Colostomy help from first hand experience?
Newbie to the forums here, am hoping that someone (or a bunch of people!) who have experience with colostomy bags will be willing to share their stories, good or bad.
My 67 year old dad is in poor health. He :
- is obese (about 300 lbs)
- was an alcoholic for approx 30 years
- smoked for approx 20 years
After a lifetime of neglecting his health, last year during a long overdue check up it was determined that he has prostate cancer (and apparently the largest mass his urologist has ever seen). When in the hospital for tests related to that, it was also determined that he has colon cancer, and was in acute kidney failure.
Doctors won't do prostate treatment unless he has the colon cancer removed first. (Totally understand, why waste resources on someone who won't take care of other terminal issues.)
He refuses the colon cancer surgery. According to the surgeon, it's not that bad and is "completely removable." There are three reasons why he is refusing, the first two are my assumption - 1) he doesn't want to die in the OR and 2) he doesn't want to do any hard work or feel any discomfort with regards to recuperation. But what he tells us, is that he is adamantly against a colostomy bag.
Now, you should understand that my dad is a miserable human being, always has been. He doesn't work anymore, and he stopped socializing about 20 years ago. He stays in the house, watches tv, sometimes goes out for breakfast and sometimes goes to the casino. But it's not that he's active and therefore afraid that he won't be able to do the millions of things he loves. He just equates a colostomy bag to a low quality of life, and an extreme embarrassment to have anyone (eg home care) take care of/maintain it.
Even though our family is hyper-dysfunctional, we all agree that not having the surgery because of that is ridiculous, and he has had three doctors tell him that as well.
Loooong story short - can anyone provide first hand experience with colostomy bags that I can print off and give to him, so he can read real experiences from people who know?
I am totally okay with him making his decision for himself, but only if he's educated enough to understand all the options, and I don't think he is.
Anyone with experience with colostomy or senior-aged colon cancer surgery recovery expectations would be appreciated.
Thanks so much in advance.
I don't have a colostomy bag myself but I looked on the internet for you and here is the most informative first hand account I could find:
I am not a doctor and the information that follows is not intended as medical advice. It is written to give you an idea of how I survived my operation and some of the things I found helpful along the way. All medical advice should be obtained from your doctor. If you have questions about any of this information, ask your doctor. Your doctor is your source of medical advice and his/her directions should always be followed above anything else.
A Few Words About The Author
I had been experiencing acute pain for several days prior to entering the hospital, but I ignored the pain until it had built up to where I was rolled up in bed with severe cramps and couldn't move. This was my biggest mistake. I should have seen a doctor several days earlier and possibly my fate would have been different.
On October 3, 1995 I entered the hospital with an acute case of perforated diverticulitis, and peritonitis. The peritonitis, a severe infection in the abdomen, was trying to destroy my organs. As a result of this I ended up having a colostomy.
On January 2, 1996 I returned to the hospital to have the colostomy reversed. I was sent home for recovery on January 7, 1996.
On January 14, 1996 I was back in the hospital with complications due to the re-attachment of the colon failing, and again I had abdominal infection. I was put under close watch and given antibiotics until January 17, 1996 when the reversal had completely failed and I again had peritonitis. Another colostomy was done and a longer time was prescribed to allow the tissue to heal before we would attempt another reversal.
On September 3, 1996 I again returned to the hospital to have a reversal done. This time everything went as it was supposed to and I am well on the road to resuming my life as I knew it before all this started.
It is important to note that during my procedures I had some of the best doctors and specialists available. Sometimes when you are told that there is a 5% chance of failure there is a real chance that it may happen to you, but you can't let that stop you. I feel good that I had doctors that cared and were willing to share information with me openly. This is not always the case so you must insist on being informed. It is only through being informed that you can make responsible decisions and have the facts you need to have a successful, speedy recovery.
To sum it all up, I have been there, and, I have done that!
I am writing this in hopes that my experiences will help someone else get through similar experiences without the uncertainty that comes from not knowing what to expect. Who better to tell you what to expect than someone who has been through this them self.
What Is A Colostomy
In simple terms, a colostomy is when the colon is cut in half and the end leading to the stomach is brought through the wall of the abdomen and attached to the skin. The end of the colon that leads to the rectum is closed off and becomes dormant. This is known as a "Hartmann's Colostomy". There are other types of colostomy procedures, but this one is the most common.
