My Name is Katy Jenson
I’m 30 and from Fife in Scotland and I work as a Senior Support Worker. I was diagnosed with Crohn’s disease in 2011 following a colonoscopy. I experienced symptoms such as severe abdominal pain and diarrhoea for a number of weeks before I decided to go to my GP. Luckily I was diagnosed relatively quickly, I have a fantastic GP and she referred me to gastroenterology promptly.
For several years I plodded on, trying out all sorts of medication – firstly Pentasa and Prednisone, which put me almost into remission but as soon as I tapered my steroids I would flare again. I detested the steroids, I always felt the side effects I experienced were much more severe than my actual crohn’s symptoms. After almost 18 months on and off prednisone my consultant decided I was not responding to them and offered me the chance of Infliximab. I jumped at the chance and had 8 weekly infusions for over a year. Then during my 8th dose I suffered an anaphylactic attack – I couldn’t breathe, went bright red, felt dizzy and as though my head was going to explode. I was deeply disappointed I could no longer continue to use Infliximab, it had put me into remission and I felt as though I was able to live a relatively normal life. Following this I was moved onto Humira. After around 12 months this was deemed unsuccessful and the prospect of surgery was discussed in 2015 to remove my large bowel. I hated the thought and couldn’t bear the idea of having to live with a stoma bag I was distraught. However, I was given the chance to try out the latest biological drug on the market in November 2015 – Vedolizimab, after just being approved in Scotland in May of that year. I was the first patient in my area to receive the infusion. This was done under the watchful eye of my IBD nurse who literally sat by my bedside and stared at me the whole way through the infusion for fear of another anaphylactic attack! Luckily there was no such drama and I received around 7 infusions – unfortunately with no real signs of improvement. My disease remained active, I was constantly up to the toilet around 10-20 times each night and around 10 times during the day whilst working 12 hour shifts in a residential care home. It was really tough, I was very fatigued and generally just felt absolutely drained. I was fortunate enough to experience very little pain and cramping associated with my crohn’s so I always felt blessed in that department.
In November 2016 I met with my IBD nurse who informed me I had been discussed at an MDT meeting and it was agreed I would have another colonoscopy. This time it would be undertaken by a surgeon who would be doing the procedure with the view to removing my large bowel as I was unresponsive to Vedolizumab as well as Azathriopine which I had been taking for almost 4 years. I cried when I heard this. This time, tears of sheer relief. My IBD nurse told me that if the surgeon felt my large bowel had to be removed then I would be left with an ileostomy. Feeling defeated in my fight against crohn’s I felt I had to go ahead with this. I needed to take back some control of my life, or my bowels, so to speak. The crippling anxiety I experienced every minute of the day was horrendous. I avoided a lot of social situations, I hated going anywhere unless I knew there was a toilet in very close proximity. The waves of panic and helplessness that would wash over me if I needed to use the toilet and if there was none in sight it was just awful. My anxiety made my IBD worse and in turn my IBD made my anxiety worse.
My colonoscopy was done and dusted in November 2016 and the surgeon decided I should enjoy my Christmas and he would meet with me in 3 months time to see if there was any more success with the Vedolizumab. By January, I was begging my IBD nurse for an appointment with the surgeon and desperate to have the surgery and get some of my independence back. After a long meeting with the surgeon, stoma nurses along with my Mum and husband it was decided I would have my surgery in the coming 2 weeks.
I went into hospital on 28th February for the removal of my large bowel. That morning I was extremely nervous and again chained to the loo, this time in the hospital waiting room. I was there so long the stoma nurses had tried phoning me wondering where I was as the surgeon was waiting for me! We went through all the final checks, including measuring me for those gorgeous white support stockings and marking on my ‘ileostomy’ on each side in permanent marker. I was ever so relieved when the nurses didn’t tick the box on the patient information form for ‘pendulous breasts’ I really did feel quite smug about that!
Surgery took around 6 hours and was keyhole. I woke up in HDU, the pain was well managed with morphine. I had the added bonus of a catheter so not only did I not have to get up numerous times during the night with diarrhoea but I didn’t need a wee either, result! On my 5th day in hospital I was allowed home. I had changed my bag on my own on the 4th day and the stoma nurses were happy with my progress. I went home on the Friday afternoon, relived albeit a bit sore, but with great appreciation for my ileostomy.
Already I felt a huge weight had lifted off my shoulders and felt so much better and eager to make a full recovery and get back to work. However, the two weeks after I got home were extremely difficult. Day one after discharge I experienced 6 bag leaks, I couldn’t get my bag to stay on without leakage from the right hand side where I had my small scar and the output was seeping right underneath. On the Monday morning I called my stoma nurse and was given different bags as it also came to light that I had been allergic to the first ones too. Two weeks came and went and every day my bag leaked, my skin was blistered and raw. It was painful and getting worse each day with the constant leaks. I was trying numerous bags and support belts and then was moved onto a soft convex bag then a firmer convex bag. During another visit to the stoma nurses I met with a different nurse who explained that she felt my stoma had retracted inwards and that’s why I was experiencing leaks constantly. I was informed they wanted me back in to refashion the stoma. My mum and I left the appointment and I sat crying in the car park, not a tissue to hand I ended up bubbling into a pair of ‘emergency pants’ I always carried pre ileostomy for any accidents – knew they would come in handy!
