Colostomy and Colostomy Bag: Our Experience

You can still see where the stoma hole was - 24 years after colostomy surgery. The midline incision divides the tummy in half, too.
You can still see where the stoma hole was - 24 years after colostomy surgery. The midline incision divides the tummy in half, too. | Source

Colostomy from Diverticulitis

In October of 1988, my husband had to have a colostomy. We had just been married two months earlier. Johnny was forty at the time, and I was twenty-nine. He began having severe abdominal pain, nausea, and fever. I finally made him go to our regular physician, who thought hubby had a stomach virus. Johnny soon got worse, however, and I wanted him to go to the emergency room. He refused, and he even tried to go to work. When he turned a sickly yellow, I demanded that he go to the ER. Little did he know it, but he had a perforated bowel from a diverticulitis attack. He had never been diagnosed with diverticulosis and didn’t even know he had the condition.

Hubby's colostomy surgery took over four hours.
Hubby's colostomy surgery took over four hours. | Source

What is Colostomy

Colostomy is surgery that addresses a damaged bowel. The end of the large intestine is attached to the abdomen, where a hole called a stoma is made. Fecal material, mucous, and gas pass through the stoma. The colostomy can be permanent or reversible. In Johnny’s case, a section of bowel had to be removed, and the repair needed time to heal. His colostomy was reversed after about four months.

A colostomy might be performed because of colon cancer, inflammatory bowel disease, an abscess, pelvic tumors, or a bowel obstruction. The procedure might also have to be performed to repair a bowel damaged by injury. In my husband’s case, a ruptured diverticulum was responsible. When the diverticulum perforated, contents of the colon spilled into the peritoneum, causing an infection called peritonitis.

What is a Colostomy?

Colostomy Surgery

Johnny’s surgery wasn’t a normal colostomy surgery. Tests revealed that he had “free air,” but the doctors didn’t know what had ruptured. When they met with me, they told me the least dangerous rupture would be a perforated ulcer, followed by a ruptured appendix. They said the worst thing would be to discover a perforated bowel. His peritonitis was so bad by the time he went to the hospital that his chances of survival were 50-50. I was devastated.

The colostomy surgery actually began as exploratory surgery, since the doctors didn’t know exactly what was wrong. The surgeon began cutting at the upper abdomen, hoping to find a perforated ulcer. When he didn’t find that, he examined the appendix, and when that was okay, too, he had to extend the incision. Then he found the small tear in the colon, where a diverticulum had ruptured.

Four inches of Johnny’s colon had to be removed, and the end section was closed. They had to do a lot of flushing of the area, too. They made a “hole” in his lower belly, called a stoma. The bowel was rerouted from the stomach to the stoma so that from that point on, the contents of the bowel would empty via the stoma. The colostomy surgery took over four hours to perform.

When Johnny woke up and the anesthesia wore off, he was in a lot of pain, and he was shocked to discover that he had a colostomy bag adhering to his belly. The colostomy surgery was explained to him, and he felt like it was the end of the world. He’s always been a very proud and private man, and he just couldn’t bear the thought of having to wear the bag. On several occasions immediately following the sugery, he told me that I should have just let him die instead of taking him to the emergency room. The one glimmer of hope that he had was that the colostomy was probably reversible.

Colostomy Surgery

Colostomy Bag

The colostomy bag was a plastic bag that was worn on his lower abdomen, on the left side. It hung straight down. The opening attached to the stoma. Instead of “pooping” in the normal manner, the poop would come out of the abdominal wall and into the colostomy bag. The bag had to be changed on a daily basis. We were lucky here. Some people have to wash and reuse colostomy bags, but our two insurance companies paid for a new bag every day.

The colostomy bags were stuck to the stoma with a sort of waxy glue. Before applying the bag, we had to make sure the area around the stoma was clean, and we also had to shave the hair in the region. Hubby is pretty hairy, so I ended up shaving him almost every day. The shaving made the area easier to clean, and it also helped the colostomy bag adhere better. When it was time to remove a bag, Johnny was glad not to have his belly hair ripped out by the roots, too.

