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I'm currently facing a non IBS related health issue, and reading positive success stories has immensely helped me.

As such I thought about writing about my own recovery story with IBS, hoping it might help some of you.

There are many people out there with IBS, and a lot of them recover without ever knowing forums like this exist, and you might not hear about their positive words. I felt my IBS case was hopeless, as I'm sure many of you feel now, but at some point following several approaches I got control back over my life.

I had IBS for a little over 10 years, starting in childhood. It was a constant presence in my life, and it went undiagnosed for years. I just had a strong stomach cramps often, sometimes with D, sometimes with C. It was making my school life complicated.

Eventually a Gastroenterologist told me I had IBS and this meant I had a bunch of symptoms with no clear explanation and no clear cure. I would learn to deal with it, according to him. I should take more fibers and keep track of what I eat to figure out what caused the flares. Even as a child I was pretty disciplined with this but I quickly realized fibers just made everything much worse for me. They just instantly meant bad D and a full day or more of cramps.

We went to an allergies expert who examined me, but my body was ok. I did a battery of exams, many stool samples, blood samples, etc, and it always returned completely perfect. I had no parasites, no infections. Nothing was wrong with my body, but I still had excruciating cramps and still oscillated wildly between D and C. It was psychosomatic, they said, and it would go away when I had better control of my feelings.

I got prescribed daily pinaverium bromide, in 4 small doses (50 mg). I felt like that did absolutely nothing. I reduced my whole diet to basically only 3 types of foods. Some red meat, some potatoes and some white rice. This minimized the symptoms, but didn't make them disappear completely. I could have good weeks, or bad weeks. I found some sweet cookies I liked. I ate only these few foods for about 3 years, and this greatly reduced my IBS symptoms even if it meant I lost quite a bit of weight. My GE said over time I'd feel better and could reduce my dosage of pinaverium bromide. Since I thought it didn't do anything to begin with I just stopped taking it altogether.

With my extreme diet I managed to get confident enough to start trying foods again, and it felt good to taste new things again. I started eating half a bucket of ice-cream per day just because it felt good. Sure I got some bad IBS on the day following, but since I knew what to expect, it didn't feel as threatening. It made sense. The biggest pain seemed to come from the unexpected flares. The "But what did I do to cause this one? I was taking care!" feeling. That was truly desperating. If I knew that eating half a bucket would just give me a small flare for a day my head wouldn't be too phased and I could actually enjoy foods. This lasted for a good while and I even managed to go on big school trips which I had previously been avoiding. Got into a relationship and my life was looking up. IBS was still there, but mostly something I could live with well.

It's important to note how exhausting and depressing it was to have to constantly check what ingredients went into things in restaurants, and whenever I was invited to dinners, to hear from relatives or partner relatives about how it was all in my head, how I was doing that to myself, or hearing about cures that seemed silly when I was literally every day in some sort of pain. They could never understand what it felt like, and even in moments where everyone was just enjoying their time I would be in agony, and it felt unfair. The stress of college entry exams led me to developing some gastritis. I was a heavy consumer of soda (mostly coca cola) and almost never drank water, but after I got a gastritis episode that made me throw up in school, I gave up sodas. In the years that followed I could probably count in one hand the times where I drank any type of soda. I also reduced for a good while the number of acidic foods I ate.

I had developed the habit of skipping meals thinking that would reduce my chance of IBS flares, which were starting to get more frequent again even with the reduced diet. I mostly skipped lunch, almost every day. I kept this habit throughout most of my masters' degree as well.

One day my then partner had an accident and we rushed to the hospital. At that point I was already in college, under a heavy load of stress due to hard subjects. I had a tough exam and had to study, but didn't want to leave my partner in the hospital until I knew she was OK. After everything was cleared, we left with her family to eat in a closeby sandwich place. Everything looked normal, we went to sleep.

Next day I woke up with a terrible case of food poisoning. Whatever balance my guts had achieved was destroyed. I had the worst flares of my life, daily, for about 3 months. I could barely leave my house for 5 minutes without getting D that made me cry from the cramps. There were no safe foods, it was just agony. Not eating anything didn't seem to help either. My then partner got tired of me being sick all the time and not able to lead a normal life, and our relationship ended. I was devastated, but still had college exams to carry out. I strongly contemplated suicide many times at this point. I went to a psychologist briefly but didn't have money to continue going. I would think about the days I could eat the ice-cream buckets and be fine, and now I could barely eat toast without going through hell. My GE was puzzled. My exams had cleared from the food poisoning, but the hell continued. He couldn't understand what was happening. I had to take a combination of Loperamide and Racecadotril to somewhat contain the D and the strongest form of butylscopolamine and dipyrone to deal with the pain from the cramps.

