Back in May, I joined the Colostomy owners club after I was diagnosed with Bowel Cancer. The reasoning behind having a colostomy bag was to avoid any complications whilst having Chemo as quite often, Chemo can cause the bowel to swell and with there already being a large tumour causing me problems, it was too much of a risk to have Chemo without giving me a stoma. Before being told I was going to have a stoma, I had no idea what one was therefore I’ve decided for Colostomy Day 2016 to raise awareness by informing people who like me, didn’t know anything about them and hopefully provide some sort of a guide for people who are due to get them.
I ended up having the Colostomy fitted under emergency on 27th May 2016 as I was rushed in with terrible sickness and stomach pains the day before. I had the surgery keyhole and it took little over an hour and a half, even when they managed to get my tumour out as well. The wounds created (a vertical line across my belly button which was used to fit my stoma and then two small incisions on my right-hand side that were for removing my bowel tumour) were glued with skin glue, a special type of medical adhesive instead of stitched. This glue joins the edges of a wound together while the wound starts to heal underneath, it’s completely waterproof and once the wound is healed, the glue will just fall off naturally. My hospital stay/recovery took 12 days before I was allowed to leave hospital as I had to wait till my stoma had worked enough to ensure that the surgery was a success. The wound took slightly longer however, I can’t remember exactly as it was something that in a way took care of itself. In-depth description of how my surgery went and the aftercare can be found in my previous blog posts from my stay at Whiston Hospital (Unexpected approach, Bruised and sore, False alarm and Finally discharged).
Meeting my stoma nurse
Shortly after my surgery, I met my stoma nurse for the first time who explained very briefly that she’d be showing me how to look after my bag but first, I had to pick what bag I wanted. I was given 3 choices (from left to right): pelican healthcare, coloplast or salts healthcare.
I picked the coloplast one (middle) as it looked the most ‘attractive’ plus it’s not meant to show through clothing in any light because of its design. Since I don’t have any experience with the other two, I can’t really make any comment on them although when a stoma nurse presents you with your choices, they give you the pros and cons of each one in regards to the adhesive, showing through clothes, ease of changing etc. so you can be sure you pick the perfect one to fit in with your lifestyle.
A few days after picking my bag, my stoma nurse came back, this time with a blue bag that she told me would be my medical bag. This is where everything I need to change my Colostomy bag would be and she then proceeded to demonstrate, changing my bag from the horrible clear one I was given after surgery, to my first coloplast bag. I’ll have to admit, the first time changing my bag freaked me out a little, getting used to the fact that a bit of my bowel was now stitched outside my body was not an easy thing for me to adjust to. However, as the days went on I got more and more comfortable with it as I slowly began to accept it. A video of my stoma bag (pictured below) and the contents will be uploaded on my facebook page and I’ll post the link here to help people understand what is needed and what each thing is used for.
From left to right, the contents are as follows: New unused stoma bag, scissors to cut the hole to size, wet wipes used to wipe off the adhesive remover once the old bag is removed, dry wipes to dry the area ready for the new bag to stick on, black bags that MUST be used to put the old stoma bag in before disposal and the scented medical adhesive remover spray.
If you would like to know how all these supplies are put to use to change a bag, follow this link for a quick video on how an Ostomy bag is changed. How VeganOstomy changes his bag is very similar to how I change my own although everyone adapts to their environment and ends up having their own way to change it. This is just an example to feed people’s curiosity rather than a video to tell people how they should do their bag.
