New to this website and am looking for some advice :)

[amort3ntia]

Hi,

I’m a 19 year old female who has suffered from IBS my whole life, literally since I was a baby. I have EDS, PoTS, Endometriosis, GERD and Gastritis. I had H.pylori from the end of 2017 to April 2019, undiagnosed and untreated for over a year because my gp said that I was ‘attention seeking because my mum was pregnant at the time’. I lost an unhealthy amount of weight very quickly and it completely ruined my stomach, so now I have chronic gastritis from it. It ruined my appetite, my relationship with food and gave me severe pain and nausea. From as long as I can remember, I have ALWAYS suffered from GI issues. When I was a baby, I had faliure to thrive, would projectile vomit up all of my milk and had terrible diarrhoea. My mum took me to a&e multiple times but they constantly dismissed me and said there was nothing wrong, telling my mum it was toddlers diarrhoea when I was less than 1 years old.

Fast forward to January 2023, I had just turned 18 and had horrible pain all over my abdomen with terrible nausea and no appetite. At first I thought it was a stomach bug, but then after a couple of weeks, it didn't go away. I was waiting for it to get better, but it just didn't. I decided to do to the doctors, and that started over a years long journey to find out what is going on with me. I did multiple stool tests, testing for H.Pylori and other issues like that, a long with testing faecal calprotectin, which showed inflammation in my bowels twice. I was constantly telling my GP that this is not just IBS. I have had IBS my whole life, and something just feels wrong. It took a lot of persistence for them to finally refer me to a gastroenterologist. When I finally saw him, I explained everything, telling him that no matter what I eat, my stomach hates it and causes severe pain, and that I have extreme urgency as soon as I finish eating and how bad my acid reflux is and how bad my nausea is and how the pain is so bad sometimes that I end up shaking in my bed feeling hot but cold at the same time, and that I've had blood in my stool a couple of times. He touched my abdomen, and every little touch he did (no matter how light) caused a reaction from me, like guarding, wincing in pain and my abdomen tensing. He said that he thinks I have ‘highly sensitive nerves’ and that because I have EDS, it's difficult to help treat their GI issues and that if he couldn't help me, he knows someone who specialises in EDS and Neuro Gastro issues. I felt like someone was finally listening to me. I've been fighting for basic healthcare my whole live due to my other medical issues, so when he seemed like he genuinely wanted to help me and figure out what the issue was, I felt hope.

He requested that I got an endoscopy, so I did, and the first thing the endoscopist said to me was ‘you know, we probably won't find anything because you have mental health issues and that can cause stomach issues…’ I wasn't shocked. She's not the first person to have blamed any of my physical medical issues on my depression or anxiety. I knew what she would find, though. She would find how bad my acid is and the fact that I have gastritis (which I had already told them I had). What happened when I woke up? ‘You have quite bad gastritis and an abnormal amount of acid in your stomach. Up your dose on famotadine to 40mg, take gaviscon, keep taking max lansoperazole and rennie.’ If I wasn't high on the sedative, I would've laughed and told her to stick her previous assumption up where the sun doesn't shine.

Still, the endoscopy ruled out any issue that I didn't already have, so when I saw the gastro man again, he said the next thing was a colonoscopy. Before I had the colonoscopy, I kept having follow ups with my GP (still do- she is really nice and one of the only doctors I have ever met that actually wants to help me and doesn't think its all in my head/due to my mental health issues) and I told her how bad my acid and nausea is, so she prescribed me Esomeprazole (instead of lansoperazole as I have been on that for years now) and domperidone. The domperidone helps lessen the nausea, but recently the nausea has been so bad. I had the colonoscopy (horrible experience) and everything looked ‘normal’. Any hope I had in thinking this battle was almost over and that they had found out what was wrong with me and could actually help me had completely perished. The worst thing about having medical issues is when you're struggling badly and in so much pain and when you have a test, it's all ‘normal’. I knew what was going to happen next. He was going to dismiss me and tell me it was just IBS. and I was right. It was only because my GP had sent him a letter saying that I am still suffering and in need of help that he referred me to the EDS specialist who deals with neuro gastro issues. In the last letter he sent me, it said something along the lines of ‘the next thing I was going to suggest was just learning to live with it, but her and her GP seem adamant to get further help’. As someone with multiple chronic conditions, the phrase ‘learning to live with it’ makes me want to scream. It's always the people that don't suffer from the conditions that you do that suggest that.

