I thought I would talk about how I came to the decision of having a Barbie bum over a temporary ostomy. Now this isn’t as far as I’m aware for urostomates but it is an option for those going for a colostomy or an ileostomy. The first time having an ileostomy was brought up I was 14 and I felt at the time that I had plenty more things I could try before resigning myself to surgery at such a young age, the surgeon was fantastic and accepted that was a fair point but allowed me to keep the option of surgery open.
When I decided in 2015 that I needed to do something to get rid of the Pouchitis I was suffering extremely badly with; the Gastroenterologist I saw gave me two options antibiotics along with a heavy duty probiotic (which my GP wasn’t able to subscribe) or steroids. Before my jpouch surgery in 2008 I was addicted to steroids, I would demand them, use emotional blackmail just to get them. Now they were the only thing that made me feel better but I was only ever given week doses as they knew I was clearly addicted. Now if I was a better patient at taking my medication on the whole maybe I wouldn’t have needed to rely on the steroids as much but again everyone involved knew I was atrocious at taking medication. So I outright refused the steroids knowing that there was a risk I would revert back to how I was, so I took the antibiotics. I had two types which I took for 3 months and when I went back to the gastro he said I would probably have to be on/off them for life as my pouchitis didn’t seem to be shifting. Now I had read up that taking long term antibiotics is not a good thing and can be rather detrimental to the way your body works. I had spent three weeks looking at google images of stoma’s till I stopped crying when I saw one which meant if he couldn’t give me a better option I would take the surgery route. I just looked at him and asked to be referred to the colorectal team and that I wanted to have it all removed.
I remember the day I went to see the colorectal surgeon up at the hospital I had been seeing the Gastro (and where my most recent admissions had been) and left absolutely furious. I went in with 00Steve and Ra-Ra and explained how angry I was at not really having proper information on having the jpouch and to be honest if I knew that having a temporary ileostomy whilst my pouch healed was going to have possibly saved me a LOT of pain and discomfort (as I think it not being able to heal properly allowed the pouchitis to take hold only a few years after my surgery rather than when I was diagnosed) I would have gone for it. But no I was told I didn’t need to have one and would only have one in an emergency so I became very against the idea of having an ostomy of any type. I mean so against the idea that when the stoma care nurse started drawing circles on my stomach I hit the roof as nothing was explained to me. I was 21, in an unstable relationship, not in a great place mentally and in agony, none of those things were going to help me make level choices without proper information.
So this surgeon was now explaining to me about the different types of ostomy surgery I could have and he was adamant to give me a temporary ileostomy with the hopes that the pouch would settle down. I had a gut feeling (I don’t always trust my gut I mean 20 years it has tried to do me in so why would I?) that this was a bad idea, having a surgery that could lead to more surgery or not even sort out the problem was actually quite a scary idea. I didn’t hesitate for a second I just responded with I want it all gone and have a permanent ostomy, infuriatingly he said I wasn’t mentally strong enough to have a permanent ileostomy. This guy met me for 10 minutes and I don’t know how I managed to stay cool but through tears (those damn things I can’t help) I just asked him to refer me to the surgeon who did my after care for my jpouch in my local hospital which he agreed but didn’t seem convinced that I would be given it from him either.
The day my colorectal surgeon had the letter hit his desk I had been admitted to hospital after my night shift. I was in bits both mentally and physically, let alone the registrar wouldn’t let me eat (yes even if you are now my favourite I will never forgive you for that!!) which made me quite bitchy. So my surgeon took one look at me and I think he knew I was going to just pour out with all my frustration, he said you have a toddler how can you not be mentally strong enough! I was let home as long as I came back each day for different tests so they could have a better view of what was going on and he could take my request to some medical board and fight for me to have a permanent ostomy. I understand that having a temporary ostomy can obviously be reversed and not everyone gets on with it, but I was just so done with everything I wanted relief and discomfort/annoyance from an ostomy was surely going to be better than pain or having mucous movements! So I agreed to have “counselling” sessions with my stoma care nurse as he remembered what an (in my words) a stroppy arsed 21 year old I was.
It eventually proved to be for the best all these tests I had done as my pouch had become inflamed and the lining full of pus. I can’t remember the full details as I spent most of the 3 month period before my surgery very disorientated and in a lot of pain. It was like a longer period of the higher end of a flare which I would always be admitted prior to my first surgery. I was told that I could go ahead with the permanent ileostomy and a provisional date was set, provisional due to the junior doctors strike in 2016. I had about three more admissions before then to try and manage my pain and bowel distension, I looked 6 months pregnant again due to the bloating and was rock hard.
I haven’t regretted my permanent ileostomy and I hope I never do in the future either because other than the fact I’m experiencing more of the other IBD side effects I am NOT suffering any pain from the bowel; I have only had four hospital admissions related to my stoma and two of them were whilst I was pregnant. I truly am grateful for the fact I had one surgeon who has never given up on me and has given me another chance at life.
If you were able to choose to have your surgery or currently have the option of a reversal or not, how do you feel about everything? What would help you create your decision?