Does anyone know if you can 'recover' from post infectious ibs?

I caught a hospital super bug after the birth of my baby 18 months ago and was seriously ill, I've had all the tests under the sun done and been told its just post infectious Ibs now, I wonder from others experiences does this ever go? Or something you just manage? I can't eat dairy or gluten any more and any stressors make everything worse, I'd love to hear if anyone else has ever been in this position,

67 Replies

oldestnewest
  • First I've heard of this. Please keep us posted! Good luck

  • Thanks PatV, I will keep you posted always hoping it will just go away! Diddi

  • Hi Diddi,

    Not sure if it is the same thing, but my IBS came on about 6 years ago after a 'gastric flu' type bug. Apparently it is quite common. I don't know if it is something that is latent that can be brought on or 'just' something that happens. Unfortunately mine hasn't improved over the years. Sorry I can't give a more positive story.

    It must be hard for you managing a baby with it.

  • Thanks for your reply MarkBrennan, I'm sorry things haven't improved for you, it's a challenge daily as I am sure you can appreciate but always on the search for anything that might help, glad I've found this site, a great source of support and information. Thanks for replying,

  • I have had IBS for six years after food poisoning. Amitriptyline has helped to some degree but I continued to have diarrhoea every day and extreme bloating 3/7 days. Managing my diet didn't always help either . However I hurt my back 3 months ago and was given Naproxen as an anti inflammatory. Within a day my Ibs stopped and only came back when I had to stop taking it for a couple of days. Interestingly I was constipated for the first couple of weeks but that has resolved itself. My Gp thinks perhaps there was some underlying colitis that may be driving my particular form of ibs. It's worth a shot, I'd be interested to know if it helps anybody else.

  • That's really interesting dougalf1 I hope that the Drs can find out if colitis is causing your symptoms as they may be able to treat this, fingers crossed for you thanks for your reply, Diddi

  • Hi Diddi, my IBS started after I had a bout of food poisoning in 1996 and I've suffered with it ever since, sometimes worse than others. I joined a gym in 1999 and went 3 times a week and really 'went for it'. I was incredibly fit and had no IBS symptons whatsoever. Unfortunately I wasn't able to keep the regime up due to time constraints, I haven't got the time before or after work to go anymore, I work full-time. I still keep as fit as possible but the IBS came back and has never gone again since, I am typing this up now and have pain in my stomach and ribs. I have just purchased the IBS book by Patsy Castor 'IBS free at last' and am waiting for it to be delivered. The book follows something called the FODMAPs diet and it is basically an elimination diet. I will report back once I have been on the diet for a while. Sounds interesting what dougalf1 has to say about Naproxen. Best of luck to you.

  • Thanks crazyfitness, I'd be really interested to hear how the diet goes, I've been thinking about the Fodmap diet for a while so would love to hear how you get on, interesting to hear your symptoms went whilst you exercised a lot too,

  • If you haven't already done so, try the low FODMAPs diet, it works for a great many people on this site including me. Downloading the excellent iPhone app from Monash Uni in Australia (where the diet was developed) would probably be a beneficial move.

    Recommended books to buy are 'IBS -Free at Last' (FODMAPs) by the American dietitian, Patsy Catsos, and 'Irritable Bowel Solutions' by Professor John Hunter.

    Like most of us with IBS, you may never completely recover, but it's often possible to find a solution that allows you to manage the symptoms.

    Pagan

  • Thanks Pagan I've taken a look at the Monash Uni site and will certainly download the app and give the diet a go, thanks for your encouraging and honest reply, managing symptoms and living without fear of food is something which is certainly which would help with day to day life, our digestion and tummys are very complicated things I am finding out. Thanks for your reply, Diddi

  • Best of luck to you Diddi and we can share our experiences on this site. I have just received notification that my book is being delivered on 30 August. I will get rid of the temptation I have in the cupboards first though before embarking on the diet but whilst I am doing that I can read the book from cover to cover.

  • Look forward to hearing how you get on with the book, Diddi

  • I've just been reading some of the comments in response to this post. Many of you appear to have developed IBS after some kind of infection. Have you ever considered that the virus, bacteria (or other pathogen) that caused the infection may have de-stabilised the natural balance of gut flora in your intestines, leading to dysbiosis, leading to inflammation, leading to bloating, gas and pain? I would assume that some of you had diarrhoea as a symptom of the original infection. Diarrhoea does also 'wash-out' large numbers of your beneficial gut flora. It cannot be over-emphasised the importance of balanced gut flora for the health, not just of the intestines, but general health too. I would be interested to know if any of you have tried probiotics to re-establish beneficial levels of gut flora and, if so, your experience with them. Thanks!

  • Dear colonics, thanks for your reply, I've tried lots of different probiotics since I got rid of the bug, I have tried VSL #3, Symprove, Bio Kult, Florasor, and at the moment I am taking a brand called Ecodophilis. I also take a digestive enzyme with probiotics in too. I was treated with countless antibiotics for months and yes diarrhoea was the main symptom of the bug I caught. Probiotics wise I think they have helped but it is taking its time, I have recently had a test to show specifc bacteria are missing which is why I am now taking the brand I am. I think they have helped to reduce my pain levels and get me a bit back in balance but a year and a half later I am far from perfect digestion wise, I did find after I was ill initially I couldn't handle the probiotics and they made things worse but that was probably the good guys and bad guys fighting it out in my tummy! I am really keen to hear others experience of probiotics as its something my nutritionist is keen on but still a relatively new area of research and less favourable with conventional Drs. Thanks Diddi

  • Hello Diddi. You are certainly taking a high quality probiotic. It is the brand I recommend every day in my Clinic, and I get excellent results, combined with colonic treatment and a little bit of tweaking of the diet. What is your main symptom now?

