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Can I Butt In? Epside 012: Rare and Lesser-Known Bowel Conditions

In a Rare Disease Day special, Sam provides an overview of several rare and lesser-known bowel conditions, including CIPO (chronic intestinal pseudo-obstruction), mesenteric plexitis, Hirschsprung’s disease, metastatic small bowel obstruction, paediatric IBD, and Enterocutaneous Fistula or ECF. She also explains the ultra-rare genetic condition constitutional mismatch repair deficiency (CMMRD) and its relationship with Lynch syndrome.

Lauraine’s Story: Life with an Enterocutaneous Fistula

Lisa’s Story – CIPO

Music is “Summer Guitar” by Amaksi from Pixabay and Melancholic Guitar Sting Transitions by VoiceBosch.

Listen to the episode here.

Transcript

Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.

 

Hello everybody. Welcome to another episode of Can I Butt In? We’re doing things a little bit differently today. I’m sat here by myself to do an episode on Rare Disease Day. So Rare Disease Day is on the 29th of February this year, 2024, which I think is great planning by whoever decided that they would have Rare Disease Day on the most rare day that you can find. Bravo for that. Obviously normally on the 28th of Feb. And I thought that today, for Rare Disease Day, we would do an episode on rare or lesser talked about bowel conditions and diseases. So I’m going to talk you through some of these. And of course this episode itself is quite rare because you have me all to yourself with nobody here to keep me in check. So yes, that’s another rare part of it. So let’s jump in.

 

And I’m going to start by just explaining what is a rare condition, first of all. So a rare condition affects less than one in 2,000 people within the general population. So if it affects less than one in 2,000 people, then it’s considered to be a rare condition. You can also have ultra rare conditions, and that’s when something affects one in 50,000 people. So for our purposes today, we’re going to be looking at these conditions and also just lesser known, discussed, or researched bowel conditions. So some of the things that we might talk about today might not necessarily be rare as such, but it might be rare that somebody is shedding some light on them. And how rare are rare diseases themselves? I always find interesting. Yes, individual rare diseases themselves by definition are rare. But I saw this on the government website. It says there are between 5,000 and 8,000 rare diseases. That’s quite a lot, isn’t it? It says each one affects less than 0.1% of the UK’s population, but together they affect the lives of 3 million people. And then raredisease.org.uk says that one in 17 people will be affected by a rare disease at some point in their lives. So while these individual conditions might be rare, it’s actually not that rare to have a rare condition of some kind, so it’s definitely important that we talk about rare diseases and how people are going to be affected by them. So I’m going to tell you about some lesser known bowel conditions, their causes and treatments, and where you can read patient stories about some experiences of these conditions. We’re going to have a look at CIPO or chronic intestinal pseudo-obstruction; mesenteric plexitis; Hirschsprung’s disease; metastatic small bowel obstruction; paediatric IBD, and enterocutaneous fistula, or ECF. And apologies now in advance, if I butcher any of these pronunciations, as I believe I have done already. I’m sat here as a layperson, just as you may well be, and I’ve definitely learned some things from putting this episode together. So I hope that you do as well and and that you find it interesting.

 

So we’re going to start with CIPO, which stands for chronic intestinal pseudo-obstruction, and we’ll break down the name of this condition in just a minute. But we’ll start with what is CIPO. And CIPO happens when the nerves and/or the muscles in the gut don’t work properly, which makes it difficult or even impossible to move food, fluids and air through the digestive system. So I can imagine already that this is a really difficult thing to deal with if you’re eating and and digesting things, but your nerves or your muscles aren’t moving the food and the fluid through your system as they should. Sounds like a difficult condition to deal with, and it usually affects the small and large bowel, but some people do also experience difficulties with the oesophagus and the stomach.

 

So to break down that name then, chronic intestinal pseudo-obstruction. Chronic means that something persists for a long time or is constantly recurring. Intestinal is of course to do with the bowels. And then this pseudo-obstruction. It’s called pseudo-obstruction because the symptoms are similar to having a blockage in some part of the digestive system, but actually there’s nothing physically there, so it feels like an obstruction and it’s similar to that, but there’s not actually a physical blockage. Hence chronic intestinal pseudo-obstruction. And then you also have PIPO, which is pseudo-obstruction that occurs in children. So that’s paediatric intestinal pseudo-obstruction. And Bowel Research UK is actually partnering with the Pseudo-obstruction Research Trust, or PORT charity, to help fund research into the condition.

