Surviving Gallbladder Surgery Complications: My Journey with a Colostomy Bag

Sick for well over a year after gallbladder surgery. I told my doctor the few times that I visited him, and he suggested that I eliminate things from my diet like dairy, fruit, and maybe even gluten. Even after making those changes, my health just kept getting worse. In July/2016, I again returned to my doctor because now I had developed an intermittent fever and night sweats. He sent me for a CT scan. The results were so bad that the radiologist called my doctor personally, and my doctor called me personally to tell me to go to the emergency room, do not pass go, do not collect $200... this was a life-threatening situation, and I could die!!! Emergency surgery on the night of July 21st... I woke up in ICU... still intubated... mittens on my hands so that I couldn't take the tube out... a wound vac on the incision... AND THIS BAG ON MY ABDOMEN TO COLLECT WASTE!!! The little bit that I remember about talking with the surgeon after surgery (I was still pretty drugged) was that I had Diverticulitis with an abscess and the bag was probably permanent. 3 days in ICU... 7 more days in a regular room... no eating until day 8 and then only a liquid diet. 2 days after returning home, I had a follow-up visit with my surgeon, and he told me again that the bag was probably permanent but that he would re-evaluate in 6 months. He told me that the small intestine had poked a hole through the large intestine, there was so much infection that he had to remove a lot of my colon, and he wasn't sure that he could stretch the colon enough to reattach the two ends. Well, I came home pretty bummed... damn wound vac hanging off my body... no strength in my legs from being in bed for 10 days... AND THIS STUPID BAG HANGING OFF MY BODY. Then the visit with the wound care doctor, and he told me that most patients with my issues had the wound vac for 3-4 months. Several days of praying, and I finally told God that I was putting myself in his hands and whatever that he decided my life should be... so be it... but if he could, PLEASE, at least, heal the incision sooner than 3-4 months so that I could at least get rid of the wound vac and only have to deal with the colostomy. Guess he heard me because in week 8, I was healed, and the wound vac came off for good!!! The first couple of times that I changed the bag myself was a disaster... one day I sat waiting for the home health nurse all day (she had an emergency and couldn't get to me until late in the afternoon) with a towel wrapped around the bag while it leaked all over the place. She cleaned me up and changed it for me, and that is when I decided that I couldn't rely on others forever and HAD TO figure this thing out. I watched several videos on the internet and listened to my home health nurse and figured out that what I was doing wrong was that I wasn't drying the skin before applying the wafer. Once I figured that out and started using my hairdryer to dry the skin... NO MORE LEAKS!!! I have put myself on a schedule of changing it every 4-5 days, although I could probably go longer. Life for me was pretty rough during the month of August... figuring out how to deal with all of this, my 17yo cat died 3 days after I returned home from the hospital, I developed blood clots in my leg from the surgery putting me on blood thinners probably for the rest of my life, my AC died and cost me a bundle to fix, my TV died, and I returned to work part-time 3 weeks out of surgery. But I began doing so much better in September... incision healed so no more wound vac, no more wound care doctor visits, no more home health visits. The swelling in my leg (from the blood clots) is going down, I'm walking better, even climbed the stairs at work a couple of times... took me FOREVER, but I did it. I'm now able to work full-time again and clean my house, which is something that I didn't have the strength to do. If I have to live with this bag for the rest of my life, I can do it.

You sure can. What an inspiring story. I love how you turned your life over to the God of your understanding. Wow, thanks for sharing your life with me. I would love to read more. Thanks, God bless. This is why it is so important to post experiences - you never know who you will be helping. Reading your story picked up my spirit.

You got it, lady. Same with me. I call it a stupid silly bag, but it beats being dead. Like you, I have no choice but to have it. Still, I've got it better than a lot of people. I do know two things for sure: yes, there is a God, and the power of prayer works. In the last four years, I found out I had M.S., then this icky cancer thing—bag, chemo, radiation, etc., etc. You know the deal: surgery, doctors, more tests, more chemo, and on and on. But He must have a plan for us, or we would not be here talking. Don't try to figure why. I've got it made compared to some. Let go and let God. It's a simple plan for complicated people like us.

