Coping | IBD | Ostomy
After having bouts of gastro and misdiagnosis of Irritable Bowel Syndrome (IBS) – I changed doctors and I was diagnosed with Crohn’s Disease April 2005. By this stage, I was constantly in a lot of pain and had a hard mass in my abdomen. I couldn’t even eat soup some days without a reaction and had diarrhea daily. In August, I was admitted to St Vincent’s Private Hospital in Melbourne and had my first bowel resection. My bowel stopped working for a couple of days so I was in hospital for a long 8 days and 8 nights. It took me a good 6-12 months to get over that operation. I was left angry and confused and not really understanding the disease at this stage.
I didn’t have any flares for 18 months but at the time I thought I was ‘Crohn’s free’. I also didn’t stop working two jobs and doing my music. Working two jobs allowed me to fund my music and I also was very good at pushing the limits. Living on adrenalin only lasts for so long. In 2009 we got married and I had a very stressful boss to deal with. I started getting sick throughout this year and had pain in my rectum. By the end of the year I was hospitalized and my surgeon advised me I had severe rectal Crohn’s. I still didn’t quite understand what ‘severe’ meant though. Took me a few years to actually live through severe Crohn’s to admit that’s what it was. It became my life; constant diarrhea, pain and bloating. I didn’t even take Paracetamol either, just endured the constant pain and discomfort. At times, I could barely walk.
Although I was working full time in a government role in 2010 this didn’t last and I had to reduce my hours throughout the year. By March 2011 I was so ill, I was in and out of the hospital every couple of months having scopes to keep an eye on the rectal area. The ulceration in my rectum was damaging my sphincter and other rectal muscles. I also had a brother battling cancer and after sitting with him until his last breath over in New Zealand I had to fly back to Melbourne the next day in early May, as I was being admitted into hospital that Monday for another scope. As they wheeled me into theatre that Monday morning I was crying so much. I was so filled with grief. I had only seen my brother four months earlier at Christmas and the shock of his skeletal frame and his death was just too much to handle.
They did a Flex-Sigmoidoscopy (which is a scope of the lower region of the large colon/rectum) and my surgeon suggested I would need to get an ileostomy bag to give my bowel a rest. A stoma therapy nurse visited me but I was so not in the headspace for it. I just didn’t want to know about my Crohn’s and certainly not about getting a bag.
In November I was hospitalized again. The pain was horrific and I was having accidents up to 5-6 times a day. I had lost my control of my bowel for most of the year. I was beyond being embarrassed about having accidents, as the pain and smell were awful. I constantly had to wear thick pads and have spare underpants handy. So in November, they changed my injection drug and I was on the last option ‘Infliximab’ or Remicade. My surgeon warned me that if this didn’t work I would need to get a bag. Again I refused to know about it. I had changed my diet and lifestyle, EVERYTHING over the last year but the Crohn’s just got worse. I tried cutting back gluten, dairy, alcohol, sugar and caffeine again. Instead of improving, I got worse. I tried so hard to find something that would ease the symptoms but nothing worked. Looking back, I really didn’t want to admit that I was in that severe category either. I had also spent thousands of dollars on alternative therapies too like a homeopath, herbalist and naturopath.
I had 3 good months with my health over the Christmas period on the new infusion drug. I hadn’t felt this good in over 2 years. I was able to go out and see friends without worrying. I started swimming, for the first time in years! My docs had warned me though that my colon was closing up in places, as some of it healed over, so waste couldn’t push through as easily. So I started blocking up and having problems.
I finished my government contract end of March thinking a couple of months off would help. But instead I was hospitalized early May 2012 for three nights to get things under control. I had spent a week in bed vomiting and having almost like convulsions when I went to the toilet. The Crohn’s was also throwing off secondary inflammations too, so I was getting arthritis in my legs and body sores all over me. I had four dermatologists inspect my body including my vagina and bottom. It was quite invasive but I was so sick I just didn’t care.
I had my ileostomy operation May 9th and was in hospital 13 days. My bowel stopped working for 5 days so I ended up having a Naso-Gastric tube down my throat. The pain was horrific with the wind build up and until my stoma started working I had a bile build up and I was also still emptying my colon so my bottom was very sore. I did recover well from my ileostomy and adjusted to my bag slowly. But I also developed a rare condition ‘Pyoderma Gangrenosum’ which ulcerated around my stoma. Awful pain and the ulcers would weep so I had to change my bag daily.
I finally got some part-time work 6 months after my operation and things settled down. Unfortunately the ulcer in my rectum did not. As my colon started closing up I was getting a build up of mucous and bloating. I put on way too much weight despite going to the gym and swimming.
After a number of dilations and scopes my surgeon and I booked me in for a Procto-colectomy. So July this year I had my colon and rectum removed. The operation went really well and I was only in hospital a week. Both my surgeon and I feared that my small bowel would go to sleep like with the previous operations, but it kept working this time, which was a huge relief.
About a month after though, my whole rectal wound opened right up and I was readmitted three times to have a vacuum dressing installed – which is one of the most painful experiences ever. I had this vac dressing in for over a month with home nurse visits for most of it. My rectal wound also bridged over at one point so I had to have this opened up again and spent 9 days in hospital with the vac dressing installed again.
I have spent 34 nights in hospital over the last few months. At times I didn’t want to go on and the only thing that kept me going was the fact that my Crohn’s is in remission, for the first time in over a decade. My whole spirit has been tested and it took every bit of strength inside to keep going. I still break down and cry at times but just allow for these moments.
I do love being an ostomate and I would never want to live any other way. I will never forget the pain and just how debilitating this disease is. I may have been to hell and back a couple of times over the last 18 months but to end up where I am today is a good place. I am now back at work part time and doing gentle workouts at the gym. Next year we hope for me to fall pregnant and do all the ‘normal’ things we have missed out on in the last 4 years like ‘buy a home’ etc.
I released a song in September that I wrote in hospital to raise awareness and it is on my youtube:
I have also kept video blogs of the last 18 months, mainly for my own therapy but once I made them public, it’s been incredible receiving the response from people – most cry when they watch them. I don’t want sympathy just empathy and understanding.
These video blogs are very raw and honest and some of them contain coarse language:
I am now hoping to get involved at my hospital to help others. Shortly I am speaking at an IBD seminar to share my experience. I feel, particularly through the last few months, that it’s my turn to help others and raise awareness of how debilitating this disease is.
I’m so sorry to hear your hell, bow ever I can relate. I gave in and had my colon and rectum removed last October after 21 years with Cohn’s. I did not know the rectum could open and all that could happen. I’m glad I read your story. Thank you!!
Just watched you’re entire set of blogs. Holy shit, love the Aussie accent. In love with being in love with Australia. I wish I were there. I feel like I know you. I’m going to look for you on Facebook…… Drugs & Hugs,