At first, Johnny didn’t want to go out in public because he was sure everyone would be able to see the bulge from the colostomy bag. Actually, the pouch wasn’t very visible if he was wearing a loose-fitting shirt, so I was finally able to get him out some. In fact, just ten days after his surgery, we attended a big Halloween party, and Johnny went as Eddie Munster. He won first prize in the costume contest!

We never had trouble with Johnny’s colostomy bags leaking – liquids or smell. I’ve read that sometimes overweight individuals have more problems. Johnny was a little overweight, but his lower abdomen was flat. His unimpressive “beer belly” was up higher, so it didn’t present a problem with the fitting of the colostomy bag.

Every day, when we put a new bag in place, I’d take the old bag and place it in a large Ziploc bag and dispose of it. The sealed Ziploc prevented any odors from escaping.

I’m not saying that living with a colostomy bag is a picnic – it wasn’t. Having to wear the bag was embarrassing for Johnny, as he had no control over gas and bowel movements. Changing the bag wasn’t pleasant. The smell was terrible. We got used to it, however, and it became just a normal part of everyday life.

Colostomy Bag: How-To

Stoma Care

Stoma care was tough for me at first. As a matter of fact, for the first few days, I couldn’t deal with it. Thankfully, my mother was a registered nurse, so did the stoma care for the first few days after Johnny came home from the hospital. She had to use large swabs to clean the stoma, which was like a gaping wound. Johnny used to tell people he’d been in a terrible bar fight, and that his long incision was a knife wound and the stoma was a gunshot wound.

After a couple of weeks or so, Johnny felt well enough to do his own stoma care. He usually cleaned the area when he took a shower. We also had to examine the stoma on a regular basis, to look for problems. The stoma is supposed to be red or pink, so we were warned about watching for a pale-colored stoma or a bluish hue. We also had to be on the lookout for swelling and bleeding, as well as skin irritation around the stoma.

I guess this is a good place to discuss the stoma hole after the reversal. I was shocked to find out that the hole wasn’t stitched up or stapled. I mean, there was a gaping hole in my hubby’s belly! The doctors assured us that the opening would close with time, and it did.

Stoma Care:

Colostomy Complications

There are several colostomy complications that can occur. Of course, general anesthesia always has its own dangers, which are the same for colostomies. The most common colostomy complications are hernias, and Johnny had this problem. The stoma hole weakens the abdominal wall, making it easier for hernias to develop. Another possible complication is bowel obstruction from scar tissue, which I’ll discuss further down in this article.

Serious infections can also occur after a colostomy. If there’s any leakage of fecal matter into the perineum, peritonitis could be caused. The stoma itself can also become infected, and the skin around it can become irritated because of the colostomy bag.

Mental stress can’t be overlooked, either. As I stated, Johnny was pretty depressed immediately after his colostomy. It took him time to adjust to his new lifestyle. It didn’t take him very long, however, to accept his condition and regain his sense of humor. Of course, it helped that he was pretty sure his colostomy would be reversed.

Bowel Resection:

Bowel Resection

After the bowel repair had time to rest and heal, Johnny’s colostomy was reversed. He was really excited to have this bowel resection procedure done so that he could feel normal again. If I remember correctly, the surgery took about two or three hours. When he recovered from general anesthesia, the first thing he did was to find out if the colostomy bag was gone, and he was relieved to find it missing.

The strange thing was that he actually had more pain from the reversal than he did from the colostomy surgery. They gave him a morphine pump so that he could self-administer the pain medication, and he kept that plunger down all the time. In fact, he’d fall asleep with his thumb on the trigger, so to speak. The doctor told me that this was actually pretty common – patients having more pain from the reversal. His theory was that most patients needing a colostomy were already in so much pain before the surgery, the comparison wasn’t too bad. On the other hand, going from completely pain free to moderate to severe pain in just a couple of hours was a little tougher to deal with. Makes sense to me.

