Demystifying Life with Ostomy

April 19, 2021

Around 800 000 citizens in Europe undergo ostomy surgery, a procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into an ostomy bag on the outside of the body. This surgery is necessary due to a variety of diseases, such as inflammatory bowel disease, cancer of the colon or rectum or obstruction, that compromise the normal function of urinary or digestive system. Despite the rising of ostomy surgeries in the world, this is still a tabu, even for ostomates. However, having an ostomy does not mean people will have to change their lives, in reality, a lot of patients say that having an ostomy gave them their life back!

After the surgery recovery, patients can go back to their regular life, and this means returning to work, travelling, doing exercise, and going to the beach. A lot of people think ostomates have their life limited, but they can return to the same level of physical activity they used to do before surgery.

Last week we talked with Andreia Lima, a 26 year old young woman from Portugal who has been ostomized for 3 years now, due to an ulcerative colitis. Despite her hard journey with the disease, being an ostomate gave her life back and she demystified some myths about it with us.

So, if you could describe yourself, who would you say is Andreia today?

‘I’m still discovering who is this Andreia, because this Andreia is a new Andreia. I was always very reserved, and I didn’t speak to anyone. After the operation, I became someone else or maybe I was always this person and I never had this experience, which is the fact of being much more resilient, of trying to endure a little more, and of always having a word for someone who needed it. Now I try to demystify everything that may exist and help to create this sharing of information.’

What was your health condition before having the first symptoms of your disease?

‘Since I was little, I have had some health problems – being asthmatic and many ear infections, so my immune system was not that healthy already. But other than that, I had a normal life and normal diet until I discovered the disease. My life was a perfectly normal life, with a lot of work, because I started to work at the age of 15, until a few years later, after my grandmother’s death, that was when everything started to fall apart. I started to have extreme tiredness, to wake up exhausted, and I associated it with work, because at the time I had 2 or 3 jobs. Then I started going many times to the bathroom, with diarrhea already, which was not normal, and then I started to have blood in the feces and that’s when I realized that something was not working as it should.’

After you discovered the disease, what were the treatments that you did to try to overcome it and why at some point you had to be ostomized?

‘When I was diagnosed with the disease, I started biological treatments, at the hospital, the treatments lasted 6 hours, so I was at the hospital all day doing the treatment. Also, a lot of cortisone, because I was already in a very advanced stage of the disease and it is a strong medication to reduce the inflammation of the intestine. This therapy helped a lot at the time, however, it started to have no effect, so we started experiencing new treatments, I was also taking oral pills, which helped to control the disease, but it was not enough to have a normal life again. So, at certain time my ostomy was the only solution. I tried everything that was available at the moment and I was already extremely tired of trying everything, physical and psychological, because the side effects are huge.’

How much time passed since you started having the symptoms of your disease to be ostomized later?

‘4 to 5 years. I started having the symptoms at 18 years old and I was ostomized at 23.’

How much the treatments for your disease cost before you were ostomized?

‘The treatments were very expensive. For example, an ampoule that I had to take every 2 or 3 weeks, depending on how I was, an ampoule cost about 3000 euros. It didn’t pay for it, it was the state that paid, but it costs the state, and it is not a treatment that is available to everyone, because we have to do a lot of tests in order to have authorization for this treatment.’

After you’ve decided to take the surgery, how was the all process?

‘From the moment I decided to take the surgery I waited a month at home until I went to the hospital for the surgery. During this month, the process was very smooth, I was very anxious to have the surgery, I really wanted it to happen.

After the surgery, the process was not easy, I was hospitalized for 6 months plus 1 month in the rehabilitation hospital, because there were many complications. But this is not the normal recovery, usually an ostomy takes 15 days to recover, and it took me 6 months!’

There are ostomies that are reversible and some that are definitive, which one is your case?

‘Mine is definitive! There is no possibility of reversal. However, there are a lot of reversible ostomies and this usually happens when you want to give the intestine the opportunity to recover over a certain period, usually between 6 months to a year, depending on the case of the intestine or the colon. And it is done precisely to recover and then be able to return the normal intestinal transit.’

A lot of people think ostomates cannot do the same things they used to do before taking the surgery. Can you tell us how is your day? What things you need to be careful about in your daily activities?

‘My life is completely normal! I do not have to be special careful with my ostomy, in the sense that, I take my shower and as my ostomy is always working, it works 24 hours, for me, there is no way to take a shower without the ostomy bag. So, I take my shower, change my bag and my plaque and then do my normal day. The only thing that I need to be careful about is trying to avoid any exercise in which there is a direct contact with the abdominal area. I also use a shapewear, because it helps me with the scar and prevents intestinal prolapse, but I do not see any limitations.

I don’t stop doing anything, quite the opposite, I do a lot more things than I did before!’

And have you ever had Medical Adhesive-Related Skin Injuries?

‘At the beginning it was very difficult because I am allergic to a lot of things, I am allergic to the anti-allergic, for example, and I was allergic to the dressings that they put on my scar and to the plaque also, so I had my skin with a lot of injuries for a long time.

After that adaptation period, I started to tolerate it more, however, there are periods when I get sores again due to the glue of the adhesives as well.’

If you could change something in the way ostomy is seen in Portugal, what would you like to change?

‘At the ostomy level, it is not known at first, and we should be included in many more situations.

In terms of inflammatory bowel diseases, we do not have any rights, we spend our lives at the hospital, and we have to pay for everything, we do not have access to bathrooms, we do not have access to more expensive treatments, and we don’t have any support when we are hospitalized or if we have to stay at home without being able to work. There is no inclusion.’

What would you say to someone that is now in the process of being ostomized?

‘There is so much I can say! There is a phrase that I always use, and it helps me a lot, that is: when we are ostomized nothing is the end, everything is the beginning! Because a second chance has been given to us. And the second opportunities do not happen very often. So, if we have this new opportunity, it is because we are in fact able to learn from it and enjoy it even more than before.

Despite the difficulties that we have as an ostomate, it is possible to live with it, be happy with it, and have a perfectly normal life like any person without an ostomy.

Most of our problems come from us, from underestimating ourselves, so I think the click has to happen first on us and from there everything happens more easily and naturally.’



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