Usually a colostomy is performed for infection, blockage, or in rare instances, severe trauma of the colon. This is not an operation to be taken lightly. It is truly quite serious and demands the close attention of both patient and doctor. A colostomy is often performed so that an infection can be stopped and/or the affected colon tissues can heal. The alternative to the colostomy is often pretty grim, death. Just be glad you are here. It is important realize that, with a few exceptions, you can look forward to having the colostomy reversed.
The operation usually takes between two and four hours depending on difficulty, infection, and the severity of trauma if that is the case. Most of the reasons for a colostomy are: diverticulitis, other inflammatory bowel conditions, or cancer.
Since you are having the operation, you should discuss with your doctor whether or not you should have the appendix removed at the same time, since they are going to be in there anyway. It is not a necessary organ and, if removed, it can never cause you problems in the future.
It is normal practice to open the abdomen with an incision from just below belt line to just below the sternum. This gives open access to the internal organs. If you have infection, the doctor will suction and flush out the contaminates until you are clean.
Your colon is retrieved and inspected to locate the bad area. The bad area is then removed and the rectal end of the colon is sealed off. The end of the colon that comes from the stomach is cleaned and brought through the abdominal wall through another incision to provide an opening for the colon to expel gas and stool. After the colon is sutured in place, the first incision is either sutured or stapled together and the entire area is taped to protect the sutures or staples. A colostomy bag is applied to the area where the colon comes through the abdomen. This area is called a stoma.
During the operation there will be a catheter installed to drain the urine. This usually stays in for a couple of days. You will also have an intravenous (IV) line for medication and fluids. This will stay in for several days.
The recovery process is, in large part, what you make of it. You can lie around feeling bad, which will slow or stall your recovery, or you can begin the process that will get you up and out of the hospital. It is perfectly normal to feel badly about being in the hospital and about your condition, but it beats the alternatives. You will adapt and you will get along and enjoy life in a reasonably normal manner if you want to. While I had my colostomy bag I found I could still ride my motorcycle, still hike in the woods, still go swimming, still go boating and camping, I even was able to hang around with my friends and do frivolous things and enjoy myself. The point I really want to make is that just because you are wearing a colostomy bag is no reason to give up the things you like to do or to become a hermit. Enjoy the life that this operation has allowed you to live and look forward to the future. KEEP YOUR SENSE OF HUMOR! There are many operations that are worse and there are many diseases that are worse.
Step one of recovery is to follow your doctors recommendations to the letter. Your first phase will be to walk and cough. Walking and coughing help to settle your stomach and clear your lungs. I found that I could force myself to walk a lot because I knew that I had to build up my muscles. You will probably start out with short trips from your bed and in a day or two you should be able to walk for 10 to 15 minutes at a time (more is better). Take it easy and don't overexert at first. During my first operation it took me two days before I could walk for 10 minutes, and during my last operation I was walking 9 hours after my operation. Keep trying.
Getting out of the bed is half the battle. I found that if I lifted the top of the bed straight up and lowered the bottom of the bed all the way down, I could swing out and slide off the edge of the bed. The first couple of days this is really uncomfortable but remember, your abdomen -or you- has been cut open, your insides have been moved all around, your abdominal muscles seem useless, and you probably just want to lie down and be left alone. Sorry, but you must force yourself to get up if you want to get better.
After a couple of days, walking will become easier but don't be afraid to ask for pain medication if you feel you need it. About day five you will find that it isn't quite so hard to get out of bed and your walks last a lot longer. Recovery from this point is just determination. Be determined.
Once you are reasonably mobile and pass a little gas you are starting to fall into a routine and recovering well enough that the nurses will want to wean you from some or all of your medication and remove IV's. This is good, don't feel that you are dependent upon them or that form of pain control. Pain can be successfully controlled with pills and it is during this weaning process that you will find out what type of pills work best for you. Don't be shy, tell the nurses and your doctor if the pills you are using don't work and give them the opportunity to try something else to ease your pain.
The most important thing now is to get out of the hospital and back home where you can be around your family and/or your stuff.
So You Made It Home
Now that you are home keep walking regularly (often). It is just as important to walk at home as it was in the hospital. The more walking that you do the sooner you get to feeling better. Take any medications when you are supposed to, the doctor didn't prescribe them as an exercise, he prescribed them because they are part of your recovery therapy and he expects you to take them.