  • My main symptoms are tummy aches (but less than they were), nausea, what I would describe as a washing machine feeling in my tummy and sometimes upset tummy, but all less than they were but still someway to go, thanks

  • Hi Colonics, I had a bout of food poisoning in 1996 and following that the IBS symptons started. Unusually so the food poisoning I had was feeling extremely unwell but I had no sickness or diarrhoea. I think I may have done a 'silly thing' at the time and that was to take travel sick tablets whilst I was feeling unwell, I think they may have stopped the 'outwardly' symptons. I have had a severe phobia for years to being sick so that is why I took the travel sick tablets at that time. I had hypnotherapy to try and ease the phobia which, I have to say, improved it alot. I have taken probiotics in the past, quite a few, but cannot remember the name of them apart from Acidophillus. Diddi, will let you know how I get on with the book but it will be a while as I'm going to read it from cover to cover first so that I can appraise myself fully of the diet.

  • I have a diagnosis of PI-IBS and from what I have read it’s the best sort of IBS to have. I'm sorry I don't have references but I recall a large proportion recover within 2 years on onset. Unfortunately some still have symptoms over 6 years later but from what I understand from reading you can still recover at any time post infection. While this is little comfort if you have been suffering for many years, at least there is hope. From what I have learnt there was a study that showed that people with IBS have a difference balance of the bacteria in the gut the lack in knowledge as I understand is that they don't have an effective treatment to correct the bacteria yet...there are just so many different ones and the delivery method is the problem - most pro-biotics are killed off in the stomach, hence fecal (stool) transplants have been looked at and as I understand it so far have been quite successful (but not for everyone).

  • Dear Boogie thanks for your reply, that's really encouraging to read that there is a chance of recovery. I would agree the whole probiotics area is a minefield which we are still very much learning and understanding as like you say there are so many to consider and at different doses etc. I hope your improves/goes soon I am about 18 months post infection but any light at the end of the tunnel welcome!

  • Hi Boogie. I was just diagnosed with PI-IBS. I too have started lots of reading and trying to get information. I don't know if you still check in here or not but I was wondering how your recovery is going?

  • Much much better than I was back then BUT I do have flare ups. Seams to have ended up syncing with my menstrual cycle so more likely to get D at start of period (the joy) and at the midpoint in cycle. That said over the years it has improved - not guaranteed anymore (this changed in last year) - which can be good and bad.

    The most unpredictable thing is every once in a while if eat out OR just try something new can turn the guts to liquid. Not every time and mostly seems to happen less than used to BUT it's now short lived (a day or so) and then system resets which is the best news.

    No secret remedy - just time - I ditched the drs drugs gradually after 18-2yrs months approx. Done relaxation stuff and altered diet a lot at start but now eat what want as think it's better for system. I think body needs time to recover from whatever triggered it and then slowly build up its resilience. I reintroduced food using FODMAP and then with triggers just kept trying from time to time in small doses and guess bodies bacteria changed and built up. Its now 4 years since onset and while still have it - so much more manageable than once was. I was lucky and was able to change jobs and got reduced hours when finally returned to work. Have change job again to increase hours as have improved. It was well over a year before got back to work and went back to 8hrs (had daily D back then and was soo tired). Now work 30hours and got a role that works for me and can pay the bills.

    Keep chin up, wear incontinence pads and pack a change of clothes so you can at least get out the house if as bad as I was. Rest. Find your way through the NEW normal for you and know it DOES GET BETTER, so much better, in time.

  • Hi Boogie, Thanks soooo much for your reply. I am just 3 months in and getting my head around the diagnosis. I was put on motility drugs about a month and a half ago and have tweeked the dosage to fit my needs. They are a huge help. Right now I typically have just 1-2 morning BM that range from formed to sort of mushy. I just started looking at the FODMAP diet and am currently eating a very limited diet of about a dozen foods. I have an appointment on the 12th with my family doc to get a referral to a dietician/nutritionist to help me figure out the FODMAP thing and to get organized with adding more foods back in. I was working full time when this illness happened in a contract position that had been extended. I ended up quitting a week early to get to the dr as my job was working out of town. I am not back to work at this time and have the good fortune to be supported by my spouse, we can manage on one income but it is tight. I do small type jobs here and there, but nothing at all full time or even set part time hours. Right now I am focusing on relaxing and trying to build up my stamina. I have lost about 30lbs., some of it needed to go but some of it I would like back in the future as I have lost a bit of muscle. I have noticed that my symptoms are worse at my period as well. Mostly what I am dealing with is abdominal pain, trapped wind, healing my acid reflux. I had an endoscope revealing acid reflux, this in common in IBS due to the increased pressure of the gut due to the intestines not working properly. Since I was informed, I completely changed my diet and went on Zantac. I hope to get off the Zantac soon(1-2 months maybe) as my symptoms are very dialed down. The pain was waking me up every night. Sleep is needed to heal. You mention diarrhea with eating out as being one of your lingering symptoms right now, is it immediate or does it happen the next day? From the research I have been reading, you are still in the window of recovery. Some people can take up to 8 years to recover. I need to ask my gi doc but it seems that even people who just get the IBS diagnoses and don't have the PI-IBS type can also recover in time. Others have the dysfunction for life.

