Natalie's IBS Journey

Episode 2
Life With ibs

Show Notes

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If you're looking for the show notes for episode 2 of Natalie's Podcast, My IBS Story, you're in the right place!

This is an open and honest account of what it was like for me to live with IBS, it may be too much information for some, but I've chosen to be open about this stigmatised and taboo condition, so let’s talk all thing IBS! Poo, pain, the low FODMAP diet, dealing with the symptoms, anal fissures and more!

Want the full transcript? Click here.

 

 

The purpose of this episode is to share my story of:

✔️getting diagnosed with IBS

✔️dealing with“no known cure” for IBS

✔️what I tried to help alleviate the IBS symptoms

If you want to skip ahead:

 Getting diagnosed with IBS

 Dealing with "no known cure"

 Things Natalie tried to alleviate the IBS

  Support for Thoughts of Suicide

 

Natalie's IBS Diagnosis Journey

 

 

 

 

 

 

 

 

 

 

 

 

Dealing with "no known cure"

I didn’t cope with the idea that IBS was a lifelong condition, or that there was "no cure". The thought of having no escape from the pain was unbearable. The thought of having a life of low FODMAPs, daily laxatives and chronic anal fissures made me miserable.

 

I felt very low, being told you’re living with such pain for life did not affect me positively. Despite the psychological struggle my determination did not dwindle, I kept going and tried other things to help me cope with the IBS and its symptoms, so I could live in a bit less pain so I could enjoy life a little bit more.

I am living proof that IBS is NOT lifelong, I have been pain-free and symptom-free now since 2018 (it's 2021 when I'm writing/recording this podcast, My IBS Story).

Things Natalie tried to alleviate the IBS symptoms

 
 
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It took around 7 years to officially get diagnosed with IBS.

Initially (age 16) GPs tried to ease the constipation symptoms with prescriptions. After years of chronic constipation I started bleeding out of my bottom, aka anal fissures (age 22).

 

The bleeding from my bottom freaked a GP out, he thought I might have cancer (age 23). This was the day I was diagnosed with IBS, because I went back to the GP to get a second opinion.

During this journey I had:

🗸 Abdominal checks

🗸 Rectal examinations, yep, that's a visual inspection of your bum hole and a finger up there!

🗸 Been told I needed to go on the urgent cancer pathway 

 

Please note: These are the things I tried to help alleviate IBS-C symptoms (constipation sub-type)

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Note: low FODMAP diet is NOT meant to be forever!

The low FODMAP diet should be for 4-6 weeks, identifying if the IBS symptoms improve. Then start reintroducing the avoided foods to identify which particular groups of FODMAPs triggers the IBS symptoms. Working out what you the trigger foods are helps increase your food choices. Reference: The low FODMAP diet sheet

  • Hot water and lemon (lemon rind contains D-limonene, a mild prokinetic, antibacterial and antifungal), hot water and ginger (a mild prokinetic)

  • Abdominal massage, essential that you get the direction correct to help move things along!

  • Colonic irrigation, I thought it might help my intestines remember how to work (it didn't!)

  • Probiotics to help my gut microbiome, I didn't get any relief from using this Optibac Probiotic so stopped after 4 weeks

  • Due to the mental health issues I was struggling with at the time my dear friend told me about the amazing Yoga With Adriene and I started to practice yoga every day

    • Yoga and all things digestion related!

  • I had counselling to help deal with the stress, anxiety and depressive feelings I was experiencing​

  • ​​I started writing in a gratitude journal everyday, thinking about the things I could be grateful for

  • I realised I had developed social anxiety, I became very nervous about seeing others and being judged by others, I found a pdf series on the internet to work through at my own pace, here's a helpful resource if you're suffering with social anxiety

  • I had a referral to a colorectal specialist  

    • I had a camera up my butt, flexi-sigmoidoscopy, everything was healthy
    • I had an operation for the chronic anal fissures as they would not heal: Botulinum toxin injection, aka Botox in the bum hole​

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Left: This is how I had the hot water and lemon every day, best if the lemon is organic & unwaxed

Right: This is how I had the hot water and ginger

I did ALL of the above to help alleviate the IBS symptoms as well as the internal suffering and misery within...still no real changes with the symptoms or the chronic anal fissure :(

But...there was a turning point for me in 2018! And I will be talking about how that came about in the next episode of My IBS Story.

