Talk Health UK Online Clinic for Bowel Issues and IBS Still Open for April 2017

April 25, 2017

TalkHealth, a social media community in the United Kingdom provides UK-centered health information and online forums, and monthly “online clinics” where participants can ask questions of UK health experts and organizations for a given category of conditions. It is currently conducting its annual Bowel Issues and IBS Clinic for the IBS Awareness Month. It opened on April 1, and will remain open through April 30

TalkHealth is presenting this month’s clinic in cooperation with  Bladder and Bowel UK, formerly PromoCon, a national service of Disabled Living for adults and children facing continence issues, and ERIC , a UK charity specifically focused on the bladder and bowel continence needs of children and teens.  The Online Clinic for Bowel Issues and IBS 2017, which is an online forum, is currently open and accepting questions for the above dates only.  Readers can access it by clicking the above link. Registration with the TalkHealth site is required to post questions and receive notification of responses. Registration is not required for the public to access and read threads that are already posted. After this month, online clinic responses will be archived on the site for some time, however it will no longer be possible to ask new questions of the experts for this year.

Please note that the online clinic is not intended as a discussion or support venue between people with IBS or other bowel issues, but for questions and answers between affected people and the clinic’s experts for this month, which include several UK  gastroenterologists, a paediatrician, a clinical psychologist and two dieticians. Talk Health therefore asks that participants refrain from answering others’ questions posted in the Online Clinic and allow the professionals to respond. An open forum for IBS is available elsewhere on the site. Also keep in mind that while the clinic experts will do their best to provide helpful, accurate general information, they are not able to diagnose or treat anyone in an online forum and participants should still consult their own physicians if needed.

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers for IBS Awareness Month.  In addition to the clinic this month, please browse the rest of the TalkHealth website, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


Guest Post: Let’s Work Together to Manage IBS

April 10, 2016

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank him for his time and important insights.

Jon S. has IBS and lives in the United Kingdom. He has a degree in biochemistry and now works as an analyst in the tech sector. In his spare time, Jon follows developments in the science behind, and treatments for, IBS. He shares this knowledge via his blog (patientj.wordpress.com) and via support to IBS sufferers on Health Unlocked.

For many sufferers, despite the international Rome diagnostic criteria in existence since 1991, (see page 889, section C1 at link) IBS still feels like a diagnosis of exclusion: we have a series of digestive problems but blood or other tests rule out anything more ‘serious’. Many of us initially don’t understand the concept of functional disorders like IBS or how they are real but do not show up on currently available tests. As a result, we find ourselves placed in what appears to be a catch-all umbrella term for unexplained bowel symptoms: irritable bowel syndrome. This situation is far from ideal: it can make patients feel their condition isn’t being taken seriously, and frustrated when alternative diagnoses aren’t considered, or even known about.

The good news is that more is being understood about IBS every year, and the Internet and social media are useful ways for sufferers to learn more about their illness and discover alternative treatments or problems their own doctors might not know about. But we’re still a long way off fully applying this learning in the clinical environment. Although the updated Rome IV is due out next month, many other diagnostic tools aren’t available in the clinical setting yet, we still don’t know what some of the causes are, and because of the way medicines are licensed and approved, it may take time for some experimental treatments to be available for use. It’s also clear that not all frontline doctors are fully abreast of even the more recent treatments for IBS.

So, in the meantime, what can be done to help improve the treatment and management of IBS? I believe there are changes we can make as patients, clinicians and institutionally that will benefit everyone. However, these changes require humility and the willingness to want to improve to have the best chances of success.

Patients

First of all, we as patients need to understand and accept that there isn’t a silver bullet for IBS. Medical and scientific professions don’t understand all the causes for IBS, and even when we do have evidence of a trigger, we don’t necessarily understand the underlying biochemical and physiological reasons for how the triggers give rise to symptoms, or even how to treat it.

For this reason, treatment of IBS is a process of trial and error. And often error. It can take several months or years to discover the right treatment, or combination of treatments, to combat an individual’s symptoms. And as there is no magic pill, we also need to look at our own lifestyles and accept that these, too, could be contributing to our problems. Some patients find that poor diet and/or endemic stress and anxiety in general or triggered by life events can exacerbate IBS. This isn’t always the case, and isn’t necessarily easy to change, but in my experience it is one of the things sufferers are reluctant to address.

