Post infections IBS, My story ( A living nightmare )

Hello everyone, My names Rob im 30 a year old male. i've been suffering with a diagnosed PI-IBS for about 2 years. i would like to share with you all my story of this horrific journey through this illness and how the myriad of symptoms i've had have shifted and changed as times progressed. im still suffering with it now so there is no cure here. My intent is just for people to see what its like and anyone else suffering knows there not alone.

So i caught food poisoning from a resturant local to me in mainland UK that resulted in 48 hours of chronic vomiting and diarrhea, This was really bad actually ive never experienced anything like it was sick on the hour every hour i was just a mess.

i felt a bit better on the 3rd day and a bit more on the 4th day etc and i made about an 80% recovery after a week but always felt fatigued and a bit off after the experience but never made a FULL recovery.

about 10 days after the food poisoning still at about 80% i woke up with a slight nagging pain in my left side that progressed worse and worse all day and by 3 am the next morning i was in excruciating pain, it felt like a really bad stitch from to much running only x100 i couldn't walk upstairs or function at all, it was like a cramping pain that i was telling myself "it'll go soon, it'll go soon" .... after about 2 weeks of this pain and the onset of what i can only call CHRONIC nausea, room spin like having downed a bottle of vodka was with me all the time, but i was not sick ever since the food poisoning.

The doctor gave me Ompeprazol 20mg and also did a bunch of blood tests and said come back in a month. a month passed, the symptoms were still the same blood work was ok. so the doc upped the dosage to 40mg of Omeprazol. after 2 months i the pain was gone. sort of. but the nausea was still really bad, during the first 2 months i had lost 4 stone in weight. (nearly 26lb)

the next 6 or so months that followed i had been sent for an ultrasound and endoscope up and down. and had many many stool sample tests for everything and for H Pylori... all came back negative, I was sent for a full body CT scan in the next few months. that didn't show anything either.I then got referred to a gastroenterologist who saw me a few times on a few different occasions but eventually told me its PI-IBS and proscribed me Mebeverine and an antidepressant, i now see a diatition. and over the last year ive been Caffeine / alcohol / gluten /dairy free, and follow a STRICT fodmap diet thats even more limited to that.

My symptoms:

During the 2 years ive had this illness ive experienced horrific nausea, no appetite, occasionally i get chronic constipation but most of the time im regular and normal. i get BAD SWEATS, especially at night or lying down i have big hot flushes as my guts are moving, I also suffer with what feels like bad fatigue with this, im exhausted all the time with it but struggle to sleep. i get very depressed and even on my good days the most i can do is go to a shop for some food shopping, then i have to come home again to rest.

its been a complete game changer, i feel very isolated and upset at times, its gone on far to long and at times i wonder if ill ever get my life back and meet a nice girl, *shrugs*

My conclusion.

After a long time suffering and carefully monitoring my symptoms i make a note of everything that makes me worse and ill avoid it.

one thing strange that happens when i drink say a glass of room temperature tap water i can feel it pass down my throat and round into my stomach, i read the word "Hypersensitivity" somewhere, and that is the best example for what i feel now, for me swallowing a sip of water feels like for a normal person running an ice cube down there arm, thats what it feels like going down. when i had the CT scan they make you drink a liter of water before the scan and i was in utter sweats i couldn't even drink half of it in 30 min and walking out of the hospital after the scan i needed a wheelchair. i was pale and looked like a walking corpse. But this same extreme sensitivity is all the way down which is why it hurts so much when i get constipation because im so sensitive inside.

What Works??

good question right? well for me i think taking responsibility for getting better is number 1! i now only work a few days a week from home and i give myself all the free time i can, i had to move back home with my mum and dad while i give myself the recovery time to hopefully get through this. Dont be scared to do your own research and propose an idea to your doctor no matter what they tell you, they are not you. Cut out as many stressors as you can, and of course do your own food elimination diet. get to see a dietitian if you can, Peppermint oil is good for problems going to the toilet, take 3 capsuals a day 30 mins before meals.