 

Symptoms of CIPO are similar to other bowel conditions like bowel cancer, IBD, IBS, so things like abdominal pain, nausea, lots of vomiting, constipation of course, diarrhoea, bladder problems and sometimes trouble swallowing as well. And it’s a common theme with some of these bowel conditions that if there’s an obstruction, it’s natural for there to be a symptom of constipation. That makes sense, you know, not being able to pass your poo. But then there’s also this presence of diarrhoea, potentially, or leakage. And I guess it depends – if it’s lots of diarrhoea or if it’s just leakage depends on the person and the condition. But it is surprising, perhaps, that diarrhoea might be present with a blockage or a similar condition. Because you would think that constipation would be the only symptom, but actually faecal matter can go around the blockage in some cases, but you might not be able to control it, so you get this kind of leakage around the obstruction, which means that you then have this presence of diarrhoea as a symptom as well, or leakage or incontinence potentially. So that’s interesting. And yeah, it’s something that kind of comes up with a few of these things that constipation and diarrhoea are both potential symptoms.

 

So diagnosis of CIPO then, CIPO is quite complex and there isn’t a single definitive test that you can do that will diagnose it, so you can use a few different tests. So one test that can be used is called small bowel manometry where a tube is passed through the nose and down the throat and into the stomach and then into the small bowel. And then there’s sensors there in the tube that can measure the contractions of the bowel wall and then you can also do a full thickness biopsy under general anaesthetic, which is where a small piece of the full thickness of the bowel is removed and then it can be analysed. And then there’s other tests as well that are usually used to rule out other conditions. So by process of elimination, you can say, well, we’ve tested for this and that’s not what it is. We’ve tested for the other and that’s not what it is.

 

Then treatments of CIPO? Well, depending on the individual and their experience of the condition, really. So you can treat the symptoms. So we’ve talked about constipation and diarrhoea and feeling sick, depending on which of these symptoms are being experienced, then you can treat those symptoms. And then potentially also do some changes to diet. And medication that helps speed up the passage of food through the gut to try to alleviate symptoms. Bowel Research UK is funding research into CIPO and the use of MRI to diagnose CIPO. So if you would like to find out more about that, you can visit BowelResearchUK.org and have a look at the research section of our website and you can read all about that.

 

In terms of how rare CIPO is, it’s difficult to tell due to the lack of a standardised definition, so it may not be that everybody agrees on a definition of CIPO. It can also be under diagnosed, and there’s also variation in research focus, so some people who are researching might focus on CIPO and adults. Some may be looking at PIPO, the paediatric version, but studies suggest that there’s nine people per million in adults in Japan that have CIPO, so yeah, not many at all, and slightly more common in males, the same study found.

 

So you can also have a look on our website to see Lisa’s CIPO story. So Lisa has CIPO and mesenteric plexitis and she brought these to my attention and very kindly provided her patient story, which she wrote up is and is on our website, so definitely have a look at that. And I’ll tell you a little bit about mesenteric plexitis, but I won’t say anything else about Lisas’s sort of individual story, because I definitely prefer people to be able to tell their stories in their own words, but definitely have a look at the website to find out more. So mesenteric plexitis is an inflammation of the mesenteric plexuses, which I didn’t know that we had. So the mesenteric plexuses are complex networks of nerves located in the abdomen and they control the involuntary functions of the various digestive organs. So things like muscle movement, blood flow. And we have two mesenteric plexuses. So we have our superior mesenteric plexus, which is located near the origin of the superior mesenteric artery behind the pancreas, and this supplies nerves to the small intestine, the duodenum, pancreas, appendix, ascending colon, hepatic flexure, and proximal and mid transverse colon. And then we have our inferior mesenteric plexus and that’s in front of the sacrum. And that supplies nerves to the descending colon, the sigmoid colon, rectum, and upper part of the anal canal. Mesenteric plexitis is also called panenteric visceral neuropathy. So it’s all to do with the nerves that are involved in the different digestive organs. So you can see that it does have, it’s kind of a similar area to CIPO, which also involves the nerves and the muscles with moving food for the digestive system. We don’t know the cause of mesenteric plexitis, but it could possibly be triggered by viral or bacterial infections, radiation therapy, certain medications, connective tissue diseases or abdominal surgery.

