u/soulll-tied

Hi, I'm 22 with lifelong bowel issues. Recently I've been wondering if this is simple ibs or something more?

History:

When i was a child I was born with an overly elasticated bowel which caused severe incontinence, constipation, overflow and diarrhoea. Whilst this progressed into my early 20's other symptoms developed along the way.

I have always got an urgent bowel, despite where it'll sit on the Bristol stool chart. There will always be no warning and just sudden 'i need to go right now' or there'll be an accident.

My symptoms do also severely worsen with fibre filled foods and foods with high fructans. I've found that eating less of this does help my looser stools, however doesn't really help my pain or urgency.

The pain i get before, during and after a bowel movement is extreme. I get severe pain of a 9/10, needing to rock back and forth or hunch over. This pain is deep in my left side usually, and then spreads to my whole lower abdomen during and after a bowel movement.

My bowel movements can change from anywhere between 6 to 1 on Bristol stool chart. Sometimes my stools are thin, 6cm long and sometimes its like mush is evacuating me at speed of light. I also never feel empty, and will often need to go back to the toilet within an hour.

I've tried low fodmap, it does nothing for me. I've tried cbt for gut-brain connection, and again it does nothing for me. I am exhausted, my bowels control my whole life at this point and I genuinely don't have any idea what's going on for them.

I have had previous investigations which showed inflammation on my colon but my stool test came back normal so i was discharged. And then a recent laprascopy showed my bowel distended and irritated. I also had a gp recently say how she thinks I have laxity in my bowel and pelvic floor dysfunction which I know could be playing apart..

I'm genuinely stuck on how to get better, what helps, where to go with any of this. I am so stuck, I can't function like a normal person with the way my bowel is.

Hi, I'm 22 with lifelong bowel issues. Recently I've been wondering if this is simple ibs or something more?

History:

When i was a child I was born with an overly elasticated bowel which caused severe incontinence, constipation, overflow and diarrhoea. Whilst this progressed into my early 20's other symptoms developed along the way.

I have always got an urgent bowel, despite where it'll sit on the Bristol stool chart. There will always be no warning and just sudden 'i need to go right now' or there'll be an accident.

My symptoms do also severely worsen with fibre filled foods and foods with high fructans. I've found that eating less of this does help my looser stools, however doesn't really help my pain or urgency.

The pain i get before, during and after a bowel movement is extreme. I get severe pain of a 9/10, needing to rock back and forth or hunch over. This pain is deep in my left side usually, and then spreads to my whole lower abdomen during and after a bowel movement.

My bowel movements can change from anywhere between 6 to 1 on Bristol stool chart. Sometimes my stools are thin, 6cm long and sometimes its like mush is evacuating me at speed of light. I also never feel empty, and will often need to go back to the toilet within an hour.

I've tried low fodmap, it does nothing for me. I've tried cbt for gut-brain connection, and again it does nothing for me. I am exhausted, my bowels control my whole life at this point and I genuinely don't have any idea what's going on for them.

I have had previous investigations which showed inflammation on my colon but my stool test came back normal so i was discharged. And then a recent laprascopy showed my bowel distended and irritated. I also had a gp recently say how she thinks I have laxity in my bowel and pelvic floor dysfunction which I know could be playing apart..

I'm genuinely stuck on how to get better, what helps, where to go with any of this. I am so stuck, I can't function like a normal person with the way my bowel is.

Hi, I'm 22 with lifelong bowel issues. Recently I've been wondering if this is simple ibs or something more?

History:

When i was a child I was born with an overly elasticated bowel which caused severe incontinence, constipation, overflow and diarrhoea. Whilst this progressed into my early 20's other symptoms developed along the way.

I have always got an urgent bowel, despite where it'll sit on the Bristol stool chart. There will always be no warning and just sudden 'i need to go right now' or there'll be an accident.

My symptoms do also severely worsen with fibre filled foods and foods with high fructans. I've found that eating less of this does help my looser stools, however doesn't really help my pain or urgency.

The pain i get before, during and after a bowel movement is extreme. I get severe pain of a 9/10, needing to rock back and forth or hunch over. This pain is deep in my left side usually, and then spreads to my whole lower abdomen during and after a bowel movement.