Scar Tissue after Surgery:

Scar Tissue After Surgery

As it turned out, Johnny had scar tissue after surgery, called adhesions. Just a year or so after his colostomy surgery, he began having severe abdominal pain and went several days without a bowel movement. This was after his colostomy was reversed, by the way. I took him to the hospital, and a complete bowel obstruction was discovered. His stomach was pumped, and he had to have another surgery.

Scar tissue after surgery – the colostomy and/or the reversal – had grown around his intestine and had completely closed it. Obviously, he needed surgery to remove the scar tissue. This time, he had to remain in the hospital for just a few days, and it didn’t take him long to return to normal.

The scar that runs from "stem to stern" is barely visible now.
The scar that runs from "stem to stern" is barely visible now. | Source

Scar Tissue Removal Surgery

Johnny had to have scar tissue removal surgery on more than one occasion. His surgeon and doctors described scar tissue removal surgery as a vicious cycle. Every time the scar tissue was surgically removed, more scar tissue would form. When the unwanted tissue was interfering with normal and necessary bodily functions, however, there really was no choice but to undergo surgery.

Johnny continued to have problems with scar tissue for several years. It became an almost regular cycle. The scar tissue would grow around his colon, and it would have to be removed. He’d get better for months or even years, then he’d have to have another procedure. His last scar tissue removal surgery was in 1998, ten years after his colostomy. Since then, he’s had no more problems at all with diverticulitis, diverticulosis, or anything else having to do with his intestines. He never has regained his normal weight, however, which is okay. Ah, a colostomy story with a happy ending!

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Comments 15 comments

billybuc profile image

billybuc 4 years ago from Olympia, WA

Thank you for this enlightening and extremely important hub. I hope others read it so they can be aware of this. My blessings to you and your husband.


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California

Habee- I can really relate to this story. I had ulcerative colitis for years. I was on escalating doses of prednisone, then infusions of stronger immunosuppressant medications. I begged for surgery, but my surgeon wisely made me wait for the right time, after a remission.

Anyway, I had my entire colon removed and was given an ileostomy. The far end of my small intestine was redesigned and the idea was that the ileostomy would be reversed after a few months. I knew I was getting the ileostomy and still didn't deal with it well.

I had the ileostomy for only one month, when I asked my surgeon to please test me to see if I was ready for the reversal. I was and had it done.

That one month with the ileostomy was the longest month of my life. I am a "strong" person with a no-nonsense, no dwelling on problems kind of person and a medical background. I had a really hard time with the ileostomy. I knew a lot of people who had them, some longer than me, some permanently. No one besides the doctors and nurses in the hospital ever saw my ileostomy. In fact, after the first day postop, I wouldn't even let the nurses help me with changing it- I sucked up the pain and just did it, because I was in some sort of denial about it being there. It is the most emotional, least rational I've ever been.

Anyway, I can relate to the psychological challenge. I did not adjust quickly (very out of character for me), although I know I would have if I had it longer. I was lucky to have it reversed in record time (pretty much). I had two partial obstructions afterwards which I treated at home with liquids and walking, and luckily never had to go back for adhesions or obstructions, although it's a lifelong risk.

Thank you for sharing your/husband's story. It will really help a lot of people in many ways.


GarnetBird profile image

GarnetBird 4 years ago from Northern California

This is a brave and sensitive Hub about a subject that most people simply cannot handle. My grandmother had one of these after surgery (It was later removed) You are really helping society by exposing the truth and the problems and triumphs of this procedure..


Marcy Goodfleisch profile image

Marcy Goodfleisch 4 years ago from Planet Earth

This information may help far more people than you realize. Too often, we ignore pains in our 'gut,' and they get out of control. I've known people with colostomies and other dramatic surgeries, and they indeed are life-changing. But they're also life-saving. Thanks for sharing this experience with us!