At that point the situation had gotten insane. I didn't have a life anymore. So I thought I also had to get slightly insane to get out of it. I developed a crazy plan that didn't necessarily make much sense, but I'd stick with it. I had long stopped doing any exercise, but I decided I'd walk to a closeby shop once a day. It was so close the walk was barely 5 minutes long, and that would be enough to be challenging and give me horrible cramps once I was back, but I would do that. No excuses, no matter the bad thoughts. If I had to think of a music playlist to give me the courage, so be it. If I had to listen to "Gonna Fly Now" and imagine I'm Rocky Balboa, so be it. I didn't care what would happen, but I needed to walk those 5 minutes, and back home.

Soon enough, I was able to walk 10 minutes. Soon enough, 20. Soon enough I found the "Couch to 5 K" program, which is just a chart on how to run 5 km for the first time, in 30 minutes, if you never ran before. I thought running couldn't be that hard, so in a flash of motivation I woke up at 5 am and decided to run on a nearby track to see the sun rising. I thought I'd run 20 mins for starters, and after 2 minutes I was almost dead and nearly throwing up. I realized how much effort that would require. It took me 3 months of following the charts, but it finally happened. I ran 5 km in 30 min. Every time I hit a landmark I would reward myself, either with a new playlist, changing my running track, or buying myself new running clothes. All of this was completely made up and insane, but the insanity was necessary to deal with the insane situation, and it was working. I still would come back home and collapse with IBS, but for the duration of the run, I was free.

I was one of the few people to graduate from my extremely challenging university course. I had lost my relationship, most of my sanity, but I had conquered that course. I was now free from my main stress source. That means the IBS went away, right? Wrong. I was still in very bad shape and still feeling aftershocks from that food poisoning. I then changed doctors, and my new doctor, who was just a general practitioner and not a gastroenterologist, told me to start taking the pinaverium bromide again. I was skeptical of that thing, but I did start taking it. To my surprise, it actually did do something. I found somewhat of a balance if I took that combo of medications to stop the D and to stop the cramps, and take my 4 50mg pinaverium pills per day.

On my first day of classes in the masters, I woke up early with massive cramps. My head was telling me to skip it, but I said to myself I would go to class, and stay there for the 8 hours I needed to stay, even if that meant I had to crap myself in the pants. That was important, even if it sounds stupid. I went, and it was challenging, and I had many desperation moments during and after the class, but I watched the whole thing. I said I would use the public restroom no matter how bad it looked or was. I would not let IBS take another thing away from me. It had already costed me too much of my life. Easier said than done though. Now I had to travel for meetings, presentations, worry about foods of other cities and other countries. After one of those meetings, my stress was bad enough that I started having frequent and bad flares again. I went to my GP once more, and he passed me some new strategy he had heard of. He told me about probiotics, and about trimebutine maleate. Told me to take both for a month, I forget the specific dosage.

The probiotics gave me some of the worst cramps in memory. The result of the cramps wasn't bad, but the cramps themselves were unbearable. I gave up on those probiotics after a week. I unfortunately forget the name of those. I decided I would only use small doses of Saccharomyces boulardii if I had a particularly persistent D.

Eating gluten free things that had almost no seasoning provided me some relief at that time, but again, not fully.

I did, however, keep the trimebutine maleate for the whole month. During that month I stopped feeling daily cramps, and stopped having D and C. I had the habit of going to the bathroom 3 to 4 times a day, and I would worry deeply if I went a few days without going. The maleate somehow reduced this, making me only go every few days apart. I stopped counting them. This gave me a feeling of fuller bowels, and that the food was somehow being digested for longer, and better. My body was working well again and I felt hungry for new foods. I started eating pizza and mcdonalds, just because I could. One ice-cream every two days. Kept my jogging and walking. Had a steak dinner. I noticed that skipping meals had a terrible effect on me, and that if I managed to hold in for a couple days while taking the trimebutine maleate that made my whole system work so much better.

I'm not a doctor, but my mental model of what happens was that my body has a harder time than the average person to go back to balance by itself when it comes to the bowel movements. If I get bad C or bad D it just didn't use to solve it by itself. The primaverium bromide woked to lessen this effect, and keep it more balanced, but it's pretty weak by itself. If your body has big swings like mine had in either direction, it's as if the bromide wasn't enough to bring it back to smaller oscillations. The trimebutine maleate, however, helped a lot in those bigger swings. It was like the stronger counterpart to the bromide. During that month of taking it, I got back in balance after years of hard swings in D or C direction.

I noticed that less mucus came out if I didn't skip meals. Clearly skipping meals had a bad effect on the IBS, leaving not just my stomach full of acid, but making the entire gastrointestinal tract upset. Eating smaller meals throughout the day and always being slightly full, while taking the regulating medicines, was doing wonders. I started to really forget about how often I went to the bathroom. Stopped thinking about consistency, or pain. If I did get a flare, I would tell myself it wasn't important to think about what caused it anymore, because my body would return to it's balance state. While taking the pinaverium bromide daily, my body was a stable equilibrium, rather than an unstable. If I had a particularly hard swing, I'd say to myself "ok body, you just gave me a reason to take another month of trimebutine maleate, so you'll o back to balance. Don't worry".

