Gaining excessive weight after stoma surgery is quite a common complaint amongst the ostomy community, and it can be quite distressing to feel like you have lost control of another aspect of your life.
If you want to try and take that control back, first you need to be able to identify the cause. I asked the community what they thought the reasons were for weight gain after surgery, and this is what they said.
Dietary limitations
If your stoma has made it more difficult for you to get a balanced, healthy diet then that will obviously impact your weight in the long run.
Not having dietary limitations
The diseases which lead to stoma formation may have limited what you could eat, so many find that after the surgery and recovery, they can eat everything again, and so they do!
Dietary needs changing
When diseases in the intestine are active, it can make it hard to gain and sustain weight. So some people will have been on a very high-calorie diet pre-surgery. Continuing the same diet after surgery can ultimately lead to weight gain.
Emotional eating
Being stressed, sad, bored or even happy, can all lead people to make unhealthy choices about what food they consume.
Lack of exercise
Recovering from surgery means lots of rest, so even those that are used to regularly exercising have to slow right down. It can be really tough getting back to the same fitness level as pre-surgery, especially if you’ve been recovering for a long time. Hernia risks can also scare people out of doing a lot of physical activity for a while, which can make getting motivated even harder when you finally think you’re well enough. Simple steps is a recovery exercise programme designed to take new ostomates from surgery preparation right through to post-op recovery.
Changes in metabolism
People get told about this, but it is often phrased in different ways. I asked Laura at Ask a Dietitian to explain it properly, so, are you ready for some science?!
“Just after surgery your metabolism is increased meaning it can be hard to not lose weight. After surgery, your metabolism decreases and hunger hormone signalling can increase meaning it’s easier to gain weight. Having 3 meals a day, of healthy portion sizes can help you maintain rather than increase your weight.” – see Fittleworth’s nutrition guide for portion info.
“Having an inflammatory condition also increases your metabolism by ~10-25% meaning you need more calories than a ‘normal’ healthy person. After surgery, inflammation decreases, so your metabolism decreases. After weight loss, metabolisms also decrease. Lower metabolisms can make it easier for weight gain can happen.”
I have actually gained weight with my current stoma, which I’d never managed to do before; not even on the two occasions, I’ve had a stoma in the past. Initially, I loved it! I began to look like a woman rather than a child, and that made me happy, but it didn’t stop. Eventually, I was 16lbs heavier than I’d ever been, and 3 clothes size bigger. When I started having ostomy leaks because of the increase, I realised I really need to act.
My diet is much healthier now than it has been for a long time. Inflammatory Bowel Disease and strictures caused by scarring meant I had lived on a low fibre diet, and I had to avoid insoluble fibre altogether. The fatigue that came with active disease meant I didn’t have the energy to spend a lot of time preparing healthy meals either.
Now, my diet is full of vegetables and fish, and I have the energy to prepare balanced meals every day. I have slowly been increasing my physical activity, and I even managed to identify the culprit of the weight gain – too many carbs and too much sugar!
None of the above causes for weight gain are unsolvable, but just like with weight loss for normal, healthy people, it will take commitment, lifestyle changes, and probably even some trial and error.
Living as healthy a lifestyle as possible is the only real concrete plan in terms of losing weight and sustaining that weight loss. A healthy lifestyle is not just thinking about what you put in your mouth, but also being active and ensuring your psychological health is the best it can be.
I think checking in on your mental health is definitely a good place to start. The happier you are, the more likely you are to make conscious decisions about living your best life. Plus, you’re more likely to be able to motivate yourself! If you’re unhappy, stressed, angry, anxious, or lonely, it’s easy to get trapped in a negative thought pattern.
I find writing helpful as I don’t particularly like sharing my feelings with other people, but If you’d like to talk through your thoughts and emotions with a professional, speak with your GP who can refer you to helpful, local services – they exist, but you won’t know until you ask!
The digital age we live in also means that we have so many options that don’t actually involve laying our soul bare to other people. So many websites and apps exist that you can use to practice mindfulness, meditation or even go through a course of CBT. Local and online support groups can be used to connect with people that have jumped the same hurdles, and sometimes, someone just validating your thoughts and feelings and telling you “I feel that way too” is enough to break the feeling of being alone.
Getting into a routine of eating little and often, and eating healthy should be possible, regardless of dietary restrictions. It may involve trial and error, like trying multiple methods of cooking different vegetables, and it may mean splitting an average-sized smoothie into three smaller portions to be consumed throughout the day along with multiple loperamide, but it will be worth it, and your body will thank you for it! Speaking to a dietician is advisable, especially if you have to avoid many foods.
Exercise might be one of those things that you struggle with, but again, it shouldn’t be impossible. I struggle with joint pain and muscle soreness a lot because of fibromyalgia, but low impact activities like yoga, swimming, and walking, I can do without suffering too much after. It’s all about finding YOUR new healthy lifestyle.
My top tips to remember:
Don’t compare your journey to a healthier lifestyle to anyone else’s.
Do not berate yourself for “failing”. Being angry with yourself or letting yourself feel like you have failed can very easily lead to eating more because you upset and need comfort, or because of the “I’ve failed today anyway, so I’ll start again tomorrow” mindset.
Changing your lifestyle is not something you can be expected to do overnight, but I think we can all get there; one step at a time!
About the advice and opinions of our bloggers
We hope you enjoyed this article from our guest blogger. They are expressing their views or knowledge on a topic because of their experience & background. Some of the opinions expressed may not reflect the views of Fittleworth or your NHS professional.
It goes without saying, but this is not clinical advice. Each person will have an individual set of medical factors to consider. So please do not to make significant changes to your diet, exercise or treatments before consulting with a NHS professional.
Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, 
after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.
Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.
She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.