  • Hey Boogie,

    I am just about 6 months in with my PI-IBS and was progressing well little by little each day and have now had my first set back. Reminds me of what you described in your reply to me. I was having a large formed but soft BM in the morning within an hour of waking. Reflux is gone and meds are done with that issue. Still on motility drug but at a reduced dose of 50mg or one pill per day. Then I got brazen and went out to eat, no repercussions. So then I started eating more types of foods at home and ate out again last weekend but had repercussions. Pain, gurgling, some extra trips to toilet in morning with a max of 3, stools less formed. Seems to have lasted about 6 days and is gradually winding down. So from what you have said it seems these incidents may decrease in frequency and also decrease in length of time? On the positive side my sleep has majorly improved and my stamina is better. I have even started back to the gym but in a reduced capacity. Also starting a part time seasonal job mixed in with other work here and there for income. Still on probiotics. Wondering if you still use probiotics at all? I for sure feel better than I did even 2 months ago, but will admit that this health issue has had a pretty big impact on my life. It has for sure knocked me off the tracks for a bit. Did you struggle with decreased sleep quality for a while as well as a decreased stamina?

  • Hi T068,

    Sounds like you are making good progress. Yes sleep can still a problem. It varies and compared to how I was it is a lot better but quality is variable and when my guts set off my sleep also seems to go off a bit and it can be hard to get it to settle. Sometimes my sleep is poor and I can feel my guts are active but the toilet experience is OK - just might have more day to day wind etc. I am just grateful to be back at work and paying the bills. My long suffering work colleges just have to put up with a grouch from time to time. When sleep and bowels are good I feel good and the reverse also true. Usually the eating out problems just last a day - often starts within an hour or so of eating - I get that feeling in my guts and know need to find a loo and I'll be there for a while/time to go home - NOW. Occasionally it can last a few days and I recently had a tummy bug - not like my usual IBS and it upset things for longer - 10days, but I know my body is better at dealing with it these days. Probiotics...I do have but on low/small scale to prev. Every now & again I'll have a few weeks of solid probiotics (an actimel purge - when on offer & I see) but I've had all the ones you can buy now so honestly I think a varied diet is my best defence. Its so expensive buying probiotics and I view that I invested in the foundations of good gut bacteria when things were bad and my guts needed it - as it has improved I reduced and no obvious effects. The true difficulty with IBS is everyone is different and just got to learn what works/or not for you and recognise that over time it will change so keep plugging away as by the sound of it you have been doing.

    Sounds like you are doing a lot better than I was at 6 months. Yes, the incidents get less frequent - both eating out and period. Eating out upset can sometimes just be a few hours of guts empty out (that's what it feels like) and then the next day relatively OK - just tired after spending night on loo. Period - it varies from barley noticeable to a couple of days of mess but it's nowhere near as bad as it was. Just slow and steady improvement that I still feel I am making.

    Keep up the good work :-)

  • Thanks so much for sharing your experience. I agree that no two folks are alike with this disorder but there are patterns it seems and it helps to hear what others have experienced. I plan to stay on probiotics for the rest of the year. I agree that it is sort of expensive. I also buy them in advance on sale. Plugging away is the name of the game for me right now. I would like to be working another health care contract but have decided on seasonal retail just to get cash flow, some is better then none and I do have my spouse to help with bills. I think my recent flare up is from loosening up my diet a lot as well as this soup I made the other night. I guess it just had too many things in it that I can't digest on top of eating some processed foods and known trigger foods several days in a row. I am dialing things back down to simple low FODMAP stuff to see if that helps to bring back the calm. I have been eating dairy with no issues and small amounts of wheat, I use gluten free FODMAP friendly bread right now. I avoid all caffeine and alcohol but seem to tolerate some trigger foods pretty well. It seems with my original infection that started this, that my diarrhea was not really violent. I had tons of abdominal pain and BM that were little soft pieces. I think that is why I typically don't have really bad diarrhea now. But who knows? I have pain and urgency at times for sure and BM are usually somewhat formed even with pain and urge. I do think some people have more severe symptoms than others. If you were really struggling at 6 months, and got where you are now, that is great! You must have done many things right to help your body heal. Take care and thanks so much for your reply. Will check in again for sure.

  • Look forward to it.

    6 months was bad...the colonoscopy was what sent my guts into total free fall - (it was bad before but I had not idea how much worse it could get). With hindsight it was just too much for my guts at the time but for some people it can sort them out....honestly if had no prior experience, I prob would still have had it with hope to correct and also to rule out anything more serious.

    Health care can be quite stressful so might be good to have some time away while you get your guts under control - look after yourself now so you can care for others later. Good Luck and hope you continue to make great progress.

  • Yes, that is why I refused the colonoscopy. To make matters worse, my GI insists on a 3 day prep. 12 pills and 2 drinks. My spouse is getting a colonoscopy in 2 weeks with a different GI, 1 day prep, 2 drinks with fasting. I have heard exactly what you have said, that for some people the big clean out helps them and that for others it just wipes out the biome and makes their recovery even longer. My Gi was pretty sure of his diagnoses. I would not have minded getting the scope since I had to have the endoscopy done and since it would be a cancer screen done early. But I opted to play it safe and not get it done for now. I can see why you and others would go ahead and do so though. For me, after a few months of gradual and steady improvements and even managing to gain 5 pounds, I decided that PI-IBS was most likely what I had as well. Time will tell. Still managing my current set back. Dialing down diet and upped my motility drugs. Doing ok for now. Starting training for my part time job tomorrow. Unfortunately my training is 9-5 this whole week, will be challenging for me but after that hours will go down. Still do healthcare a shift here and there. No contract for now. I agree, need to keep stress down. Take care for now and keep getting better:)

  • PI IBS is more common in females even more likely when you are pregnant. bad news, only management theres no cure. i personally went to marijuana for the nauseau, pain, loss of apetite, and anxiety. The doc can load you with pills some better for you than others but ultimately thats what there trying to do for you. xanax to eat and settle your stomach, zofran for nauseau (didnt stop mine) and not much for the pain. if your like me anything to get rid of the pain and puking i was more open minded too. I've had pi ibs 3 years now ulcers all over my stomach and esophagitis all as a result from salmonella and developing ptsd while i had the salmonella. what works for me? pot and xanax, holistic meds and diet i had no luck, Rx pills (except xanax) e me little to no relief as well.

  • i got the same thing march 2013 i woke up sick from my stomach doctors said it was just a bug and i would recover but i didnt i stayed sick for a month in a half until they said i had colitis and gave me antibiotics it did kill the gut infection and i felt better. but left my stomach with ibs its been about 2 years with this ailment im going to get tested for sibo also just to rule it out im on the same boat as you, get well. :)

  • I had a bad case of campolabactor (spelling bad I know) just over 2 years ago. I had a strong course of antibiotics which seemed to do the trick but after a few months I started having bad stomach pains and waking up with pain to my right lower abdomen. . I have been tested for this and that and a scan did suggest colitis but specialist couldn't see anything when I had Colonoscopy. Since then I tried fodmap, gluten and dairy free diets all with minimal impact. I went back for a second opinion and all they said was that it was post infectious ibs. My symptoms don't generally manifest themselves during the day only when I wake up - depending on severity of pain this is typically 4-6am - and do dissipate gradually when I get up. I don't know really know what to do next ..... I had a moderate Christmas and very quiet new year but the last 2 days the pain has been the worst. Would appreciate any views?! Thanks, rob

  • How did your test for SIBO go? Do you feel that you are "getting better" or are you at the some place you were after being sick initially?

  • Hi! My bit is definitely new as of 2 Jan 2016!! Original post started 2 years ago I think!

    My main symptom is waking with a pain in my lower right abdomen - next to belly button!!

    I do get occasional bloating wind and loose stools but not really diaroeah. I have never really felt my diet is responsible but I don't think I deal with fat very well (partic cheese which I have always loved!!).

    My original bug was probably related to handling poultry prior to Christmas 2013.

    No to hungry at breakfast.

    I don't think I took any probiotics early on.....I did use symprove for about 4 months but don't think it did much!

    All the diet business was do with seeking medical help during 2014 - the dietician thought it wasn't diet related - I then saw a chiropr (specialising in bowel issues) and her nutritionalist - mentally helpful but didn't achieve much apart from helping their pension funds!!

    Really at a loss as to what I do now and more importantly what can I eat!!!

  • Hi Rob,

    I'm so sorry that you're going through this. I wanted to respond because it sounds like you're having the exact same symptoms that I am and after 10 1/2 months, doctors still cannot help me find an answer.

    Last March I went into the ER with extreme pain in my lower right abdomen and after 2 CTs and multiple X-rays, they found that I had colitis. In the following months I had extreme pain near my belly button and in my Ceacum area that would come in severe waves.

    I was working in South Korea at the time, so when I moved back to the U.S. doctors had to start all over again trying to figure out whats wrong. I had a colonoscopy/endoscopy last week, labs every few weeks, more ultrasounds than I can remember, and the doctors still cannot find anything. I was told that it's probably Post Infectious IBS, and the severe pain in my Ceacum could be cramping or spasming, and the burning near my belly button that wakes me up in the middle of the night could be a newly developed gluten allergy. (labs came back negative for celiacs)

    I would suggest giving a gluten free diet a try because I started 4 days ago and haven't had any pain near my belly button. I kept ignoring that advice because my symptoms seemed really unique for gluten intolerance.

    Lastly, the last time I went to the ER, they mentioned that I could possibly have a parasite in my lymph nodes in my abdomen and that could be causing the periumbilical pain. An odd suggestion for a diagnosis, but I'll take any answer at this point. I just want to know that I'm not going to die from this.

    Good luck in your search for health and wellness!

  • Thanks joy. My wife has just read an article about how the Germans are looking at and medically investigating the gut and place it higher than the heart. Gonna have a look although a bit of a trek to go and see a doctor!! I had a colonoscopy last year and do you the 1-2 days before and 1-2 days after we're great because my gut had nothing in it!! Maybe I should do that every few months so that I can wake up with no pain! Although the side effects were unpleasant!!!!

  • Hi Rob1968,

    I too have been recently diagnosed with PI-IBS. Mt stomach flu was in March-April 2016 and lasted about 6 weeks. I went to an Urgent Care and was given 10 days of Flagyl. Mt "stomach bug" symptoms had me using the toilet up to 8X/day which the Flagyl stopped. I was left with unformed stools in the morning as my bowels gradually rest their timing. Now months later I have some instances of urgent BM here and there and I suspect it is related to food and have begun keeping a food journal to try and figure out how to eat ti manage my symptoms. I am also looking into working with a naturopath. What types of management of this condition are you doing? Are you getting any results?

  • Hi Diddi, I am a 21 year old female also suffering from post infectious IBS. 7 months ago I contracted bacterial gastroenteritis from a tuna sub I had from subway (it's really as gross as it sounds) and ever since I've been suffering with this ailment. My primary symptoms are nausea/vomiting and cramping after anything I eat. Also, I have chronic constipation as a result. Unfortunately, I have not recovered or found a "miracle cure" yet. I have, however, found some solutions that do help alleviate my symptoms. I found that Amitryptiline has helped me manage the pain because I used to have horrible cramps after every meal I ate. I also take pantoloc twice daily and it helps me manage the acid reflux (my nausea is a result of too much acid in my stomach). Restoralax (or Miralax) is a very gentle laxative that I take daily (as ordered by my specialist) which helps me to go without the cramping or excruciating gas pain some laxatives can give you! I can understand how frustrating this must be for you as a new mother. I know it's been a huge bump in the road for me as I had to defer from university and take a medical leave from work. I would love to hear if anyone else has suggestions for me to try! Btw, I have had every test in the books (colonoscopy, endoscopy, MRIs, CT, blood work, stool testing, you name it) and all came back negative. I am also on my 6th medication, as everything else has failed. Best of luck to you, this illness is really shitty and frustrating as hell, as there's still no known "cure" and it honestly does take a huge toll on your life.

  • I've just began the post infection ibs. Curious to now how you been since you posted your question 3 years ago.

  • Hi Stussy81,

    I am also newly diagnosed. How is your recovery going so far? What type of symptoms do you have and what management are you trying? I am finding that getting used to this is challenging. I am on motility meds to slow my bowel function and that is helping greatly. I still have episodes of lots of abdominal pain, will be speaking to GI about meds to help with that. Not sure what brings on the pain, guessing that it is just part of the disorder process with the nerves in the gut being damaged.

    TO68

  • Hey,

    Been on inner health plus dairy free probiotics since November 2015. Look it's a slow recovery but doing way better. Still go toilet twice daily , never fully emptied out. Yes sore side lower pain in colon area at times higher colon area pain . Sugar makes it worse but that's my doing . I pretty much can't go over board with a lot of foods like I once did . Recently had my 2nd colonoscopy all was well and Dr just said most Post infectious ibs patients heal within 12 months and sadly some don't . I'm sure the probiotics have helped me heaps . Also my mind is a big contributor when it comes to the toilet urge . It's like im so afraid I'll need to go at times I start thinking it and sure enough I need to go . I take a gastro stop if I need to go some place incase I have a attack , again it's my mind that expects to bring it on. Also I'm lactose Intolerent now .

  • Did you try any motility drugs at all? It seems from your list that you are not on any at the moment. I am on them and appreciate the regular morning BM they promote. An advantage to being off of them is being more in touch with your body's reactions I would guess. I am keeping a daily journal of food, pain, BM, and stress/mood just to get a handle on patterns. I had a huge pain day yesterday with pain starting around lunch time and finally dissipating in the middle of the night. It is right around my navel and when I had my infection that started all of this, that was one of my abdominal pain areas as well. Wondering if these pain episodes eventually die down and get shorter and fewer and farther between? Anyway, thanks for responding to me and sharing some of your journey. I have not yet discussed prognosis with my GI but at the onset he simply said that the gut gets disrupted and that it takes time to rebalance. I have since read numerous studies and the truth is that some people do make complete recoveries. Others may have symptoms that simply fade and become not much of a problem over time, and some may have severe symptoms for life. It is a crap shoot. Pun sort of intended. LOL!

    TO68

  • Nope no medications . Only medication I took was some powerful antibiotics to eradicate the disease i had in the first place . Yes true ! The nerves in my colon are so badly damaged from the disease I had (c.diff) may take a while to heal . Have not seen a normal stool since way last year before I got sick . As for foods I pretty much eat anything and sadly pay the price latter . Some days I'm feeling great others I feel pain ! Bloated and like I want to rip out my guts . It has gotten way better over the months I must say .

  • Hi Stussy81,

    I am just stumbling along here in the beginning of my long recovery but I will say that having the anti spasmotic has really helped. I have 1-2 BM in the morning and more than half the time they are formed, the other times it varies. I am on something called dicetel. It is not an antibiotic so it will not further harm you. It is supposed to also help with pain but it seems to do nothing for me in that regard. I am happy with the somewhat regular BM schedule though. I am in the process of getting a referral to a dietician. I am eating a mostly bratty diet with some veggies and fruits. Have you looked into the FODMAP diet and do you have access to work with a dietician/nutritionist? The bloating is bad, I have it as well. Mine has decreased somewhat, not sure if it is just time passing or the use of probiotics, I have been on them for about 12 weeks now. The bloating and gas is partially caused by foods that we can't currently digest well due to their carb content. Since the guts have poor motility the foods that don't digest well will cause liquid and food to just sit there building up fermentation, gas, and pressure, which can often cause pain for us due to the nerve damage. I am looking into FODMAP to try and take some of the burden off my body that way and to hopefully help ease my symptoms. I expect that I will be in pain for quite a while but anything I can do to help I will at least try. I am also choosing to abstain from any coffee(I do miss it too), alcohol, refined sugar treats, and for the most part all processed food right now. I see my GI on the 20th next month so I am wondering if he will have anything to say good or bad about diet. Most of the foods I am currently avoiding inflame the gut a bit and I already have inflammation from my disorder, so again, just trying to dial things down for now. But I have read on various sites where people just maintain their prior eating habits and still progress in terms of symptoms decreasing. You have to do what works for you. If I go on FODMAP for a while and see no change then I will abandon it.

    TO68

  • Stuff fodmap I'm thin enough . That will just make me anorexic . Look it's still early days for you don't be too hard on your body . It does get better trust me I know take probiotics at night and try perppermint tea minus the sugar for the pain . My start road was bad to. I cried and missed my old life . It's better now . It has been 7 months of healing . Specialist was right it gets better .

  • Eat a probioticyogurt everydayas well ok. You'll get there .

  • I have lost a ton of weight. Hoping that I can eventually start to eat more. Thanks for your reassurance. Yes, it is very early for me still. My spouse says there is already a difference as compared to when I got back in town early June. I am walking a lot for exercise and stress relief and to aid digestion. Between that and eating no sugar, the pounds just keep coming off. Hoping to eventually start to gain weight and stamina. I do take probiotics, I am using align. I just ordered 2 more boxes online so I plan to just stay with them and start adding in others for a second dose. By the way I never commented on your illness. I work in physical therapy in many venues including long term care housing. C-Diff is no joke. That is serious. So glad you are recovering. I am guessing you must have spent some time in the hospital? I am middle aged but was in good health before all of this, hoping my middle aged body will gradually recover.

  • And don't forget to take vitamin d once a day ! Start today ok

  • On it with the vitamin D. I was a regular taker of this but my vitamins have fallen by the wayside recently with me dealing with meds and other stuff. Getting back on them today:) Thanks.

  • Yep c.diff was hell. I'm a healthy 35 year old

    One min and in and out of hospital the next

    Mind you hit depression with it . My husband

    And 3 year old girl never got it cause I bleached

    The house down whenever I could and

    Made sure their hands were washed . You see

    I was on antibiotics for helicobacter

    And the medication just wiped every good bug

    And one day we went out as a family and

    Obviously eating from a buffet would be the

    Last place you should be eating from and I did

    And hell started . Should have taken probiotics

    Along with antibiotics but I had no f clue what

    Probiotics were or had anyone told me . It was

    Until I got to hospital my gastro dr told me . Now

    I take one every night ! Even if I go overnight

    I take them with me . Time was made it way way better!

    It will for you as well. It's f hard ! I know and it's

    Still not great but way way better . Stressing makes

    It worse but hey I'm born stress head. My gastro

    Dr did put me on endip to help with my spastic

    Colon and left side pain . Took one a night

    But next day at work I was so tired . After 2

    Weeks I stopped them . He did say look you

    Will get better it's a slow process and its up to

    Me to continue with endip . Stuff it I said !

    I've been ok for could of weeks but pain started

    Again this week and that's cause I have

    Hit the sugar again .For the weight I been on

    Ensure plus ( I drink it with lactose free milk )

    It gives you apetite trust me. That actually

    Kept me alive I think without it I didn't have

    A apetite . At first I could not eat white bread

    The pain from the wheat killed my tummy

    But bow it's all good I can eat white bread .

    Such a slow process but you will see results ! Don't

    Panic just think tomorrow is a new day and

    I'm on the right track to getting better .

    Sadly I still can't take all my vitamins cause the ibs don't like them. They make this worse for me . Vitamin d is gentle.

    Ta

  • Hey Stussy,

    I really appreciate your comments. I am in the process of trying to eat a bit more. Mostly I eat steel cut oats, rice, quinoa, carrots, green beans, bananas, kiwi, blueberries, and meat. I was peschetarian before this with a predominantly vegetarian diet. I ate plenty of wheat, never seemed to bother me but I know people say that wheat causes a slight inflammation in healthy people. I am not eating much of it right now, a few crackers that have it in it per day. I am still trying to eat all natural peanut butter to get the extra calories but find that it aggravates my reflux so I plan to give it up for a while. May try the ensure, I used it early on. My stamina seems to be gradually improving. My pain gets pretty high still at times. The last bender I went on started at lunch and ended in the wee hours of the night. Right now I just get burning pain here and there, some of which I think is reflux and some of which I think is nerve pain in the gut. Was any of your pains burning? Or do they feel more like spasms and cramps? So you can for sure tell differences at month 7 vs month 3? That is good news. I am staying on the antispasmotic for now. Seems to cause some fatigue and slight headaches, bearable for now considering it keeps my bowels mellow enough in terms of reducing urgency and providing some regularity. I am 45 and was in a slight health decline when this all hit. I had just joined a new gym and took a travel job. I was on a sports team and counting calories and reducing sugar all of which needed done. I was just trying to turn things around and get back to a more optimal health state then I got whatever infection I had and then got 10 days of flagyl. I still have to talk to my GI about prognosis. Yours thinks you will one day be normal again though? That is good to hear. I know this is supposed to take a lot of time. Up to 6=8 years in some cases. Some research I have read says 1-3 for many people. Fingers crossed. What country our you in? I am US but living in Canada. Cheers!

  • Hey Stussy81, How are you doing? I am approaching month 6 of my recovery and doing better. Still not great or normal but indeed improved. I am taking 2000mg vitD3 everyday along with zinc. I tried multi vitamin and it caused pain so I set it aside for now. Able to take vit c now too since reflux is finally gone. Taking probiotics everyday, they seem to help. Had recent flare up or set back from expanding diet a lot. Set back was bearable but disappointing. Had some pain, gurgling, extra trips to toilet in the morning, less formed BM. It seemed to last a few days and now is dying down. I wanted to let you know that I bought some Florastor but have not yet taken it yet. It is really known for helping with preventing diarrhea while on antibiotics (FYI for future use) and is also show to help prevent recurrence of C-Diff. It is really common in Europe and Canada and I did see it in drug stores in the US recently. Might want to give it a go. I hope you are doing better and moving forward in your recovery. I can for sure say that month 6 is better than month 3 but still not great. Sleeping better and managed to gain back about 5 pounds. That helps. Take care!

  • Thanks heaps ! I'm going way better myself . Pretty much doing all the above . Can tolerate way more foods but still can't get rid of that left side on and off pain .