We should also be alive to the fact that we might not be able to treat IBS at all. A significant proportion of patients (20-25 percent) will find no improvement through managing their stress and altering their diet. And even if this is possible, for many it will still require the long-term management of our symptoms, making life as tolerable as possible, but not necessarily clearing it up altogether. In this way, IBS is a silent disability, but something we can hope to change over time through things like IBS Awareness Month and political campaigning.

And we can also do lots to understand our symptoms, too. In the UK, pages like the NHS Choices’ website, the IBS Network and NICE Clinical Guidelines provide good starting points on IBS management and clinical best practice, the majority of which will be applicable regardless of which country you live in. This doesn’t mean we shouldn’t trust our doctors. Believe it or not, the majority of the time the doctor is probably right: it is IBS as opposed to anything more serious. However, I feel that sometimes we feel let down by the medical profession when they don’t seem to support us, or when the treatments don’t work. We can only overcome this by understanding more about our condition and working with our doctors to explore our symptoms more.

 

Doctors

As in any profession there are excellent doctors and some pretty bad ones and then the whole range of skills and competencies in between. Indeed, partly because I have several friends who are doctors, I have a considerable amount of appreciation for the profession. And I think that anyone who has worked in a high-pressure environment where the policies, procedures and technologies are constantly changing can appreciate how difficult it must be for the average family doctor to amass and apply a growing and shifting body of knowledge and best practice.

All the same, I hear too many stories of patients who feel like their doctor doesn’t care or understand, or people who’ve reached their wit’s end because nothing appears to be working. I feel these are both cases where doctors have failed: if doctors have lost their desire to care for people, they have failed their patients; if they have lost their passion to solve medical problems, then they have failed themselves.

That said, I think there are a few things that doctors can do to better support their patients. To start with, how would you adapt your approach if you considered IBS more a symptom than a diagnosis? Would this make you more willing to look at differential diagnoses or change how you give advice?

Moving on, there are a range of treatments available but not every treatment will work for every patient. After I’d seen four different GPs, only the last one explained that they’d like me to try one drug first and then if that didn’t work we could review later and either change dose or drug. But why had it taken four doctors before one said “this drug might not work but I want to start you on the drug with the fewest side effects…”? We’d like you to work with us but it sometimes sounds like we’re being given a cream for a rash that will go away in a couple of weeks.

Work with your patients to try and help us understand the underlying cause(s) of our IBS and the current research understanding of what it is and what can be done to help us. Clinical standards will vary from country to country but I suspect, Rome criteria aside, most will advocate at least some blood tests to rule out other disorders. Some patients would benefit (or just like to know) what any tests looked for and found; it may also help very anxious patients understand why you are ruling out more life-threatening conditions. If tests aren’t indicated or helpful, which criteria or considerations are being used and why?

We appreciate that you’re busy but please be patient with us and take some time to explore our own theories of what might be behind our IBS. One of the most frustrating things for sufferers is to be told that such-and-such a condition is unlikely, but then do no tests to prove or disprove that. I accept that some diagnostic tests are too dangerous or expensive but for an enigmatic illness like IBS, any number of things could be causing the symptoms and we need your help to find out. We need more patient-scientists but that is only possible with the support of more-knowledgeable professionals. We have more time on our hands to explore our symptoms and we want to get to the bottom of them (if you’ll pardon the pun). I’m not saying that every wacky thing out there on the Internet should be given credence but talk us through your reasoning, explore alternative diagnoses, and agree on a strategy with us to help rule other factors in or out and pursue treatment.

Finally, please update yourselves on the latest clinical guidelines as well. I have heard stories about, and experienced, doctors who have not conducted appropriate tests or advised vastly outdated treatments. And if you are still at a loss, please consider sending us to a specialist, especially if together we have tried several treatments and tests and are still none the wiser.

 

Institutions

Ultimately, institutional changes will have the biggest impact on patients and doctors alike.

First of all, we need more cost-effective ways to help patients manage their IBS. Is it sensible to use up a doctor’s time for routine management of an IBS case? In the UK, the IBS Network advocates the training of specialist nurses in the NHS to support IBS sufferers, a suggestion that would no doubt benefit sufferers in other countries as well.

