Clemmie was diagnosed with ulcerative colitis in 1999. In 2001, she had a total colectomy and ileostomy. Eight years later and aged 18, they took away her stoma and formed an Ileal Pouch Anal Anastomosis (IPAA) or J-pouch. Now Clemmie is a Qualified Nutritional Therapist, to help improve the quality of life of people with IBD and IBS. Here is her story.
I had J-pouch surgery in two stages: In January 2009, they created the internal J-pouch. To let my body get accustomed to the new plumbing, they fashioned a new stoma while the pouch healed. 3 months later, I went back into surgery to have the second stoma site closed and be able to use my pouch.
I always knew I would have a J-pouch. Whilst all my friends were planning their travels and next steps after school, I was prepping for surgery. The night before the big day, over dinner with my family, my Mum said, “are you ready? Have you prepared yourself mentally for what’s happening tomorrow?” I remember, thinking “huh?! I’m fine, why do I need to prepare myself for this? I’ve been ready for years.” But, of course, as Mums so often are, she was right. I’d been working nonstop, and kept myself so busy I hadn’t given the surgery a second thought.
When I arrived for the first surgery, a nurse handed me a hospital gown. I remember it like it was yesterday; going into the bathroom and putting it on. I turned around and caught my reflection in the mirror. Then it hit me. I walked out, saw my Mum and burst into tears! It was a mixture of the fear of surgery and walking into the unknown. But mostly, it was coming to the conclusion I was totally unprepared. I was still crying when they took me down to theatre. Constantly apologising through my sobs for being such a baby. The nurses were so supportive; telling me not to worry and reassuring me they often get older tough-looking men in tears!
The next thing I recall, was waking up from surgery.
The first surgery shook me, physically and mentally, and I found recovery really challenging; mostly the bloating and fatigue. After lying on the sofa for weeks not believing I could do anything, my Mum dragged me off the sofa for a little outing. Then every day after that we would do little outings together. It helped me so much. Slowly but surely, I started to feel better again and grew in confidence to go on longer days away from the safety of the sofa.
Now it was time for the second surgery! In April 2009, after eight years of having a bag, my stomach was bagless! Waking up with no bag was so strange. Not to mention, pooing for the first time in eight years was even more strange. But it was also an exciting experience! It took a little while for things to settle down and to get used to the sensation of needing to poo properly again, but by October I felt strong enough to start university.
Things were going well with the J-pouch until I contracted norovirus in the Spring of 2010. I was ill for about a week and never seemed to fully recover. I lost my appetite for about six months. Loosing one and a half stone (9.5kg/21lbs). I struggled with bloating and felt sick every time I ate, but I pushed through it. Determined to finish my degree. I moved to London after university and took on a stressful job in PR. Meanwhile, my health started to deteriorate further. The sickness became unbearable. Every time I ate it put me off food. I continued to lose weight and started to lose my hair. I had lots of tests and was told it wasn’t pouchitis and everything came back as ‘normal’, but I knew something was wrong. My doctors put it down to Irritable Bowel Syndrome (IBS). They said it was probably just part of the surgery I’d had and I’d just have to live with it. I felt completely helpless and wondered how I was going to continue feeling that way. As a last resort I went to see a nutritional therapist.
The only dietary advice I ever had was when I left hospital after my J pouch surgery was:
1. Eat more salt. A packet of salted crisps a day would help.
2. You don’t need to drink as much water as everyone else because I didn’t have a colon.
Not much in the way of advice, knowing what I do now.
I’d always been told food wouldn’t make a difference to my UC, so I was pretty dubious about seeing a nutritional therapist. But I didn’t know what else to do. Turns out I was so wrong and she completely changed my life. We looked at my diet and lifestyle and she explained to me how the way I was eating and living wasn’t helping my gut. She made me realise that, although I had surgery to remove my colon I wasn’t “cured”, and that I would have to look after myself better. We made changes to my diet and within two weeks I felt better.
I wondered why I hadn’t been told about the impact of a positive diet and lifestyle. I was angry that I was allowed to suffer for so long without knowing what I could do to help myself and wondered how many other people with Crohn’s and colitis were in the same position. I was so inspired by my experience that I quit my job in PR and trained as a nutritional therapist. Studying for 3 years at Institute for Optimum Nutrition. I felt I had to help others with IBD; just like I had and spread the word about how important diet and lifestyle are for these conditions and for our health.
I loved my stoma bag. It saved my life. Now, I love my j-pouch. I have a passion, focus and drive that is stronger than ever to help others with IBD.
Get in touch with Clemmie via Instagram. Or click the link below to see the amazing work she does for IBD and IBS patients.
Nutrition and Lifestyle Medicine Clinic Ltd.