The Next Episode

 

In the next episode of My IBS Story, episode 3, I will be interviewing to the lady that changed my life with IBS.

 

Spoiler alert: I AM IBS-FREE AS A RESULT! I AM PAIN-FREE, SYMPTOM-FREE AND HAVE BEEN SINCE 2018.

Support for Thoughts of Suicide

UK: When life is difficult, Samaritans are available day or night, 365 days a year. You can call them for free on 116 123, email them at jo@samaritans.org, or visit samaritans.org to find your nearest branch.

 

United States: Help is available through the National Suicide Prevention Lifeline. You can call them for free 24/7 on 1-800-273-8255

With love,

Natalie

 

Full Transcript

Hello! Welcome to My IBS Story! I'm Natalie and I'm here to tell you my story of living with IBS for 14 years and how I eventually became free from the IBS no symptoms, no pain, no flare-ups. And I hope to be the light at the end of the tunnel for anyone living with IBS. Your symptoms can be alleviated at the very least, so I am sharing my story so you can do it too :)

 

Hello and welcome to episode two! In this episode I am going to be talking about how I got diagnosed with IBS, how I dealt with the idea that there was “no known cure” (because that's what I had been told) that it was a lifelong condition that I was going to have to live with and manage, and I'll also be talking about what I did to help alleviate the IBS symptoms! And I'm going to cover everything I tried…and believe me there's a lot of things I tried! If you'd like to follow along with the show notes, dip into any of the information that I'm going to be talking about during this episode please head on over to www.nataliemears.co.uk/episode2

Okay so let's start with how I was diagnosed with IBS in the first place. So as I said in episode one I had that very memorable flare-up on holiday when I was 16 years old. I had been going to the GP repeatedly going back for different laxatives and I'd been given various different types of stool softeners and laxatives. And seven years later, when I was 23, I got a diagnosis but that diagnosis only came when my body was absolutely screaming for help! I'd been having regular bloating, toxic farts, tummy pains, cramps, nausea and constipation and quite often that constipation was chronic constipation. And that essentially led to anal fissures where I was regularly starting to bleed from my bottom. That's when I consider my body to be really “screaming at me”…like Natalie please sort yourself out!!! I was bleeding out on my bottom pretty much every day, I was in a lot of pain because of these anal fissures, they were incredibly painful and that's essentially what led me to go to the doctors.

 

