. You will find that sometimes you cannot walk at all because you might encounter one of those half-step back days. Those are days that you did a little too much the day before and now feel like hell.
Walking is important. It gives you a sense of accomplishment and I think helps your body reestablish a baseline sense of normalcy.
Food
The Surgeon told me when I left the hospital to resume my normal diet. I couldn’t, I was encountering an upset stomach daily and had to force myself to eat because I knew I needed the nourishment. Spicy foods aggravated the stomach upset and brought about bouts of gas build up that I could not expel. I could not even manage a good fart, and me who enjoys it so much. I drank sodas to prime the pump so to speak, in other words the carbonation encouraged me to burp, it did work some, sometimes not. I still have a bloating problem five weeks past the surgery. However, I also might have a Gall Bladder problem that is causing the frequent upset stomach. I exhibit some symptoms, plus the CT Scan as part of a pre-surgery check revealed I do have Gall stones. Taking everything into account it is difficult for me to say the upset stomach is from surgery; too many possible contributing factors. Just don’t over do the food, I don’t think it will be a problem; you won’t have much of an appetite for the first four weeks.
Be forewarned though, food will not taste the same for as long as four weeks after surgery. I have some favorite dishes that we tried and nothing tasted as I remembered it.
Gas
Before I could go home from the hospital I had to pass gas. I think what they are looking for is that your digestive system kicks into gear. It does have to be restarted after surgery. Warning, if you think your farts don’t smell just wait. I used to be a drinker and I thought beer farts were bad, hell after surgery I almost got up and left the room. It does ease off in about a week.
However I do suffer quite often from bloating that I don’t seem to get rid of right away. As I said I have been diagnosed with Gall Stones so my Family Doctor thinks that could be contributing to the stomach discomfort.
Hemorrhoid
I hope you don’t have one. I have been occasionally bothered by a hemorrhoid through the years. Usually it is no big deal, a little Preparation H and within a day or so I’m fine. However, when your bowels ain’t happy, your hemorrhoid ain’t happy. The second day home I pushed my little friend. The problems was I was going a little a lot, therefore I had plenty of opportunity to piss my little friend off. When I was first home I called my Doctor’s nurse, who are great people to befriend by the way, and asked what I could do. I was told it was too close to the surgical date and that try Vaseline or some such, but no ointments that could shrink tissue. My little friend hurt like hell, especially when I would have to sit on the commode, which was often.
Two weeks after surgery the nurse told me to go ahead and use Preparation H. My little friend did not shrink down, but at least the pain left. After five weeks now, the pain is gone, he is still there, but is showing signs of going back into hiding. It was a miserable period. So make sure early on you don’t push too hard to have a bowel movement.
Nighttime:
For the first few weeks I hated nighttime. My abdomen ached, I had to urinate often, my bowels weren’t regular so you might find yourself up numerous times a night. When I woke in the morning my stomach would be upset, or at least unhappy. It just was not a pleasant time for me. It gets better. Now, I still get up several times a night, but I always have. I rest fairly well, but I do still encounter an unhappy stomach on occasion.
Epilogue:
As of now it is six weeks since surgery. There is no doubt I am recovering. There are only two issues left, my stomach and bowel regularity. I have a feeling those will linger for some time. I am comfortable when I go to bed, the anxiety I experienced has diminished to its old acceptable level. My stamina is improving, however I still tire quite easily. Recovery has been difficult and will go on for sometime. As my Surgeon told me, remember, you have had major surgery. This ranks very high on the list of major surgeries. It will take time to recover, but be assured you will feel better. I hope all goes well with you, if you wish to contact me for any questions, or updates feel free to use my email address:
tfloria@grnco.net.
Update: January 2009
Now two years have passed. I continue to learn. I am not sure if I am continuing to improve or if things change as part of a natural process. I still have bowel issues, but they aren't bad. Having suffered a small bowel obstruction six months ago I find that I have some psychological issues. I am convinced the cancer is gone. In fact Thursday I had an appointment with the surgeon who did the procedure and he stressed that the cancer was Stage 1, it was caught so early that I am cured. My risk of occurrence is the same as someone who never had colon cancer, 1 maybe 2%. However the bowel obstruction could occur at any time. I found that experience very miserable and do not want to repeat that episode. However, now that I know what the sensation is I would probably tolerate the problem better, but it scared the heck out of me.