I know there is something wrong with me, I know my body and something isn't right. Everything I eat, my stomach hates it and gives me loose and frequent stools with pain and occasionally blood, I'm nauseous every day, I'm always in so much pain, I keep getting really bad trapped wind where my stomach bubbles and recently I have been in a flare up for over 3 weeks. I have already tried going gluten and lactose free, it didn't make a difference, I have tried the FODMAP diet, it didn't make a difference. I just feel like I'm at a loss here. I have done everything the doctors have suggested but no matter what, my stomach reacts to everything. I'm not sure what to do anymore. I am awaiting a response from the EDS specialist person, but who knows when I'll get that. I have been suffering from this for over a year now and it's been a horrible experience and I just want it to be over.

I am currently on 80mg Esomeperazole, 40mg Famotadine, 75mg Pregabaline (3x day), 50mg Amitriptaline, 135mg Mebeverine (3x day) and 10mg Domperidone (3x day) all for my GI issues.

If anyone has any advice or anything, I'd be really grateful.

[angelwings52]

Have you thought about trying hypnotherapy to help with stress and anxiety? I had hypnotherapy for my stress related flare ups and it's one of the best things that I did, I haven't had any stress flare ups since. There are some good apps available or you could see a hypnotherapist.

[BabsyWabsy]

Welcome to this supportive group. You really are going through the mill, it must be so frustrating. I don't know what it is with some GPs, if they can't be bothered, they are in the wrong job. Sometimes, you have to be politely persistent, be your own advocate and be brave. Speak out if you aren't happy about something. It does take courage sometimes, and your age is probably another barrier to being taken seriously. It shouldn't be, but sometimes can be. It took several years for me to get a GP to take my gut issues seriously, and I don't have your other compounding factors. Are you getting any support from your family? Keep going, you know you best.

[amort3ntia in reply to BabsyWabsy]

Hi, so sorry for such a delayed response, I have been really struggling and didn’t think to check for any responses. Thank you for your kind response, it’s very validating. I do get a lot of support from my family, mainly my mum as she also has EDS along with many other medical issues that she’s had to fight hard to even get doctors to acknowledge them as anything other than EDS (hip problems, sarcoidosis and graves’ disease). It seems like a running theme in my family that doctors don’t take us seriously and dismiss us. My grandad (my mums dad) had EDS for years, undiagnosed until I was born as when I was born, I got diagnosed and then my mum and grandad got diagnosed in return. He was really poorly, and actually had dilated cardiomyopathy as well undiagnosed for years as the doctors had already labeled him a hypochondriac. Because of how late he got diagnosed with both conditions, his heart was far too damaged for any treatment to really help. He died in 2018 during surgery for an LVAD.

When so many doctors and healthcare professionals doubt me, it has now started to make me doubt and question myself, making me dismiss my problems and telling myself that it doesn’t matter and that I’ve wasted everyone’s time as even the doctors seem sick of me. Doctors are supposed to be healers, helping and guiding you through these sorts of things but they don’t even want to seem to look my way. I can’t help but think that this is no way to live, in pain all the time with a horrific relationship with food, most days unable to do anything but lay in bed from how bad the pain and nausea is.

What I have figured out through the years as someone with a chronic illness like EDS, is that as soon as you have that primary condition that can cause all of these problems, that’s now the cause to ALL of your issues according to doctors, as though if you have EDS you can’t possibly have anything else wrong with you. That’s not true, though, because with EDS, it means you’re more likely to develop co morbidities alongside it, secondary to the EDS.

The doctors I have seen have this great talent in making you feel like you have wasted their time, resources AND make you feel stupid all at once. I know my body, and this is not normal. No one should be expected to live in pain like this with no support other than family. It’s not right.

Thank you for replying, these responses have made me feel validated and feel like i shouldn’t give up and that it’s right for me to fight for myself.

[Hidden]

What about contacting Michael Mosely and his wife? Not to go on TV, but for a consultation? I'd get a copy of all your results and tests, and even letters, so he is armed beforehand and can see what you have been through. Nothing ventured nothing gained, and It might be the answer. They are usually only private, but when one is at the end of their tether, it's the only way forward. The thing that strikes me is that with so many drugs reducing your stomach acid, your body can't digest food properly anyway! |I'm no medic, but I take only Centaurium drops which help to regulate stomach acid, as I take several meds for different issues. I hope you do find help, fortunately, you are young and the body is resilient, and with the right help you should make a good recovery. Let us know how you get on!

[amort3ntia in reply to Hidden]

I will look into him. I have actually requested all of my medical files anyway so that i’m armed and ready for when I see the EDS neuro gastro specialist. I requested them in late november and I still haven’t received them.

I know i’m on a lot of meds. When I had my endoscopy last year, the endoscopist said (even before I had the procedure done) that it was probably my mental health causing my problems and that nothing would show. She questioned why I was on max lansoprazole and 20mg famotidine for my acid. I told her how bad it was and that it was instructed by my GP. After the procedure, she told me that i have an abnormal amount of acid in my stomach and erosive gastritis, telling me to keep taking max lansoprazole, increase my famotidine to 40mg and take Gaviscon on top of it. Even with that, it’s like my stomach acid never calms down or eases.

I will look into those drops as well. I’ll try anything at this point. Thank you for your reply, i really appreciate it. I will be sure to update

[Corneater]

hi, I also have EDS with POTS. I was always advised to have a diet with a lot of high fibre and Fybogel for constipation. Fybogel actually makes me worse, it just seems to cause my bowel to stretch and stretch with no results and I wonder if this is due to a stretchy gut because I am very stretchy everywhere else due to EDS. This has never been confirmed by medical professionals. Your guts sound to be doing the opposite to mine. I very recently, in desperation, tried acupuncture and electron therapy given by a qualified Chinese medicine person, this was so recent that I haven’t seen any real results yet but she did say perhaps I should try a Nutritionist who would take my DNA and thus work out which actual proteins did or didn’t suit me. I’m still considering this because of the cost but I’m now looking at alternative medicine as I’ve found it very difficult to get effective relief via the NHS. Not knocking them but sometimes they just don’t have an answer, though I know how easily they think you have a mental problem. Obviously I can’t tell you whether alternative treatments will be good or bad for you but it’s just another option (though more expensive of course). I really hope you can get relief somewhere

[amort3ntia in reply to Corneater]

Your symptoms sound exactly like my mums. She has EDS too. When I was younger, I saw a rheumatologist that said that because we’re so stretchy from EDS, the same thing happens to our bowels and bladder. She explained it like it was a balloon.

I have also tried acupuncture- I’ll try anything at this point, but mine is also the very early stages of treatment for me to feel any relief. I have seen some tests that you can order online to find out what things you’re likely to react to, but some of them can be so costly.

It feels like I react to everything and anything, even the most blandest foods or by following the fodmap diet. It’s like just the mere process of food going through my digestive system irritates it. It never used to be like this. I’ve had IBS since I was a baby, and have had GI issues since then too, but I would be able to cope with basic food and not be in intense pain from it. It’s been over a year since this has been happening, and at the start of it, I thought it would’ve been over by now, but i’m still struggling really badly. All I want is help.

I was at the doctors a couple of weeks ago due to severe epigastric pain, awful nausea and constipation (which is so, so unlike me as usually i’m going over 3 times a day and they’re very loose). She said she thinks I have a stomach ulcer and told me to take gaviscon advance. I told her I already do, but i went through one 300ml bottle of gaviscon advance in two days, and they cost £12 per bottle. I just can’t afford that long term and it barely helps.

Thank you for your reply, and I hope you find some relief too.

[Blue_Grey]

Hi amort3ntia,It's painful to hear what you've been through. I'm sorry that you've had to endure so much already at your age. Reading your experience reminded me of my own - my doctors constantly ignored serious symptoms and tried to rule out my condition as IBS. I was diagnosed with Gastritis 5y ago, but was tested for H.Pylori only recently. The first round of treatment didn't work, so I had to do another round. All of these heavily impact my daily life. No matter what I eat or didn't eat, it never gets better. I consistently have symptoms every day and probably have 2-3 good days in a month. I'm desperately trying to find ways to manage my health, while being a full time student. It's difficult, isn't it?! I hope you're able to find a way out and get better. Take care!

[amort3ntia in reply to Blue_Grey]

I can’t believe you got tested for H.Pylori only recently. That’s one of the main things that gastritis is linked too, so that’s outrageous that they didn’t test you for it back when you got diagnosed with Gastritis. It completely ruins your stomach lining and causes ulcers and severe pain. I’m so sorry that you’re going through this. I feel your pain.

Doctors that do these things like they did to me and you are in the wrong job. I would imagine that they’re so dismissive and ignorant because they have never been though it/something similar themselves before. If they did, they’d have more empathy and want to push for investigations in order to help. My H.Pylori was completely brushed off by my gp at the time, telling me that I was attention seeking because my mum was pregnant. Oh how i’d love to shove the results in her face. Unfortunately, because of how long I had H.Pylori for, my gastritis is chronic and my stomach lining has eroded. I can imagine that yours is the same

I completely relate to what you’re saying. It is so difficult trying to juggle bad health whilst also trying to maintain the normality of being a student.

I really hope that your pain eases, even if only a little. You’re doing great. Thank you for your response