I would go one step further and give pharmacists a greater role in managing IBS, too. Pharmacists will already be aware of the various drugs licensed for treating the condition and their contraindications; they may even spot how a patient’s existing cocktail of drugs might be contributing to or causing IBS symptoms. In other words they seem ideally placed to work with patients to discover the most suitable drug(s) to treat their symptoms. We would also provide them with additional training to know when to recommend a dietician or alternative therapies.

I would also like to see institutions loosen the treatment guidelines for IBS. For instance, in the UK, the NICE advice is a useful starting point for managing and diagnosing IBS in patients but it potentially stops clinicians from using their scientific and medical judgement to request alternative tests or try out certain treatments with their patients (with the patient’s consent of course). We don’t know what causes IBS so provided a drug is safe to give and is being given for a clinical purpose, what is wrong with doctors being able to prescribe something to see if it helps a patient?

In short, there are several ways we can improve the diagnosis, management and treatment of IBS. Things start with small changes in how we as patients approach our discussions with doctors, and doctors’ willingness to engage in a conversation with patients. These will go someway to improving the approach to managing IBS. However, both patients and doctors are likely to be held back unless there are some concomitant institutional changes made as well. Policy changes aren’t always easy, and there can sometimes be reluctance in various quarters to implement change. But, at the end of the day, a condition that affects up to 20 percent of the population needs better solutions to manage limited resources in the best way possible for both patients and practitioners alike.

 

 

 


Free IBS Network Conference, “The Patient’s Perspective,” To Be Held April 16, 2016

March 28, 2016

Some of our readers in the vicinity of Sheffield in the United Kingdom may be interested in a conference entitled, “The Patient’s Perspective” being offered by the IBS Network at the Holiday Inn Royal Victoria Hotel in Sheffield on Saturday, April 16, 2016.

This event is in commemoration of the IBS Network’s 25th anniversary as the United Kingdom’s national charity for IBS and will include several sessions with leading U.K. professionals in the IBS/functional GI field as well as people affected by IBS. Diagnosis, working with health professionals, research, diet, cooking, and living with and managing IBS are among the expected topics. The program is free of charge to those affected by IBS and IBS professionals but 25 pounds for those representing or employed by commercial entities. An IBS-friendly buffet lunch will be provided.

The original listing with more details is available on the IBS Network website at the following link:

http://www.theibsnetwork.org/upcoming-event/free-ibs-conference-patients-perspective/

Thanks to a friend of IBS Impact in the U.K. for passing along the information.

Please address any questions about the above event directly to the IBS Network. IBS Impact hopes that this conference is helpful to our readers in the United Kingdom.

 


IBS Network Twitter Chat To Be Held Tuesday, August 18, 2015

August 16, 2015

The IBS Network, the national charity for irritable bowel syndrome in the United Kingdom, invites anyone with a Twitter account to take part in an hour-long chat on Tuesday, August 18, 2015 from 7:00-8:00 p.m. (19:00-20:00) GMT. The chat, which will be moderated by two members of the IBS advisory board, will focus on four questions for discussion. To paraphrase, they are: Is the name “irritable bowel syndrome” a help or a hindrance?  How do we enable people to be open about symptoms? How would you increase awareness, advocacy and empowerment? Is it “just” IBS?

The IBS Network encourages participants to consider their answers in advance, given the Twitter limit of 140 characters per tweet. Explanations of chat procedures and the full original wording of the IBS Network can be found on its website at the link below.

http://www.theibsnetwork.org/upcoming-event/twitter-ibs-chat/

IBS Impact encourages readers, especially those from the United Kingdom, but also interested parties elsewhere, to consider this brief public discussion, which can provide the IBS Network with feedback from the IBS community and create some public awareness for our issues on social media.  Thank you to the IBS Network for alerting IBS Impact to this opportunity and inviting participation.


Online Clinic for Bladder, Bowel and Digestive Health Available July 6-10, 2015

July 6, 2015

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and monthly “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, is currently conducting its annual Bladder, Bowel and Digestive Health Clinic.

TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2015 Bladder, Bowel and Digestive Health Clinic, which is an online forum, is currently open and accepting questions for the above dates only. Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the 2013 and 2014  bladder, bowel and IBS clinics, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


NICE Guidelines in the United Kingdom for Adult Irritable Bowel Syndrome (IBS) Updated for 2015

March 6, 2015

Last month, February 2015, the National Institute for Health and Care Excellence, formerly the National Institute for Clinical Excellence and still widely known by its original acronym NICE, released revised guidelines for the diagnosis and treatment of adults with irritable bowel syndrome (IBS) in the United Kingdom. NICE’s stated goal is to provide evidence-based information to improve the overall quality of care and reduce variation in care through the National Health Service. The committees responsible for the IBS guidelines included many professionals from a variety of academic research centers and hospitals throughout the U.K.

The last update to the NICE guidelines for IBS was in 2008. In a portion of the guidelines on its website directed to the general public,  NICE cautions that these guidelines are not intended for those with IBS who are under the age of 18 or those who have other gastrointestinal disorders such as non-ulcer dyspepsia or coeliac (celiac) disease. The guidelines are primarily for use by general practitioners/primary care physicians who are the first health professionals to assess people with possible symptoms of IBS. The relevant section of the NICE website includes several additional tools, including cost information.

With a few specific country variations, the NICE guidelines are consistent with the international Rome criteria developed by leading functional gastrointestinal disorder clinicians and researchers from several countries (currently Rome III. See page 889. Rome IV was completed in December 2014 and is expected to be published in 2016.) and best practices advocated by those same IBS experts, such as patient-centered care. For example, the NICE guidelines advise primary care providers to ask open-ended questions, to be aware that many patients will not disclose incontinence without being specifically asked, and to be sensitive to individuals for whom English is not the first language or who have disabilities that may hinder effective communication.

In general, NICE advises that IBS should be considered a possible diagnosis for people who have chronic symptoms of abdominal pain and change in bowel habits  (altered frequency or stool form) and at least two of the following additional symptoms: changes in stool passage (such as straining, urgency, incomplete evacuation), bloating, symptoms worsened by eating, or passage of mucus. Additionally, NICE states that the following common non-GI or extraintestinal symptoms can further support diagnosis of IBS: lethargy, nausea, backache and bladder symptoms.

Symptoms or circumstances that are not present in irritable bowel syndrome or otherwise warrant further investigation and referral to a specialist in gastroenterology include: unintentional and unexplained weight loss (not from changes in eating habits or physical activity), rectal bleeding, family history of bowel cancer or, for women, of ovarian cancer,  chronic frequent and/or looser stools in individuals over age 60,  anaemia (anemia), rectal or abdominal masses, and or inflammatory markers for inflammatory bowel disease (IBD).

The Rome III criteria discourage extensive testing of all people with symptoms of possible IBS. As reported on this blog on October 9, 2011, IBS experts have not considered it a diagnosis of exclusion for over two decades, and state that a properly done Rome III diagnosis is 98% accurate. As there is no clinically available test specifically for IBS at this time, many IBS experts feel that absent symptoms or risk factors for disorders other than IBS, as discussed above, routine, extensive testing is time-consuming for patients and physicians, expensive and not cost-effective, stress-producing for patients and their families, and may delay appropriate IBS education and treatment for many people with IBS, who frequently spend months or years continuing to look for other statistically unlikely causes of their symptoms. In contrast, NICE guidelines do recommend certain simple blood tests to exclude other possible diagnoses: full blood count, erythrocyte sedimentation rate (ESR) or plasma viscosity, c‑reactive protein (CRP) antibody testing for coeliac (celiac) disease (endomysial antibodies [EMA] or tissue transglutaminase [TTG]), as well as serum CA 125 in women who meet NICE guidelines for possible ovarian cancer.  However, NICE guidelines also discourage procedures that are more invasive, involved, or generally not cost-effective. They specifically state that the following are generally not necessary to confirm a diagnosis of IBS for those who meet diagnostic criteria: ultrasound, rigid or flexible sigmoidoscopy, colonoscopy, barium enema, thyroid function test, faecal (fecal) ova or parasite tests, faecal (fecal) occult blood, and hydrogen breath tests for lactose intolerance or bacterial overgrowth. These details are mostly identical to the the 2008 version of the NICE guidelines.

