I have had "Barry" my stoma - which is an ileostomy since February 2012. Since having my stoma I have been camping several times, been to the Paralympics, swum the channel (well the distance of a cross channel swim in my local pool), been on several flights, spent numerous hours on playframes and ball pools with our daughter, marched whilst playing a cornet in a carnival procession, played the trumpet in a show band and have run round the Olympic Park.
I have always been active and having lost so much time to UC I have been determined that Barry will not be a hindrance to me and will not stop me from doing the things that we, as a family want to do together.
Tip 1: Go for it!!
My first moment of liberation was going swimming as a family ... it wasn't long after my operation, maybe about 2 or three months and we had decided that Ian would take our little girl and I would watch on the side as I hadn't yet bought a new "stoma- friendly" costume. As they were getting ready Ian suggested I tried on my swim suit just to see ...
Ian is very honest and as I came out of the bathroom - he said - "you can't see a thing". Initally I didn't believe him - I could see the shape of the bag and was self-conscious about it. He reassured me that you really couldn't see anything. My little girl's face when we told her that mummy was coming swimming too was just magical!
The only thing that perhaps topped this was being able to take my little girl swimming in the school holidays on my own - something I could never do before I was given my ileostomy!
Tip 2: Be honest!
Before I had my operation I spent so much time on the toilet that my little girl started to think that this was a normal way of life! I don't think I was ever really honest to myself or anyone about how bad I was. I am a person who just gets on with it. I was given a diagnosis of IBS, and when you read the symptoms on the internet my symptoms matched, although in the back of my mind, particularly when things were bad I was scared of what really might be wrong with me . .. It was only as I went downhill rapidly just before I went into hospital that people around me realised how ill I was ( and I realised how ill I was)
From the time I came home it was important that we were honest - particularly to our little girl. As soon as I was able to she saw my operation site and the dressing and my bag. She very quickly named it my "nappy bag".
Ian made me promise as he brought me home that I told him how I felt and what was happening - now the only time he doesn't grumble at me if I wake him up at night is when I tell him I have a blockage and need to go for a shower!
If Fiona asks questions we answer them as honestly as we can. She knows I will have to go into hospital again to have my rectum removed as I am not going to have the "reversal" or J-pouch operation. She knows that I will always have my special bandage as it is this that has made mummy better!
At first if she saw my bag she would point to it and talk about it - now she barely notices it!!!
Tip 3: Expect the unexpected!
As I have travelled more and spent more time away from the comfort of home I have learnt to plan for the unexpected. If there is one thing you can guarantee with a stoma it is that it will misbehave when you really don't what it too. A perfect example of this was my cousin's wedding in August 2013. Fiona, our daughter was a flower girl and we were booked in for a long weekend in London. I packed double the supplies that I would normally expect to use for two nights away. I change my bags daily as I find this is more comfortable and makes the bags more reliable - so for 2 nights I took 4 bags with me. As we got ready for the wedding on Saturday morning I showered and changed my bags as normal. We then went out for lunch before heading to the church. As we sat through lunch my bag felt uncomfortable.I took Fiona to the toilet, whilst there i did a quick check of my bag only to discover a massive leak. I then had to change the bag in the toilets! Thank heavens for the space in an accessible toilet! after a quick detour to the hotel to gather clean underwear we carried onto the wedding! Unbelievably during the reception my bag leaked again! This time I had to do a bag change by torchlight in a non-flushing Portaloo! I was left with one spare bag to last until I got home the next day! Fortunately this bag lasted and we got home without further crisis! I have since learnt to travel with at least THREE times as many supplies as I think I need.
Jason from Ostomyland has published a great article on dealing with leakage:
Editorial #2: Combating Ostomy Leakage
Tip 4: Establish your own routine.
When I first had my operation I was given some excellent advice by the stoma nurses about how to change my bag and what I needed to use. As time has gone on I have developed a routine that works for me.
I change my bag daily - although there is no need to (Stoma nurses recommend every other day). I am an active person - I try to go to the gym two or three times a week, swim at least once. Every couple of weeks I cycle with my little girl to school as well as walking the dog. I found that if I left the bag on for two days the flange (sticky bit) became more itchy and uncomfortable. I began to change every day and this meant I could shower with my bag off so the stoma and skin can get a good clean - it also allows the skin to breathe for a short time too.
I set up everything I need before getting into the shower and before taking the bag off. My essentials for a change include: prescription dry wipes, wet wipes (either prescription wet wipes or baby wipes), adhesive remover spray, adhesive remover wipes, a new pouch, barrier wipes and disposal bags! I now have my pouches pre-cut now but when I first had my stoma I also had a pair of scissors and and template to help me cut the hole to size.
Originally I washed the stoma and the skin using water and dampened dry wipes but I soon found that for me wet wipes were more convenient. There are some schools of thought that suggest you shouldn't use ordinary wet wipes as they contain something that can affect how the bag sticks but I haven't noticed any problems. I just find wet wipes more convenient - I use a combination of normal baby wipes and the wet wipes that my delivery company send me. The prescription ones are free and most supermarkets do their own reasonably priced "basic" range of baby wipes.
This routine works for me and stops my skin from getting itchy and sore. Everyone's routine will be different but it is important to find one that works for you and it will make managing your stoma easier!