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Following the surreal experience, a few hours earlier, of saying goodbye to your family and being carried on a trolley along corridors looking up at the lights in the ceiling (just like you see in the movies) and being wheeled into a room full of machines and lights and meeting several people who are friendly, but busy, who talk to you, but mostly they talk to each other, about what they are doing, or what they did at the weekend, who attach wires and tubes to you and regularly check your pulse and blood pressure, and your identity, then eventually they syringe a solution into you from which point on you don’t remember anything! You eventually wake up in a bed in a hospital ward, you feel like you have been in a fight, and you lost, you feel sore, you feel groggy, you have tubes and drips attached to you, you feel disoriented, you feel lucky to be alive, and the first thing you look for is the “bag”.
Your ‘new life’ begins! Thankfully, the feeling of being ‘lucky to be alive’ takes precedence over the other feelings as you come to terms with your new reality.
Everybody’s experience of this is totally different, but, the reality that you have to live with a “bag” (of shit) hanging off your abdomen is a great leveller. The “lucky” ones only have to live with it for a short period of time, but, in my case I knew I would have to live with it for the rest of my life. I got advice from a person who had been through this experience that helped me greatly to deal with it. The advice was, “accept” your situation and take control of it. This I did, and I was changing my own bag the following day after the surgery.
Living with a “bag” is not easy; it took me several months to come close to really accepting it. Looking at yourself in the mirror, with a bag hanging off you, was not easy to come to terms with. And, I am a male, so it must be a lot more difficult for a female to deal with. The normal daily routines of life had changed, both physically and mentally. Dressing in your normal clothes, having a shower, even sitting down, were all different! There were also the new routines to deal with; emptying the bag, changing the bag, smells, splashing, toilets not flushing properly, were all part of the ‘new’ reality.
The most difficult thing to deal with was the fear the bag would leak; and, inevitably it did leak! This is a dreadful experience, it feels no demeaning, so all-consuming, it destroys your confidence and prevents you getting on with your life. When it happens at home it is really bad, when it happens in public it is devastating!
My own story
My own story started out slightly different to the norm! Firstly, unlike most people who have to have bowel surgery, I was not ill when I had it done. Although I had Ulcerative Colitis for over twenty years, it was not severe. I rarely even had a stomach cramp and I only had flare-ups every couple of years. The reason I required bowel surgery was because during a routine investigation a polyp discovered in my bowel was found to be potentially cancerous. I was informed I had a 60% chance of developing cancer within 3 to 5 years! My surgeon said to me “have all of the bowel removed and you won’t have to worry about the potential cancer or the colitis”. After getting over the shock of this, and a lot of mental anguish and torture, that is exactly what I had done.
The fact that I went into hospital healthy stood me in good stead, I recovered, physically, quicker than normal. I was discharged from hospital five days after the surgery. You will notice I used the word ‘physically’ in the previous sentence; dealing with the ‘mental’ side was a lot more difficult. The fact that I went into hospital ‘healthy’ actually caused me a lot of grief! I felt I was going into hospital as a healthy person and was going to come out an un-healthy person. So there did not appear to be any obvious physical benefit in this venture for me, apart from the fact I would not get bowel cancer at some point in the future. Another mental issue was a ‘sense of loss’. The UOAA Website mentions “grief “and “loss”, which I experienced about six months after the surgery. I felt I was doing well and then all of a sudden I was feeling very down. I met with a Cognitive Behaviour Therapist who diagnosed my problem as “grieving”, and when I got my head around this concept I was able to deal with it.
I had fantastic family support, I had the help of the Cognitive Behaviour Therapist, and a good mental attitude (eventually), which all helped me to come to terms with having to live with a stoma. I also had a ‘mission’. I work in the fashion business, so clothes are very important to me. I immediately went looking for a device that would allow me to wear my normal clothes when I returned to work, so that I looked and felt “normal”. The idea of wearing high-waisted baggy trousers, or wearing old fashioned braces (as was suggested to me) or wearing elasticised trousers, would mean my life had visibly changed as well. Having to deal with a bag of s..t hanging off me was bad enough, but having also to change my life style was just too much to deal with! I was not prepared to stop wearing smart cut suits, jeans, slim fitting shirts, etc.
I purchased several protection devices and discovered most were not successful. There were many problems with them; for example, all of them had a fixed belt attached to them to keep them in place, which meant they were uncomfortable to wear for any extended period of time. Another major problem was, unless the belt was worn very tight, it would move, which also moved the attached device, which in turn would pull on the ostomy bag resulting in a “blow out”. This happened to me with two of the devices I purchased!
So, STOMAPROTECTOR was created, and over nearly two years of development I created a device that I believe solves a number of the problems that people who have a stoma have to face on a daily basis.
- Protects stoma from pressure and impact.
- Prevents leaks from the adhesive flange of an ostomy pouch.
- Reduces the number of bag changes, resulting in healthier skin.
- Can be worn by females under dresses/tops, etc.
- Helps prevent the problem known as “pancaking”.
- Allows the wearer to wear most of their normal clothes.
The confidence it has given me is fantastic; my commute to work is a 20min drive, a 60/70min train journey and a 30min walk. Also, while socialising, playing golf or any other leisure activity, I don’t worry about leaks any more. I have not had a single leak since I started wearing it regularly.
I hope you found this information helpful and good luck with living with your stoma.