We hosted an interactive and engaging Q&A session on Understanding and Managing Flares in IBD with Dr Gareth Parkes.
Many very important and popular questions were asked during the session, and we have summarised them in this article. At the end of this article, you can access the full session recording, which includes additional questions and answers.
1. Can you have symptoms of Crohn’s when you are not in a flare?
Not everyone’s symptoms come from a flare-up. For example, if you have Crohn’s Disease and have had bad flares in the past you might potentially have parts of your bowel that have narrowed due to scar tissue. Or perhaps you have had parts of your bowel removed, which can lead to symptoms of your disease (such as diarrhoea) without being in flare. If your symptoms are due to something like scar tissue, medications such as steroids will not help or resolve the issue. Your clinician can help you figure out ways to improve your symptoms through other routes such as diet etc. You should reach out to your clinician if you are struggling with any symptoms as they can explore what is going on in your specific circumstance.
2. What is the difference between symptoms of flare with IBD versus IBS?
IBS is very common, so much so that there is often a lot of overlap between those who live with IBD also having IBS. In order to determine if symptoms of flare are due to IBD or IBS, one common route to take is to get a faecal calprotectin test done. This stool test will check for inflammation in your stool, which will be present if the issue is your IBD. There are also a variety of blood tests that can be done, as well as bigger tests such as an endoscopy or MRI. If there is evidence of inflammation, then more than likely the symptoms one is experiencing is due to their IBD. If there is no inflammation shown through your tests, then it may be that your symptoms are due to something like IBS. IBS impacts about 10-12% of the population, while IBD impacts less than 1% of the population. IBS can be treated with lifestyle changes such as diet.
3. How do you deal with bloating caused by Crohn’s Disease?
Bloating may be a sign of active inflammation and again if it is a new symptom or has changed rapidly then it would be good to contact your team for a faecal calprotectin or blood test. If you have blockages in the small intestine, you need to speak with your medical team about your discomfort, as these types of blockages cause bloating/stomach distension and there are a variety of ways to treat it. General speaking bloating is one of the hardest symptoms to treat in Gastroenterology and at times might be easier to treat in those with IBD than IBS. With IBD, there are various medications that can help control your inflammation, which will improve your bloating. With IBS there are fewer effective medications, most treatments target diet and the condition is less serious, and therefore less dangerous – but the bloating is still frustrating to experience.
4. What do I do if my medication for my IBD is not working?
It’s important to reach out to your care team as early as you can if you feel the medication you are on is not working to help your symptoms of IBD. Most teams should have a way to communicate with them to receive a quick response. For example, for hospitals signed up with the My IBD Care app, it can be used as a communication tool between clinicians and patients for things like this. If your hospital is not signed up to the My IBD Care app, there may be something like a telephone helpline to use to get in touch with your team quickly. You may need to do some blood or stool tests to see what is going on and how to move forward with your care.
5. Can medication resolve all symptoms of IBD?
For many with IBD, medication will be able to treat the majority of symptoms although many patients complain that fatigue and at times pain may persist despite resolution of inflammation. Factors such as stress can exacerbate these symptoms and new data suggests that a focus on reducing stress, getting better sleep and improved exercise can improve how they feel on a day-to-day basis.
6. What can I do to stop a flare without any intervention or medication?
Firstly, if you are able to recognize when you are moving towards a flare up, it may help you to prepare and stop it. For example, through home calprotectin testing you may be able to see when inflammation is beginning to appear in your stool. There are things that your inflammatory condition does and doesn’t like. Your IBD likes when you are well rested, not stressed and on a balanced/healthy diet. Exercise can also help with inflammation in some cases, and it doesn’t have to be extreme exercise – simple things like walking can help improve your inflammation early on before a flare sets in. It may help to share with your work/job that you have IBD, so that if you ever need to take it easy to need some time off, they can have a better understanding as to why. It may be ideal to share with your work your diagnosis of IBD when you are not in flare, as they can prepare to accommodate you in the future as necessary. If you need a letter of support for work, do ask your clinical team.
7. What over the counter or natural remedies can help with IBD?
There are a number of natural remedies that have undergone clinical trials in IBD. Curcumin is the active ingredient in turmeric, and tumeric has been used for thousands of years as an anti-inflammatory in a number of conditions including IBD. You can mix it into your food or drinks or take it in supplement form, as you will need to have a significant amount of it to cause an effect. Aloe vera in high doses can also be anti-inflammatory. Also, some probiotics have shown to benefit those with IBD, but make sure to check with your clinician before starting a new one so that they can help you choose one that is right for you. It may be helpful to look into an anti-inflammatory diet as well.
8. Are IBD and hair loss connected?
Hair loss is quite common and it can be due to the consequences of active disease, including loss of minerals, iron deficiency, folate, B12 or a direct consequence of medication. The medications for IBD that are most classically associated with hair loss are azathioprine or mercaptopurine, although hair loss is not always a side effect of this medication. Taking iron supplements on its own may help, however it may be hard to absorb if you have active disease.
