My Colostomy: Details

My colostomy history and the information below was originally sent as a reply to another post.  I have had some requests to post my reply as a new message.  I hope it helps those who are facing this procedure.

 After being diagnosed with rectal cancer in February, 2005, I have had many people - doctors, interns, medical students, nurses, et. al - tell me to strip naked while they use flashlights, probes and other uncomfortable devices to look into every hole in my body.  And now I seem to have lost any modesty I may have had before, so I'm going to be very graphic.  I'm not trying to be lurid or provocative, but to let you know what you may be facing.

My tumor was less than 3 inches from my anus and the surgeons all agreed it was too low to save my rectum and anus (they want a minimum of 5 inches, but would prefer 6 or more inches from the anus to save the rectum).  The reason for this is that the doctors need a safe margin of area to cut out around the tumor.  I have a friend who is a fellow rectal cancer survivor whose surgeon tried to save his anus.  Now he is rectally incontinent and has to wear Depends at all times because his sphincter muscle will not work properly.  I personally would rather have the bag.

Before the surgery, I took chemo (5-FU by a continuous pump) and radiation (25 "normal" and 3 heavy zaps).  This helped shrink the tumor.

I had the surgery on June 3, 2005.  The surgery itself lasts about 5 hours.  My advice: shop around for a top-of-the-line colorectal surgeon: e.g. there are several websites that rate individual doctors like "Good Doctors.com" and "Bad Doctors.com". Sometimes, these websites deal with only those doctors in your state. Take a note pad and ask lots and lots of questions.  Talk frankly about your concerns.

After surgery, I stayed in intensive care for about 7 days.  During that time, pathology examined lymph nodes and my blood to see if the cancer cells had spread.  In my case, I won the lottery since the only evidence of cancer that was found was confined to the tumor itself.  I will be forever grateful to medicine and science for my new lease on life.

I took Xeloda (2000mg/day) for 21 weeks after the surgery as a preventative.

What does a colostomy look like?  On my lower left abdomen, I have what is called a stoma.  Think of a golf ball cut in half, painted bright red and attached to your stomach.  It has little feeling and is not uncomfortable.  It is the end of my transverse colon curled back on itself.  Stool passes through it and, at this time, I have no control when it will pass so I wear a system ("The Bag").  I use a two-part system made by Convatec.  It consists of a "wafer" (a flat square of material about 3"x3")that uses a high-tech adhesive that adheres over my stoma.  A bag, 8-10 inches long, is attached over a hole in the wafer.  On average, the system lasts about 4-7 days before needing replacement.  I personally get about 4-5 days use before I have to change.  Again, the product is extremely high-tech and well made.  If properly installed (and it is rather easy to do once you get the hang of it), there is no leakage and (blessedly) no odor.  I clean my bag about 3-4 times daily.  Some folks do not have to clean as often, some more often.  The biggest annoyance is the gas:  I'm forever going in the bathroom and "de-gassing" the bag.  Be courteous and use an air freshener afterward.

For about a month after the surgery, I lost a lot of control over my bladder and would wet the bed and my pants from time to time.  This eventually healed.

My biggest mistake was overeating too soon and gaining too much weight.  My abdominal walls were not sufficiently healed and now I have a peristomal hernia that will need repair.  PLEASE!  Take my advice and watch your weight and do not lift heavy objects for at least a year.  An APR is major, major surgery.  You need to protect your abdomen from strain, especially the areas around the incisions.  Also, I went back to work full time too soon (about 3 months after the surgery).  Even though it was a desk job in front of a computer, I know now that I should have started off slowly, perhaps at half days, to continue the healing process.

After I heal from the hernia repair, I will be able to "irrigate".  That is, I can flush my colon with water once a day and not have to wear a bag, just a large bandage.  However, this is not possible for those people who have an ileostomy.

Before the surgery, I had to sign a waiver and consent form that explained the negative side effects that could occur with the operation.  One of them was "erectile dysfunction" and the form said something to the effect that about 50% of patients undergoing the treatment would have some sort of erectile dysfunction, possibly permanent.  Well, it happened to me and happened to all of the men I contacted in my colostomy support group.  Apparently, there are nerves that control erections very close to the area where the surgery is done and it is easy for even the best of surgeons to damage a few of them.