Dear Texasbbw, Welcome to MAO. Thank you very much for sharing your story with us. It is an inspirational message of hope. Life really does present interesting and challenging situations. I am glad that you went to the ER in time to recognize a very serious medical situation. I have a permanent ostomy as a result of severe, unresolved UC. Without my surgery, I would have most likely died. I will be celebrating 4 years in March 2017. Take care and thank you again for your message. Sincerely, LH

Hi texasbbw, the first thing I would like to say is that I'm glad you're doing better. I'm a big believer in the power of prayer. I too went through a similar situation. I went to the ER with back pain, and they found abscesses on my colon. Then came surgery; I woke up on a respirator, in the ICU for a week, then remained there for 2 more weeks, then went to rehabilitation for a month. It was also a nursing home; I cried for 3 days. I've never felt so alone in my life. I'm 2 and a half hours from home. We couldn't afford for my hubby to make daily trips, only once a week. I finally opened my mouth and talked to everyone, even played BINGO with them, lol! You see, I'm a plus-size beauty too, so they couldn't find anywhere closer. I guess I'm special, hehe! But I started noticing poop coming out the front, OMG!!! I had to heal from the first surgery, I'm talking from June to October. Because I had a hysterectomy, there was no wall for support for the colon; it tore. Then I was bagged, yuck! It's supposed to be temporary. The doctor who did the surgery left the group, new doctor. It took over a year to heal. I feel like I'm butt crack all over, hehe! The new doctor wants me to lose weight before he'll redo it. I'm still temporary; I refuse to have surgery, waking up on a respirator scared me, plus the new doctor is not happy with it. Plus, it's hard to lose the weight. I'm very thankful for my life and making the most out of it. God is good. I really would like to hear back from you. :) Chat soon, Alice n wonder!!

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Texasbbw. This past September was 26 years since my (cancer) surgery and life with an ostomy is much better than the alternative. Or, as my GP said the night before my surgery, "... on which side of the grass do you prefer being?".

Hello Texasbbw. Thank you so much for sharing your story in such vivid detail and, like so many others I like an ending that is full of hope and a vision for the future. You are an inspiration to all those others who might be going through similar experiences or may be facing such things in their future. I would also like to thank all those people who reply to these sorts of posts, because without them sharing their own experiences these things can sometimes seem like a one-off, unusual event. Whereas in real life, many people suffer the indignities of illness and setbacks until they take things into their own hands and become determined to manage their lives for themselves. I haven't got a God myself but I am a firm believer that if something works for you, then it, or you, should not be criticised if you keep using it.
I look forward to reading more of your posts.
Best wishes
Bill

Oh my gosh, what a year you've had!! What an inspiration you are to anyone who has woken up with a bag ... not only that, it's permanent. Diverticulitis is such a nasty thing to deal with. It can be fatal if not dealt with immediately. I too use a hair dryer to get my skin nice and dry before I apply my wafer. I can go anywhere from 4-10 days without changing. I usually change every Sunday as that is a day I know I have at home and I can take my time getting it done right. For the past few weekends anyway. Right now, I'm on day ten and I'm going to wish I'd changed it on Sunday like usual. I'm a cancer survivor, and that's how I earned my colostomy. I did have mine stretched with the first surgery and I lived in hell (and the bathroom a lot) for six long years. I then had a recurrence and went back to surgery. My surgeon told me that she'd most likely have to give me a colostomy and I've really loved it ever since. I can actually travel now. I can do things I hadn't been able to do in several years. :)

I want to thank everyone for their encouraging words. It's so good to be in a community (MAO) of people just like me ... living fairly normal lives with this bag. For the last year, I hardly ate anything (actually lost 145 pounds because of it) because EVERYTHING made me sick, so I am actually loving the fact that I can eat almost anything that I want, although I am avoiding fiber, raw vegetables, fruit with seeds, popcorn, nuts, salad, and cabbage because I am only 11 weeks out of surgery. Maybe someday I will be able to eat those things also. My only problem is that I WON'T gain back this weight .. LOL ... so I watch my calorie count on a daily basis.

As bad as this situation was (the Diverticulitis with an abscess) ... I guess I'm thankful that it wasn't cancer and I didn't have to deal with that on top of everything else I am dealing with. Also, really glad that I didn't die.

Living with "the bag" is better than the alternative.

Hello. I wanted to let you know about the Fort Worth Ostomy Support Association group that meets monthly at the University of North Texas Health Science Center in Fort Worth. This is the closest support group in your area. The meetings are the 3rd Sunday of each month at 2 p.m. We meet in the main building at Camp Bowie and Montgomery. Enter the parking lot on the east side at Clifton Street. There are many people who can provide support. I have a urostomy, so my assistance would be limited. I can give you some numbers if you like. Just send me a private message.

Hi, Texas! I loved your entry. Tappy tappy tappy on the keys and you made it so clear how you felt and what you went through! Thank you for helping us all by joining in with your feelings!

