Continuing to drip feed you bits and pieces we've had smuggled away in the doctor's notes! This time it's a harrowing, yet inspirational 'Me & IBD' with Bethany Gallagher aka The Foul Bowel on Instagram. If you already follow Bethany on Instagram you'll fully understand that this girl doesn't let IBD get in the way of her having fun and living life to the max! So here's her story, guts 'n' all! Despite everything she carries on shining.
My name is Bethany Gallagher, I'm 23 years old and I was officially diagnosed with Crohn's disease in 2011 when I was 16. However, that's not truly when my IBD journey began. At 15 I began getting acid reflux, I would get it regardless of eating. I went to the GP who gave me Omeprazole tablets to help. I went away and the reflux got worse but with that came stomach cramps . The cramps started off bearable but soon became that agonising they would cripple me to the point I could not go to school or get out of bed. I returned to the GP who then gave me a stronger antacid tablet.
At home things went from bad to worse, the pains became stronger and then I started with diarrhoea 25+ times a day, I lost 3 stone in a month and was quickly getting sicker. My mum got worried and fed up of the doctors not doing anything so took me herself. She explained my weight loss and my other symptoms and the doctor diagnosed me with anorexia. I protested and told them I wasn't anorexic and I wasn't hurting myself, and that it was all out of my control. The doctor said I had to gain a certain amount of weight in a period of time, or I would be admitted to hospital and fed through a tube. I returned home and my stomach pains became so intense I began to collapse. I was rushed to the children's A&E where the true journey began.
I already suffered from JIA (juvenile idiopathic arthritis) in all my joints so the hospital could not ever rely on my inflammation markers to help them diagnose anything. I was admitted for just over a month, given a morphine pump, they began to run tests and scans and eventually I had under sedation an endoscopy and colonoscopy (camera up and down) where they found active Crohn's disease in my small intestine. It was diagnosed a day after my 16th birthday which i celebrated in hospital. After being properly introduced finally to a gastro team we began my first treatment of alicalm. A liquid diet supplement for 6 weeks where I could eat and drink nothing other than the special formula and water to help rest my bowel and give it the stuff it needed and help me gain weight. I lasted 3 weeks out of hospital on it before I was readmitted. I was in hospital a week and discharged with a plan to start a drug infusion called Infliximab. My first infusion was on Christmas Eve. I remember hearing rumours that it was a 'miracle' drug. We were all so excited for it to work. I went to the day case unit, sat for 8 hours while this drug was pumped into me. I went home and all hell let loose, I began vomiting luminous green stuff, running to the toilet, and collapsing in agony. I was up with my parents all Christmas Eve.
On Christmas morning I was rushed back to A&E and admitted for another month, where they controlled my pain. I was released for a week where I waited to have my second infusion before I had it I was rushed back to hospital where they did a CT scan. That same day I was told my small bowel had perforated and that it was leaking toxic waste into my liver and other organs, and I needed emergency surgery. They told me I would likely need a blood transfusion and a stoma, I was lucky and a few hours later I woke to find a pretty big scar but no stoma. I had almost 3 foot of small intestine removed and my appendix had ruptured as well, due to the leakage so that was removed. After that I spent a few weeks in hospital recovering from surgery and an Ileus. An Ileus is where your bowel goes to sleep so doesn't wake up, meaning bile won't drain from your stomach so it has to be drained for you until your bowel works.
After a hellish 2 years I felt like myself again, I was put on injections of Methotrexate to help keep my Crohn's, and JIA in remission. Although this drug kept everything at bay, it made my day to day life terrible. The side effects were awful. Methotrexate is a drug often used after chemo, and it made me physically sick. My Crohn's fatigue was so much worse when taking it, and my hair began to thin and fall out. Despite my Crohn's being in remission I still struggled day to day with its effects. I went to the toilet around 6 times a day, which for me became my normal, along with bouts of severe and overwhelming fatigue. After Methotrexate I tried the drug Humira which flared my joints, and I also tried Sulfasalazine, Cimzia, Methotrexate again, Azathioprine, and many many more names that I have forgotten, because the all end in 'mab' and never worked. Despite all my treatment changes I stayed in remission with my Crohn's for 5 amazing years, I just suffered badly with my joints instead.