 

And the symptoms are again similar to other conditions, which makes it difficult to diagnose, but it might include abdominal pain, nausea, vomiting, diarrhoea, constipation, bloating, weight loss and fever. Diagnosis can be done by blood tests, X-rays and CT scans, endoscopies, and the biopsy as well of the mesenteric plexus. There isn’t a cure, but medication can help to relieve symptoms, and surgery can remove the affected part of the plexus. In terms of how rare this is, one study suggests that 0.6% of the general population have this. Again, that’s the study in Japan, found. 1.1 per 100,000 people. And again, it’s difficult to say exactly how rare it is because it is hard to diagnose and different studies define and report on the condition differently. As I say, you can find out more about CIPO and mesenteric plexitis on our website. You can go to the About bowels section. You can go to the individual story section and read Lisa’s story and also read about the research into MRIs for CIPO in our research section.

 

Moving on then to Enterocutaneous Fistula, or ECF, which I will now be saying for ease. This is an abnormal connection that forms between your intestinal tract, so your small bowel or your large bowel, and the skin. So a fistula is kind of a connection that forms where it shouldn’t be forming basically. And this particular one, this particular type of fistula forms between the small or large bowel and the skin, and that means that intestinal contents can leak through an opening onto the skin, which, I mean, sounds really painful and irritating to me. Just puts me in mind of when I had a stoma and when I was changing my bag and it would, like the poo would leak if my stoma was being particularly naughty and decided to have a movement during the time in the morning when I was changing the bag and the flange and everything and it sometimes it would, the poo would get onto my skin and that was really painful and yeah, not pleasant. Not pleasant at all. So yeah, to have that on your skin through a fistula. Yeah, sounds pretty painful to me. So that is listed as one of the symptoms is the pain and irritation of this intestinal content leaking onto the skin. Also potentially dehydration due to fluid loss, diarrhoea if the fistula leaks significant liquid. And malnutrition, because nutrients aren’t being absorbed properly. So this is an uncommon condition, but it’s not extremely rare. It is rare to hear about it, which can make it difficult to find support and understanding and yeah, to research and to find research on it as well.

 

Diagnosis of ECF is a physical examination to see where the fistula is. And then you can do imaging tests, so X-rays, CT scans and also something called fistulography. Which is injecting dye so that you can visualise the fistula, the tract. Treatments then depend on the severity and the cause. So some fistulas might heal on their own if you have care like nutrition and wound management. If it’s a persistent fistula, you might need surgical closure. It’s caused most commonly after bowel surgery, but it can also be caused by infections, by perforated ulcers, inflammatory bowel diseases, so Crohn’s or ulcerative colitis, and also abdominal injuries. We have a patient story for this as well. So Lauraine had ECF. And she brought this condition to my attention. And she wrote her story as well. And you can find that on the individual stories section of our website, BowelResearchUK.org, so definitely go have a look for Lauraine’s ECF story there.

 

The next thing that I wanted to talk about is Hirschsprung’s disease, which is proving to be a bit of a tongue twister for me, I don’t know if you’ve noticed! I’ll try not to say it too many times because I I’ve failed twice now, I think, Hirschsprung’s disease. So this is also known as congenital aganglionic megacolon and it’s a birth defect that affects the large intestine. And this involves the absence of nerve cells. There’s a lot going back to nerve cells, isn’t there? There’s a pattern here, there’s a common theme. So this is the absence of nerve cells or ganglion cells in a part of the colon. And this can again provide problems with moving the stool or poo through the intestines, so this can cause a lot of constipation. So normally the colon or the intestine has ganglion cells that control muscle movement and that helps to push the pool along. In Hirschsprung’s disease, some or all of the cells are missing in a section of the colon. So this is usually the rectum and the lower sigmoid colon. So without these nerves and these nerve signals, the affected part of the colon where these nerve cells are missing can’t contract effectively and can’t push the stool along effectively, so that causes the stool to build up and create a blockage in the bowels. So symptoms, again constipation, and also as it affects babies in the majority, so babies not having their first bowel movement in the first 48 hours of life is a symptom. Also abdominal pain and bloating, vomiting, diarrhoea again due to the stool leaking around the blockage, and passing small or watery stores. Also loss of appetite and delayed growth. And distension, which is similar to bloating, but distension is the measurable increase in the size of the abdomen, so you can physically see and measure the bloating or the distension. It’s a visual thing that you can see.