The Mebeverine they prescribed me doesn't really do much. Chewing food properly, remember digestion starts in the mouth. for me dont alter your diet to much, find something that works, a set 3 meals and stick to it. just a mild change here and there if you must. Exercise is good, dont do to much tho, ive just brought an electric mountain bike so i dont need to peddle if i dont want to its great fun, just sit there and do a 20 mile ride. :)

Probiotics didnt do anything for me, ive tried all sorts. some very expensive to. Neither did digestive enzymes work.

i've read that it can take over 5 years to get better from this PI-IBS and my symptoms are improving slightly, every 6 months i look back and i notice a mild improvement. But you really cant rush this getting better, prepare yourself to be in for the long haul, hanker down and put your feet up, this is going to take a long time.,

Thank you for reading my story (sorry it was long) i hope it helped someone out there :)

17 Replies

  • I thought my ibs was bad but you have been to hell and back i have problem with the bladder at the moment hope you feel much better soon

  • Thankyou. i hope you do to :)

  • Oh Rob, I really feel your pain. I have PI-IBS too and have had for around 2 years as well. Thank you for sharing your story. Mine hasnt really improved over 2 years, but it sounds you have things much worse than me. There are days when even water irritate my stomach and make me go rushing to the toilet. Have you tried ginger tea for the nausea? I was also prescribed Mebeverine for stomach cramps but they didn't make much of a difference, usually a hot water bottle is all that helps. I seen my doctor again a few weeks ago who is (finally) putting in a referral for the hospital. She said I should cut out dairy and take Docusate (a stool softener) 4 times a day which seems to be helping. I tried relaxation techniques and even yoga (which I was very sceptical about!). There are a lot of videos on YouTube specifically for IBS sufferers) and I feel it helped when I was really suffering. I try and do it every second day. I watched a video on YouTube about how certain foods should be avoided when eaten together. I haven't tried it but it sounded interesting, like how you shouldn't eat meat and starches together as they don't sit well in your stomach. I think her sub name was SarahBethYoga. I'm really not a yogi but desperate times and all that!

    I'm sorry I can't help you much. I hope things do get better for you. I haven't heard that it can take up to 5 years to get better. 5 years is a long time but at least it isn't forever!

  • Hi STC789 i have tried all kinds of relaxation methods, like i say ive pretty much quit work and live in a nice stress-free environment at my mum and dads house where i get my own space, ill light an odd candle lol. But i cant quite manage a full yoga routine as it hurts a bit, and if im not careful ill make myself feel very sick, but i have tried it, i have to say its not really for me as i find lots of rest the best thing. I have noticed how stress can have a huge impact on the gut, so i have my own space all gloomy with some mood lighting and my creature comforts. As for the ginger tea i haven't tried it yet, i do have peppermint tea regularly. When i feel brave enough to try the ginger tea ill give it a shot. the problem is i now have a fear of all foods i don't trust because i know the potential problems i could get if it doesn't agree with me. But ginger tea sounds tasty, maybe soon :)

    i hope you go on well at the hospital don't be scared of any tests they want to do, the worst thing i had was the endoscope down the throat because my stomach is so sensitive and they fill you with air, that was quite bad as i didn't have any sedative just a spray at the back of the throat. (so take the sedative lol) Good luck with your recovery :)

  • I have pi ibs 30 years ! But dont let that put you off as you seem to be improving and at least being treated. Mine not at all as bad as yours so was never taken seriously by gp.

    Immodium is my friend.

  • Hi calista, i know what you mean by taken seriously, ive had some bad experiences with seeing gp's and even got quite insulted by a surgeon consultant i was referred to. yes IBS is something not many people take seriously. wow 30 years is a long time! i hope you improve soon :)

  • Oh my goodness Rob, no need for any apologies here for the length of your post - you have been through hell as there is nothing worse than suffering extreme nausea never mind any other symptom! I also ended up with IBS following Salmonella in 1996 but don't despair I am nothing like I was all those years ago. Yes I still have IBS but I can manage the symptoms although I am under the doctor again as it has got worse lately but I think that is stress.

    Thank you so much for your post and I hope that you continue seeing improvements.

  • Hi crazyfitness thanks for replying :) its good to here some people are recovering to a point where it becomes more manageable. i hope i can get to that stage soon. i hope you get your ibs under control again soon, and yes stress can play a big part in my flare ups to.

