Guest Writer - Daniel

Me (Daniel Newall) and IBD Surgery Blog – Part 1 Pre Op

So here I am just one week away from my surgery. After two years of struggling and a year of diagnosis there is finally a light at the end of this horrific tunnel. Having had every single drug on offer to try and control the disease nothing has worked and this is the only alternative left. However it’s not that straight forward, I have really made my doctors and consultants earn their money on this one. 

From day one with UC the rare complications that seem to evade others have happened to me from gall stones and pancreatitis to kidney stones, and most recently and most serious, that has even delayed my original surgery pulmonary embolisms (blood clots on the lungs to you and me) each are easily the most painful experiences of my life! So two days before my big op I have to have an IVC filter fitted to prevent anymore colts from travelling to my lungs, brain or heart, which is potentially life threatening. 

The feelings I have now are more of relief and excitement rather than or anxiety and fear, they never really came into it for me. The bag again doesn’t really faze me at this stage I am very accepting of it if it will help me to get my life back. If the bag allows me to go out when I choose, get back to the gym and exercising then I will be very happy. Having been through every procedure that a colitis patient could go through the operation doesn’t really bother me to much (but I’m sure the day before I wont be saying that and wont be getting a wink of sleep). The fear that I do have is that this will not happen and I will still be in pain, still not be able to go out and that it could then be something else.

Growing up in a rugby mad town like Widnes with a Dad who’s played at Wembley all I have ever wanted to do was be involved in rugby either code, having played union for Widnes and representing Merseyside and Lancashire and watching League and the Vikings for over 13 years now, I know now that is almost impossible in terms of playing, however my focus has now switched to coaching something that is very possible and something I am very good at. However year of struggling to make it into university and not participating fully in my course (Sports Coaching Education) is extremely frustrating and is also hampering my studies and stopping me develop and improve as a sports coach. 

Edge Hill University sports staff have been fantastic with me!! Offering me one to one sessions in their own time to help me catch up on things that I'd missed (a luxury that not every student gets). But since mid 2011 there has been no drinking but no hangovers so it’s not to bad. Still not being able to go out and socialise and generally have fun is hugely depressing. An 18 year old lad with his whole life ahead of him and an exciting chapter of it about to begin shouldn’t have to be worrying about disease and hospital visits. What I'd give for the problems of a normal teenager, hangovers, girls all stuff that doesn’t really matter I guess. 

When I was first diagnosed with UC I completely underestimated the disease and how

bad it could get. I found it extremely hard to talk about and didn’t want people knowing about it, however that became almost impossible and as you can tell gradually changed to where I am now the complete opposite and would advise anybody to just come out and tell people it’s so much easier. Telling people made everything a lot easier to be honest, not having to hide things just made it less stressful and who cares what people think anyway nothing I can do about it anyway. Most people don’t judge and just say do what you need and try to help as much as possible. With a fantastic bunch of close friends around me all encouraging me and even been called an inspiration has really kept me going strong. 

Undoubtedly, without the help of my fantastic family taking me to appointments, getting medication and having to live with this disease in their lives (which I feel is something that gets forgotten) I don’t know what I would have done. I don’t think that people without the disease can understand how it makes you feel and the effect that it has on your life. The potential embarrassment, the disgusting feeling which I can only describe and someone trying to ring out your bowel like a wet towel and the urgency is something people don’t understand and I wouldn’t wish it upon anybody.

So that’s that, hopefully in a few weeks I can get back to you with part 2 post op with everything been a success.