When the stoma works for the first time
After the surgery, I was already in a considerable amount of pain, which is understanding for an operation that cut my bowel in two, stitched it to the outside of my skin AND removing a tumour from my bowel at the same time. I was given a morphine pump with my own button which allowed me to administer morphine up to every 5 minutes, which I found I needed quite a bit. I also needed anti-sickness, as after my surgery I struggled quite a bit eating and keeping it down although I had been struggling eating for a while before the surgery so I didn’t know if it was from the stoma or if it was just because I had such a back up in my bowel from the tumour that till my stoma worked, I wouldn’t be able to digest any more food. For the first 9 days, my days were filled with pressure to eat and drink although I didn’t feel like doing either despite actually being hungry and thirsty. Finally though, after the 9th day, my stoma finally began to work, which was a god send at first because after having a stoma fitted, the patient (being me in this case) was not allowed to be discharged till the stoma is fully functioning. Throughout my stay, the nurses made sure they warned me and informed me of everything I needed to be prepared for, however I was not prepared for the side effects that came with the first movement of my bowels after surgery.
With the relief of the thought of being discharged came this excruciating pain that I was certainly not warned about. All around my waist I had this stabbing pain that spread from my back, all the way around my side to my stoma. This caused me to curl over in unimaginable pain that caused me to heat up and sweat profusely before finally, the pain then caused me to begin throwing up. During my first episode of pain and sickness, I was desperately trying to numb the pain and put a stop to my vomiting, however it didn’t quite go to plan as every anti-sickness I tried didn’t seem to want to put a stop to my suffering. Eventually, I was given morphine, cyclizine and paracetamol all via IV that finally seemed to take control of everything. Without needing to go into full detail (as I already explained my experience in the blog posts from when I was in hospital for my surgery), I feel I owe it to warn anyone who gets a stoma fitted to be prepared for this and to NOT PANIC! Sadly, as I was not warned, all I did was panic, thinking the sickness had something to do with my cancer. The sickness did cause me to damage my wound slightly, my heaving pulling on my wound that was across my stomach but as long as I held my wound with some sterile gauze whilst heaving, I was able to prevent causing any serious damage. From this experience I learned the IV medication was a lifesaver, and if I was informed of the initial pain and discomfort that was to come when my bowel start working, I would have been sure to ask for anti-sickness and morphine in advance. Seen as I didn’t know about the pain, it took a while to get nurses to give me morphine and anti-sickness, leaving me to have severe pain and vomiting for 7 hours, but once I was given the medication, I settled in around 20 minutes.
The pain and sickness I had when my bowel started working, came multiple times over the following weeks and with every episode, my body would heat up from head to toe causing my body to be sick in retaliation the same as the very first time although with each episode, the pain began getting less and less. Since my surgery, I’ve heard the pain and sickness is actually quite common among most people while your bowel gets used to its new function. I used oramorph to battle the pain accompanied with cyclizine for my anti-sickness and eventually I learned that if I took both medications as soon as I started to feel the pain come on, I was able to avoid a full blown episode of pain and sickness.
Changing a Colostomy bag
Although changing my bag now is like second nature and I can do it quickly, it wasn’t always and it definitely took getting used to. It’s important when becoming a new owner of a stoma to understand all the technical terms that come with it. Below is a picture of the bag I use.
This is how I receive my bag although some people may receive their bag with a much smaller hole in the middle to start of with. The part in the centre with the blue circles and numbers is known as the flange. The flange is the area that needs to be carefully cut to the size of your stoma every time you change your bag. Once cut down to size, the whole sheet can be removed to reveal the adhesive underneath. It’s extremely important that the size is accurate; too small and it’ll be rather painful when the stoma tries to work and if is too big, the stool can burn the skin and when the stoma works, it can even begin pancaking (This is when the stool pushes between the flange and the skin instead of dropping into the bag. This can cause the bag to be pulled off which itself is rather painful and obviously an inconvenience as it can cause leaking).
Many people will adapt to their own routine of how to change their bag but the basics of using adhesive remover to take off the bag, wipe over the area, dry the area and then attach the new bag (once it’s been cut down to size) is something that everyone who has an Ostomy will use. The stoma nurse at the hospital will show you how to change it multiple times in order to make sure you get the hang of it and will give you little tips on cutting the bag down to size accurately.
