Whatever you may be going through, I’ve been there too. Living with a colostomy is hard, but then, it's only hard in the beginning.
It did not really take me that long to learn how to cope with wearing colostomy bags. I remember when I first walked out through the hospital doors that cold winter evening after spending weeks there and undergoing two major operations. On my way out, I think I felt a little more confident about managing my stoma.
The initial after-surgery shock soon wore off and with acceptance and adaption to my new condition, I had decided to quickly get over it and learn to live with a colostomy. After that long four-week stay, I had learned how to wear, take care of, and fix, drain or change colostomy bags.
But when I got back home, I lost some of that confidence I had built up. There were no nurses around to help, pamper, and take care of me. There were no more confidence-building pep talks about how easy it is to live with and manage a colostomy.
Managing My Stoma - The First Few Weeks at Home
I had expected the emotional stress because I had been prepared for what to expect and apparently, this feeling is a normal post-surgery mood. All I thought about was my stoma and how my lifestyle may be altered because of my colostomy. It took a few weeks to totally adapt to the life of living with a stoma and with the benefit of hindsight; it truly was a passing phase.
I found myself learning more about my condition by doing extensive research on how life is like living with a colostomy. And as I discovered better and more efficient ways to manage my myself, I knew I was now in full control and able to tackle any unexpected situation.
But then, there were quite a few unanticipated circumstances now and then which ranged from colostomy bag ballooning, caused by the consumption of certain diets to pancaking and bag-blowouts.
1. Eating and General Diet
I barely ate any food, hoping that eating much less will ensure the stoma bag is filled with as little waste as is possible, but that wasn’t so wise because I had to eat well. I was just out of the hospital and needed to build up my body mass, strength and stamina plus I needed to put on some weight. I had lost about 10 kilos.
I bought a Vitamix food blender and ate mostly blended foods for breakfast and dinner which consisted of fruits, vegetables, and nut mixes. But I soon stuck to a simple diet eating most foods I love but in moderation. I was bent on ensuring that waste was expelled with ease and at a reduced amount.
I had to modify the way I dressed and that certainly bothered me a lot. I stored away my tight-fitting clothes (a body-con outfit fan) and opted for looser fitting apparel, especially those that are a bit loose around the waist.
Trousers, shorts, and casual pants posed a problem initially, but I soon found that low-rise pants worked better for me as it allowed my colostomy bag to hang out unhindered by waistbands.
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I love Palazzo pants, and these were my favourites for that first couple of weeks. They were loose and free and looked good on too. I brought out my loose tops and also bought some new fashionable loosely fitting blouses, designer T-shirts which I sometimes tied into a knot at one side and bust-fitting but flared short jackets.
I also invested in long scarves and chic fashionable wraps. I’d drape them over one shoulder and casually throw it over the other in that chic lady-like way, all in an effort to conceal my colostomy bag, in the event that it balloons. Shirt dresses and shifts worked beautifully and concealed the fact that you have a stoma bag on.
I couldn’t sleep soundly the first few days because there was the horrible thought that lying on my stomach might burst my bag and splatter its contents all over my sheets. I had to learn to sleep on my side and I eventually inculcated that way of sleeping within a few days of my arrival at home.
At the hospital, it was a different 'kettle of fish'. There were always nurses around to help you out of nasty situations that may occur.
When you are in bed with your partner, the last thing you wish to happen is a burst or leaking bag whilst being fast asleep.
4. Partying and Socialising
My first outing was funny enough dinner at a restaurant and this was just a couple of weeks out of the hospital. The food looked really good, but I barely ate for the fear of those ‘farty gas’ sounds that always came on unexpectedly.
I feared my colostomy bag may fill up rapidly (this always happens after a meal), I may have some leakage. It wasn’t an easy outing at the time and although I was all smiles and cheery, 99% of the invited guests never knew a thing about my condition.
My next outing was a party, and I mean a disco party where we practically danced all night long. I was a bit apprehensive about attending, but I'm quite brave and strong enough to face major challenges, so, I decided to face this one too.
I was dressed up to the 'T' and had a wonderful time. For a few hours, I forgot all about my stoma and colostomy bag, but I had ‘armed’ myself with two extra bags in case I had to have a change sometime through the night. I never needed to use them.
I had to travel by air six weeks after I left the hospital and I definitely wasn't looking forward to that. It was a six-hour flight and I was going from a very cold climate into a very hot and humid one. From the time I left home to the time I got to my destination, I'd be spending ten hours in airports and in the air. That thought made me panic briefly, but it had no choice.
I had more than enough colostomy supplies in my hand luggage, including a small can of deodorant, wipes, and ten colostomy bags (yes, 10!), all neatly packed in a zippered designer colostomy supplies bag. I had to pre-cut the holes on the bag’s face-plate because scissors were not allowed in any hand luggage.
Any ostomy patient will know what it’s like changing a colostomy pouch in any public toilet. The odour spreads the second you pull off the faceplate. But changing or emptying a pouch in an aeroplane's toilet is something else entirely. The odour was so consuming, and the deodorants couldn't hide the smell. I was like, "Oh well, it’s just too bad”. I had to change three times before I got to my destination.
One thing was for sure though; I was getting more adept at this and spent less time than I would have if I had to use a toilet the normal way.