I was a surprise cancer colostomy. Going into surgery, I told hubby--"if I don't get a colostomy, tell me the second I wake up!" I woke up from surgery, he was holding my hand, I opened my eyes and he smiled. So then I knew. Peeked under the covers. Yup, there was the bag.

I change every day. Take it off, shower, dry off well, put on a new bag. Try it, you might like it!

Hey NDY, do you use a 2-piece? I ask because I thought changing a 1-piece every day might be rough on the skin because of the adhesive. Maybe I would just be wrong again.
Stay well,
Mike

God bless you. You lived and endured! Every morning you wake up is a gift and the rest is just gravy. Hang in there. I'm new to this too (three weeks in) and it's quite an adjustment. The awesome thing is that God gave us laughter to combat sadness. I use mine as a shield.

Hear hear! I think God's sense of humor is amazing, and I think it's only proper to try to follow such great guidance.

ImacG5, I do use a one-piece. I tried what I think was a "two-piece" once but it was really messy to empty so I just ripped it off and went back to the one-piece. Easier to pull off, yeah?
The first few months I could not change daily, it was too hard on the skin. I would change about once every three days. And usually start leaking which was my changing queue (what did I know?). Then I started changing regularly every two days. Still a little smelly by end of day 2, and my bag would start to make rustling noises, too. But my skin and routine were adjusting nicely, so now I'm a "daily" girl.

Sorry, guys, but I'm going to get into female graphics here for Texas, please turn your heads.

Texasbbw, bags are like feminine hygiene supplies. Some people change a tampon every time they pee, some wait until they feel heavy with it, and pads are often used the same ways. With your bag, you'll probably equalize to whatever style you used with handling periods. And the learning curve may be similar.

OK guys, you can start reading again.

When I was a schoolboy, my Jesuit teachers advanced an irrefutable argument establishing for all times that God had to have a sense of humor. "Who invented the duck?" QED.
PB

Texasbbw... colostomy since 2014, I still can't seem to get a straight answer on what a "wafer" is. Help?
Primeboy- Ever learned about the corona vs. cornea? So Moses comes down from the mountain with a "corona" (halo) but it gets misconstrued into "cornea" (horns) for about 1000 years, and even Michelangelo has a sculpture with Moses showing his cornea. And so came the Jewish "Horn" legend. The other theory is Hebrew "keren" means either "radiated" or "grew horns."
It's never been really clear why Moses never personally got to the Promised Land, but sticking someone with the horn thing, especially in a way that would be depicted by an artist of legendary proportions, was, in retrospect, a pretty funny way of showing someone that they screwed up. Total proof that God has a sense of humor.
But let's not forget the "Peter is a Rock" bit... so Peter goes out into the Sea of Galilee and sinks like a rock! Hahaha, God's funny as heck.

Hey NDY, the wafer is the piece, usually square with a hole in the center to fit the stoma through. It has the adhesive so it sticks to your belly.
Mike

iMacG5. . . So my Hollister 8081, which I guess is a one-piece appliance. . . I cut a hole in it to fit around my stoma, peel off the backing plastic to reveal a sticky glue to press and stick to my tummy (the hole I cut allows my stoma full rights and sole access to the bag).
The gluey bit that holds the bag to my tummy, (that is band-aidy on the outside). . . is that a "wafer" even if the bag is already and permanently/factory sealed attached?

Yes, the sticky part is the wafer regardless of whether it is a one or two-piece system.

Or, it might be referred to as a "skin barrier." If we say we need to use a skin barrier in addition to our appliance (in addition to the wafer), that could be paste, Cavilon, or Smith & Nephew's barrier film, or Eakin or Hollister seals, and maybe some other skin protectors.
Mike

Now, did I further confuse you? I hope not, and I apologize if I did.
Mike

Yes, you're right, Imac, that is confusing. Forget the apologies, we all know you're busting your butt to help us all. Now I'll ask you to explain Skin Barrier vs. Wafer.

My next question... What's with that "wafer" term? Why not just "Adhesive Part?" I mean, from the term "wafer," how could any newbie possibly figure out that meaning, and so why is that even a part of our vocabulary? If we said, "sticky band-aid part," they would have understood it...
Seems to me that "wafer" is some kind of outdated ostomyspeak. Can we agree to update to "adhesive part" or something? I mean... "wafer"?! How is any newbie supposed to know what that means? It sounds like something from a patisserie. Crunchy yummy breakfast thing. Wafer.
Anyone out there with a clue to where this non-descriptive vocabulary is coming from? Or how to better phrase it to clarify for readers?

We all know that somewhere, out there, is a colostomy fellow who's dying to delve into and divulge our history... We hope that they'll speak soon.