Home visits from stoma nurse
Upon being discharged, your stoma nurse will let you know that they’ll be informing a local stoma nurse to come to your house to make sure your adapting well to living with a stoma. I was given numbers to ring when and if I need help with my stoma and told that I will get a phone call sometime before the end of the week to arrange my stoma nurse coming out to meet me. As far as I can remember, I think it was around three days before I finally got the chance to meet my stoma nurse. When she came to my house, we obviously had brief introductions and then I was asked to change my bag in front of her, to show that I understood what to do and that I didn’t need any help with it. During this, she had a brief inspection of my stoma as it was still healing to make sure everything was going in the right direction and I didn’t have any hernias or chemical burns from my stool (which is common if when cutting a Colostomy bag to size, the hole is made far too big and the skin is left exposed) as they can be extremely painful when it comes to a stoma. Once I’d finished changing my bag, the Stoma nurse began getting to the important things I needed to know as well as giving me more information that then made me more independent with my stoma care.
Whilst all the products cost is covered by the NHS, it’s still down to who has stoma to place the orders for the bags, adhesive remover, black bags, wipes etc. and make sure the kit is always well stocked for when it’s needed. The nurse then introduced me to Respond Healthcare, the company that provides me with home delivery of any products or supplies I may need when I request them. I place the order over the phone and tend to get my order within 1-3 days via tracked delivery with DPD. Till my first order, I only had a rather ugly and bulky blue bag to keep my stoma kit in but while my stoma nurse was helping me place my first order, she also requested a grey travel kit for me to have for when I was out and about (this is the bag I currently use and is in the picture at the top of this page).
After the first visit, I saw my stoma nurse a further 2 times before I was left to my own devices and if I ever felt like I needed a stoma nurse, I still have a number I can always call.
Life with an Ostomy
Now, my life is as normal as it can be when living with Cancer however, my Colostomy makes no major impact on my life. I can do everything a normal person can do and the Colostomy doesnt stop me from doing things such as swimming, going on rollercoasters, Go Karting, driving etc. and in actual fact, it’s helped me do a lot more as I never have to worry about going the toilet. I change my bag 1-2 times a day on average, changing it when it fills and every time I have a bath to ensure my bag is well stuck to the skin. I’ve also changed my bag before when it’s not even been half full as when I’m wanting to wear skinny jeans, I dont want to have the feeling of something squashed in my bag. I’ve only had about 3 accidents since I’ve had my Colostomy bag fitted back in May however, this is mainly down to a major side effect of my Chemo being diarrhoea, causing my bag to fill fast and have issues with pancaking. I’ve grown so used to my Colostomy bag at this point that I can often detect what it is doing and when, making managing it a whole lot easier.
People can have an Ostomy for many different reasons such as cancer, crohns disease, ulcerative colitis and bowel incontinence to name a view and can either be given to help reduce pain or, like in my case, save a life. Either way, for how easy it is to adapt to living with a stoma, whatever the reason for a stoma to be an option I believe it should be done with no questions asked. People often find themselves quite embarrassed or shy when it comes to talking about private things such as bowel movement but if all it takes is for a small surgery to make emptying your bowels easier and help with pain that, if associated with ulcerative colitis for example, can be extremely severe then it should not be dismissed out of embarrassment. This is why today, on worldwide Ostomy Awareness Day, I’ve decided to produce this post all about my experience with my Colostomy because I most certainly am not ashamed of my bag and I think problems with people’s bowels shouldn’t be such a taboo topic, it’s the same as having a problem with every other part of the body! I understand this is better said than done because in the past, I’ve even been embarrassed to mention my problems with my bowels when it’s come up in conversation despite my bowel cancer being a life-threatening illness that people are just naturally interested in.
Frequently asked questions
While I’ve tried my best to be as informative as I can be, there may be certain things I haven’t quite answered, hence why I have this FAQ section with the 10 most frequently asked questions below that I have taken from the internet.