  • Thank you Rob and I really do hope that you continue to get better and better. I'm sure mine will improve once I've left work as I've been so stressed. I should have taken the Voluntary Release Scheme they offered last year but stupidly didn't as thought I would need to stay longer before I could afford it. I am 57 so hoping to leave early. I'm now keeping my fingers crossed to be made redundant - you never know!

    Anyway, all the very best and keep improving, you are doing so well :)

  • Thanks so much for sharing. I hope your symptoms get better......I suffer with IBS and at times feel hopeless and really down, but some days are better than others........NHS help I think is abysmal........keep sharing and caring! I'm here! Lets all put more input! Every day is a new day Rob!

  • Hi cheshirecat48 thanks for replying :) I agree with what you said there about the NHS being abysmal, all the scans, cameras and blood tests etc i have had has taken me over a year, big 3 month gaps between appointments and results its not good at all.. im now at a point where i hate seeing the doctor or any "specialist" as they make you feel like a liar... i think ill be trying to get seen privately soon when i work myself up to it, it will be expensive but im not sure what other choice i have to stand a chance to be taken seriously. i read on here that other people are having certain tests that i was never offered or considered for like SIBO. i would also like to investigate more into hormones and get my levels checked as i get bad fevers like im a 30yo male going through menopause lol.. i think they can do it with a blood test. But yes as you say everyday is a new day lets keep moving forward :)

  • For the last 3 weeks, I have cut out coffee totally,and reduced my tea intake to 3 or so cups a day.I also use soya milk for over a year. I do find white bread a no-no, and try to limit my brown bread intake. Dairy products,including cream and yogurts are a trigger for me, including fatty,or fried foods. I am ok at the moment.....but? The curse always returns...........Stress also in a major trigger,and my work is stressful! .........Hope you get what you need, start feeling a little easier,and keep posting. Cheers!

  • I was told I had PI-IBS from the Mayo Clinic, I've now found out my gallbladder has been causing all my issues and is being removed tomorrow.

    I too had everything start after food poisoning, however my symptoms weren't as extreme as yours.

    I got a HIDA Scan done to test my gallbladder, which is what found the problem. I recommend looking into it since my surgeon stated there's possible evidence of gallbladder issues after episodes of dangerous bacteria, such as what causes food poisoning.

  • Hi IronGiant63 oh dear that doesn't sound good but at leased they found a cause for your problems in the end, i believe ive had that test on my gallbladder already so mine has passed lol. i hope your operation went well and you have recovered from it :)

  • Hi Rob, I can totally relate to your story. I had a particularly nasty case of food poisoning in 2009 and since have struggled with severe IBS. At first I noticed I was getting full a lot quicker and unable to eat as much as in the past and then I started having terrible problems with constipation. My GP said this is rare as most people with Post Infectious IBS suffer with diarrhea. I would like to say mine is a happy tale but unfortunately 7 years on I'm not back to my normal self. I am a LOT better than how I was years ago but still deal with abdominal pain every single day which gets me very down.

    The worst part for me was this happened when I was training to be a teacher. Luckily I completed my teacher training but that was with a year break between placements and after dragging myself through the course I felt a lot worse. The worst part for me is how exhausted I feel from dealing with abdominal pain. I've tried all the medications - Buscopan, Mebeverine, etc but don't find they make much of a difference. However I don't want this story to be completely depressing so I should say I am able to work now, albeit part-time and self-employed but I miss teaching SO much and am looking to return in September to see if I can manage it with my symptoms. I was upset like you and thought I would never meet anyone but 3 years ago I met my boyfriend - my postman! So it it possible to still meet people even if you're not as sociable as you would like to be!

    Some things that have helped me are - eating a LOW fibre diet (goes against most advice from GPs) but if you have slow transit constipation then eating a lot of fibre only makes problems worse. Eating little and often also seems to help too - I just can't manage large amounts of food at a time. Finally, good quality sleep is a must. Exercise helps with this as it makes me physically tired and to mentally unwind I turn off all electronics an hour before bed, make my bedroom as relaxing a place as possible and read. I still don't sleep amazingly but I have noticed if I have a bad night's sleep, my symptoms will be much worse the next day. Unfortunately the only medication that has worked for me is laxatives, the stimulant kind. I'm currently on Bisacodyl but previously was on Sodium Picosulfate. Have drank so much Movicol in my lifetime the taste makes me throw up!