I met with my surgeon the next day and was taken in for emergency surgery the following day. He informed me that he would pull my small bowel out a little more and make a loop ileostomy this time. He explained he was hopeful it could be done by keyhole surgery again but sometimes this is difficult so soon after surgery and he may need to do it as open surgery. He explained he didn’t need to make a large incision, only big enough for his hand to fit in. Looking at the size of his hands, I explained I was very relieved he had small hands! Open surgery it was and 5 hours later I had a loop ileostomy. Much more co-operative than my first stoma, we got on well and it behaved perfectly. Another 5 days spent in hospital and then I was allowed back home. The pain was much more intense this time, and I was off work for around 8 weeks. The recovery process was much slower than with the keyhole surgery and combined with the fact I had two operations and so close together.
My family have been amazing through the whole experience, particularly my Mum, Sister and Husband, Paul who never left my side and were always there where I needed them. I was a high maintenance patient and Paul is particularly pleased I’m back to full health as he was struggling meeting my constant hoovering demands! The stoma nurses and the surgeon were also fantastic and they made such a difficult experience, so much easier. One of my stoma nurses told me my loop ileostomy reminded her of a pair of lips, it was from then I decided to nickname him ‘Mick’ after Mick Jagger and his rather large lips.
I am so proud of my stoma, it has given me a brand new lease of life. I can do as I please, when I want. Before surgery if I had anywhere to be in the morning I would have to be careful of what I ate and drank, avoiding particular foods too. Long car journeys and holidays were a particular nightmare, not being familiar with where the toilets were sent me into meltdown. I have just had a summer full of adventures, including Belfast for a week for a friend’s wedding and to the men’s semi finals at Wimbledon and I have just returned from the Moto GP at Silverstone – which was an absolute doddle compared to every other year I have been. No stress about traffic jams, toilet queues and portaloos! Living near the beach I have always loved to go for long walks. However after my diagnosis this was a complete no no. As soon as I got only 500 yards or so from my house my stomach would be in knots, that massive lurch followed by the 10 second window to make it to the toilet in time. It was never worth the hassle and I never wandered far from a toilet, at any time. However, now I love to walk for miles and miles and one of the first things I done once I got out of hospital was take a short walk down to the sea front.
I have given the last 6 years of my life to the disease so now it feels amazing to have started anew. Looking back, I am probably most proud of the fact I have held down a full time job working 12 hours a day, getting through the day on only a few hours sleep at night in a constant state of fatigue. Looking back now, I have no idea how I managed! The lows of the surgery were the complications from the first surgery although this was addressed pretty quickly. Followed by suffering from an abscess and septicemia around 6 weeks after my open surgery. After returning back to work mid May (I was desperate to go back) but after only a week or so back at work I was feeling twinges and experiencing pain around my abdominal area. I then began experiencing a heavy dragging feeling, having been pre warned about para-stomal hernias, particularly because of having two surgeries and the line of work I was in myself and the stoma nurses and my GP were almost sure this is what I now had.
I was referred for a CT scan and had an appointment for 2 weeks later. The pain was becoming so intense and worsening by the day. There was a very hard round shaped growth behind my stoma which was growing bigger each day too. It was becoming heavier and heavier and it felt like I was dragging a bowling ball about beneath my bag! I was devastated at the prospect of a hernia and felt very low and upset by the prospect of this mainly due to aesthetical reasons and the constant pain I was in. I remember thinking I couldn’t possibly drag my stoma around for the rest of my life! By the Sunday I could hardly walk the pain was so severe. I went to work in the morning, determined to see out my last shift before I commenced my annual leave the following day.
I had to give in 2 hours into my shift and ended up in A and E. I went into a side room to be checked over by a triage nurse who wanted to see my stoma.
I lay on the bed and removed my bag, what happened next will remain with me forever. As soon as I removed the stoma bag a huge stream of hot green pus streamed everywhere, the smell was foul and I couldn’t get it to stop or get a new bag back on. My temperature reached 40c and the pus continued to seep out for 12 hours solid. I was diagnosed with septicemia and sent for a CT scan shortly after. The CT scan showed a peri-stomal abscess just beneath the skin. I was just so relieved it wasn’t a hernia and was treated with 3 different types of IV antibiotics. In the week before my admission to hospital with the abscess I couldn’t bend down because the pain was so bad, so shaving my legs was out. A week on and they were unkempt to say the least. You can imagine my horror when the loveliest looking doctor came round and confirmed my diagnosis in A and E, as well as searching my feet for a vein for my cannula as there was no luck elsewhere. Inches away from my unshaven legs, I was horrified. A harsh lesson was learned that day, peri stomal abscess or not – never forget about your maintenance and always keep on top of the shaving of the leg routine! Another 5 day stay in hospital under my belt I returned back to work 3 weeks later at the beginning of June and have had no further complications since.
I really struggled with changing my bag myself following my first surgery – this was only after my first weekend at home and experiencing 6 leaks in one day. This really knocked my confidence and felt this happened because I wasn’t putting the appliance on properly. My Mum was so helpful and supportive during this time and for around 4 weeks after my second surgery she changed my bag every day for me. Before I eventually felt brave enough to manage on my own. Now I’ve got it down to about a time of 2 minutes flat and feel I have perfected it well!
Despite what I would describe as a bit of a bumpy journey I have never once looked back or regretted the surgery. It has been the best thing I have ever done since diagnosis.
My advice to anyone who is in a similar situation to me and has been through the struggles and woes of IBD is not to look at having a stoma as a negative. I was worried about how it would look, would you see it through my clothes, would the bag have a constant smell that others around me would be getting a whiff of? The answer is; I love my stoma and fully embrace the new life it has given me – it looks perfectly fine, no you can’t see it beneath my clothes and you definitely cannot smell it.