1. Will I be able to continue with my normal daily activities?
Yes. After surgery you’ll be able to eat the normal foods that you did before you received an ostomy. If you have an ileostomy you will need to drink more fluids through out the day, in order to stay hydrated. If you don’t have any unexpected problems, you should be able to resume a normal lifestyle. You’ll notice an improvement in the quality of life in many areas since your body will not be fighting you IBD as much.
2. Will I be able to have a normal active lifestyle such as skiing, swimming, climbing, exercising, etc?
Yes, you’ll be able to live a normal active lifestyle. Many ostomates go on to do all the activities they loved and more now that they feel better after the surgery. You’ll be able to look forward to a normal lifestyle with swimming, skiing, hiking, traveling and more. It won’t come without some work though, you’ll need to plan ahead more and prepare for all possible situations, such as leaks or changes if necessary. If you take part in active and contact sports, you can purchase protective devices in order to cover your stoma.
3. What foods can I eat? Will my diet have to drastically change?
Some changes in your diet might be needed, but you should be able to go back to a normal diet. In time you’ll find the diet that works for you and the food that does or doesn’t digest well. When having an ostomy it’s very important to chew your food very well and follow it with as much liquid as possible in order to avoid a blockage or obstrution. Some foods are harder to digest then others, ileostomy patients should try to stay away from high fiber foods that could block their stoma.
4. What should I do if I experience a skin reaction around my stoma?
It is rare to have a reaction to a stoma bag as the materials that are used are constantly tested and evaluated for skin friendliness. If you have suffered from a skin reaction the first thing you should do is check that you have not used something different in your normal routine e.g. change of soap or barrier wipe. If there is no difference in your normal procedure, you may want to try a different product to see if it suits your skin better.
5. Will the clothes I wore before surgery still fit okay? What about sports wear, bathing suits, belts, etc?
Most people are able to wear their clothes from before their surgery. Shortly after the surgery you might be afraid to wear a belt and other constricting accessories that might go over the stoma. This will depend on the area your stoma is. Tight clothing will not injure the stoma, but might take getting used too. When wearing tight clothing you need to watch your ostomy more since it can make it harder for fecal matter to fill the ostomy bag without causing a leak. Swimwear for both men and women are available to help cover and support an ostomy.
6. How long will my stoma bag last before needing to change it?
This will vary greatly on different makes of stoma bags and lifestyle. Most ostomy appliances can last 3 to 7 days, however they should be changed as soon as they become half full. In time you’ll learn how long your ostomy usually will last and when to change it to avoid a leak.
7. How many bathroom trips will I be making daily with my ostomy?
This will depend on many factors such as what you eat, how much you drink and how your body adjusts to the surgery. Colostomy patients might be able to empty/change their ostomy as little as two times a day. Most are around 4-6. Ileostomy patients have to empty it more since they don’t intake as much fluid and their output is much softer.
8. I’m nervous about odor from the bag, will this be something I have to deal with?
With the technology that they ostomy appliances are made of now, you won’t be able to notice an odor. When emptying the ostomy you’ll notice the odor does change depending on what you’ve eaten, but it’s nothing a quick spray of perfume or air freshener won’t mask. If this is something that you will worry about ask your doctor or appliance provider for ways to hide odors.
9. What about showering with my stoma? Will anything hurt the ostomy?
You’ll be able to shower like a normal person. When changing your ostomy some people like to shower with it off at that time to give the skin a break and clean the area as much as possible. Exposure to air or contact with soap and water will not harm the stoma. If you have an ileostomy, choosing a time of the day when you haven’t eaten much before usually makes it easier to change since there will be less output. Stay away from scented soaps as they make it hard for the adhesive to stick and will result in an ostomy lasting a short time period.
10. What should I do if I experience phantom rectum pains?
These very often occur when the rectum has been removed. You may get the feeling that you want to evacuate the bowels in the normal way. Although uncomfortable, they are nothing to worry about and should settle down in time. If not, see your GP for advice on painkillers and other medication which may help.