Once you start feeling a little stronger you might try backing off the pain pills a little so you don't become too dependent on them. You will find that after a few weeks you won't need them and if you have been doing your exercises, you are getting around pretty well. It seems to take about six weeks for everything to feel OK. I have my own business and I didn't have the luxury of taking time off of work so I had to work lightly after I had been home for about a week. After two and a half weeks I was working at about 80% and after five weeks I was working normally. Again it is important to not over exert yourself and when you get tired, take a rest or a nap. Your recovery attitude will dictate your recovery speed for the most part. It seems like it was about 2 1/2 months before I went through the whole day and didn't think about any aches and pains. After about 4 months I felt really good (normal). I understand that with such a serious operation it probably takes about a year to really recover and for everything to be normal.
You may notice that your incisions leak or bleed a little. This is not unusual and it should not last long, but always consult your doctor if you are not sure or you are uncomfortable about it. Always keep your incisions clean.
By couple of weeks after your operation your doctor will remove your sutures or staples. You may notice that the area around the incision is hard and irregular. Don't worry about this, time will take care of it. After a few months, the lumps and irregularities will even out and the hard area will become less hard. Like the saying goes "Time Heals All Wounds", there is a lot of truth to it. You can try a lotion with vitamin E and lanolin to help soften the skin and reduce itching.
How To Deal With Your Colostomy Bag
There are different types of colostomy bags. Some strap on, some stick on. I preferred the stick on type because they required less fussing with. I tried the strap on type and it was uncomfortable around my abdomen. You may not agree. The strap on bag fits over the stoma and a belt goes around you to hold it in place. The stick on bag fits over the stoma and is held on by a wax that adheres to you. The stick on bag requires more attention during installation. Both bags require that you shave the area of the skin around the stoma. I shaved about two inches around the stoma. The reason you have to shave this area is twofold. One is for sanitary purposes and the other is, if you use the stick on bag, so you don't feel as if you are pulling the hairs out when you remove the bag after a few days. It is bad enough after a few days when the hairs have had a chance to grow a little and attach themselves to the wax. You can't stop this, you can only minimize it. In the process of shaving around the stoma, you may touch the stoma with the razor unit and the stoma may begin to bleed. This may also occur if you wash the stoma a little too aggressively. Don't worry, the stoma is very sensitive and bleeds easily if scrapped or nicked. The stoma does not have pain sensors for this so you must be careful and watchful of what you are doing. If the bleeding is severe or won't stop, call your doctor or get medical assistance. Most of the time when you have bleeding it will be minimal and stop rather quickly.
After you have shaved and washed the stoma area you are ready to install a new bag. If you choose the strap on style, strap it on and you are done. If you choose the stick on style you will need to cut the wax area to fit your stoma size. Fitting the stoma is not very hard. The box that the bag came in will have a cardboard piece with a series of holes in it. Find the hole that most closely fits your stoma, but does not pinch the edges of the stoma. Place the hole selected over the back of the bag and note the area that has to be removed. Remove with scissors. Peel the protective cover off the wax and put a thin bead of stoma paste around the very edge of the hole you just cut. This acts as a seal and a fluid barrier. Don't use too much as the more paste you use the less wax you will have sticking to you. Apply the bag to clean, dry skin so that the opening for draining the bag hangs straight down, this makes it easier to clean out between changes. Clamp the bottom of either bag and you are done. This sounds complicated but it isn't after you have done it a few times. You should be able to change the bag in about 5 to 7 minutes. Always carry an extra bag with you, JUST IN CASE. They fit easily into a back pocket or purse and in an emergency you will be glad you have it.
Now the hard part - cleaning out the bag. This is not a pleasant task at first. If you are sensitive you will not like it but you will get used to it. When I changed my first bag I thought I would gag from the smell. You are closer to the stomach and the smell isn't good. I got a swimming nose plug from the sporting goods store so I didn't have to smell it. After a couple of weeks you get used to it and it won't bother you. First you may need to bleed gas off from the bag. You still pass gas, but now it goes into the bag and slowly inflates it like a balloon. To bleed the gas off tip the bottom of the bag up to provide an air passage to release the gas but not the stool, if there is any, and press gently on the bag until it deflates. If there is enough stool to require emptying, use the gas to your advantage. I sat backwards on the toilet so that I had a better shot at the bowl. Open the clamp on the bottom of the bag, hold the bag downward, apply light pressure to the top of the bag and let the gas push the stool down and out. After this you can use a good spray bottle to clean out the bag. wipe off the bottom with a piece of toilet paper, install the clamp and you're done. It may sound difficult but it isn't and you'll get the hang of it after a couple of times. You'll be amazed at how long a roll of toilet paper will last.