 

Diagnosis can be through rectal biopsy so taking the small tissue sample from the rectum to check for missing cells. X-rays can also look for trapped air or stool in the colon. And barium enema can use a special contrast liquid to see the colon and see the blockage in there to diagnose Hirschsprung’s disease. Treatment: So this always requires surgery to remove the affected part of the colon and create a connection between the rest of the healthy colon that remains and the rectum. And then sometimes people will have a colostomy or stoma before having this definitive surgery as well. So this can be inherited, but mostly occurs spontaneously, and it’s been found to affect one in 5,000 babies.

 

I’d also like to talk today about small bowel obstruction. As the name suggests, it’s an obstruction in the small bowel and prevents food and digestive juices from passing through normally. There’s lots of different causes for a small bowel obstruction and small bowel obstruction, because there’s lots of different causes, isn’t particularly rare. Different causes are adhesions, which is the scar tissue that can come after abdominal surgery and that can trap loops of the colon and cause an obstruction. So you have adhesions, you have hernias. So that’s a kind of protrusion, kind of bulge of an intestinal leap through a weaker spot in the abdominal wall and that can cause a blockage. Tumours, so growing within or outside of the bowel, can press on the bowel and cause a blockage. Another big word that’s – I’ve clearly challenged myself with the topic of this episode – so intussusception. And that’s one part of the small intestine telescoping into another. So if you imagine a collapsible telescope where one part kind of fits into the other. Imagine if that was kind of stuck halfway so that’s intussusception, when a part of the small intestine is kind of collapsing into another part. You also have volvulus, which is the twisting of a loop of the colon, which can cause a blockage. And gallstones. Large gallstones can sometimes migrate into the small intestine and cause a blockage there. And then finally, you have foreign objects, so if somebody swallowed something inedible that they shouldn’t have swallowed, something that isn’t food, something that’s an object. And that can get stuck in the small intestine as well. So there’s lots of different ways to have a small bowel obstruction. The symptoms of a small bowel obstruction are severe abdominal pain or cramping, nausea and vomiting, bloating and distension, constipation or inability to pass gas, loss of appetite, dehydration. And in severe cases or in children, also fever can be present. Diagnosis is a physical exam, taking medical history of the person or having blood tests. Having imaging tests like X-rays, CT scans, ultrasounds and in some cases you can have a barium enema. And then treatment will depend on the severity and the cause of the obstruction. So some mild cases might actually resolve on their own. If you have something like IV fluids or pain medication, it can resolve itself and pass. But then, more severe cases can require surgery to remove the blockage or repair whatever the underlying cause is that’s causing the blockage to occur.

 

So why are we talking about small bowel obstruction then, if it’s not particularly uncommon? Well, what is less common is tumours in the small bowel. And also metastatic small bowel cancer. So cancer that has spread to the small bowel. And estimates suggest that this occurs in roughly 0.2% to 1.5% of all cancer patients. So just another thing to kind of add to our inventory, if you like, of rare bowel conditions and bowel diseases is small bowel cancer and metastatic small bowel cancer, which can lead to small bowel obstruction.

 

