#thisisSarah

Otherwise known as the bag lady! Diagnosed with Crohn’s Disease at age 16, little did I know how much of an uphill struggle my health would be. Endless failed medications and 9 or 10 surgeries later (I have given up counting now), I have no colon and 120cm of small bowel remaining. 

My absorption is minimal, leaving me requiring home parenteral nutrition 4 times a week and fluids as required. Has it changed me? Of course, it has! Mindset has a huge bearing on coping with a long-term illness. I have always remained positive. I am not sure if I would have coped any better had I been prepared. I do question the months of delay in getting the care plan and homecare company in place. This put an extra strain on family and work life, both of which I have strived to maintain despite chronic illness. 

Following a planned surgery to fix a fistula and remove (another) area of diseased bowel, I woke to be told that the surgeon was worried about my absorption. After an 8–12-week stint in hospital, I was discharged and determined to get on with my life. I was attending a local hospital and having fluids and electrolyte infusions (magnesium and potassium) 3 times a week through a peripherally inserted central catheter (PICC) line, as well as maintaining my oral medications. As a family, we went on a narrowboat holiday (something I am very passionate about, currently owning shares in a narrowboat with a longer-term plan of living on one…) and towards the end of the holiday I was feeling weaker and weaker and suffering with inexplicably painful cramps. My husband decided to cut short our holiday; on the way home my spasms became worse and my speech became slurred. I thought I was having a stroke. Whilst trying to hide the symptoms from my kids, I hobbled into A&E at my local hospital, where I received treatment for my Crohn’s, and it was determined that I had a severe calcium and magnesium deficiency. After weeks of bringing my bloods back to normal, and on extreme fluid restrictions and restrictions on all oral intake, I was transferred to a specialist centre for intestinal failure where I spent a further few months waiting for homecare and parenteral nutrition to begin. My PICC line was removed and a Hickman line put in. Upon discharge and arriving home, I recall a mountain of equipment and how overwhelmed I felt at the prospect of being taught to care for myself and administer my feeds and fluids. The nurses were so patient, and I cannot thank them enough for giving me my freedom back. I went back to work (doing finance in a school) before securing a job doing payroll from home for the Youth Hostel Association. This worked better with managing my feeds and fluids and balancing rest with work during the day. I was very upfront about my illness, and they have been so accommodating and supportive. I often work from hospital. I have been admitted numerous times with line infections and have had my Hickman line removed and replaced recently. I have my moments and days where I cannot be bothered to make an effort and go out with my fluids running, and I often have moments of an evening, after a hard day at work, when I literally don’t have the energy to put my feed on. Then I look around at my amazing family and the life I have made. I realise that I have been given an extra chance at life and I have to take it. Life isn’t always fair, but it’s adaptable and it is what you make it. Ten years ago, when I had my ileostomy, I thought things were tough and that I would never adapt to the new me. Fast forward 10 years and the ileostomy is the least of my issues. My newest bugbear is getting my PN tubing stuck in the car door whilst taking the kids to school! Bag lady by name and by nature! The comments from others include “are you going hiking”, “got your parachute on, haven’t you” and “Bear Grylls”. I just smile and nod. People just don’t know how to handle things that are not “the norm”. It is my normal, and if you are reading this, it is probably normal for you too. We have to own it and help the system to improve for the future. One of my biggest ambitions is to have a person with an ostomy on every toilet door and to have more fashionable bags for carrying our feeding equipment. I have contacted both PINNT and Crohn’s and Colitis UK to try and spread my positivity and help others who are newly diagnosed. We are looking to set up meetings in the Birmingham area. Power is knowledge and sometimes a problem shared is a problem halved. So go on, paint on your lipstick and put your best dress on, because living with PN isn’t a negative. It is something to be proud of. Proof of your refusal to give up and your determination to not just survive but to live each day to the fullest. My family are my biggest motivation, and my husband is my best friend. Without his support I would not be here today. Fancy dress parties and Halloween are easy now anyway – bionic woman anyone??!