  • So glad to hear you are doing better. I am guessing that left side pain will eventually go away. Are you at least noticing some sort of decrease like in amount of time, intensity, or maybe an increase in time between without pain no matter how subtle? Anyway, hoping you continue to do better. Thanks again for sharing your journey. Give that Florastor a try sometime. Or at least look it up for Cdiff treatment and see what you think. Take care for now! Me, I am still taking vitamins, trying to eat more, and going back to the gym for improving stamina, health, and mental well being. So glad to be able to have the energy to do that again.

  • Hi i just got diagnosed top after 4 months of hell not knowing what it is. It all started with anti biotics doctor gave me for acute sinititis which killed all my good/bad bacteria and messed up my gut system. I have to admit i am not not as bad as i was before but still when i eat i feel heavy and bloated and if one day i dont need the loo....next day i will be in pain. Sharp pain next to my belly button and my lower back. To ease pain is put hot water bottle and then the loo......

    I did asked specialist do i need watch what  eating he suggest avoid lactose food ie milk n cream. But they way he sound he said i should recover in few months but looking here doesnt seem like it.

    Im just loosinf will to live with this pain. I hot a young daughter to look after and i barely have energy bcos i cant even eat....

    Any suggestion would be helpfull x

  • Hi all, hope you are all having some sort of recovery since being diagnosed with PI-IBS. I've done my own research myself and have seen that it can take up to 6 years to get better in severe cases however symptoms may still be present - most cases do clear up within the first 1-3 years.

    I was diagnosed with PI-IBS 5 months ago, leading to severe vomiting and diarrhea about 12 hrs after the meal I ate. This lasted for about 2 days and since then I had developed excessive wind, abdominal pain and loose stools.

    In the last month, I have been taking a couple things that have stabilised my condition and allowed me to feel normal once again. Please note that this will not help everyone however, I hope some of you can find some relief.

    Firstly I had included some probiotics in my diet (Optibac - Saccharomyces boulardii). I have also began to take Chlorella in tablet/power form as this has been researched to help with gut flora - this has helped me out significantly.

    For some pain relief I take peppermint tablets daily along with a ginger extract. 

    Lastly I have taken the FODMAP diet, I was recommended I have to do this for 6 weeks, then slowly reintroduce certain foods.

    So far I have been feeling much better, loose stools still present but slowly getting better. Pain management and patience has helped alot. 

    I hope you all find some relief!

  • Any updates on your current condition? I was told I have PI-IBS by the Mayo Clinic based on my story, and was advised to use probiotics, a low fiber diet, as well as eating five smaller meals a day to treat it.

  • Hi Docs16,

    Do you work with a naturopath or a GI doctor? I am considering working with naturopath to help me with diet, including FODMAP. I am so glad that your symptoms are slowly getting better. I had an upper endoscopy revealing mild acid reflux and tissue samples were taken. I know from y GP/family doc that my samples proved that I am not allergic to wheat and that I don't have parasites. I meet with the GI next month to further discuss results, I am wondering if maybe there is tissue damage present? Have you had any testing like this done during your diagnoses? It seems that part of IBS is from gut damage.

  • Snap, mine is after bad stomach flu, crap. Happened a year ago and I became lactose intollerent front too.

    So far low fodmaps works for me, I am yet to work out how to re intrude food with success. I am also yet to re introduce dairy either.

    Stress makes mine worse, doctors just say it ibs, might improv etc. Looking for my own way of dealing, sticking to low fodmaps for now.

    Am interested in updates on this post from others.

  • Well seen gp on monday and been given Gabapentin 100g. Have to admit it helps the pain and eveb go to loo to relief was painless. I also went to acupunture to strengthen my stomach. For first time in 4 months i actually manage eat more and loads of energy. Fingers crossed its heading right direction. Will update and let you guys know

  • How was the acupuncture? I am considering working with a naturopath who happens to do acupuncture. It helped you? Also, look for me on the other site you post on, would love to interact with you there too as your healing journey progresses. Take good care tweetypie1982!

    TO68

  • Hi everybody,

    I am hoping somebody can reply to my message with any help or words of comfort as I am finding this really difficult. I came across this website last night and was reading every single one of your answers on here last night and it made me cry. Finally I feel like there are other people out there who feel similar to me. I am so sorry to all of you as I know what you are going through and it really is horrible.

     I went to Spain with my mum in January 2015 and contracted either food poisoning or a nasty tummy bug. I recovered and was fine back at home and was living life normally for six months. Then out of nowhere, one day I felt nauseous and couldn't eat very much. A couple of days later I started to get stomach pain in my lower abdomen. It has been ten months now and I live with stomach pain every minute of every day. Sometime it gets worse (from food I am guessing) but other than that the pain is always there. My bowel movements are pretty normal, although I did suffer from constipation earlier on. Sometimes I still do but on the whole my bowel movements are fine. I still get nausea sometimes but the main issue is the stomach pain.

     It really has affected me and I have chronic head pain now just from emotional stress and muscle tension that this horrible illness has caused. I realise there are others out there who have far worse illnesses but sometimes it is just so debilitating and so frustrating. Everytime I start to talk about it I cry because it is getting to me so much. I just want to feel normal again. I went to the hospital many times, have seen a specialist and done many tests: CT scan, colonoscopy, gastroscopy, pillcam etc. The doctors in the hospital and my specialist all said that I most likely have a post viral bowel infection but I was thinking of getting a second opinion.

    I just don't know what to do anymore but reading some of your answers and hearing that some of you got better made me sleep a little easier last night.