Sometimes you will notice that the area under the wax on your bag itches. There isn't a lot you can do about this short of removing the bag and scratching it. One way to ease this is to apply pressure to the spot that itches, this will help.
Another thought about changing your bag is to do it before you have a meal or well afterwards. The reason for this is when your stomach is full it expands your belly. If you apply the bag under this condition you may find that when this expansion is gone, your skin wants to be smaller and the bag wont let it, thus being a little uncomfortable. Also, when you install the bag, be sure to stand up straight so you don't fold the skin. Standing and sitting flex the bag enough without these extra dimensions coming into play.
Straight Talk About Daily Life And Events
You will likely encounter a number of situations that you may not foresee and I will try to recall as many of them as I can remember having and tell you how I managed or overcame them.
The first clue is a telltale odor - don't dismiss it. Check it out and replace the bag if necessary. Earlier, I suggested that you carry a spare bag, this is why. In almost a year I only had this happen twice but the spare was a real lifesaver. A note - the bag you carry as a spare should already have the hole cut to fit so you don't have to mess with it in some rest room.
Beware it isn't always silent. You will get a funny feeling in your stomach, learn to recognize it, and this can give you as much as 15 seconds notice, not very much, then sometimes you get no advance notice. I handled this with a sense of humor and no-one was ever offended, here's how. Simply smile and say "excuse me but I recently had an operation and I don't have very much control over that yet". I suppose you could stick a pin into the top of the bag to relieve the gas but I never tried it, you might give it a shot.
Swimming and Showering With The Bag On:
Water is not the bags best friend. What happens is that the wax absorbs the water from the side and if exposed to enough water for long enough the wax sort of turns to a soft putty-like substance. It wont stay on for long. If you go swimming, keep it to about 45 minutes and have a spare bag ready to install when you are done. REMEMBER: The stoma and your incisions are not able to deal with sunlight like your skin so you don't want to expose these areas to direct sunlight any more than necessary. I never experienced it, but, I think it might be pretty painful to get a sunburn on these areas and it could cause other problems. I used a baggy swimsuit and pulled it up over the stoma and bag. That seemed to do the trick plus it covered the area so it wouldn't bother anyone else.
I found that roughage, salads and the like, are among the most efficient foods and produce the least amount of stool while fast food restaurant fare produces the most stool in relation to intake. You can watch what you eat and keep an eye on how long different foods take to process and how efficient they are and keep your own mental notes. This may not seem important but it is. You don't want to eat pork and beans 5 hours before you go to a quiet church service. Neither would you want to eat a fast food lunch if you were planning a long trip. You can regulate your food to compliment the activity you have planned and thus keep embarrassing situations and inconveniences to a minimum.
$5.00 Per Bag:
With tax, colostomy bags cost just under $5.00 each. This can get expensive if you change them too often. About every 3 to 5 days is the useful life of a bag if you are careful. Keep the bag clean and watch for flexing of the wax along skin folds or the beltline area. If flexing is occurring it will soften the wax to the point where it will blow out. Don't let the bag get over half full of stool, and don't let the bag balloon over half full from gas. When it gets to these points, empty it. (Since the publication of this article, the price of bags has risen to over $30.00!)
Bag Cleaning Adapter For Your Sink:
You can buy an adapter for your sink faucet that allows you to attach a garden hose to it. Waterbed stores have plastic ones hardware stores have more durable metal ones. You can than adapt a small hose to the faucet which will help you clean the bag out but don't use too much pressure. I was able to adapt a kitchen sink sprayer for rinsing dishes to my bathroom sink and this gave me an on/off handle to better control the water flow. When I was done cleaning the bag I would remove the hose from the sink, clean it, and store it. Except for the 1/4" adapter on the faucet no one was the wiser. I found everything I needed at a local hardware store and it cost well under $20.00.