So I went into the doctors and I'd got an appointment with a junior doctor (which I didn't know at the time) and I guess he knew this young woman's come in with anal fissures, she's telling me she's bleeding from her bottom…I need to do a rectal examination. So I was in the foetal position, he did the rectal examination, he did a visual inspection then insert his fingers to assess what was going on inside…and I could see he was a little bit panicked when we sat back down on the chair afterwards and he told me that he wanted to put me on “the urgent cancer pathway” because this bleeding is not normal. He thought he could feel a mass inside me (YIKES!)…I just went along with this, I was very passive at this point. After that appointment it hit me…this guy, thinks I’ve got cancer…and my mum had died from cancer when she was 33, and at the time, on this day I was 23 years old. That was incredibly scary! I’d been suffering with these anal fissures for quite a long time so it really hit me! And I just broke down into tears, I was…I was in bits. So I went home, told my parents what happened and they said “no, you need to go back and go and see the lead person at the GP practice” so I called up and got another appointment for the same day. I went to see this GP lead at the same surgery, on the same day, and this was finally when I was diagnosed with IBS! I explained to this GP the WHOLE JOURNEY so far from the constipation when I was 16 years old, regular bloating, toxic farts, tummy pains, cramps, nausea and constipation and quite often that constipation was chronic constipation then the anal fissures and bleeding out my bottom for quite a number of years, then being told I need to go on this “urgent cancer pathway”. PLEASE can I have your opinion? Of course, he gave me a rectal examination and he asked me to get changed and then sat me down and he said “no, you do not need to go on the urgent cancer pathway” and apologized for what I had experienced earlier on that day. He said “you have irritable bowel syndrome, have you heard of IBS?” and I had not heard of IBS so he printed a leaflet out for me and he also printed out the low FODMAP diet, he asked me “have you heard of the low FODMAP diet?” “No, I’ve not heard of the FODMAP diet”. He didn't have time to go through it with me but I looked at it afterwards and…my goodness! Absolute relief knowing that this GP thinks no, I don't have cancer, I don't need to go on the urgent cancer pathway…it's something called IBS. I have a diagnosis! However he's also told me that “there's no cure for IBS” so I’m now thinking I’ve got this for life :( I’m gonna have to find a way to manage this and he suggested that I start with this low FODMAP diet. And I look at this sheet and all I see is food I’m not allowed to eat and how the foods I’m not allowed to eat are pretty much in EVERYTHING!!

 

I’m now being told I have to restrict my diet and I absolutely love food so this is not really the answer I’d been hoping for to be honest with you but nonetheless I was very grateful that at least I had some answers and I had a possible solution how to make the IBS symptoms better :) to improve the constipation, improve the bloating, improve the distension, improve the smelly farts, improve all of the symptoms I was experiencing.

 

So I didn't go through the classic elimination process that you'd normally go through if you're going to be diagnosed with IBS! From age 23 when I was diagnosed, I went straight away on the low FODMAP diet…like literally that day I started eating low FODMAP diet and following it! I was taking laxatives daily, but none of these really gave me any relief as such…I wouldn't say it really helped manage the IBS symptoms I was experiencing.

 

So pretty soon after that, I’d say six months to a year (age 23/24) I started a self-care routine and I started to do self-help things…I started researching and looking into things to help me which I’ll get on to in a minute :) but before I do that I just want to talk about when I was told by the GP that “there's no known cure for IBS” because when I was told that, at that appointment, I did not cope well with this information! I’d been told that it was a lifelong condition essentially and that there's no cure, you're gonna have to live with it and in my mind that means I’m on this low FODMAP diet for life, I’m taking laxatives every day, so I’ve got a life on laxatives and as far as I can tell, there's no solution to these chronic anal fissures either! So I’m living with all this, I’m not so keen on that life actually!!!!!

 

I’m 23 years old, I should be at the peak of my life and I could not feel more of a trough in my life I felt incredibly low, I had pain in my stomach, in my bum pretty much constantly and all of this did not affect me in a positive way safe to say. I was anxious, it was making me stressed, it was making me depressed. There was a lot of psychological struggle but my determination didn't dwindle, I kept going, I kept trying different things to help me deal with the IBS.

 

Okay so moving on to the things that I TRIED to help alleviate the IBS symptoms :) so I tried many, many things all in aid of getting me to live in a little bit less pain than I was experiencing! (CAN YOU RELATE?) So if there was anything I could do to reduce the amount of pain or the symptoms then I was going to do it. Now, two things that did not work for me but I was prescribed was Fybogel, it's kind of a gloopy texture and it comes in a sachet. Next I was given something called lactulose this is definitely something that should NOT be prescribed to someone with IBS! So of course when I took the lactulose the IBS symptoms got a LOT worse, noticeably worse. Then I was starting to be prescribed different types of stool softeners and laxatives so this was Movicol and Laxido and I found these much better for me, by no means were my stools soft but it helped me go to the toilet on a more regular basis so it did help the constipation symptoms a little.