    I hope all of you get better soon.  I know that feeling sad really won't help.

    Sorry for the long message.....

  • Hi makeupforever, ill say the depressing things first...

    I have post infectious IBS. I have suffered greatly with it for the past 18 months, the pain at first was like a knife in my stomach, i lost 6 stone in weight in as many months, had countless blood and stool tests and even endoscope up and down, also ultrasound and CT scan. and they find nothing wrong with me and say its PI-IBS. I truly understand how you feel with the emotional side of this illness as i myself have had to move back home with my mum and dad just so they can take care of me, im a real mess at times and even on my best days i still feel so disconnected with reality, dizziness, brain fog and nausea are part of my day to day life, it feels like even my blood is toxic like ive a chronic leaky gut or something.

    I have recently been discharged from hospital and the only treatment they provided me with was Omeprazol and the antidepressant Amiriptylne. i have followed the FODMAP diet and now i eat the same thing everyday, im alcohol free, caffeine free, gluten free and dairy free. and im still left with a myriad of symptoms including random fevers, pain and insomnia. and i suffer a lot with very bad depression, it feels like this is going to rule my life, i watch my friends get married and have kids and move on, while i remain single and nurse my IBS.

    Now all this is bad news, its horrible having any illness, but there is something more daunting about having an illness most doctors dont understand, sometimes walking out of the hospital when they can do nothing for you feels insulting.

    Having said all that depressing stuff, one thing i have learnt to do is take responsibility for my own body. Now im far from cured but i am much better than i was and i really believe that in time i will heal - if not fully then enough to live a normal life.

    As with all IBS 'stress' is something that you have to manage on your own. what works for one may not work for you. Some people just need an relaxing bath with some Radox and a candle and there good to go.

    I myself have terrible coping strategies and ive quit work altogether because im just to ill at times, and i mean emotionally ill as well as physically, but i do what i can when i can for people and family. Having a supporting understanding family is important to, i dont know what i would do without mine.

    One thing i take little comfort in is reading these kinds of forums i notice that not many people will take the time to give followups, i wonder if they are cured? or if it simply isn't controlling there life as much? it would be interesting to hear from the original author of this thread Diddi and others who haven't posted for a while.

    But in short. managing those stresses are the most important thing you can do to look after your gut health, if its just talking about it it can help greatly. if there is nobody in your life who you can open up to, here in the UK just ask a doctor and they can listen or refer you to a councilor, dont be put off though they are normal people and its there job to help you. :)

    But have faith you will get better. Guts can take a long time to heal. try to stay busy and as positive as you can be. :)

  • Hi makeupforever,

    I also post on another forum for people with PI-IBS and some of the members on it have mentioned a drug called amitriptyline. It is an anti depressant that is given in very low doses to IBS people for pain relief. The dose is usually given so low that it does not affect mood and someone else stated that they did not have side affects from the drug. If you Google search the drug you will see that it does have quite a list of side effects. Anyway, just a suggestion. I hope you are doing better now. And if you are, please post and let me and the rest of us know:) Take care!

    TO68

  • Hi! I just created an account to reply to your post, yes, of course it is possible to recover from it. In my experience, I also caught a very aggressive bug a few months ago and I couldn't recover completely from it for several weeks, I was in pain and my bowel movements were terrible (diarrhea and constipation that never seemed to go away), after taking antibiotics and medicine that made things worse I was told I had IBS. I later went to see a doctor who specializes in functional medicine and he told me that IBS was not what I had but rather an acute case of gastroenteritis, worsened by the antibiotics I took to try to cure it. What he prescribed was good quality probiotics (ProbioMax Plus DF) and another thing that you mix with water called Opticleanse (which tastes like chocolate). These two things, along with a diet where I cut out gluten, dairy, sugars, alcohol and vegetable oils, helped me tremendously. I am currently feeling so much better and I'm reintroducing food slowly to my diet, my bowel movements and consistency of my stools are pretty much normal most of the time. I realized stress and anxiety were a huge factor for my health, it was hard to believe but it's amazing what some exercise and relaxation can do to help you. I hope this helps someone!! Please go see a functional doctor as it seems traditional medicine only treats the symptoms superficially and doesn't do much to help actually cure you. My doctor told me there really is a recovery process for everyone and there's a LOT of things you can do for yourself. I hope you get better!

  • Hi beetbeet,

    Thanks so much for creating an account just to post. How long are you into your recovery? The date on your post says 3 months ago and you mention in your post that your PI-IBS started a few months ago. I too am considering looking into functional medicine and also a naturopath. Hoping you post again with more info. So glad you joined here.

    TO68

  • I worked with a man who caught this was it MRSA you got? He caught it in hospital too and it effected his bowel. You have to be vary careful as you can get flair ups after getting small viruses ect. Might be an idea to try and take some strong vitamins to help your immune system a little.

  • Hey Diddi,

    Are you still out there? How are you doing on your recovery journey?

    TO68

  • Hi: I'm going on only three weeks of what my doctor thinks could be PI-IBS. I was in Sayulita, Mexico for 10 days and three days after I returned I had a violent case of diarrhea, chills, fever, terrible stomach pain. My doctor ran tests for bacteria and parasites and everything came up negative. She assumes I had a stomach virus and that my gut is now damaged as I still have diarrhea, nausea, bloating and cramps. I can't tolerate many foods, such as dairy, any raw veggies, anything spicy. Anyone have tips on what to do early in the process? I've been taking Culturelle and BioK. The BioK does seem to help a little. I'd like to prevent this from continuing for months and years on end.

You may also like...