My intro & IBS story so far
(Sorry this is a long post)
In Spring 2018 I thought I'd come down with something like flu. It came very suddenly and prior to that I had felt fit and well.
But I had no respiratory symptoms and no fever. Just extreme tiredness, some nausea, headache and that weird malaise you get the first couple of days with flu.
It didn't really go away.
Week 3, I went to see my GP (I'm in UK) He did blood test, urine test and general physical checks in his office (the last two were normal). Everything was normal when I got the result of my blood test too.
In the 4th week I got an upset gut (loose bm's) but only once a day and occasionally twice.
For a week I couldn't eat certain foods or they upset me.
Then that went away, but the "fluey" feelings came and went for the next 2 years.
At one point I went to the dr. again and another doctor saw me that time. She told me it could be "post viral syndrome" and if it went on beyond 6 months, it might be ME/CFS.
I also had a head CT scan and a neurology consultation because of a recurring mild right-side head pain. He also gave me a basic neuro. test and found no abnormality. My blood work was again -normal.
He suggested it might be a form of migraine.
In 2 years I felt I was making some progress, as I had many more times when I didn't feel so bad. I did sometimes get post exertional malaise but I was managing.
Fast forward to Spring 2020. UK hadn't yet gone into full lockdown. It was early March. I suddenly got the upset gut again. It came on out of the blue.
It went on for 9 days and subsided. I ate low fibre food for those 9 days. Then it went for about 10 days, and came back, and went away again.
Then I caught Covid, April 2nd 2020. My gut was okay when I had the worst of Covid, but the loose bm's came back about 3-4 weeks later after I had made a good recovery from Covid.
I got lower abdominal bloating and distension, some discomfort (not bad pain) a feeling like something always creeping around in my lower gut left side, more gas, swollen lower abdomen, which was worse later in the day and OK first thing in the morning.
and on and off loose bowel movements.
Some days with no rhyme or reason I would be okay, but the symptoms kept coming back.
I couldn't eat certain foods like apples, oatcakes, carrots, beetroot, turnip, oranges, tomatoes, lentils, beans, peas, or they went straight through me. I couldn't eat potato skins of grape skins etc. I had to lower fibre intake. If I did that , I could keep more of an even keel.
In the summer 2020 I had another blood test (normal C reactive protein, normal iron levels, normal vitamin levels (no signs of malabsorption), and everything else normal.)
I also had 3 stool tests:
1) fecal occult blood "FIT" test (normal)
2) Calprotectin (normal)
3) lactoferrin (normal.)
The doctor said that there were no red flags at all, signs of parasites, infection, or inflammation, and thought I had IBS.
I then tried the low FODMAP diet for 8 weeks, slowly introducing small amounts of high FODMAP foods one by one.
I discovered a mixed situation. Some low FODMAPs I still couldn't tolerate. But some high FODMAPs were fine with me and caused no upset, and they hadn't done before either.
It seemed more like fibre in fruit and vegetables that upset me more.. Even low FODMAP fruits and veggies. Anything high-fibre got me. Anything low fibre and my gut was calmer.
The gut symtoms went away sometimes and I was normal for a week, or even three weeks, and could eat mostly anything.
Then they would flare up for a few days, and go back to normal again.
I don't get the original fluey symptoms from 2018 now. They have gone. Everything seems to be the IBS now.
I am getting long periods when my gut seems much better and normal, followed by a bad flare up ( not even stress related) which usually lasts a couple of days, then back to pretty normal bm's, but with some lower gut distension and slight windy discomfort at times.
It seems like it will never go away and I always have to be careful what I eat. I had a really healthy diet before this all started.
Hey
I'm sorry to hear about all that you have had to go through for the past three years. It sounds like a very frustrating experience that I have gone through myself as well. My own personal IBS journey started 20 years ago in a very similar manner. I got flu-like symptoms after a trip to a theme park that lasted for about 8 weeks. The flu symptoms eventually subsided, but all of the IBS symptoms remained. I had always hoped that after a few months that everything would magically go back to normal. 20 years later, I've stopped wondering when I will ever feel normal again, and instead decided to focus my time on working with my limitations and making my life as enjoyable as possible while dealing with my IBS limitations.As you have likely already heard before, there is no "cure" for IBS. IBS is just a collection of symptoms that appear in varying degrees of intensity for each individual. After dealing with these symptoms for the past three years yourself, it may be time to look at how to live your best life while managing your IBS symptoms at the same time, instead of hoping that they might go away at some point in the future. It can be a difficult pill to swallow, but many individuals with IBS never fully "recover" from their symptoms. Pre-IBS I loved eating many different fruits and vegetables, along with many other healthy food options. Post-IBS I have issues with 90%+ of fruits and vegetables I eat. Over time I have learned what to avoid, and what I can eat in conjunction with other foods to slow down the digestion/absorption rate to provide less issues for my gut after each meal. Unfortunately, the healthiest option and the most IBS friendly option are not always the same choice.
Working on making meditation a part of my daily routine has helped tremendously as well. Feeling like I am better at controlling my stress and anxiety levels has helped me manage my IBS symptoms just as much as years of diet changes. I try to focus on gratitude for the positive things I do have in my life, and work on the self-awareness of my reactions to my IBS symptoms. I'm sorry you have been struggling through this experience and I hope that things start looking better for you in the near future. Focus more on enjoying the time you have without any IBS symptoms and make the most of those days.
Dear Justin.
What you said here:
"I've stopped wondering when I will ever feel normal again, and instead decided to focus my time on working with my limitations and making my life as enjoyable as possible while dealing with my IBS limitations. "
and
" After dealing with these symptoms for the past three years yourself, it may be time to look at how to live your best life while managing your IBS symptoms at the same time, instead of hoping that they might go away at some point in the future."...is so sensible, and that's how I am looking at my situation right now. I am grateful for the good days, and the days when I do get away with eating 2 tablespoons of lentils or chickpeas etc! Those simple things are such a treat now!
And yes, I have begun to adapt to my new self and work with it rather than hate it so much.Last time I had a flare up for example, I found I wasn't quite as disturbed by it ....even having to "go" six times in the night, and getting little sleep that night. I played some lovely music and read a book while I stayed up waiting for "the next time a #2 was on its way" ! (lol!)
You are right that sometimes the healthiest option, and the IBS-friendly option aren't always the same thing.
One of my IBS friendly things is hard boiled eggs and white rice with green beans. Not the worst dinner ever, in fact. There are more unhealthy combinations.
But I have to choose white bread over wholemeal now, and it was ingrained in me almost all my life that white bread "isn't good for you".
Too bad. It's good for my IBS, when my gut is calmer as a result of eating it!
Raw salads nowadays, I have to pass on, unless it's plain lettuce with a tiny slice of avocado.It's strange that your IBS also started with something that felt like flu.
I could have understood it if that had been after Covid (which can affect the gut), but most flu's never affected my gut, so what we both caught, 20 years apart, is a mystery.Thank you for replying to my post and for your input, and I wish you the very best on your own IBS journey.