Moving on then to CMMRD or constitutional mismatch repair deficiency, which is something that I have myself. And it’s not just related to the bowels, it is broader than that. It affects one in a million people, so it is an ultra-rare condition. It’s a genetic condition that is inherited through families, and it’s to do with your genes, and it basically increases your risk of getting different types of cancer. To explain CMMRD or constitutional mismatch repair deficiency further, we should talk about Lynch syndrome. So Lynch syndrome is not rare, but lots of people who have it, in fact, about 95% of people who have it, don’t know that they have it. So Lynch syndrome is a genetic condition that increases people’s risk of a few different types of cancer, but particularly bowel cancer. It can increase the risk to up to 80%. It can also affect other types of cancer as well, so gynaecological cancers and some others, it depends which gene is involved. But essentially with Lynch syndrome, we all have genes that help to repair problems in cells. So if something starts to go wrong with a cell when it’s multiplying, then we have genes that can correct these problems and then that can prevent cancer from recurring. If somebody has Lynch syndrome, then they have kind of deficiency in these repair genes, these mismatch repair genes. So it means that we don’t have that defence so much against cancer developing. So essentially our internal editors, if you like, who correct all of the mistakes that are made in cells, are not working, they’re broken, they’re asleep at the desk, they’re not working. So that can increase a person’s risk of getting different types of cancer. So that’s Lynch syndrome and again, it’s inherited through families. Everybody has two copies of the gene, the affected gene. So let me see if I can rattle off the affected genes. I know that mine is PMS2 and then you also have MLH1, MSH2, MSH6 and more rarely, I believe is EPCAM. And also PMS2, which is mine. So if you have Lynch syndrome then you’ll know which of your genes are affected. Most likely if you don’t have Lynch syndrome, then what I’ve just said probably doesn’t mean very much. But whatever of those genes is affected, we each have two copies of the gene. In Lynch syndrome, if you have Lynch syndrome, one of those genes will be, you’ll have a mutation. So if a person has Lynch syndrome and they have a copy of the gene that’s working fine and they’ll have one that has a mutation isn’t working properly. And then if they have children, then that child will either inherit their good gene or their bad gene. So you put both parents together. The child will, say, generally, you might have one person who has Lynch syndrome and then their partner who doesn’t have Lynch syndrome. So the child would inherit a good gene from the parent who doesn’t have Lynch syndrome because that’s the only kind of option available, and they will either inherit the good gene or the bad gene, the mutated gene from the person who has, the parent who has Lynch syndrome. That means they have a 25% chance of getting Lynch syndrome themselves. So that’s Lynch syndrome. What I did is I went the extra mile and developed, I had CMMRD. And that’s what happens when both of your genes are broken, because you’ve inherited Lynch syndrome from both of your parents. So it turned out that both of my parents had Lynch syndrome and I inherited both of their broken genes essentially. So I could have done what my sister did, which was inherited Mum’s good gene and dad’s good gene. Or I could have inherited a good gene and a bad gene. A good gene from mum and a bad gene from dad or vice versa. But what I actually did is inherited both of their bad genes, which again very rare. One in a million people have CMMRD and it just further increases your risk for various types of cancer and is different types of cancer to Lynch syndrome. But I have been affected by bowel ones, so I had bowel cancer when I was 22 and then duodenal cancer and also womb cancer when I was 30. So most people who have CMMRD develop cancer in childhood, so mostly before the age of 18. And unfortunately, you know that means that a lot of people don’t make it to adulthood. And so I’m definitely doing well by all accounts at the moment. So Lynch syndrome and CMMRD are diagnosed through genetic testing. So you would go to see a genetic counsellor who would sort of get family history and tell you all about kind of the possibilities. That’s what happened with me, me and my parents went to the counsellor. We talked about all the possibilities of what could be going on. I was sent there because I’d had bowel cancer at such a young age and they wanted to find out why. I think they always suspected Lynch syndrome. And then we had blood tests. And found that my parents have Lynch syndrome and I have CMMRD and that’s how it was diagnosed. In terms of treatment, you don’t treat Lynch syndrome or CMMRD as such. What you do is you have routine testing. You go for screening and, you know, you hope for early detection of any problems that have arisen. And that’s the main thing really. That’s what you do. You go to get your screening on a regular basis and make sure that you’re being sort of looked after by your consultant, by your hospital. You’re getting the screening that you need and then hopefully nip anything in the bud as quickly as possible. There’s more information about Lynch syndrome and CMMRD on the Bowel Research UK website. I’ve blogged about it before. We have an information page about it as well.

 

So moving on then to paediatric IBD. IBD or inflammatory bowel disease itself is common. So around 300,000 people in the UK are living with IBD. When we talk about IBD, we’re talking about Crohn’s disease and ulcerative colitis. But IBD is not common in children. And when it’s present in children, it can impact their growth and development. It can cause delays in puberty and potentially lead to nutritional deficiencies and growth issues, particularly with Crohn’s disease. And as with many illnesses, it can have a psychological impact as well. So diagnosis of paediatric IBD is blood tests, stool tests and endoscopies. The treatment is the same treatment, as you would give to adults is also effective in children. And this focuses on controlling the inflammation and preventing flares. And it can include medication and dietary changes and sometimes surgery as well. And what treatment specifically will depend on whether it’s Crohn’s or colitis that we’re talking about. Paediatric IBD is more common than you might think, but it’s still a rare chronic disease in children, and it affects one in 250 children worldwide or 0.4% of the paediatric population. It accounts for 20% to 30% of all IBD cases. Crohn’s disease is slightly more common in paediatric IBD compared to ulcerative colitis, and it affects roughly twice as many children.

 

I’m going to go through just a few more and I don’t have quite as much on the rest of these, so just briefly to talk about some other rare and lesser talked about bowel conditions. So we have inflammatory and immune disorders such as microscopic colitis. This is colitis that can appear normal in a colonoscopy potentially. So this is microscopic colitis, the abnormal reaction of the immune system which causes chronic inflammation of the inner lining of the colon, despite appearing normal in colonoscopy, which makes it that little bit rarer than colitis. That’s microscopic colitis. And then there’s a few vascular and structural abnormalities as well. So superior mesenteric artery syndrome or SMAS. And that’s the compression of part of the duodenum by the superior mesenteric artery. So here, part of the duodenum, which is part of the small bowel, is being compressed by the superior mesenteric artery. And that can cause nausea, vomiting and bloating. You also have bowel ischemia and that’s the lack of blood flow to the intestines. So when you don’t have that blood flow to the intestines, that can lead to tissue damage, and it can also be very painful. And this can make it difficult for the intestines to work properly. And then more words that are testing my pronunciation. We have intestinal lymphangiectasia. I may well have edited that to better pronunciation by the time this goes live. But this is abnormal lymphatic drainage in the small intestine, and that can result in protein and fat malabsorption. And then our final rare condition is short bowel syndrome. And that’s when the body can’t absorb enough nutrients from the food that you’re eating, because a significant portion of the small intestine is either missing or isn’t functioning. So that can lead to malabsorption and malnutrition. So that’s short bowel syndrome.

 

So I hope you enjoyed this pit stop around rare and lesser, lesser known or lesser spoken about bowel conditions, then. It’s clear that a lot can go wrong with bowels and because a lot of the time, the symptoms between these conditions, as you will have heard are all quite similar, so we’ve talked about constipation, diarrhoea, feeling sick, bloating, distension. They’re all common themes in all of these different conditions, and it can make it difficult to find out what is wrong. It can make it difficult to diagnose something. And sometimes tests are done as a process of elimination to rule out different conditions, and sometimes there there’s not a definitive test where you can do one test and say yes, this is what this is for sure. So that does make things trickier. And the fact that the conditions are rare. The fact that they’re not spoken about very much and they’re difficult to diagnose. Sometimes there’s disagreement between people on exactly how to define a condition so one clinician or researcher might have one idea of how to define a condition and another may have a very different idea of what symptoms or what other attributes should be included in a definition of a condition. So that can all make it difficult to define, to diagnose, to treat, and to research all of these conditions. So there is still lots of research needed for so much of all of this stuff. And of course at Bowel Research UK, we want to end bowel cancer and bowel disease. You know, our mission is for people to no longer be suffering and dying from various conditions, so there’s lots more research to be done and lots more for us to talk about on this podcast. And we’ll absolutely be doing this. And lots more research to be funded as well. So if you’ve been affected by any of these conditions, if you’re interested in any of them, if you know somebody who has them, please do donate to Bowel Research UK. You can go to BowelResearchUK.org to make a donation and help us to fund more research into bowel cancer and bowel disease. And that’s all different types of bowel conditions, so the rare ones that we’ve spoken about today. And the more common ones as well, we don’t just want to find cures and treatments. We want to make those treatments easier for people to cope with. We want to improve people’s quality of life. We really just, we want to make the world a better place for everybody who is living with bowel disease, bowel conditions, bowel cancer. So please do donate if you’ve found this episode interesting. If anything’s resonated with you, do have a look at the patient stories on our website and have a look at the research that we’re funding. And you can also get involved with research yourself by joining the PaRT network. PaRT stands for people and research together, you can go to our website and fill in the form to join the PaRT network and I will personally be sending you an e-mail every month. I’ll send it to the whole PaRT network and that will contain all of the latest opportunities for getting involved in research so. Please donate. Please join the PaRT network. Please keep listening and I’ll be back with a new episode in a couple of weeks. And also if you would like to share your own patient stories, please do e-mail me sam@bowelresearchuk.org. You can get your story on the website, whether that’s a story about a rare bowel condition or a more common bowel condition. Everybody’s story is different, whether the condition is rare or not. Your story is unique to you and it really helps people to hear about other patients’ stories. And it helps all of us if we just keep talking about bowel conditions because it’s not something that everybody is comfortable with and there is still stigma there around lots of different symptoms and conditions. So we want to break that stigma as well. I know that was a lot of calls to action! Please pick one and – or more than one if you like – and engage with us. And thank you very much for listening and I look forward to bringing you another episode very soon.

 

Thank you for listening to Can I Butt In? This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.