    I hope some of this has helped. Post infectious IBS is the worst, but hopefully some day we'll all feel better!

  • Hi Motoe thank you for replying, sorry my reply is late i don't get on the PC much.

    Its nice to see you have met someone, what a lovely story, :) Before i got ill i had a reasonable social circle but now im almost like a recluse, i just have one friend who pops round to see me who understands. i used to have a profile on a dating site and i get e-mails everyday with my daily matches, im so scared now of making a date with someone and being to ill to turn up, and also trying to say to them that i can even meet up for drinks cuz' i cant drink. then to say oh i cant eat out either and the list goes on. lol

    i find a lot of GPs don't really understand IBS. ive seen a lot and they have all contradicted themselves, some have said that IBS doesn't make you loose weight and some said that IBS only gives you constipation and not the nausea so they really can give your the run around,

    im trying the Mebeverine and Buscopan to but ive not really found anything that helps apart from under eating but then thats not good because im still loosing weight, pff My dietitian discharged me the other day she said there was nothing more i can do and just to start reintroducing foods gradually when i feel i can, But thats going to be a long while from now as there are still a lot of foods in the FODMAP i cant eat. whenever i switch something up in my diet it gives me bad symptoms, like sickness, bloated-ness or sometimes rarely constipation and bad diarrhea ( When my dietitian told me i could eat Chinese 5 spice i nearly turned inside out )

    Im not sure laxatives would be a good idea for how my IBS is atm, but i just hope that with time it will become more manageable and allow me to do more.

    I hope you manage to start teaching again, i had to stop being an Electrician so i understand how it is giving up your carrier. So good luck :))

  • It's hard when you're ill to keep up with your old circle of friends. You soon learn who your real friends are! I'm lucky that most of my closest friends are still around but that's because I make the effort too. If I'm not well enough to go out I'll ring them or Skype them and having a good laugh can really take your mind off pain! I did the dating website thing for a bit too but it's so difficult when you have IBS but it's a lot easier to text someone to say you're not going to be able to make it on a first date rather than a tenth date I suppose because then they think you aren't interested. Luckily for me it wasn't long after that I met my partner and he knew everything about my condition so at least he knew what he was getting himself in for!

    I've found a lot of GPs don't understand GP and even some gastroenterologists. I think the problem is there's no blood test to diagnose it or anything noticeable during colonosopy. Luckily I have a great gastroenterologist but it took me years to get referred to him, I'd seen a couple before that and got his name as a recommendation from a cousin of mine who's a doctor. I saw him privately because the wait on the NHS was between 6 - 9 months and I couldn't wait that long. Luckily for me any of the less urgent tests he saw me as an NHS patient as I don't have the financial means to keep going private. He has been the only doctor that seems to take what I say seriously (probably because I usually go with a notepad with all my symptoms and medications written down, I'm a bit of a list writer!) and because he's a Professor he likes "interesting" cases like mine! I guess the main thing is to try to find a gastro that understands and takes you seriously. Word of mouth is the best way am I lucky that a few relatives are doctors but you should even see if anyone on here who lives in the same area can recommend a consultant.

    I lost a lot of weight with PI-IBS, in fact at one point was down to 6.5 stone. For me I just focused on eating whatever I could. If that was just toast and tea, then so be it! I was referred to a dietician at one point and given build up milkshakes, which might be an idea, you can buy things like Complan in supermarkets and Boots but the key for me was eating what I fancied and not caring if it was healthy or not. I'm now back to my normal weight of just over 8 stone but it took a year and a half to get there! I give into my cravings because my body generally doesn't crave things that will upset it.

    Hopefully we'll both get back to our jobs. I'm going to throw myself in at the deep end and apply for substitute teacher positions in September and see if I can manage. I reckon I won't know if I won't try!

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