 

I had colonic irrigation…so basically a tube shoved up my bottom, pumped me full of water and then suck it all out. This procedure was really painful, it’s not medically advised that someone with IBS has this but I thought “well it's gonna save me going to the toilet and it might actually help maybe get my body used to going to the toilet again?” It didn't but I was willing to give it a go!

 

I tried probiotics for four weeks, I tried the OptiBac product and I’ve got that in the show notes, the one that's recommended for someone with IBS, but I didn't get any relief from using these probiotics so I didn't bother to try another one I just stopped taking them after four weeks and looked at what other things I could do to help the IBS, help the symptoms. I was prescribed anti-spasmodics like mebeverine, I bought Buscopan, I got Senokot…all those kinds of things. Buscopan helped a little bit I also bought peppermint capsules and peppermint oil so I was taking peppermint capsules pretty much daily because of the bloating and the pain I had in my tummy and I DID find the peppermint capsules and the peppermint oil HELPFUL. I found the peppermint capsules helpful for the cramping and the bloating a little bit and I found the peppermint oil helpful to apply and massage to the area where I was having pain, and I’ve included the products that are safe to use on your skin or to take orally so if you're interested in trying peppermint oil for the IBS symptoms you're experiencing. I would not recommend this for someone that's got diarrhea (US) / diarrhoea (UK) type IBS because it stimulates the gut.

 

I learned how to do abdominal massage, I’ve included a link in the show notes to show you how to do the massage PROPERLY because it's very important that you do this massage properly. So I used to do this abdominal massage almost daily to help stimulate me going to the toilet more regularly. I used to drink hot water and lemon first thing in the morning, in lemon rind there's something called d-limonene and this is a mild prokinetic and this means basically it helps you go to the toilet so I used to take this hot water and lemon every morning. And during the day I used to drink hot water and ginger, ginger is also a mild prokinetic.

 

I was prescribed ointments and suppositories and more laxatives but unfortunately none of these things really works they never healed the anal fishers. I went to a gynaecologist because this skin tearing around my bottom was incredibly painful and sometimes the tears would even go around to my vagina (SO PAINFUL!) then I was starting to think maybe there's something wrong there so I went to this gynaecologist for her opinion. She did think I had a rare type of skin condition, however after having tests it was determined that wasn't the case that could be used to explain these anal fissures. So other things I tried…I went back to the GP because these anal fissures just were not budging and I was getting worse and worse I was getting more anxious, more stressed, feeling depressed and feeling incredibly helpless so I went back to the doctors and they gave me a referral to a colorectal specialist and I saw this colorectal specialist when I was 25 (that's two years after being diagnosed with IBS). So I’d had these anal fissures for two years pretty much constantly and they were such a pain literally in my bum (haha) that I was unable to live with them and tolerate them for much longer. So I starting to be like “no, these suppositories, these ointments these are not working. I need something else. Please can we find out what we can do for these anal fissures?!”

 

So I went to this colorectal specialist when I was 25 years old, the first thing they recommended was having a camera up my bottom which is called a flexi sigmoidoscopy to investigate my colon. I was awake during this, it was painful but I was willing to do it because I wanted answers. So everything was normal, everything was healthy…relief but we still don't know what's the solution to these anal fissures! I don't want to live with these forever! Because there was no answer, the colorectal specialist’s next port of call was to give me an operation what I had was botulinum, botulinum is Botox so I essentially had Botox injected into my anal sphincter and this was when I was 25/26 and I remember thinking “what on earth has my life come to?!” I’m literally having Botox injected into my bum hole!! I’d never heard of having Botox in your bum I certainly didn't think I would ever have Botox in my bum at the age that I was. I had this operation, they gave me a general anaesthetic, I had days off work unfortunately the anal fishers did not respond, they did not heal. It was still uncomfortable for me to sit to walk, to lay down, all of these things. So yeah I felt incredibly helpless, hopeless, even an operation didn't help these anal fissures!