My bowel movements can change from anywhere between 6 to 1 on Bristol stool chart. Sometimes my stools are thin, 6cm long and sometimes its like mush is evacuating me at speed of light. I also never feel empty, and will often need to go back to the toilet within an hour.

I've tried low fodmap, it does nothing for me. I've tried cbt for gut-brain connection, and again it does nothing for me. I am exhausted, my bowels control my whole life at this point and I genuinely don't have any idea what's going on for them.

I have had previous investigations which showed inflammation on my colon but my stool test came back normal so i was discharged. And then a recent laprascopy showed my bowel distended and irritated. I also had a gp recently say how she thinks I have laxity in my bowel and pelvic floor dysfunction which I know could be playing apart..

I'm genuinely stuck on how to get better, what helps, where to go with any of this. I am so stuck, I can't function like a normal person with the way my bowel is.

my acid reflux is debilitating and the only thing that truly helps is lying down ironically. I'm currently on famotidine 40mg every morning and night, and it only has around 50% effectiveness. What may be causing this?

My acid reflux 'tests' have always come back clear, normal. Yet I am debilitated by it, I have to shorten my days just because overdoing it will send my acid reflux up to the point i feel like I'm going to throw up (which i find triggering due to emetaphobia).

My acid reflux also will wake me up daily in the night and stop me from falling asleep. During these moments I have to fall asleep with gum in my mouth and half sitting up to see if that help

I also have found when my acid reflux has been bad all day, i cannot swallow my food. It physically gets stuck in my throat. I either choke or have to sip a large amount of water to get the food down. This happens no matter how small the food is, how mushy it is or how solid it is.

What has helped you guys? Has anyone else got severe acid reflux that doesn't seem to be abnormal on tests yet is severe? Is there anything that causes this?

Hi! I'm a female aged 22 who was diagnosed with cfs in 2018 when I was 14. I have a wide range of symptoms and was wondering if anyone else had similar or if this is something that feels more than cfs?

I obviously have quite debilitating fatigue. And whilst my fatigue luckily has improved so much it is still debilitating. Sitting up for long period of times is exhausting, anything over about 40 minutes just exhausts me and flares everything else up. My fatigue also makes me really sleepy, I can sleep 12 hours at night and still need a 3 hour nap a few hours after waking up. My fatigue also makes walking and standing extremely difficult. And obviously still get PEM.

I also get severe brain fog and it genuinely feels like sometimes people are speaking to me in a foreign language despite speaking English which is the only language I know and speak.

And yes these are all common with cfs, and i completely understand that- the things im unsure if cfs plays apart in are things like:

- my bowel is just a nightmare. Its always urgent, no warning. Extremely sensitive to high fibre food, large quantities of vegetables and fruit. And just incredibly painful both before, during and after bowel movements.

- severe acid reflux, again it worsens when I am fatigued or upright for too long?

- extreme pain in legs. My leg pain is mainly in my knees but the pain is the worst of all my chronic pain. I get severe deep sharp pain in my knee that can flare randomly or comes on when walking. This pain is debilitating and has made me an ambulatory wheelchair user. When my knees hurt the pain travels up and down my leg, and the only thing that helps is 60mg of codeine. And when I walk my pain is mainly in knees, shins and my arches of feet. This pain is so severe I genuinely feel like im going to pass out or throw up.

- chronic pain almost everywhere with severe sensitivity to touch, if you even brush past me it feels like my arm should be broken or severely bruised.

- random bruising. Like totally random, no bumps to cause it.

- swallowing difficulties, may be linked to my acid reflux tho!

- joint instability and coat hanger pain.

- aches everyday and morning stiffness.

• high resting heart rate of 125bpm despite being led down?

- seizures. I get seizures occasionally, some that last 5 minutes and some last up to 45 minutes. Some i can hear during for around 5 minutes of the start, then loose complete consciousness.

- low blood sugar episodes. I have had readings of 3.3mmol of blood sugar, no previous issues before really getting cfs.

- headaches. My migraines are controlled with pizotifen however I still get pretty bad headaches, they can range from the back of my head to the front of my head.

If anyone else gets any of this and has stuff that works really well for them please do let me know! But otherwise yeah just kinda seeing how cfs does fit into this.

​

Hi all! I'm just posting on some forums to see if anyone has any advice or ideas of where to go or what's going on for me!

I'm a 22 year old female with a history of chronic health issues going on. I live in the UK and have found I'm basically getting no where with the NHS, and whilst I've just recently tried going private- this has also led to nowhere as he couldn't properly understand where my symptoms were all coming from.

My main symptoms are:

- bowel issues: if i withstand over about 10 bites of something that is either high in fibre, a vegetable, fruit or oats/seeds i get bristol stool chart of 6, severe urgency and severe pain. but on the other hand, i also get days im randomly severely constipated, but then have days where I have thin stools that can be up to like 50 of them because their all about 6cm long and frequently will have sudden urgent bowel movements and often needing to go back to the toilet within an hour. All with severe pain that makes me rock back and forth. Upon wiping i occasionally get blood, but nothing in stools. I've tried low fodmap, i've tried cbt to calm my gut-brain. Nothing works. I am unable to feel like i can leave my house calmly anymore without anxiety if my bowels will suddenly try and evacuate everything. I also frequently go up to 7 times a day when flaring, this can make flare days almost impossible to leave the house. Whilst my bowels won't sound dramatic via this they truly interrupt my day, make me anxious to leave my house, maintain eating a healthy amount of vegetables/fruit difficult and exhaust the life out of me. I also had a previous MRI in 2019 which showed colon inflammation, but my stool test came back fine so was discharged from gastro. And then a laparoscopy showed my bowel distended and irritated upon looking but I was under a gynae team so there wasn't much more information. I was also born with a 'streched' bowel which caused severe diarrhoea, constipation and incontinence until i was 20 years old.

- suspected hEDS: I have quite a family history of hEDS and score a 6/9 on beighton score test. I'm waiting a diagnosis from rheumatology in august for this. I feel hEDS makes a lot of sense and can explain some of my symtpoms, but again where does hEDS begin and end within my issues?

- severe acid reflux: my acid reflux is debilitating and the only thing that truly helps is lying down ironically. I'm currently on famotidine 40mg every morning and night, and it only has around 50% effectiveness. My acid reflux 'tests' have always come back clear, normal. Yet I am debilitated by it, I have to shorten my days just because overdoing it will send my acid reflux up to the point i feel like I'm going to throw up (which i find triggering due to emetaphobia). I also have found when my acid reflux has been bad all day, i cannot swallow my food. It physically gets stuck in my throat. I either choke or have to sip a large amount of water to get the food down. This happens no matter how small the food is, how mushy it is or how solid it is.

- seizures: I get seizures occasionally, often lasting between 5 minutes to 45 minutes. I have found triggers like sensory overload, flashing lights, low blood sugar and stress. During these seizures it starts with me staring off then goes into convulsions and stiff movements. The odd thing is that during the start of these seizures I sometimes can hear, however then it'll suddenly go and I am fully unconscious and shaking uncontrollably for 45 minutes.

- I have a diagnosis of cfs, and whilst this explains my fatigue; brain fog, feeling of flu like symptoms, extreme sleepiness and overall general feeling of yuckiness I cant help feel like theres more going on.

I currently have been an ambulatory wheelchair user for 6 years this is due to severe knee, arch and shin pain when I walk. I can only walk 10 minutes before I feel like I'm about to throw up and pass out from pain. I can't stand for long due to my body going extremely hot and getting pre-fainting symptoms, dizziness and overall exhaustion. My knee pain has been put down to them hyperextending but despite physio and keeping 'soft knees' my knee pain is still extremely debilitating and can flare up completely unprovoked.

I am at a genuine loss of what to do, where to go. I have tried a clinic called the mend clinic, who simply just offered nothing but low dose natroxen- and the prescription still hasn't come through despite my initial consultation being in May.

Does anyone have any advice on where to go next? I am waiting nhs appointment for rheumatology and still on a 7 month waiting list for neurology. I'm exhausted, I'm in pain every day. And whilst I have made so much progress since my diagnosis of cfs when I was 14- i am still so debilitated. I am asking anyone, and I mean anyone who has any idea please let me know.