Please do not let this scare you off from the surgery. 

I'm sure your sex life is very important to you ( Hell, it's important to me and I'm in my 60's! ) and I think you should know about this possibility.  However, you may be fortunate and not have this side effect.  If you do have it, don't despair.  First of all, give the healing process 12-18 months to take place (I know, I know - that's an eternity). After that (or possibly before), there are a number of options open to you: Work closely with your urologist.  Viagra, Cialis and Levitra are the first lines of help.  Next, there are injections and pellets ("Muse") that can be used.  Vacuum pumps work very well and it's important to buy a very good one.  The ones sold over the counter in drug stores do not seem to be very effective.  Ask your urologist about the prescription pumps available such as the Osbon brand.  A last resort is an implant,  But from what I've read, the implant is a very good and satifying alternative for many men and their spouses.

I'm sorry I took so much space to describe the negative sexual side effects that can occur.  To those of you who are inside the candy store enjoying all the treats whenever you want, it may not seem important to you.  But if you're the little kid who is locked outside and can only look in the window, it can become enormously important.

I guess I will always be a little paranoid about the cancer returning.  So, I want to stay eternally vigilant and above all, stay proactive in my healing and prevention by making sure I have my regular checkups.  I highly recommend exercising.  I walk every day and it has helped me recover.  Whenever possible and practical, I park a little farther from the store and I use the stairs.  

What would I prefer?  Like everyone, I would prefer a normal, healthy digestive system.  But that will never be again.  The colostomy saved my life.  I think of the bag as an artificial rectum and the clamp that holds it shut as an artificial sphincter muscle.  I'm very active and have started dancing lessons recently (I'm going to master the "West Coast Swing").  Life is very good and it feels good to wake up every day.

Join an ostomy support group and attend the meetings.  We have one here in Charlotte that meets once every other month.  The fellowship and the education are priceless.  Join and participate in online groups, too.  There are a lot of us out here.

The very best of luck to any of you facing this procedure.   Let us hear from you about your experience.  We can all share advice and comfort and hope with each other.

Yours in healing,

Billy H.

Charlotte, NC

 

Thank you so much for your complete and honest picture of life after colostomy. I am halfway thru my radiation/chemo stint, will have surgery 4-6 weeks after that. I'm told that my colostomy should be only temporary-my tumor ia high enough that they can save the anal sphincter,etc., but now, after the story of your friend, I want to make sure of that. I'd rather have the bag than be incontinent for the rest of my like(I'm only 47). I'm so glad you are doing so well-wish you continued health and success in staying that way!

 

A couple of questions.   Where did you have your surgery? At all of the appts the Dr's have never mentioned 5 inches only 3/4 of an inch from something so I guess thats on the top of the list to ask about, pre-radiation and chemo they said 90% chance that they wont be able to save it.  Your friend that did not get the colostomy, has he had any reoccurrance and what stage were the 2 of you.  The odds for erectal dysfunction are horrible, we have been told so far that its a rare side effect of surgery, my hubby is 32 and neither the incontinence nor the dysfunction are great options.  Can your friend not go back and get a colostomy now?  We are torn on what to do.  

 

Thanks.

Melanie 

 

On 4/1/2007 Bmxspeedqueen wrote:

 

A couple of questions.   Where did you have your surgery? At all of the appts the Dr's have never mentioned 5 inches only 3/4 of an inch from something so I guess thats on the top of the list to ask about, pre-radiation and chemo they said 90% chance that they wont be able to save it.  Your friend that did not get the colostomy, has he had any reoccurrance and what stage were the 2 of you.  The odds for erectal dysfunction are horrible, we have been told so far that its a rare side effect of surgery, my hubby is 32 and neither the incontinence nor the dysfunction are great options.  Can your friend not go back and get a colostomy now?  We are torn on what to do.  

 

Thanks.

Melanie 

 

I hope I didn't scare you off from the surgery.  I was operated on at the VA hospital in Durham, NC.  The U.S. government has a contract with Duke University Medical Center and School of Medicine which is directly across the street from the VA.  All the doctors at the Durham VA are Duke doctors, so I believe I got the very best of medical treatment, especially when it comes to cutting edge cancer technology. 