You will find that you may still want to eliminate rectally. I questioned this at first. How can the rectum function if it is essentially "out of the loop". I learned that the rectum still produces mucus and at a certain point it needs to eliminate what it has accumulated. It usually isn't very much but it is normal. On my first colostomy I eliminated mucus four or five times in the first month then nothing after that. On my second colostomy it occurred about every 7 or 8 days regularly. I would suppose that either is normal. Just don't be alarmed if it happens. Ask your doctor if you're not sure.
What About A Colostomy Reversal
This is a decision that is for you and your doctor to make. If you decide to have a reversal you will find the operation and recovery to be very similar to the first. Lots of walking but generally less hospital and recovery time. I noticed less pain and better mobility from the beginning. If your doctor will do this, it is well worth the trouble, but remember it is not a piece of cake. Prepare yourself for this operation by exercising and getting your weight to a good level (ask your doctor). Be as physically fit and as mentally prepared as you can. This makes the operation easier and the recovery quicker and to some degree less painful.
Just a few thoughts in conclusion. You have had a serious operation, listen to your doctor. This is not the end of the world, but you will have to deal with it. Treat your recovery seriously and be determined. Whenever you are feeling badly, think back a week and you won't feel so badly. You don't have to tough out the pain, that is why your doctor gave you a prescription. Time and exercise can become your best friends. Finally, and perhaps most importantly, KEEP YOUR SENSE OF HUMOR. There may be days that a sense of humor is all you have.
Good luck on your speedy recovery and bright future!
I hope this helps in some small way and I am sure many others here will be able to give you more information and first hand at that.
You and your family are in my thoughts and prayers this evening
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
On Hospice, started 11/12/10
Last PET scan: Oct 12th
Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8
I had one for 7 months. It wasn't too bad. It became a normal part of my life after about the first month.
There were times I hated it. Twice at work it leaked on me, and I was cursing the darn thing (And I don't curse). I am an active outdoors person, and felt it limited me there. So I disliked it for that. I have heard of people leading active lives with no problem, so maybe with enough time I would have had the courage to try more things with it.
But most of the time it was something I could live with.
10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
Jan 2010-May 2010 FOLFIRI and ERBITUX.
June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
Age Diagnosed 40. Current Age:44
I was in a similar boat. However my doctor gave me the option to have a temporary colostomy or an ilostomy (where they take your entire colon). I chose an permanent ilostomy namely cause I have had ulcerative colitis for 18 years and was tired of it. What I can share with you is my experience with the bag and my experience getting out of the hospital. We would use basically the same bag with the exception that the hole for the waste to come out with will be a little larger in his case. His stools will be a little more formed than mine. I was worried about the bag leaking, or others smelling it, or all the other terrible worries that would go through his head. It does take a little getting used to. Initially he will have leaks and there might be the occasional accident. But he will have it reattached. The surgery will take time to recover from he could spend between 2-10 days in the hospital depending on how your body recovers. The previous posted said it right when he said it is important to walk around as soon as possible. It will hurt at first but it helps you recover sooner. The hospital will give you excellent medicine to control the pain, probably morphine. I personally didn't experience much pain it was more temporary discomfort. But everybody is different. It's not the end of the world to deal with a bag, especially if it's just temporary. As a very wise person has posted before.... it's better a bag than a box.
1/15/09 - Colonscopy Biopsy (Stage IIIc Colon Cancer)
1/26/09 - FOLFOX - 5-FU, leucovorin, oxaliplatin, avastin
5/5/09 - Removal of Stage IIIC Colon Cancer Tumor & Permanent Ostomy. 13 lymph nodes removed 12 positive for cancer.
8/6/09 - Started 6 weeks radiation w/5-FU pump
9/21/09 - FOLFOX regimen - 5-FU, leucovorin & oxaliplatin.
10/12/09 - FOLFIRI regimen - 5-FU, leucovorin & irinotecan.
05/07/10 - Stage IV cancer in bones and lymph nodes.
Age Diagnosed 34. Current Age: 35
everyone for your input! I'm going to print this out for my dad, hopefully he'll agree with the "better the bag..." comment.
Thanks again, best wishes on your recoveries.
Hi offspring2, I am sure that carrying for your dad is not an easy job. Been there. It is a great thing to do though. I am using internet quite a bit for research and info and I found really good information about colostomy here - colostomy. I hope you will find it useful.