Ainslee’s Story

My Ostomy Journey

I’m a 35 year old woman with Spina Bifida. Due to functional reasons it was suggested that I get an ileostomy. At the beginning I spent months going back and forth between doctors who told me it was the best option for me, and others telling me that I was too young to get this done and I should seek another opinion.

Due to life circumstances (building a house with my partner), and after a year or so of fighting and searching for another option, I was finally referred to my STN Julie Isherwood by my GP who convinced me it really was the best option and I should explore it further. I booked an appointment with Julie and was given some brief information about how it would work and a DVD to watch. The DVD itself, whilst informative, didn’t help me because it focused on people who were a) able-bodied and b) didn’t have to have an ileostomy permanently.

I then went to see my surgeon who discussed my situation with me and convinced me that this indeed was the best option for me and that it would make life easier for me and I would be able to return to eating what I wanted soon after. I then booked in a date to get the surgery done, or as my doctor called it “fashioned” (nothing fashionable about it in my opinion!).

I chose a date that, in hindsight, I wish I had not (Valentine's Day). After the operation and the drugs wore off, the realisation of what I had done sunk in. I couldn’t bring myself to look at my stoma and took longer than normal to leave the hospital. The first week home was fine, and then I went back to work. It went downhill from there.

On my first day back at work, my bag leaked everywhere. I had to go home and get changed. My doctor was like “oh, that’ll happen, just take a change of clothes”, failing to understand I couldn’t dress myself. This happened again and again over the next few weeks and I missed a lot of work. I also couldn’t come to grips with having to drink the amount of fluids I now had to, and as a result I ended up in ICU with renal failure.  Once I was admitted back onto the ward and the drugs wore off again, I found myself crying at the drop of a hat. I again went home and attempted to go back to work but the same thing was happening - bag leaking and having to go home all the time. By this time my STN had tried 6 different appliances on me and we were at the last one. I had tried the emptying ones but I couldn’t handle seeing the waste (it would make me cry). It was at this point when I was finally diagnosed with depression.

My STN then put me in contact with YOU (Young Ostomates United). I had previously looked at a forum online but they were all older people which didn’t help me very much as I am a young (I think 😛 ) woman. As soon as people started talking at YOU I finally felt like I was not going insane. Every single person in that group suffered depression just like I was going through and had similar issues to me, although their reasons for a stoma were different. Being a part of YOU and being connected to people such as Karen McKenzie has helped me immensely.

YOU is something that people need to attend before they get this surgery, not after. Whilst it may not be pleasant, people need to understand what is going to happen to them, not from some doctor sitting behind their desk, or from an STN who doesn’t have a stoma (although they are so helpful), but people need to talk to other people who have stomas so they can be prepared for what they are in for. If I had known that I was going to suffer from depression, it could have saved me from trips to hospital as well as having to defer my uni degree. Also, doctors telling you you will be able to eat whatever you like is not helpful, as I found out. I spent hours on end in the bathroom dealing with the after effects of food that didn’t agree with me.

I don’t want to paint a bad picture of all of it. Like most others in the YOU group, I hate the fact I have this thing, but I wouldn’t go back to how life was before. For me it took 8 months to get myself fully sorted, and this might have been shorter had I known what I do now, and had I been put in contact with YOU before my operation. Medical staff cannot properly prepare you for something like this, only those who have been through the same thing as you.

The above was read at the Panel Discussion as part of Y.O.U. Inc's "How Can YOU Help You?" Evening (October 2013).

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