In 2016, my world fell apart once again. A similar pattern started with acid reflux, abdominal pain and diarrhoea. This time I had a lot of blood and mucus in my stool. At first I tried to push through and hide it, to the point I'd hide in the toilet and cry in pain at work before returning with a smile. I couldn't go on any longer and was admitted into hospital for 2 weeks. I was put on an IV of steroids which seemed to help, and put on 40 mg of Prednisolone steroids for 8 weeks. Bang on 2 months later after the steroids finished I was admitted again for 2 weeks, and the same process happened steroids and tapering off them. After 2 months I was admitted again for 2 weeks with steroids, however this time they gave me a colonoscopy and CT scan which showed exactly where the active disease was. It was in my small intestine just where my resection join was but most horrendously in my colon. The gastro team decided to try me an on Infliximab again, but unfortunately I had an anaphylactic shock and that was the end of that drug for me. I continued with steroids that Christmas, and just before New Year I was admitted to hospital for the 5th time that year. This time however I was very sick, having to use the toilet 30 plus times a day. I was soiling myself and had abscesses on my bum, I weighed 5 and a half stone and no drugs not even steroids were helping. During this 2 month stay in hospital I was constantly on IV steroids and began a liquid diet to try and help me, but nothing worked. Further scans and camera tests showed the steroids had helped my small intestine but I'd now developed perianal Crohn's (Crohn's of the rectum) as well as active Crohn's in the colon. My consultant said there was no other choice but to have an ileostomy bag. I quickly got my head around it because I was so desperate to be out of pain and get my life back, and I was put on a waiting list. However, I was so sick I ended up becoming an emergency. Due to scar adhesions, I had to have a foot of small intestine removed too. At last I finally got my stoma and felt huge relief. Unfortunately I developed ileus again after surgery and after a few months of healing, I began to get my life back and learnt to love my second chance and love my bag.
In December of 2017 not even 9 months after surgery my Crohn's disease flared. This time it was bigger and badder than ever. I'd developed diversion colitis, which is where your bowel creates inflammation due to being disconnected and not receiving the nutrients it would from poo. I began to bleed from my bottom around 50 times a day, and in January 2018 I was readmitted to hospital. I remained in hospital for 3 weeks, again place on steroids. I had a camera that showed the disease had spread to my colon and large intestine. I was discharged on steroids again and in early February I was rushed to hospital with flu. Only being in hospital a few days I started to bleed 50 times a day again, to the point I had no control over it and would pour with blood. I had to wear a nappy at the age of 23! Due to bleeding I kept passing out and wasn't allowed to walk on my own, or go to the toilet with it locked. I spent 3 more weeks in hospital before I was rushed into theatre to have a total colectomy. Total colectomy is when the surgical team removes your entire colon, large bowel and rectum. They also gave me a new stoma, however when I woke from surgery very ill. It turned out that the week before surgery, I had developed sepsis, but they didn't know. I went into surgery with Sepsis, so came out with it but worse. I was put on 2 strong antibiotics for 2 weeks. Due to my surgery being an emergency, I woke up with a NG tube up my nose, general anesthetic tubes into my stomach, a drain from my stomach, 3 cannulas, a catheter, a morphine pump and ketamine pump (a lot!). After recovering from the Sepsis I developed pneumonia, and finally after 6 long weeks in hospital I was discharged.
It's now been 5 weeks since my surgery (March 2018), I honestly thought I wouldn't get through it, and although it was extremely touch and go at times I made it. My wounds opened up after leaving hospital but are finally closing and I have say I see light at the end of this long tunnel. Crohn's disease has tried its very best to kill me on more than one occasion, and unfortunately i know it was strike again, but believe me when I say "It will never ever win!"