My name is Molly Belding and I am 19 years old and I have had Crohn’s disease since the age of 11.
My main symptoms were severe stomach pain, diarrhoea, blood, mouth ulcers and pain from head to toe!
I think my Crohn’s was masked due to the fact I was suffering from M.E. (Chronic Fatigue Syndrome) at the same time. My body was taking a real battering and my weight dropped until I was skin and bones.
My education ceased from year 6 until year 10. I was so weak and unwell that I was unable to even wash my hair for 6 months. I was bed-bound and I really couldn’t see the light at the end of the tunnel. At one point I was so weak that I was admitted to hospital for 6 weeks to try and regain my weight – I was put on the Elemental Diet (a purely liquid diet) for 8 weeks and that soothed my Crohn’s symptoms.
I have had so many tests and medications that everything seems to have become a blur – dates are hard to distinguish. I have been on steroids, Prednisolone, Aziathioprine twice, Pentasa sachets for years until recently. I have had numerous Colonoscopies, two Barium meals, X-rays, MRI scans, Ultrasounds and other undignified probings! I have had two major flare-ups of Crohn’s – both involving hospitalisation and medication change. The last one – two years ago, involved changing my medication to Infliximab infusions and it has been incredible. I have been in remission since – long may it last! I now go in to hospital for the day, every two months for my infusion and that is my only treatment for Crohn’s now!
But as you are probably wondering – why was I faced with the decision of whether to have a stoma or not? Well, as I suffered from Crohn’s so severely, I was left with internal scarring to my Colon and Rectum. This caused very unpleasant and life-altering symptoms such as Incontinence and the feeling I needed to go to the loo all the time. It started at school in years 10 -11, a crucial time in any teenager’s life with GCSE’s coming up but I had to also catch up with my studies as I had already missed the previous 4 years. I persevered and didn’t fully understand that the symptoms were not normal until after a few months. I was using hundreds of pads and pants every week due to my symptoms and it was horrid – I couldn’t commit to anything, I had to be near a loo, I felt so self-conscious and it no doubt affected my friendships.
I told my parents and then spent 3-4 years visiting various hospitals and top consultants to see if we could find a cure for this problem. We eventually found a fantastic consultant at our local hospital that was honest and told me there were a few options to try but realistically having a stoma may be the best solution. I was in shock for many months at the idea of having a Colostomy – I thought only old people had them and the idea didn’t sit well with me. I tried two attempts at Sacral Nerve Stimulation (SNS) but both attempts failed so it was up to me – what was I to do? Actually, when the time came for me to make my decision – there was an obvious answer. I had suffered for so long with these hideous symptoms that I was really looking forward to the Stoma and my life being given back to me! However I did look at my tummy on occasions and take a mental image of what it looked like before my Op – sort of a ‘before and after’. Although since the Op I haven’t felt regret or sadness about my Stoma – it has saved my life so I am very grateful for that.
In mentally preparing myself for the Big Op on the 12th of October 2011, I saw a great team of Stoma nurses and asked all the questions I had, looked on the Stomawise website at inspirational stories and read many articles in Stoma-related magazines. At last the day arrived and it actually flew-by. I had surgery early in the morning so I had less time to think about it. The surgery took longer than planned – 7 hours later after very complicated key-hole surgery I awoke with tubes coming out of everywhere but I was relieved that it was done. Now all I had to do was recover and grab hold of the second chance at life I had been given. Of course nothing is that simple for me! I had a bad reaction to the Epidural which meant I struggled to breathe and I got severe cramp in my fingers and toes, that delayed my recovery by a day or two and I was so drugged up on painkillers that all I wanted to do was sleep! But I persevered and by the end of the week in hospital I was ready to go home. I adjusted to changing the bags really quickly and I am in such a routine with changing them now that it is natural to me. I am trying Irrigation next week to see how I get on with that. I have named my stoma Neville – I think it helps with the whole ‘bonding’ process and makes changing the bag more fun and light-hearted! Also it helps my family and friends feel more connected – they can have a laugh with me rather than feel awkward and feel they shouldn’t mention it. My family have been so supportive through these tough few months, in fact they have been incredible through all my ‘Ups and Downs’ – I owe a lot to them. They made me laugh when I was gloomy and held my hand when I was worried, so to them, I want to say a huge Thank You!
Three and a half months on from surgery and I can’t believe how far I’ve come. I have applied to University to do nursing which I am really excited about. I am determined to grab all opportunities by the horns and appreciate the basic things in life such as being able to walk and stand without disgusting consequences. I want all those people regardless of age who have to have a stoma or who have one already, to embrace their stoma and be thankful for the new lease in life it has given them. If everything in life came easily then we might get bored and take things for granted. I have had to work jolly hard to get to where I am so I’m going to be proud and hold my head up high! We only have one life – so live it to the full!