Major Challenges I Faced Wearing Colostomy Bags
The first few days at home. Wearing, changing, and managing was a great challenge and it really took some getting used to. Eventually, ‘we’ all got along fine together, colostomy bags, my stoma, and I.
However, there were issues that I encountered, and these issues were accompanied by some worries.
- Knowing the right time to change a colostomy pouch.
- Dealing with the stench every time a bag needs a change or a drain (ostomy deodorants never worked well for me).
- Worrying about colostomy bag ballooning or leaks.
- Wondering if a blowout is imminent!
- Worrying about running out of supplies. It is a major disaster if you run out of stoma bags.
- Bleeding around the stoma outer ring.
- Loud embarrassing sounds of gas emanating from the stoma into the bag. I call it farting-into-the-bag.
- How to dispose of used ostomy bags. Because of this, I preferred to wear the drainable systems.
- The horrible feeling of self-consciousness that never seems to go away.
The first week I was 'in and out' of the bathroom, checking, sniffing, worrying about the fluid scanty stool. I soon discovered that bags I can drain worked best for me. The ease of draining loose stool from pouches through the drainage opening was super.
The Velcro tape tabs were always strong and secure, contrary to my initial thoughts that they may pop open and unravel. Gladly, this never happened because the ends are folded over a couple of times before being secured with the Velcro tape.
How to Change a Colostomy Bag
How to Empty an Ostomy Bag
Back to My Regular Lifestyle, Even with my Colostomy
After fully accepting my condition mentally, I must say that I found that it beats having to use the toilet the normal way. There were a few times when the urge to go the normal way occurred and at first it was alarming. After talking to my doctor, I was assured that it was normal. Because of the accumulation of mucus in the rectum despite its being idle, the urge to expel something occurs occasionally.
My doctor advised I try to expel the mucus build-up by sitting on the toilet and bearing down lightly and that if something doesn't pop out, I should use a very mild suppository that will aid its expulsion.
In no time, managing my colostomy became second nature. In fact, it gave me a new lease on life. I had come to terms with having a stoma, and my initial reaction and shock after my surgery had been replaced by happier thoughts.
All this while, only a couple of people knew I was walking around with a colostomy bag on. And because I watched what I ate and kept to a simple diet, I hardly experienced constipation, leaks, or blowouts.
In the space of twelve months, I only experienced blowouts about three times.
Ballooning was still a common occurrence and usually happened whenever I consume fizzy or alcoholic drinks like sodas, sparkling wines, or champagne. When this gas build-up occurs, I just sneak into the toilet and let out the gas through the end drain of the drainable colostomy bag and I’m all done in two minutes!
Living and coming to terms with having a colostomy wasn't so bad after all. After the initial three months, I was beginning to enjoy my colostomy bag. I used modern colostomy bags in skin colour, and they looked so cute and neat.
With only 9 months to go before my reverse colostomy, I was as happy as can be. And because my husband was my pillar of support, adjusting was easy. When he first saw my colostomy bag pouch attached to my abdomen, guess what he said - "it looks so sexy". I didn't think so then, but who was I to argue?
Intimate Relationships with a Colostomy
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2010 Alobeda
Alobeda (author) from The Global Village on June 25, 2017:
You have the right mindset and this will surely help you heal faster not only physically, but most importantly, emotionally.
I know how you feel as it's been barely a month, but as you rightly said, God has been merciful and given you "another chance at life"
All will be well much sooner than you expect as you continue to look on the bright side.
I wish you all the best and I'm glad to have been a source of inspiration. Blessings.
Maritza on June 25, 2017:
It's been barely a month since I had my surgery and I cry everyday, I'm terrified when the bag leaks because of the incision down my abdomen, I pray for patience and acceptance, I'm still very weak, but I know little by little I will get better and things will be better too. I'm grateful I'm alive since I almost died during surgery, things got complicated, but God in all his mercy gave me another chance at life so I figure this bag shouldn't be anything but a step to a stronger me.
Thank you for sharing your experience, made me have hope and see things from another perspective ❤️
Alobeda (author) from The Global Village on January 13, 2017:
I particularly like your statement . . . "God has been good to me through this"... This, I believe, is part of what changed my life then, and now.
And you are so right. There are worse things happening, every day and everywhere, than wearing a colostomy bag.
It's great to know that you are keeping hope alive and remain happy through all this.
I wish you ALL the best :)
Jennifer Snyder on January 08, 2017:
After an awful bout with diverticulitis, in and out of the hospital trying to heal my colon with antibiotics, 3 different hospital stays in a month, I now have a colostomy bag too. It's been about 2 1/2 months now and a life changer for me. Mine however is reversible in a few months. I have many poop stories, many days of crying, depression the whole nine yards. But not anymore, God has been good to me through this. I went back to work post op 3 weeks later, am healing really well and have an amazing doctor. I work for a doctor and share an office with my surgeon too. So he's just a few steps away from me 5 days a week. I have an amazing support system-my fiancé has been my rock throughout this journey. I always say it could be worse, because it could be. I see "worse" every single day where I work. Having this bag attached is difficult to say the least, but I have hope that all will go accordingly and soon I'll be free of this bag. I find humor somehow every single day about the bag, I have to , otherwise I'd be depressed but instead I'm choosing life and laughter and hope.
Alobeda (author) from The Global Village on February 08, 2016:
Thank you David
david on February 08, 2016: