Sam and guest Diane Kelsey draw attention to microscopic colitis – what is it, how is it different to ulcerative colitis, and how does it affect diet and lifestyle? Diane was diagnosed with microscopic colitis in February 2021 shortly after retiring from teaching, and she explains how her condition was diagnosed, what the symptoms were, how she manages it and how it affects her daily life.
Transcript
Sam
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. Hello. We’re here for another episode of Can I Butt In? And it might sound like a small problem, but microscopic colitis is a big issue that we’re drawing attention to today. I’m joined by Diane Kelsey, who was diagnosed with microscopic colitis in February 2021, shortly after retiring from teaching. Hi, Diane. Welcome to the podcast.
Diane
Hi. Hi Sam. Thank you.
Sam
Lovely to have you. And do you want to start just by sort of telling me a bit about yourself, sort of generally outside of microscopic colitis before we before we go into it?
Diane
Yeah, I was a teacher for 45 years until I retired in the August of 21. Sorry, 20 and had a very healthy lifestyle. I was a food teacher, so knew all the sort of things that I should be doing. And yes, I was doing all of those. And I’ve always liked to keep fit, even if it’s just by walking and actually since lockdown occurred. You know, when we were only allowed out the house once a day or whatever, started walking and I’ve continued doing that ever since. So every day I walk at least twice or possibly three times a day, particularly in the summer. So I’d always thought, yeah, I’ve never had any major problems at all, so. It was completely out of the blue when this all started.
Sam
Well, well done you for kind of keeping up the walking during COVID. I wish I had done that. We lived next to a park during COVID and I think that, I mean, we lived in that flat for I think about six years and we visited that park during COVID more times than we ever had in the entirety of the most of the time that we’d been there. Really got to know it.
Diane
Yeah, exactly. A lifesaver.
Sam
Absolutely. I do love a good walk. So tell me about how it all started then – what were the symptoms or what triggered sort of needing to get this diagnosis?
Diane
Well, it all sort of started about November in 2020 and I just noticed that the frequency of emptying my bowels, it was only like once a day. But I never missed that, if you know what I mean. And the stools were a lot looser. And so I didn’t think too much about it. Cause I’ve always had a high fibre diet. And I just thought, well, perhaps I’ve eaten too much fruit that day. You know, something like that. But it wasn’t. And, well, and then I started losing a little bit of weight. I’m not big anyway. And I remember I took part in a vaccine programme. I was on a placebo at the time, but I didn’t know that. And I sort of maybe thought it was linked to that a little bit, so didn’t take a great deal of store by it. But by February in in 2021 as you mentioned. On the Monday I’ve been suffering from chronic diarrhoea, so I was having to go to the toilet, dash to the toilet. May I say with urgency 8 times and also waking up in the night. I suffered a little bit from faecal incontinence during the night. Suffering from nausea as well as the weight loss and the weight went down from 52 to 50 grammes, which I know it isn’t a lot and it’s only classed as mild but for somebody who doesn’t weigh a lot anyway. You know, I could notice the difference.
Sam
Yeah.
Diane
And just by not even weighing myself, but just by looking, you know, at my own body and my clothes. Particularly, trousers you couldn’t. You know, you could see a difference. So I managed to get into an emergency appointment on the Tuesday to see a doctor. And actually it was a third year student doctor, along with the normal GP and just explained. She felt my tummy. And then they ordered blood tests and asked me to bring in a stool sample, which… I’d already done the FIT test. You know, the national screening for bowel cancer in the November. And that comes back as no problem at all. So negative. And so. They just told me to keep drinking. I wasn’t really eating anything because it just went straight through me. So as they organised blood test I was supposed to go to a park and ride station, you know, at that time when they had COVID tests, well, this had been taken over by blood testing station. The other side of Cambridge. And I just said, I can’t. I can’t get there. Well, I could get there. Sorry, but if I had an incident where I needed the toilet urgently. I couldn’t manage, so thankfully they managed to do it at the doctor’s on the Wednesday, so I had a whole range of blood tests. They tested also for celiac. As well. And then I had an appointment on the Friday, now by the Friday the diarrhoea had slowed down, so it was only, I think, twice a day but with great urgency and certainly on waking in the morning, you just had to get straight out of bed. And go straight to the toilet. There’s no two ways about it. And again it was very loose inconsistency, but not like the watery that I’d had on the Monday, the Monday and Tuesday. So I went back on the Friday, they hadn’t received the tests back. The FIT test, but they had got the CALCA protein test and that was abnormal, but it wasn’t in the huge range where you know, they have to do something about it. But they decided with the other symptoms that I was suffering from, they would put me on the cancer fast track. The two week fast track. Which is based in Addenbrookes. So I’m very fortunate to have Addenbrookes on my doorstep. Just to check for cancer, you know, to see whether that was a problem. Now at the time I didn’t realise, the GP, and I only realised this the other day when I was looking through my notes that the GP had actually diagnosed that but hadn’t told me.
Sam
Oh.
Diane
I only found that out about a week ago.
Sam
Oh right.
Diane
So he in the back of his mind. So that’s I mean that was great that he was able to identify it, but obviously he didn’t like to give me a diagnosis, you know, before further tests had been carried out.
Sam
Well, I’m sure it could have been lots of different things, couldn’t it? Because the symptoms that you describe are, you know, also linked to bowel cancer and other things. There’s a lot of crossover weight, weight loss and change in, in your sort of stool habits. And yeah, it could, it could have been. So it’s good that they were testing for all sorts of things to find out which one it was.
Diane
Yeah. And in fact, there’s one thing I forgot to say. There was no blood in the stools because that is a red flag, you know for bowel cancer.
Sam
Yeah.
Diane
And for ulcerative colitis as well. So there was none of that. So my appointment came through on the fast track for March. It was, March 19th I think it was. And I had to have an endoscopic examination, so obviously for people who don’t know, I think the worst thing is the prep that you have to do for it and you.
Sam
Yeah.
Diane
Have to take a powder substance over a day, depending on when your examination’s going to be and basically stop eating and be near a toilet because basically it’s a very powerful laxative which cleans out the colon completely because they need to have basically, I know it sounds a bit odd, a clear passage for the camera to be able to go through the colon and just see if there’s any difficulties. So I went along for that. In the meanwhile the diarrhoea had ceased, but still very soft stools and very loud rumblings in my abdomen. So I had my daughter with me, who’s 28 years old, and she could hear my abdomen from the other side of the room. So if you can imagine being, you know, when you’re really hungry. And your tummy rumbles. Well, if you could amplify that at least six or seven times.
Sam
Oh wow.
Diane
Yeah, exactly. And also suffering from frequent wind and I have to say it was foul. Foul smelling wind, if you can imagine bad eggs, sulphide. So like that and also extreme fatigue as well. So you just, you just can’t do anything or if you do and you think you can do a bit more next day you suffer from it, you know, for the for the day after. So I went along for the procedure. I was sedated. And basically you know what’s happening and you can actually watch on the screen. And then that didn’t take very long at all. And while I was just in recovery, the consultant said it’s microscopic colitis. But what we’ve done is we’ve done some biopsies, which we’re going to send off to confirm, but there’s no signs of bowel cancer. So obviously I was very relieved at that because my husband had suffered from bowel cancer previous two years and had to have an operation. So of course that was obviously in the back of my mind. So I mean that was good that I felt like that. So you know what you do. You get home. I slept all afternoon because of the sedation. But next day, Google doctor, here we go. What’s microscopic colitis?
Sam
Yeah.
Diane
And you don’t know whether that’s a bad thing or a good thing, but I tried to use recognised sites, so good health, bowel and bladder website as well as NHS, but I have to say the NHS has very little information at all on microscopic colitis.
Sam
I guess had you even heard of microscopic colitis before?
Diane
No. And in fact, I know we’re going to talk about a little bit later, but there are two types of microscopic colitis, and. But perhaps I’ll talk about that a little bit later so you can see the difference. And then obviously I had to wait for the appointment to come through from the clinic, the gastro clinic. And that came through in April. And I’ve never actually seen the consultant face to face. It’s always been a video call and that was obviously part of, you know, COVID procedure at that time. But yeah, it didn’t really matter because I’d had the tests. And he thought, because my symptoms had calmed down. Then to just have loperamide, and just in case people aren’t aware, they’re the sort of tablets the anti diarrhoea tablets. So if you go on holiday, you take them with you for holiday tummy or one of the types that you can take with you.
Sam
Yeah, like Imodium for example.
Diane
Yeah. Yeah, exactly. Yeah, that’s exactly it. Well he said that if that didn’t help then he would prescribe Bucidamide, which is a steroid which is targeted for the bowel. So people throw their hands up in horror when they hear the word steroid because they think, you know the guinea pig face and putting on weight and other side effects. But I have to say because this is targeted for the bowel, I didn’t get any of those symptoms at all.
Sam
And that reduces the inflammation does it, the steroid?
Diane
Oh, within. Within a few days. I couldn’t believe the difference it made.
Sam
Oh, that’s great.
Diane
Yeah, absolutely.
Sam
So it’s always sort of a case of targeting the symptoms and trying to reduce the symptoms rather than something that will actually sort of change the underlying cause, yeah.
Diane
Yeah. Yeah, that’s it. And. And so I had a course for it was 8 weeks at 3 tablets a day. And then it was. And then I went down to two tablets a day and then that was for another two weeks. And then after that, it finally it was one tablet a day for another two weeks. And then you have to stop completely because steroids are designed for not long-term use. And you can’t just come off them. If, for example, I thought. Ohh I’m a lot better now, I don’t need to take these tablets. I don’t like to take tablets and you can’t do that with steroids. You’ve got to titrate them down. In other words, you’ve got to reduce. Them so the body can just get used to the effects. You know that it’s been producing in the body.
Sam
Yeah. Do you know what happens if you just if you do just stop taking steroids? What effect does that have?
Diane
I don’t really know, Sam. I wanted to make sure, you know, because the consultant was giving me this advice to follow it, you know, by the letter.
Sam
Absolutely, yeah.
Diane
Which I did do. Yeah. So I finished those in October because the consultant said to. He would see me in six months’ time. Now within a week, can you believe that, from finishing this steroid, I developed the chronic diarrhoea again. So basically it’s like a flare up. So I didn’t do anything differently with the exception of stopping the medication. So I’ve got bloating. I’ve got the weight loss, I’ve got the nausea. Now the nausea at this time was far worse and I had to get anti-sickness tablets from the GP to combat that. So I emailed the medical secretary of the consultants and just explained what had been happening and she got in touch with the consultant and the consultant suggested that if the loperamide didn’t work and I’d been taking it, cause I’d in the back of my mind. I remember I’m saying if it starts up again, start with that first. But that was just making me constipated. So. I thought there’s no point in continuing with this, you know, get the consultant’s advice. So the GP then prescribed a full course again. Which I started taking, of the same steroids, because obviously you’ve got the consultants letters. Now. I was supposed to have an appointment later on in November, but that was cancelled again, I think it was because of COVID. So I managed to get one in February. After finishing that second course. I then started again with the colitis and again exactly the same symptoms and what I tried to do is I tried to manage it for as long as I could. But you know, when your quality of life is, you’re thinking this is pointless. I can’t go out. And being interrupted in the night. I’ve got to be so careful what I’m eating. I’m losing weight and I can’t afford to lose weight. So again, I’ve phoned up the gastro clinic and spoke to a specialist nurse. Who then got in touch with the consultant again, and he prescribed the third course of Bucidamide again, full course. And just taking it, you know that period of time and then to come off. Now, he told me in my February appointment that I’d got steroid dependent microscopic colitis.
Sam
Right.
Diane
So what he did then is he put me on a low maintenance dose of the same steroid and that was 3 milligrams a day. And actually that did the trick. Again, that stopped those symptoms and then I took that for the six months until the next time that I spoke to him. I’d had a few flare ups in the meantime. I love spicy food or I did like spicy food.
Sam
Me too.
Diane
And that’s the one biggest thing I miss. So I thought I would treat myself to a couple of onion bhajis. Well, was that a mistake.
Sam
Ohh wow. Ohh no.
Diane
Oh yes. I suffered for several days afterwards. With an upset tummy and the bloating, the abdominal spasms. Uh, because of that.
Sam
What a shame.
Diane
So yeah, I obviously realised that that spicy foods are a major trigger. And so I have to be very careful of what I eat. And so I then had the three milligrams a day for the six months and then the last appointment was last May. Oh, no, sorry. Before that, Sam, an appointment. And he said take 3 milligrams every other day and see how you manage.
Speaker
Right.
Diane
Which I did for another six months. That leads us till May of last year. And he said well, it seems like you’re managing. Just come off it, but if you get any flare ups then I’m to get straight in touch with the medical secretary who will organise the blood tests. She’ll organised the sigma scope rather than the endoscopic procedure because it’s in the lower colon.
Sam
Yeah, the flexible sigmoid flexible sigmoidoscopy, so you don’t need a full colonoscopy.
Diane
Yes. I mean, you still have to. Do the prep, I think because I’ve not had it so. So touching wood, crossing fingers and everything, I’ve been OK.
Sam
For flexible sigmoidoscopy, because I have these every year or every couple of years, I do an at home enema so I don’t have to have the full prep. Yeah, I don’t know if it will be the same for you, but yeah, because it doesn’t go in very far. I just need to do an enema before I go in.
Diane
Ohh right. Oh.
Sam
Well, giving the good news on the podcast!
Diane
Well, you see people sort this sort of information that that they don’t always fully understand. You might read it, but you don’t always fully understand. You know, what’s involved.
Sam
Yeah.
Diane
So I should have another appointment coming up in May. So what I’m going to do is get in touch with the medical secretary and see if one’s in the pipeline. And say but what I am going to do is because I’ve noticed in the last maybe four months or so that when I eat my evening meal. I get bloated, but I also suffer from frequent non-smelly wind and I thought it might be a good idea to get a test done for celiac. And then hopefully got the results for when I have my appointment with the consultant. So that’s something that could be ruled out, but I’ve still got to get that organised. So that’s my job for next week.
Sam
Yeah, well, there’s a lot of sort of admin work, isn’t there, around being a patient and having to organise all these things. Does my head in to be honest.
Diane
Funny you should say that, Sam. Because when I was first diagnosed before I saw the consultant in the April of 2021, I started keeping a bowel diary. Now people probably think what?
Sam
That’s a good idea. That’s good.
Diane
So what I did is every day without fail, depending on how I felt I would monitor my stool. How many stools I have that day and I have to say the consistency of them because I used the Bristol Stool Chart, which I knew nothing about before all this and it gives you the different stages. And then I used to e-mail that to the medical secretary before. So the three occasions when I was on the three. Three full courses of bucidomide the consultant always had my bowel diary. So he’s got that information, you know, before I actually speak to him. So it gives them an overall picture. Yeah, that helped.
Sam
Well, it’s a good idea. And the Bristol Stool Chart, is that the one where it has sort of drawn pictures of like the consistency of pool like here is a really solid one here and all the way up to, like basically a liquidy one.
Diane
Yes, yeah, use that one that’s internationally recognised.
Sam
That’s a good idea. Yeah. Well, when I had my stoma reversed and my internal pouch, because it takes a while for the internal pouch to kind of learn to absorb the fluids and start working properly, you do have very loose stools for the first few days, few days or a couple of weeks. So I did a similar thing. We used to keep an Excel spreadsheet, just like writing down how many times I’ve been to the to the toilet, which is why I remember now that the first couple of days I was going about 14 times a day, but then it eventually sort of reduced to about seven after a week or two. So yeah.
Diane
Yeah, because the thing is Sam and I know people say this. If you go to a medical appointment always write down beforehand the questions you want to ask, because in the moment it’s very easy to forget. So by doing that as well, that helped me because I’d have it at the side of me when we did, you know the video calls, so I could, you know, refer to it and identify a particular occasion. If I’d flare up.
Sam
Yeah. And then you can write down the answers to their questions. As well, yeah.
Diane
Yeah.
Sam
Shall we talk about the two different types of microscopic colitis? And yeah, I know you have your quite knowledgeable in your condition, which I think is great. I think, you know, knowledge is, is power and that’s really good cause I think people tend to fall in a camp of either wanting to know as much as possible or like myself, I used to fall into the camp of I do not want to know anything. I don’t even want to think about it, I’m understandably, now working for a for a research charity, I’m not quite that way anymore, but yeah, I do think it’s great to sort of know about your condition. So do you want to tell us about the two different types of microscopic colitis?
Diane
Yeah. Certainly. One thing I would say, Sam, before we start is I try and tell as many people as possible to try and get the message out there. In fact, I’ve got a next door neighbour. Sorry, next door but one neighbour, who six weeks ago started with similar symptoms. I persuaded her to go to the doctor and she’s just been diagnosed with Crohn’s.
Sam
Oh.
Diane
Yeah. So she was coming to me and asking me, she said, well, I don’t really want to ask you. This is quite personal. I said no, no, no. Ohh, now let me just explain. So she had a little bit. I know it’s not the same, but she had a little bit more of an understanding of what was going to happen to her when she was going through the procedure. So I think that helped her. In some way. So I think the more people who know about it so they can recognise and even if they haven’t got the colitis, it may make them go to the doctor to just get investigated.
Sam
Yeah. Because as we said before, there’s a lot of a lot of symptoms that could actually be multiple different things, even though they share the same sort of crossover of symptoms and yeah, definitely. The more people that that talk about it the better. Yeah, we need to do away with the stigma entirely. I think. So we can just have these open conversations.
Diane
Yeah, indeed. So, microscopic colitis. I think it’s a bit like an umbrella. And then underneath the umbrella are two different types, so there’s the collagenous colitis. That’s the one that I have. And there’s the lymphatic colitis. So my collagenous. Just underneath the lining of the colon everybody’s got a layer of collagen and they’re like, it’s, they’re protein, it’s protein building blocks. But unfortunately with the collagenous, the collagen has become thickened. And so it makes it difficult for any liquids to be absorbed by the body. And so that means it leaves even more watery waste actually in the colon which has got to be excreted via the rectum.
Sam
Right, that makes sense.
Diane
So that’s, you know, the chronic watery diarrhoea. And that happens when it becomes inflamed, but also with the collagenous, you have more white blood cells. As well. So that’s another way that they can tell. Now the lymphatic colitis, it’s they have a lot more white blood cells and there’s no thickening of the lining. At all. So that’s how they can tell. Now what I forgot to say is when they did the endoscopic procedure. They just by looking at the lining, can’t tell you’ve got collagenous colitis. That’s why they have to do the biopsies.
Sam
Right.
Diane
So that has to be seen underneath the microscope as some forms of bowel cancer they can determine just by sight, you know, through the camera. So both have similar symptoms. They are associated with autoimmune diseases. So, for example, celiac. So again, that’s why, you know, I mentioned before, I’m going to get tested again.
Sam
Yeah.
Diane
Thyroid disorders, which I hadn’t realised, but if you smoke you are more at risk from it as well and also some medication. So some non-steroid inflammatory, anti-inflammatory drugs. So in particular ibuprofen, aspirin and naproxen. Now I didn’t realise Sam. I started becoming unwell in the sort of November 2020. In August 2020, I had chronic lower back pain where basically I couldn’t move and I was put on a course of naproxen. Now I had the gastro tablets to go with it because it is a known risk, you know to causing stomach problems. I don’t know if it was that that triggered it. I’ve never really. The only tablets I take are vitamin D and calcium anyway, so I’ve never been one, you know, for taking over the counter medications. If I’ve got a headache, I just, you know, put up with it, drink extra water or whatever. So I don’t know if it’s linked to that. But they also say it could have been caused by a virus infection. And I hadn’t had a virus infection or it can be genetically linked. But none of my parents, neither of my parents, you know, suffered. So, you know, it’s hard, really. And The thing is this microscopic colitis. You’re more likely to get it between the ages of 50 and 70.
Sam
Right.
Diane
And it’s more likely to be women.
Sam
Ohh OK.
Diane
Yeah, men can get it, but it’s more likely to be women. So they’re not, there’s, there’s still an awful lot of research to be done on it because it tends to be one of the types of well, it’s classed as an inflammatory bowel disease. So is IBD, it’s a forgotten one. If you know what I mean. And that’s why there’s not an awful lot of information out there about it.
Sam
Yeah, but people know quite well. People are more likely to have heard of ulcerative colitis.
Diane
Yes.
Sam
Should we mention here what the difference is between ulcerative colitis and microscopic?
Diane
Certainly. What happens here is the immune system starts attacking the lining of the gut and because it starts doing that, that’s where the colon and the rectum become inflamed. And it thickens, and it causes small ulcers and the small ulcers become ulcerated and they can bleed and produce the pus. So you mentioned, you know, I mentioned before about it was non blood in stools. Well in this case there is blood present in the stools.
Sam
OK, so that might have shown up on a FIT test.
Diane
Yeah, exactly. Yeah. And I think that is one of the things they sort of automatically look for when they do the FIT test. You know, with this bowel screening, it is visible through a colonoscopy.
Sam
Yeah.
Diane
And it can be detected with other tests as microscopic colitis. Really, it’s only the biopsies for certain. And the CAL protein test, you can still have a high amount. Shown in it, but it doesn’t necessarily mean it’s colitis.
Sam
Can you explain what a CAL protein test is?
Diane
It’s the blood tests that they do and I think they’re looking for the white blood cells in there. I think that’s it. Yeah. Now with the ulcerated colitis, it affects the body in other ways. So I’m just so grateful I haven’t got it. It’s joint pain and swelling. You can get swelling in the eyes, mouth ulcers, skin rashes. Fatigue is the same that I get, but also because of how it affects the body greatly mental health problems as well. Yeah, and it is. There’s no cure for it, as there isn’t microscopic colitis, but there is an increased risk of cancer. As there isn’t or, it’s very rare with microscopic colitis. Very rare indeed.
Sam
Yeah. So can I just ask because you mentioned that, I mean you had the colonoscopy initially to diagnose the microscopic colitis and you said that you might also be having a flexi sig. Sorry, flexible sigmoidoscopy So what is the purpose of having the flexible sigmoidoscopies, to see kind of if it’s progressed or…?
Diane
If it’s still an active disease.
Sam
Right.
Diane
That’s what the consultants say to make to see whether it’s active or not. So if I’d had a flare up. They would have organised that and they can tell, you know from well, I’m presuming from that whether the collagen layer is inflamed. You know it’s thickened and whether it’s inflamed because it only affects the colon rather than the earlier part of the large intestine. So that’s why. He said. I think he assumed I’d had that before.
Sam
OK.
Diane
But I’d had the full colonoscopy. But. I’d rather have had that Sam and they found nothing else there because obviously they could find, you know, like polyps and could deal with those. But thankfully, you know, I didn’t have any of those.
Sam
Yeah. Yeah. Well, it’s reassuring that they did sort of a full check. Yeah, yeah. Yeah. And you mentioned before about spicy food.
Diane
Yes.
Sam
Potentially causing a flare up, which yes, is a real shame. I love spicy food as well. It’s yeah, really annoying. When these things affected your diet. Is there anything else that causes a flare up or what have you sort of learned about it over time as to what foods are good for you to eat and what foods, not so much?
Diane
I made a hearty soup about a month ago. Lots of vegetables. And I put in a can of chickpeas, you know, to boost the protein content as well. Well, I struggled with that, you know, again for several days afterwards. So when I make that now, I have to divide it. So my husband has the, you know, the chickpeas in there.
Sam
Right.
Diane
And then I have mine without it and my one of my favourites is beans on toast or jacket, potato and beans and cheese. I can only have one tablespoon at the most of baked beans where before I could manage, you know, like half a can. So I try and make sure my diet is high in fibre. So for example I always have overnight oats in the morning for breakfast and try and eat lots of fruits and vegetables. But another thing is alcohol. And have to limit alcohol. I’ve never been a big drinker. Don’t get me wrong, but if there’s a celebration, I can’t have more than two glasses of small wine because again, that will trigger it. So it’s not the day after you know it will be for several days afterwards and I’ll suffer from spasms which I can get away with using a hot water bottle, but you certainly don’t feel like going out anywhere. You know, just in case you develop the urgency. I mean, I still have the urgency now, Sam. And what are we?
Sam
Yeah.
Diane
Now three years.
Sam
Yeah.
Diane
Since I’ve had it. Yeah. So yeah, it’s something you learned to live with, as I’m sure you’re doing as well. And you see the thing is, I’m a vegetarian. I don’t eat eggs.
Sam
Right.
Diane
That’s just through personal choice. I’m not keen on eggs. I don’t like tofu. I don’t like corn. I don’t like these meat alternatives. So I find that my diet is very bland and, yes, can be very boring and that’s what I find hard. There’s only so many things you can do with the vegetables, you know. To me, because I’ve got to with the pulses, I would be normally having, you know, a large amount of those daily. Because it affects it.
Sam
Yeah. And it’s surprising as well, sometimes, isn’t it? What food affects our bowels and how? Because sometimes, like the healthy foods that you think you should be eating and that most people would be sort of recommended to eat actually could have a detrimental effect.
Diane
That’s exactly it exactly. It. Yeah. So it it’s hard trying to get that balance right.
Sam
Yeah. Yeah. And it just shows as well that it’s not sort of a one size fits all thing for all bowels really. But I’m imagining that two people with microscopic colitis like food might affect them both in in different ways. Like nobody is the same in that way.
Sam
Yes.
Diane
Yeah, I mean what I try and do is every now and again, we mentioned about spicy foods, is just see if I can and I use the onion bhaji because that’s a good one. You know that you can try. So I had one. I think it was about 3 weeks ago and it upset me a little bit.#
Sam
Yeah.
Diane
So The thing is, I don’t know if this is you as well Sam, but I find that there comes a time when I think do you know what I’m dying to have something. See. And I have it and I think to myself, well, if my tummy is going to be upset next morning, then it’s going to be upset.
Sam
Yeah.
Diane
But for the moment, do you know what I mean? For the moment.
Sam
Definitely, yeah. I mean, I go to my parents’ house every Friday and my dad makes chilli and dad’s chilli is awesome. It’s so good. But I know that especially because it’s eating it in the evening, I’m going to be up several times in the night and I’m going to have, like, butt burn, you know, it’s going to be as spicy going out as it was coming in. And I’m going to sort of wake up in the night with urgency. And I might have some nighttime incontinence because of it. I’m not gonna stop eating dad’s chilli. My pouch just has to deal with it, and yeah, that’s it’s a sacrifice I’m willing to make.
Diane
Yeah, yeah, I fully understand. So we mentioned before, Sam, you know at the beginning when I wouldn’t go out.
Sam
Yeah.
Diane
Because of the urgency and that’s what I found very hard to deal with because I’m a sort of person who just likes to get out and about.
Sam
Yeah, I mean, did it impact your walks and stuff like that?
Diane
Yeah. And so what I was finding is that if I wanted to go out when my colitis wasn’t that bad, I’d have to wait until I’d been to the toilet. Because I couldn’t go out thinking, oh my God, I’ve got to make sure I know where all the toilets are now. Saying that there was one time I visit my sister every week and she lives 90 miles away and I was travelling on the A14.
Sam
Yeah.
Diane
And bearing in mind that I’d had the urgency in the morning, I had to pull off the A14 within 15 minutes of travelling and luckily there was a McDonald’s near and I only just made it.
Sam
Ohh God.
Sam
That’s so annoying when you planned for it as well and you think, oh, I’m going to be good for a little while and then, yeah.
Diane
Yeah, yeah. And I also bought myself a radar key.
Sam
Oh yeah.
Diane
Radar is for the use of disabled toilets, but I have to say, not all disabled toilets take a radar key. Which I didn’t realise until.
Sam
Some of them are just locked.
Diane
Yeah. Yeah, I found that out. Leicester one time when we went shopping. Yes. And also I downloaded from the bladder and bowel community card and it’s called “just can’t wait”. And I’ve got that in my wallet on my iPhone to tell you the truth, I’ve not used it, but I just wonder how many people, if you showed it maybe to people in cafes or shops, you know where maybe you haven’t gone in to buy anything would allow you to actually use their toilets.
Sam
Yeah, funny you should say that actually, because I saw something on Twitter yesterday where somebody was saying that they have one of those cards and he went to a supermarket and the toilets were closed it seems like, but because he wasn’t in the area, he didn’t realise that, yeah, this had just closed their public toilets for a considerable amount of time for whatever reason, and he showed the staff the card and they wouldn’t let him use their staff toilets. So yeah.
Diane
That’s appalling. The yeah, there needs to be more.
Sam
Yeah, there needs to be. Understanding, yeah.
Diane
And the thing is, Sam, councils, I was only reading last week, a lot of the councils because of their lack of money are actually closing public toilets.
Sam
Yeah.
Diane
So that certainly doesn’t help people who have bowel symptoms. You know, bowel conditions or any other conditions where they need to use toilets. You know when they’re out.
Sam
Yeah. And I feel like it was a thing during COVID as well that some of the public toilets like in, in my local shopping centre, the toilets were closed. It’s like, well, what, what good is that to somebody who you know needs to get out about, do their shopping and needs…
Diane
Yes, yes.
Sam
The toilet, you know.
Diane
Yes. Yeah, yeah, yeah. So it’s a bit like having to plan your journey. So you know where the toilets are. Not necessarily when you’re in the non flare up stage, but certainly you know if you are succumbing to a flare up.
Sam
Yeah. And as well, I guess what you eat factors into that as well and like you wouldn’t, you know try a bhaji you know before a long journey sort of thing you know?
Diane
No, no, not at all, no.
Sam
Is there anything else to mention that we haven’t covered or any sort of final things that you would like to leave people with regarding microscopic colitis?
Diane
Just, I know I’ve already mentioned these two Sam, but just to say again, if you notice any changes in your bowel habits, don’t leave it for months. I’m not saying if I’d gone in November, you know, it would be any better because I think once you’ve obviously once you’ve got the inflammation of the colon you’ve got it because, as I say, there’s no cure. So certainly if you may notice any changes. Or, you know, frequency or consistency without any real reason why that is. Then just go along, make a nuisance of yourself. I mean, I think I was very fortunate with my new GP who spotted it? And also, you know, the third year student who was very good and very thorough. I mean, one thing I did forget to say, Sam, and I suppose people need to know this and I hope it doesn’t put them off that when I did go for the second doctor’s appointment in that week, she did do a rectal examination. So basically, lubricant on a finger on inner glove, obviously, so she could feel around the back passage. So again, that’s like an early diagnosis. You know, if there’s any lumps or whatever, but not to be put off, it doesn’t hurt. It just doesn’t hurt. I think that it’s a thought that puts people off.
Sam
Yes.
Diane
And it’s far better to get it to go along and let them do the investigations. And then lastly, Sam, like I said before, make use of the medical secretary. She’s like the go between. And my consultant’s got a fabulous young lady who I can e-mail first thing in the morning or at night time. You know, for example with those bowel diaries. And she’ll be back to me by 8:30 the following morning.
Sam
Oh, that’s brilliant.
Diane
Yeah. So yeah, make use of the medical secretary because actually my consultant calls her his PA. And that’s basically, yeah, what she’s doing? She’s managing his diary.
Sam
Yeah. Yeah, yeah. And we should say for the symptoms as well. It’s really recognising something that’s different for you, isn’t it? And knowing what’s normal for, for you, as in sort of a change in in bowel habits, because we all know like ohh yeah, I go to the toilet want once a day or whatever (if only!). But yeah, it’s yeah, just recognising, you know, because we are all different. But what is, you know, what is normal for you and what feels out of the ordinary for you?
Diane
Yes.
Sam
Yeah, and actually something that I’ve I forgot to ask because you used to teach food and nutrition, didn’t you? So do you, do you feel like that experience has helped you? How has that kind of impacted how you’re dealing with all of this?
Diane
Yes, it has Sam, because I mean, I’m trying to maintain the healthy diet within the parameters that I know I’ve got to keep to. And so try and substitute. Other foods instead, so if I haven’t tried a particular vegetable or fruit, then I’ll try those out and see if that helps you know with the trying to vary my diet. Yeah. I have to say when I was first diagnosed with that all I was eating was soup. All the time.
Sam
Hmm.
Diane
And banana cause apparently bananas are very good. Or apple sauce? Well, who eats apple sauce? I think that’s come from the states.
Sam
And how much of it would you need to eat for it to be effective?
Diane
Well, I think it’s just to make just to make sure that you’re getting nutrition, not, you know, help the symptoms. It’s just making sure that.
Sam
Sure. Yeah, I see. Yeah. Yeah.
Diane
You’ll get a nutrition into the body.
Sam
Yeah, that makes sense. Diane, it’s been really great to have you on the podcast. Thank you so much for coming and having such an open conversation. And hopefully people have learned a thing or two. And, you know, we’ll try and highlight microscopic colitis a bit more. So there’s there’s more awareness around it.
Diane
It can take for some patients, years before they’re diagnosed with microscopic colitis. Because the health practitioners are not so aware of it. They’re aware of Crohn’s and you know the other types of IBD, but microscopic colitis is low down there. And so I’m extremely fortunate that I was able to be a diagnosed, you know, within that very short time.
Sam
Yeah. What was the time span kind of from symptoms to diagnosis?
Diane
So for the first time we went to the GP that was February 2021. Yeah. Diagnosed April 21.
Sam
Pretty good, yeah.
Diane
Yeah. So that’s very good. Very good.
Sam
Yeah.
Diane
And people just need to keep badgering. You know, if they’re not getting the diagnosis.
Sam
Yeah, advocate for yourself, which I mean, I say that it is very hard and I find it quite difficult. But yeah, you can be your own best advocate for sure.
Diane
Yes. Yeah, indeed.
Sam
Lovely. Well it’s been so lovely to talk to you, Diane. Thank you very much.
Diane
Ok thank you, Sam. Bye.
Sam
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