I still find that certain foods seem to trigger gas attacks. Some fatty foods can cause me to go to the bathroom as if I'd taken a strong laxative. I do not experience diarrhea, but the stool will be soft. I will go a lot and often, then when the system has cleared itself I start again. I do have a number of days where I feel normal. My confidence grows, and I'm feeling real good. I am more sensitive to digestive tract action, bloating, little pains that might arise then disappear. I have a feeling they were always there, I just wasn't sensitized to them.
Life is good, I have no limitation, enjoy all manner of food and spice doesn't seem to make a difference. Fat content does, but not all of the time. I am learning to live in the new paradigm.
Good luck all.
Update: March 25, 2009
I meant to include in an update some time ago a difficulty I ran into called a bowel obstruction. One of the reasons surgeons do not like invasive abdominal surgery is you can have adhesions. I don't know a lot about them, but as I understand it they can be where tissue once separate can grow together. It almost sounds as though you might have one attach two separate sets of tissue.
June of 2008 I began to experience a stomach ache, the old fashioned kind I refer to as a green apple stomach ache. Just painful, no gas, no diarrhea, nothing but a tummy ache. It began on Monday morning and lasted in varying degrees of discomfort all Monday and Monday evening. Tuesday morning it seemed better and I took my morning walk, however after eating breakfast it got worse and I lay on the bed much of the morning. About noon it really became painful, to the point it was difficult to walk upright. I took a laxative as I hadn't gone for two days. Nothing happened. While sitting on the commode I became very sick and in severe pain. I ended up lying on the bathroom floor in a fetal position as that was the only way I could get a little relief. I broke out in a pouring sweat, and had chills. My wife told me she had never seen anything like it. I vomited but not much relief. I finally got dressed and went to our family doctor.
They took an X-ray, ran some blood tests, and I became sick in his office. They gave me a shot for nausea and pain and sent me to the emergency room. I was diagnosed with Small Bowel Obstruction and they put a NG tube in my nose. I believe that stands for nasal gastrointestinal tube, it is how they pump your stomach. All manner of stuff was pumped out. The surgeon who had performed my surgery came in and told me I had this obstruction. The NG hose also creates a slight vacuum in the stomach and sometimes the obstruction which was described as a kink in a water hose, will relieve itself. Otherwise surgery is required to relieve the obstruction.
Fortunately the vacuum worked about 3 AM I began passing gas, loose bowel and for about an hour and a half I kept the staff busy helping me clean myself, filling a portable commode about three times, and having to change my gown and bedding about four times. It was embarrasing but the staff was very understanding and forgiving and supportive, God bless them. The next morning the surgeon removed the tube, I was put on a liquid diet for one day to see if the obstruction had disappeared and I was released. Two days later I was on a two week car trip by myself to Michigan to visit relatives.
Symptoms:
Tummy ache that gets progressively worse.
You do not pass gas, nor have a bowel movement.
Nausea with vomiting
Progressively increasing pain.
What to do:
Make sure the pain isn't gas. You'll know that. A small bowel obstruction gives you a band of pain across the top of your tummy in a band from left to right. A large bowel obstruction is much lower, below the tummy.
Switch to liquids, don't keep stuffing food in as I did even though you get hungry.
Notify the Doctor and get the hence to an ER
Follow Up:
I had a SBFT (Small Bowel Follow Through) You drink a foul barium solution and have to wait until it coats your small bowel then the radiologist looks at your small intestines and looks for an obstruction. Normally there isn't one which indicates and adhesion. Otherwise surgery.
If it is a large bowel obstruction then it means a colonoscopy which I would frankly rather than the SBFT. My bowels really reacted poorly to the barium and my stools where white for two weeks.
Update: April 28, 2012
The first update in 2009, wow, was I ever wrong. I stated that I was cancer free and had reverted to the position of not having had cancer at all. It was there. It was there from the very beginning. In April of 2011 a colonoscopy reveal a recurrence of the colon cancer at the anastamosis, that is the seam of the original incision. The radiologist said it probably was at the cellular level and drugs would probably not have effected it, so I guess it was the luck of the draw. I am going to write a blog on the recurrence and subsequent issues with that because I had radiation/chemo, and iliostomy, and reversal. It was a hell of a process and a tough road. I am good now, but for how long, forever I guess.
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