The updates in the 2015 guidelines are concentrated in the treatment/management section, based on a review of research evidence and cost-effectiveness. Primary care physicians are encouraged by NICE to begin their advice to newly diagnosed people with IBS with general lifestyle and simple dietary measures. These include exercise and other relaxing leisure activities, regular meals that are not rushed, adequate fluid intake, reduction of caffeinated, carbonated, and alcoholic beverages, as well as adjustments in types or amounts of fiber, starches, fruit or sorbitol depending on specific symptoms. If these are not effective for particular individuals, NICE newly emphasizes this year that more extensive dietary exclusions, including the low-FODMAP diet, be tried only with the guidance of healthcare professionals with diet and nutrition expertise. For people with IBS who desire to try probiotics, NICE recommends that physicians advise them to continue for 4 weeks. This is a 2008 recommendation that has not changed.

If medications are needed, NICE recommends laxatives, except lactulose, for constipation-predominant IBS, and loperamide (Immodium) for diarrhea-predominant IBS. Among prescription medications, antispasmodics are considered by NICE to be the first line treatment. If those are not sufficiently effective, tricylic antidepressants are preferred by NICE over selective serotonin reuptake inhibitors (SSRIs) as the next line of treatment, with SSRIs only being used if tricyclics are ineffective. These 2008 recommendations were reviewed by the relevant NICE committee and unchanged for 2015. New for 2015,  NICE advises to physicians to be aware of potential side effects from both tricyclics and SSRIs, and to follow up regularly with their patients taking them, initially after 4 weeks, then every 6-12 months thereafter. NICE states that linaclotide (brand name Constella in Europe, Linzess in the United States) should be considered only for those with IBS with constipation (IBS-C) who have not had success with maximum doses of different classes of laxatives for at least 12 months. For 2015, NICE added a recommendation that physicians follow up after 3 months of use. The committee also considered  lubiprostone in this 2015 review, but did not find the evidence strong enough to make a specific recommendation regarding its use for IBS-C. Lubiprostone (Amitiza) is approved for IBS-C in the United States and is available in the United Kingdom for certain other types of constipation under specific strict conditions, but is not specifically approved in the U.K. for IBS-C at this time. Any prescription of lubiprostone for IBS in the U.K. would be off-label.

For those who do not respond adequately to medications within 12 months, NICE states referral to psychological interventions such as hypnotherapy or cognitive behavioral therapy can be considered. In 2015, NICE reviewed relaxation therapy, computerized cognitive behavioral therapy and mindfulness, but did not make specific recommendations about their use for IBS at this time. NICE recommends further research into computerized CBT and mindfulness, specifically their cost-effectiveness.

The 2008 guidelines include statements discouraging specific alternative medicine interventions. These were neither reviewed nor changed for 2015. Aloe vera, acupuncture and reflexology show insufficient evidence of effectiveness for IBS and are explicitly not recommended by NICE.

The full guidelines, 2015 supplement, addenda, tools and resources can be found on the NICE website at the following link:

NICE Guidelines (U.K.) for Adult Irritable Bowel Syndrome in Primary Care, February 2015

IBS Impact appreciates the work of all of the health care professionals involved in developing this revision to the NICE guidelines. Peer review is important to the scientific process and future advances. The availability of this document provides additional guidance to health care professionals and interested people with IBS in the most current standards of care for adults with IBS in the United Kingdom. When so many people with IBS, families and professionals continue to receive outdated or inaccurate information about basic aspects of IBS, an evidence-based document is an important tool in education and management of IBS.

 


In-Person Support for Irritable Bowel Syndrome (IBS) in the United Kingdom

January 21, 2015

After the most recent post on this blog about the relative dearth of support and education options for people with IBS in their own communities (See the January 12, 2015 post), we were contacted by the IBS Network, the national charity for IBS in the United Kingdom. It was communicated that the organization does have existing self-help groups in a few locations, and is interested in starting more in other cities in the U.K., preferably with a volunteer who has IBS in each location to help coordinate the group. The IBS Network will provide information and advice as to how to start a new group.

For those residents of the U.K. who feel they might prefer or benefit from local support rather than the many Internet groups, please see the IBS Network’s self help group page for more information and contact details.

IBS Impact advocates a range of options to educate and support people with IBS and their families, wishes the IBS Network success in these endeavors, and hopes that gastrointestinal organizations, medical facilities and community groups in other nations will follow suit with similar efforts. Once again, readers of this blog are encouraged to comment with available resources or to discuss possible systemic barriers that people with IBS may face in getting access to community services and support.