My tumor was about 2 1/2 - 3 inches from my anus.  The Duke doctors told me that they would not be able to save my anus because they would not operate without removing the margin of safety they have set as a standard.  I contacted my private, second-opinion colorectal doctor in Charlotte and he concurred.  Perhaps your surgeons can save your husband's rectum and anus.  I certainly hope so.

The erectile dysfunction (ED) seems to be common in this operation, despite what some in the medical profession say.  I have been in personal contact with six or seven men who have had colostomies and every one of us has ED.  Two of the men have already had penile implants.  I know it's a terrible consequence.  And again, perhaps your husband's surgeons will be able to remove the tumor and prevent the dysfunction. 

This type of dysfunction seems to be more prevalent in men undergoing prostate surgery and there are websites devoted to prostate related ED.  However, there are few, if any, websites devoted to ED among colostomy patients.

My fellow rectal cancer survivor you mentioned does have the option of having a permanent colostomy.  His surgery was over three years ago and his sphincter muscle has refused to heal.  He has said he wants to wait a while longer before he makes the radical decision to have a colostomy.

After our surgeries, pathology determined that both of us had stage one tumors, despite their size.  So far, there is no indication that the cancer has returned.  There will always be the possibility that it will, though.

Perhaps what is so frightening and shocking to us is that this whole cancer thing is so much more serious and ominous than we ever imagined.  It involves life changes that are many times more radical than we ever thought we would have to face in our lives.  After all, during my entire life, every illness I ever had eventually healed and I went on about my business.  Not so with cancer.  Every one of us loses some important part of ourselves when we develop cancer.  The fortunate among us can eventually reclaim most, if not all of what we lost or at least learn to adapt to our new life styles without it and go on.   

When I go to the VA hospital in Durham for my checkups, I see dozens of men, some of them twenty years younger than me, in wheel chairs.  One or both of their legs have been amputated because of diabetes.  They will eventually lose their arms, too, if they don't die first.  The sight inspires me to exercise and eat healthier.

I'm not trying to sound sappy like Pollyanna, but there are worse things that could have happened to me.  I'm convinced my ED will be healed someday.  I'm already about 60% there (I know that sounds cryptic, but I have no other way to describe my progress).  My colostomy is not that bad and I say that in all sincerity.  During large portions of time during the day, I even forget I have one.  My main fear is more social than anything else:  I have no control when I might pass gas and I'm afraid I might make a rude noise during a wedding or a funeral or some other solemn occasion (I'll probably look accusingly at the person sitting next to me).

When I first learned I had cancer, I felt like I was looking straight in the huge, gaping mouth of Tyrannosaurus Rex.  As I settled down and began doing what I needed to do to try and beat it, the doctors had a colonoscopy done to determine the size of the tumor.  I was awake during the process and I saw the hideous thing on the monitor - an ugly, irregular mass of tissue, oozing blood.  I had the nurse take a digital photo of the hellish thing.  I pinned it to my office wall over my computer monitor and then I pinned photos of every single person I loved and who I knew loved me around it.  It didn't look so frightening after that.  I have hope and I hope you will stay hopeful, too.   

Billy H. 

 

Thank you so much for sharing your story.  I think the biggest fear is the unknown.  A lot of people are dealing with colostomies and too embarrased to talk about it. 

You are a hero and a survivor.  When I first found out I had Stage IV cc with mets to the liver, more people were concerned that I would have to have a colostomy, than the fact that I would be lucky to be alive.  However, my cancer was further up my colon so I never needed a colostomy. 

Thank you for sharing and demystifiying the procedure.

 

 

Hi,  I know you posted a while ago but thought perhaps you still come on here.  I was wondering why did you spend 7 days in ICU?  Usually you go right to the floor after the surgery for 6 to 11 days.  Unfortunately,  I'm going to have to have a permanent colostomy also but I'd rather have that than have to be close to a bathroom at all times.  I also researched irrigating your colostomy after your given the O.K. to do so by your doctor.  When you irrigate your colostomy will not drain constantly so you don't worry about the smell and, you only have to wear a small cap or bag.  A good site to learn about colostomys or any type of ostomy is www.ostomyland.com  I know it sounds like some kind of an amusement park doesn't it.  Your post was very informative and sent me looking for more answers. 

I hope your well,

Terry