​

Hi all! I'm just posting on some forums to see if anyone has any advice or ideas of where to go or what's going on for me!

I'm a 22 year old female with a history of chronic health issues going on. I live in the UK and have found I'm basically getting no where with the NHS, and whilst I've just recently tried going private- this has also led to nowhere as he couldn't properly understand where my symptoms were all coming from.

My main symptoms are:

- bowel issues: if i withstand over about 10 bites of something that is either high in fibre, a vegetable, fruit or oats/seeds i get bristol stool chart of 6, severe urgency and severe pain. but on the other hand, i also get days im randomly severely constipated, but then have days where I have thin stools that can be up to like 50 of them because their all about 6cm long and frequently will have sudden urgent bowel movements and often needing to go back to the toilet within an hour. All with severe pain that makes me rock back and forth. Upon wiping i occasionally get blood, but nothing in stools. I've tried low fodmap, i've tried cbt to calm my gut-brain. Nothing works. I am unable to feel like i can leave my house calmly anymore without anxiety if my bowels will suddenly try and evacuate everything. I also frequently go up to 7 times a day when flaring, this can make flare days almost impossible to leave the house. Whilst my bowels won't sound dramatic via this they truly interrupt my day, make me anxious to leave my house, maintain eating a healthy amount of vegetables/fruit difficult and exhaust the life out of me. I also had a previous MRI in 2019 which showed colon inflammation, but my stool test came back fine so was discharged from gastro. And then a laparoscopy showed my bowel distended and irritated upon looking but I was under a gynae team so there wasn't much more information. I was also born with a 'streched' bowel which caused severe diarrhoea, constipation and incontinence until i was 20 years old.

- suspected hEDS: I have quite a family history of hEDS and score a 6/9 on beighton score test. I'm waiting a diagnosis from rheumatology in august for this. I feel hEDS makes a lot of sense and can explain some of my symtpoms, but again where does hEDS begin and end within my issues?

- severe acid reflux: my acid reflux is debilitating and the only thing that truly helps is lying down ironically. I'm currently on famotidine 40mg every morning and night, and it only has around 50% effectiveness. My acid reflux 'tests' have always come back clear, normal. Yet I am debilitated by it, I have to shorten my days just because overdoing it will send my acid reflux up to the point i feel like I'm going to throw up (which i find triggering due to emetaphobia). I also have found when my acid reflux has been bad all day, i cannot swallow my food. It physically gets stuck in my throat. I either choke or have to sip a large amount of water to get the food down. This happens no matter how small the food is, how mushy it is or how solid it is.

- seizures: I get seizures occasionally, often lasting between 5 minutes to 45 minutes. I have found triggers like sensory overload, flashing lights, low blood sugar and stress. During these seizures it starts with me staring off then goes into convulsions and stiff movements. The odd thing is that during the start of these seizures I sometimes can hear, however then it'll suddenly go and I am fully unconscious and shaking uncontrollably for 45 minutes.

- I have a diagnosis of cfs, and whilst this explains my fatigue; brain fog, feeling of flu like symptoms, extreme sleepiness and overall general feeling of yuckiness I cant help feel like theres more going on.

I currently have been an ambulatory wheelchair user for 6 years this is due to severe knee, arch and shin pain when I walk. I can only walk 10 minutes before I feel like I'm about to throw up and pass out from pain. I can't stand for long due to my body going extremely hot and getting pre-fainting symptoms, dizziness and overall exhaustion. My knee pain has been put down to them hyperextending but despite physio and keeping 'soft knees' my knee pain is still extremely debilitating and can flare up completely unprovoked.

I am at a genuine loss of what to do, where to go. I have tried a clinic called the mend clinic, who simply just offered nothing but low dose natroxen- and the prescription still hasn't come through despite my initial consultation being in May.

Does anyone have any advice on where to go next? I am waiting nhs appointment for rheumatology and still on a 7 month waiting list for neurology. I'm exhausted, I'm in pain every day. And whilst I have made so much progress since my diagnosis of cfs when I was 14- i am still so debilitated. I am asking anyone, and I mean anyone who has any idea please let me know.