 

And at this point the colorectal specialist said there was “nothing else” he could do for me and that he would send me back to the GP, he'd exhausted all of the things he knew. However he did tell me in one of the consultations that he was “getting more and more people with these anal fissures that were medically unexplained” and I think it was at this point I actually lost faith in medicine because I was being told “there's no cure” by the GP that diagnosed me with IBS, I’ve now been told by a specialist there's “nothing else” they can do for me…they're basically telling me I’m gonna have to work it out myself. I’m gonna have to live with this myself. And manage this myself.

 

And at that point I decided not to give up on myself and that's when I kind of took my health into my own hands and really started to ramp up the self-help, doing more research into what I could do to help me and the symptoms!

 

Alright so the other things I tried…I started to do yoga every day and my amazing friend Sara told me about “Yoga with Adriene”, she's got a YouTube channel where she does yoga classes for free and you can do it at home which worked well for me because I would just want to go after work go home, relax and do Yoga with Adriene to relax and unwind. So I started to practice yoga every single day and I found it incredibly helpful and Adriene has actually got quite a few yoga videos to help with digestion and I’ve included the links to these videos because I found them really helpful when I was suffering with IBS! So I’ve included them because you may well find these helpful too :) I suppose from doing yoga every day it did help me slow down and it kind of then opened that window or opened that door for me to start trying meditation and mindfulness. So I started to do meditation for about 10 minutes a day and I went on a mindfulness course as well and I found all of this really helpful because I was eating more mindfully, going through my day more mindfully, I was reducing my stress and becoming more aware of the stress in my life which was beneficial managing how I was reacting to the world because we know with the gut-brain axis, if our brain is triggered, then our gut can be triggered, so by slowing down it helped reduce the number of flare-ups I would experience.

 

I started to write a gratitude journal, every single day thinking about just even if it was one thing I could be grateful for. Trying to flip my brain into thinking about the positives rather than the negatives! I started going to counselling to help deal with the stress and anxiety and depressive feelings I was experiencing during this journey with IBS and being told I was going to have to live with it forever.

 

I also came across IAPT which is the NHS' psychological therapy service and I went to this to help me deal with anxiety and stress and I went on a “stress less” workshop too. I’m not sure it necessarily helped me that much because I was very aware of stress how it works…how it works with our body because I’d researched it myself but I referred myself onto that and if you want to refer yourself then I’ve included a link in the show notes and just so you know to access this service you have to be 18 or over, you have to live in England as well so I just wanted to let you know that and then after doing the “stress less” workshop I realized I had been suffering with social anxiety.

 

I developed social anxiety, I was becoming incredibly nervous being around others and being judged by others, especially with the IBS and the symptoms. I was very wary that someone was going to judge me for my bloated tummy, for the farts if I ever did let one out or accidentally let one out because the smell was so horrendous! I felt like no one would love me, no one would like me, certainly no one would understand, so I sought some self-help guidance on social anxiety and that really, really helped me overcome the social anxiety and feeling a bit more like me again and less scared of other people judging me and that allowed me to go out and see people a little bit more than I had been which was definitely welcome at that point I did all of these things to try and get me to feel a bit happier in myself and to be in a little bit less pain, even if it was just a fraction less pain!

 

And I think that is literally EVERYTHING I did try when I was living with IBS for all of those years! And I’m delighted to tell you that there was in fact a turning point for me, where there actually was something that gave me relief from the IBS and actually I have been pain and symptom free now from IBS for three years, since 2018!!!!!

 

In the next episode that's what I’m going to be talking about how I became free from the IBS, and I will be interviewing the lady that told me about the thing that changed my life with IBS. So that's all for today's episode, thank-you so much for listening, I really hope you enjoyed this episode and that you found something to take away from it that's helpful for you :) and if you could write a review, rate, subscribe and spread the word about this Podcast, that would be great!

 

I look forward to speaking to you next time xxx