9. Is taking CBD capsules safe with Crohn’s?
Safe? Yes. Tested? No. The short answer is that there are two active ingredients in marijuana, including CBD and THC. Trials of CBD in Crohn’s have not shown benefit over placebo. Trials of THC (the ingredient that causes one to experience a ‘high’) did show some improvement in symptoms however crucially there was no evidence to show that THC reduced inflammation. The hypothesis is that the disease activity remains similar but patients feel better due to the euphoric effects of THC. However, THC is addictive and has been associated with negative effects on mental health and therefore taking it would not be suggested at this time. There is not sufficient data behind its use as of yet.
What is the link between smoking and Ulcerative Colitis?
Smoking has such a negative impact on your body’s immune system leading to a degree of immune suppression and causes a myriad of harmful effects to the body like cancer and heart disease. However in Ulcerative Colitis this negative effect on the immune system can potentially control the disease activity and some patients develop UC on giving up smoking. If you are already a smoker with ulcerative colitis, and give up smoking, your colitis is likely to be worse. However, for your long-term health, giving up smoking is very important. If you give up smoking with UC, you may require higher doses of medication and you should speak to your clinician about it as soon as you can. In Crohn’s smokers are more likely to develop the disease, more likely to have an aggressive course with a higher risk of surgery and some drugs are less effective in smokers.
11. Do steroids make your skin worse? Do steroids cause acne?
Steroids are chock full of side effects, and acne is one of them. Acne can occur at any age, however can have more of a mental impact on those who are younger. There is not a lot that you can do to prevent acne from steroids, other than to wait for the end of the course. It’s important to note that steroids are not meant for long-term use and should only be used temporarily. As you taper off your steroids, you should see an improvement in your acne if it has been caused by your steroids.
12. Are menstruation and flares connected?
We don’t see major flares associated with menstruation. Therefore, clinicians don’t tend to interrupt the menstrual cycle to improve symptoms of IBD. However, if your symptoms seem to have a big relationship to your menstrual cycle, it may be advisable to see your clinician in case this is representative of a different issue, such as endometriosis.
13. Is logging your food each day a good way to discover what triggers your symptoms/a flare?
There have been large studies trying to address this issue and we are awaiting their results. However, not all flares will be caused by food and it is important not to be quick to blame what you have recently eaten. Flares are hopefully relatively rare, so you might end up logging endless meals whilst you feel well. It would be useful when or if you have a flare, to then go back over the last few days and document what you have eaten, but also take into consideration factors such as mood, stress levels, sleep and exercise levels. You can log many of these factors in the My IBD Care app.
14. What are the signs and symptoms of a flare with an Ileostomy?
Most likely it will be either an increased output possibly with blood in the bag, or having the sensation of a blockage with a big reduction in output, nausea +/- bloating and vomiting. Both of these things might end up causing weight loss and fatigue
15. I’ve been on steroids for the past 9 weeks, I have gained weight very quickly. I’m scared that I won’t be able to drop down my weight to what it was before, I’m not sure what to do.
Steroids sadly do have weight gain as one of many side effects. Some of that weight gain might be good (as many patients with flares of disease will have lost weight) but not all of it. Some of it may be due to fluid retention and that you should lose that weight quite quickly when the steroids stop. You should be able to lose the rest of the weight through exercise when you feel better post-flare. It is a good reason to speak to your care team to make sure that if flares are happening frequently that you know what your options are to prevent further steroid use in the future.
16. Is it safe to take anti-diarrhoea tablets if I do need to leave home?
This is a bit of a tricky question, as there are some patients with Crohn’s who may have had surgery and have lost parts of their bowel who will need long term anti-diarrhoeal therapy. If you have colitis and still have bad diarrhoea, it would be important to know that the disease is not active and if it is to focus on trying to get the disease under control and prevent diarrhoea that way. Having said all that for all but the most severe disease, it should be okay to take a one-off tablet such as Loperamide to try and keep a social engagement. You should check with your own care team to make sure that this is a safe option for you.
17. I often feel like I can’t pass a stool as if something is blocking the exit? My colonoscopy was ok but my daughter has Ehlers Danlos Syndrome and she has been told her rectum collapses in on itself – could I have something similar?
Yes, it is possible that something similar may be happening. It requires quite sophisticated tests to prove this, more specifically something called ano-rectal physiology.
18. Sometimes whilst going to the toilet I find it difficult to complete my motion and occasionally I get a nauseous feeling – is this normal?
Feeling like there might still be some faeces there is common, it might be a sign that either you have active disease (a faecal calprotectin test will help to confirm this) or if that is normal then you may want to consider taking some laxatives to see if that clears it all out.
19. Can you stop taking Azathioprine if you are worried it may make a covid reaction worse?
All the evidence so far shows that you should stay on your current medication and keep your disease under control. As long as you have had all your vaccines, evidence shows that a case of COVID is now nearly always mild.
20. What kind of deficiencies could one develop with Crohn’s? What tests you need to identify any deficiencies? How to manage fatigue with Crohn’s?
Thought someone might ask the big ‘F’ question! Fatigue is difficult and so far we have not made a huge amount of headway in researching it. You would need to know that 1. All inflammation is under control. 2. That your blood count is normal. 3. Check Iron, folate, Vitamin B12 & D levels. 4. If you have had lots of small bowel operations you may need further blood tests with your team to look at micronutrients.
We hope that this article provides you with some of the answers to your questions about life with IBD.
Watch the full recording HERE, or visit your Library in your My IBD Care app to watch this and past webinars!