Mariam

Colostomy since 2006
Country: United Kingdom
Occupation: Training to become an Integrative-Relational Counsellor
Leisure time: Charity work and fund-raising; has a very sociable life

In December 2006, I was on a train platform together with lots of my good friends. We were celebrating, as I was leaving the country to go travelling. My friend Gustav was so happy and excited that he took me in his arms and spun me around like a carousel, but he lost his balance and we both fell on the railway track as the train was entering the station. I had extensive injuries, and my pelvis was severely injured.

I felt sick when I saw my stoma the first time

I was in the intensive care unit for 3 weeks, and for the first 2 weeks or so, I was in a drug-induced coma. Because of this, not only was I totally unaware of my injuries and their extent, but I also had no idea that I had a stoma. It was only in the last few days of being in the intensive care unit that a nurse briefly explained what it was while she changed the pouch. It wasn’t until I was moved onto a general ward that I was made fully aware of what this meant. I was in a state of shock. I had never come across anyone with a stoma before and did not know what it was. Because of the emergency operation, the surgeon created a loop colostomy so I could have the option of reversal in the future. However, because of this, my stoma was huge in size, and I remember the first time I saw it: I felt sick at the sight. I thought it was so ugly, and when my bag was changed, I could not bear the smell. I was so upset and confused and felt disgusted.

Changing my pouch for the first time

Once I was a little better, the stoma care nurse came to teach me how to take care of my stoma, but I found it really hard to look at and deal with. I was encouraged to do it on my own, but I found it really difficult, and it took me a while to get used to it. I was frustrated and often upset when they wanted me to manage it on my own. I hated looking at it and touching it, and it did take a few days to come to terms with it, but eventually I did.

I remember the first time I changed the pouch by myself. I was in a wheelchair at the time, and I was in a huge hospital, so the experience felt really strange to me. I remember feeling really proud of myself because I could finally manage without any help — and I finally felt okay about it. I remember smiling at myself, thinking that it wasn’t too bad.

Now it is just something I do. Most of the time, I am on autopilot and I do not give it much thought — I just do it — much like brushing my teeth or tying my shoelaces! Now it’s just a normal part of my life. It is a part of what I am, but it certainly is not what defines me or makes me who I am!

Sharing my condition

I was in hospital for almost 7 months, and both my family and friends were amazing. I never felt alone and was well looked after. My parents knew about the stoma long before I did, and once I was on the general ward, I was very open about it with my friends, and consequently, they were all really supportive. Although having a stoma is very private and personal, I can’t imagine not sharing my condition with my family or friends and not having their support.

Now my life is as normal as it gets

In the initial stages after leaving hospital while I was still coming to terms with everything, I felt embarrassed and ashamed of my stoma. Because my stoma was unusually large and high on my stomach (because of the emergency situation), it meant that I had to wear huge maxi-pouches and special support underwear to hide the pouch — otherwise it was very visible. The underwear came up to my chest and I felt very unattractive, but I was just relieved that my pouch could not be seen.

I had trauma counselling, and this was an immense help in my coming to terms with and accepting the massive changes and trauma my body was going through — and body image was a major issue. Counselling was really invaluable to me.

I had to learn a slightly new way of living. I had to learn to always be prepared by having enough supplies and knowing where all the bathrooms were. As time passed, this too has become second nature. I remember initially believing that my life was going to be heavily restricted by having the stoma and that in particular, my social life would drastically change. But I can honestly say that that has not been the case. I still enjoy a normal social and happy life — I go on holidays, stay over at friends’ houses, go out clubbing, and enjoy normal activities like everyone else. I’ll even go sky diving next year to raise money for the Trauma Unit at St George’s Hospital, London! Now, however, I feel proud to have it, as I know I would not be alive without it.

Re-operation?

After a lot of examinations and tests, I was told that a reversal had little chance of working, and I decided not to go ahead with it because of the high risks involved. So, in August 2009, I had a re-operation. My large loop stoma was removed, and a new end colostomy created. Now my stoma is much smaller and lower, and I can now use normal pouches and wear normal underwear! I was so excited when I left hospital that one of the first things I did was to go and buy new underwear.

Clothes: no problem

I wear exactly what I want to wear, and my style is no different than what it had been without a stoma. However, prior to having the new stoma created in August, I did feel slightly restricted in what I could wear because my stoma was so much larger and, therefore, more visible under my clothes. That’s why I chose to wear loose clothes. But since my operation, I enjoy much more freedom and can wear fitted tops without worrying too much at all. Wearing a pouch with low headspace and an off-centred starter hole means that the bag does not poke up at the top and is placed further down on my abdomen, which is great for me, as it is even less visible through clothes.

Fund-raising and charity

I like to be involved as much as possible with charity organisations associated with people with a stoma, to support the cause and also to encourage others by showing that living with a stoma should not restrict your life in any way. In April 2009, I did a fashion show with Ostomy Lifestyle and was very proud of this.

Recently, I organised a fund-raising event to celebrate 3 years since my accident and to commemorate the death of my friend. It was an extremely enjoyable evening with live comedy acts, two bands, a raffle, and free food — and we managed to raise a staggering £2100! The money went to the A&E and Intensive Care Units and St George’s Hospital; their roles were crucial in saving my life.

I am now training to become an integrative-relational counsellor, and I am thinking about specialising in trauma counselling within a hospital setting, as I have had firsthand experience of how valuable and beneficial it can be. I really enjoyed organising the fund-raising event, so I am tentatively considering also doing something along those lines.

Products

I sometimes get irritated peristomal skin — sometimes from leakage but more often just from the sheer number of times the bag is changed — so I need the wafer to be skin-friendly and very thin and flexible so it follows the contour around my lower abdomen.

The soft fabric around the pouch is important to me. The filter is also incredibly important — the pouch must not balloon too much, and if it does, the filter must be able to get rid of the accumulated air quickly and discreetly. This is so vital that if it doesn’t work properly, it means the bag will become noticeable under clothing, and that can be really embarrassing.