4. Practice makes perfect

Today I'm going to try to tell you about my experiences over the last couple of days, specifically in relation to meeting with a 'stoma nurse' and also in practicing wearing an ostomy appliance (bag).  If you're lucky (well, that depends on your view I suppose) I may just throw in some mild nudity at the end! But be prepared, it may not be to your taste...

The Stoma Nurse

Two days ago I had my first meeting with a stoma nurse. These highly skilled and compassionate professionals provide a vital support service for ostomates. It will be the beginning of a long relationship since I will draw upon their help and advice from this critical period pre-surgery right through to the day I pop my clogs. (By the way, 'ostomate' is the term given to a person who has a stoma and needs to wear an ostomy bag).

After a brief exchange of pleasantries it was straight down to business. "So, you have Crohn's?" asked the nurse and I duly confirmed. "And you're due to have a pan-proctocolectomy with ileostomy, is that what you understand is to happen?" Again I confirmed. I think he then asked me if I was aware that this would be permanent and that it would mean some life-long changes to my lifestyle. At all times, despite the pretty grave subject matter, David (the nurse) was speaking with compassion and understanding and I felt very at ease. I was then presented with a grey box called the Hospital to Home Trainer Pack containing several booklets giving general advice on various things and, most notably, some sample ostomy bags. It also had a red foam disk about an inch thick and the diameter of a 2p piece - this was a false stoma (Sam my wife later called this a 'Foam-a', which made me chuckle). The objective - to stick this in place where I think I might want the real thing to be located, wear an ostomy bag for a day or two and see how it felt.

I have to admit that despite my best efforts to remain positive, a wave of emotion passed through me when I saw the ostomy bags. It was suddenly very real for me and for a second or two I wanted to run away and hide. This, however, quickly passed and I was again focussing on the fact that these appliances will soon be helping me to live with a much better quality of life. I spent around 30 minutes in total with David and we discussed several things, including that we'd need to meet again at least once before surgery to agree on a site to form the stoma. I left feeling really very good, even excited.

My first two days with an ostomy bag

Those who know me will know that I tend to jump in with both feet and tackle problems head-on if I can. The stoma nurse had advised that I try wearing the sample ostomy bag over the weekend, when I'd be home and comfortable. But I thought "To hell with it, I wan't to know what this is really going to be like". So it was Thursday evening and I pulled off the adhesive backing on the Foam-a and stuck it where I thought it made sense to locate it. Next came the application of a bag. It is critical that the waste expelled from my soon-to-be stoma does not get in contact with the skin on my abdomen. The digestive enzymes which normally stay within the digestive tract will escape, gladly trying to digest my skin if this happens. Therefore it is imperative that a good adhesive seal is created to form a barrier around the stoma. There is a large round sticky disk (known as the 'wafer' or 'flange') on the back of an ostomy bag which serves this purpose if correctly applied. Since no two stomas are the same size or shape it is necessary to be able to cut (with scissors) the hole in this disk to fit snugly around the little guy. Thankfully mine were pre-cut to the false stoma since I didn't have a small pair of scissors.

Removal of the adhesive backing on the wafer revealed an extremely tacky substance which easily bonded to the skin and it felt very secure. I should add that I had pre-filled it with some water to further increase the realism of the test. I gingerly showed my wife the appliance and she was very supportive, which made me feel nice. I had donned my pyjama trousers by this point and the belt line was about 1" below the false stoma, therefore the majority of the bag was below the belt line, tucked inside.

During the night I woke up and realised that part of the adhesive wafer had detached from my skin and I thought that maybe it would get worse and worse and begin to leak, but I was wrong. A prod around it combined with my body heat seemed to firmly re-attach the loose bit again. I found this quite reassuring.

Friday would be my real test day and I tried to put the appliance through its paces by carrying out various tasks. I am pleased to say that I completed the following with absolutely no worries of leaks or feelings of embarrassment in wearing the thing:

• Showered
• 2 mile walk to work
• A day in the office
• Lunch time - went clothes shopping and tried on various garments
• Tried on and bought some shoes
• 2 mile walk home
• Watched 'The life of Pi' in 3D at the cinema (let me tell you that, ironically, I nearly shit myself when tiger jumped out for the first time after the shipwreck!)
• Slept a 2nd night (including on my front at times)

Whilst it seems like these are pretty menial tasks, I fell very re-assured that the test went smoothly. I had learnt, first hand, that there's no reason to be scared of living with an ostomy bag and, not only are they quite comfortable to wear, they're easy to conceal beneath normal clothing.

Now, I promised some partial nudity but before I get to that here's a little quote I picked up from a fellow Crohn's sufferer:

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well" - The Associated Press Guide to Punctuation

'til next time, folks...