Melissa A Smith profile image

Melissa A Smith 4 years ago from New York

This was so interesting, I never knew about anything like this. Do you have any idea how something like this may be caused? I'm really glad everything turned out OK, looks like a complicated surgery and after effects to say the least.


Paul Edmondson profile image

Paul Edmondson 4 years ago from Burlingame, CA

I really appreciate this Hub. I have a bit of experience with diverticulitis. I'm going to have a little work done on my gut next week and this is the best description I've found on what possibly can happen. I'm feeling good these days, so the part about feeling pain after surgery has prepared me a bit mentally. I too will be happy if I lose a bit of weight and keep it off. Thanks for this.


TurtleDog profile image

TurtleDog 4 years ago

Wow. A great, sobering and informative hub. I went through the colonoscopy process (and lived to write about it ;-) but this is some really detailed info on treatment and how it affects the patient. Thanks so much!


Alexander Mark profile image

Alexander Mark 4 years ago from beautiful, rainy, green Portland, Oregon

On the list with blindness, a colostomy bag is one of my worst fears as far as paranoia of random ailments goes. This shed a little light on the whole matter - very interesting..


Nelle Hoxie 4 years ago

Wow and Double Wow. I had a ruptured colon on November 26 and have had a temporary colostomy since then. My reversal surgery is July 9th. I applaud your husband for leaving the hospital and getting to that Halloween Party. I was in the hospital for almost 3 weeks. It was a good 6 weeks before I felt like going out in public. Not out of embarrassment, I just didn't feel that well.


50 Caliber profile image

50 Caliber 4 years ago from Arizona

Habee, only a pro could present an "I'd rather be dead topic" like this in a fluid flow of getting there, living it and the process experienced getting the blessing of getting a reversal and fighting to a remission, through further surgeries. It was quite educational. As a kid I knew a man who had it done and was quite open to us kids about it and showed it to us and make jokes about it and the big blurps that echoed out of it, letting us know he was farting and could fart in church or anywhere he wanted so it became a laughing matter at many wrong times for us kids and church was the one that got us in trouble cuz 1 laugh created more.

I totally get this is not funny but I've had some surgeries that left things never to be the same and humor has been the cure about it, when it comes to getting children that are curios about everything they see that is odd or different.

I'm happy to hear that he made it all the way back to the ability to fart with flapping butt cheeks and relatively normal life.

I say relatively just due to me having a feeling that he like me has a good sense of humor when showing off our scars to the kids and the boloney we add to the tale.

You educated me on a condition I hope to never experience.

May the Blessings Be,

dusty


Karen Hellier profile image

Karen Hellier 4 years ago from Georgia

My grandmother had to have this. Unfortunately, she had colon cancer and had to have this the last few years of her life. She thought having a colostomy bag was better than dying so she had a good attitude about it. I agree with her and am happy that because of this procedure, she was able to stay with us a few more years.


habee profile image

habee 4 years ago from Georgia Author

Thanks, billybuc. I appreciate that.


habee profile image

habee 4 years ago from Georgia Author

Doc, glad to hear that you're okay now. Thanks for reading!


Jdwrightfam@aol.com 3 years ago

Wow! I was looking through your hubs when I came across this one. My husband had to have an ileostomy after picking up c difficile while in the hospital. He had just had both kidneys removed due to poly-cystic kidney disease. The doctors couldn't figured out why he wasn't improving after the kidney surgery. A young intern decided to do an abdominal scan and discovered his large bowel was about to rupture. They did emergency surgery and removed close to 95% of his large bowel. They told him he would not likely have lived another 24 hours had they not found it when they did.

He was only in his 30's and had to wear the bag for almost a year before the doctors felt he was healed enough to have it reversed. It was one very long year let me tell you!!


Elizabeth 22 months ago

Thank you for this article...I have been so traumatized by my colostomy and surgery..It's been two months...I can't eat...so I've stopped.

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