At some point, most people with IBS will feel like they're not being taken seriously. Whether it's a busy, impatient medical professional or a bureaucratic system, it can be hard not to take it personally.
As someone who's dealt with IBS for decades and worked within the NHS healthcare system, here are my top tips for advocating for yourself and getting the treatment you need and deserve.
Don't wait to see a doctor
Digestive issues are among the most common complaints doctors see in general practice. Unfortunately, the majority of IBS sufferers tend not to visit a doctor until their symptoms are severe and prolonged. The problem with this is that the patient has been suffering in silence, sometimes for months or years. Yet, without visiting a doctor, there is no documented, established pattern of symptoms on which to base a diagnosis.
Although some doctors may be willing to begin the process of diagnosing IBS, based on the patients' account of their history of symptoms, others may not. As detailed in What is the Rome IV criteria, the requirements for diagnosing IBS are as follows;
"the patient must have been experiencing symptoms at least one day a week for the past 3 months and that onset symptoms began 6 months before diagnosis".
This can cause frustration as the patient may already be living with considerable pain and an impact on their quality of life. For those who have waited until they reached their tipping point before speaking to a doctor, the relief, answers and treatment that they seek may be needed much quicker than the diagnostic process may go.
The biggest tip I have is don't wait until your symptoms are unmanageable before asking for help. I know how difficult it can be to find the time, money and confidence to see a doctor. If you need to delay making an appointment, then try at least to begin a food diary or address some of the routinely recommended diet and lifestyle factors. This may help you reduce some of your symptoms to a more manageable level and establish a pattern of your specific IBS triggers.
Getting the most out of your appointment
Dealing with IBS is often painful, confusing and overwhelming. This can sometimes make it difficult and emotional to say what we want to say. It's important to make ourselves feel understood or heard when we speak to our healthcare team. Things that can help you to feel more in control at your appointment include:
- Stick to the main reason you're there. Don't reel off a long list of unrelated issues and expect your doctor to thoroughly tackle them all in one appointment. Many doctors have a golden rule of one appointment, one ailment. Focusing the discussion on your gut helps make the most of your (usually brief) time with the doctor and shows it's a priority for you.
- Avoid listing every random old wives' remedy or alternative treatment you've googled or tried. As desperate as you've become whilst trying to find some relief, your doctor doesn't want to hear about your latest celery juice cleanse, coffee enema or detox patches. (Mainly because they are mostly nonsense, there, I said it).
- Do tell them about any science-backed resources you've tried. Things such as medication recommended by a pharmacist, gut-directed hypnotherapy, CBT, acupuncture, probiotics and fibre supplements.
- Write out the main points you want to cover and any questions you have so that you don't forget them. Again, keep it brief but concise.
- Emphasise to your doctor the impact your symptoms have on your quality of life. Touch on areas such as sleep, work, eating habits and mental health.
- Keep a practical, easy to read diary in the run-up to your appointment and take it with you. Ask your doctor if they would find it helpful to see it, but don't be offended if they say no. You may get a better response to this one from a dietitian as they are more used to quickly analysing food diaries as part of a regular consultation.
- Have someone you trust accompany you to your appointment.
- Be prepared emotionally, mentally and physically for your first appointment to not be your last. It's unlikely you'll find immediate relief from your symptoms after an initial appointment. Further tests, implementing diet and lifestyle changes, trialling medication, follow-up appointments, referral to specialists and waiting times will likely all come into effect. This is yet another reason not to delay asking for help.
Be your own health advocate
If, after following the advice, medications, diet and lifestyle recommendations you've been given, you experience no significant relief, then you need to keep on fighting your cause. It can be exhausting and defeating, but continue to push for answers for as long as you can.
Doctors are often happy to deliver a diagnosis of IBS with little to no effort to get to the root cause of the issue. It's becoming increasingly common for doctors to recommend the low FODMAP diet as a first-line treatment. This is not the best practice or in keeping with current guidance.
Only after you've tried every diet and lifestyle change you can implement, been tested for underlying conditions and ruled out all other contributing factors should your doctor suggest a supervised low FODMAP diet. If this doesn't happen, then you should consider politely requesting a referral to a FODMAP trained dietitian. NICE guidelines in England, introduced in 2015, support such requests.
"1.2 Clinical management of IBS - 1.2.1 Dietary and lifestyle advice
1.2.1.8 If a person's IBS symptoms persist while following general lifestyle and dietary advice, offer advice on further dietary management. Such advice should:
- include single food avoidance and exclusion diets (for example, a low FODMAP [fermentable oligosaccharides, disaccharides, monosaccharides and polyols] diet)
- only be given by a healthcare professional with expertise in dietary management".
Doctors will sometimes recommend that you Google the low FODMAP diet. Others may supply a low FODMAP diet sheet. Unfortunately, these sheets are usually too basic to help you follow the diet properly alone. The area of low FODMAP research is still fairly new.
As more is learned about the diet, the guidelines alter to reflect the latest findings and lists quickly become outdated. Unless your doctor has a specific interest in FODMAPs, it's not reasonable to expect them to keep up to date with every new development. This is why it's in everyone's best interests that the dietary advice you receive comes from a specialist dietitian.
Sometimes it's necessary to be your own advocate for your health. You may need to be polite but insistent when it comes to speaking up. It's your right to ask for further investigations or help to manage your symptoms. If your initial appointment, basic diet and lifestyle changes, tests or medication haven't helped you, it's time to speak up. Your doctor has a duty of care to listen to your concerns and act accordingly. This includes making referrals to other health professionals as appropriate. [3, 4]
Share your tips for how to be your own best health advocate in the comments below.
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