My years and years of planning each meal by the minute, thinking what effect it might have in an appointment 3 days from onw, were over. I was not just back to the predictable ice-cream bucket days. I was even better. If I had a small flare, or a little more gas, or a small cramp, I could care less what caused it, cause I knew it would be gone in no time just because my body was returning to balance faster again. I was able to travel many more times abroad to far away countries worrying much less about food. I found out maybe it's not the end of the world if you end up farting in front of a partner or being honest with them about your condition, provided they are a decent human being. This helps a lot too in relieving the pressures in the head.

I have been now for about 3 full years without a single notable bad episode of IBS. I still do have IBS, I probably have a bit more gas than the average person, during extremely stressful times I might feel my stomach rumbling a bit more, but I never had to stop myself from eating anything I wanted, or going anywhere I wanted, or had any desperation moments in this time. I didn't have to stop myself from traveling, going out, eating in restaurants, or whatever, and it wasn't because I was holding in the pain. I just wasn't feeling pain anymore.

That month with the maleate gave me enough time without pain to just set my thoughts back in order. It sounds stupid, just 1 month in a +10 year journey, but all I needed was some time without pain blurring my vision to get a better grip at my life.

I'm not saying any of these things I did is a magic cure that will work for everyone, or that I'm immune to anything now. I still dearly hope I never get food poisoning again and I try to be very careful about this, even if it's not always up to us, but I do feel that I have more tools than I ever had to deal with any problems that might arise, and that in fact it's not that likely that these problems will arise anymore. Other people in my family had IBS in the past and live with it now with ease, and I couldn't understand how. I'm now one of them, and I hope you'll be one too. Maybe some of the things that didn't work for me will work for you, and vice versa.

Sumarizing:

- Fibers / Probiotics didn't work too much for me, but I know they do for some people.

- Skipping meals, while it seems smart, made my IBS a lot worse. Small meals throughout the day helps.

- Not drinking soda anymore helped me. Water is fine, sparkly water is fine but might give more gas, beer/wine are fine but in moderation.

- Exercise helped a lot. Distracting your mind and spending that tension energy is good.

- Pinaverium bromide 50mg 4 times a day every day, to make my body always be as much of a stable balance as possible.

- Trimebutine Maleate for a couple days, or as long as necessary, whenever I eat some crazy food or some strong emotion gives me a big swing.

I really hope this manages to bring someone here some kind of solace. Don't give up. As you see from my text I had pretty bleak moments, but it improved. It always does.

I honestly wish the best to anyone here, as only we know the kind of ordeals we go or went through.
 

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Thanks for sharing your story! Sounds like you have really been through the wringer, as well. I tried to make a positive post recently and I always try to keep that positivity when I reply to people. Being miserable and feeling doomed does you no good, but it can certainly do you harm mentally. What's the point of that?

I am with you that, no matter how bad things are, you can't let them stop you from getting out of the house. There are sometimes important things I can't miss, and I've said that I'd wear diapers sooner than I'd let IBS stop me from attending to those things. As my IBS-suffering mom told me when I asked how she had coped for decades, her answer was pretty simple. She said "Imfigure the worst that can happen is I crap my pants and life goes on," and life does indeed go on for her. She doesn't let it stop her.

It took many years for me to give in and see a gastroenterologist and get formally diagnosed; I have health anxiety and avoided it. I'll admit that not all of the tests were pleasant, but he was doing well by me in being thorough and ruling other things like Crohn's and UC out, along with a boatload of other stuff checked for via blood and stool. I never had a colonoscopy, though. He did not feel it was medically necessary in my case, and we both preferred to avoid it. I already had a painful disability in the pelvic region, so best to avoid anything intrusive there.

I firmly believe that a good, caring, knowledgeable gastroenterologist who wants to help in the long term is important to success. In many cases, I also think a psych of some kind is important for your medical team, and not because it's all in your head. There is scientific proof that the brain and gut have a powerful connection. If your brain is drowning in anxiety, it's gonna agitate your IBS symptoms.

It is probably the case that I handled the onset of worse symptoms better than someone brand new to chronic illness because I was already chronically ill beforehand. I'm still in pain from that disability every day, but I learned to cope over the years. The same can be done with IBS. I don't believe there is a silver bullet for curing IBS, and I never tell people that, as it's a chronic condition and will be with you even in the good times. What's more important is that good times can and do happen. Symptoms do shift to less severe forms. I don't believe in hopeless cases.

My best advice is to do what you can every day, don't beat yourself up when things don't go as hoped, and make time to something other than think about IBS. Don't give up hope, because no case is hopeless, even if your best answer is coping until your symptoms shift. Stay away from negative posts you may soak up, because they will only do you harm. Perhaps most importantly, STAY AWAY FROM GOOGLE. Take it from the voice of experience: search your symptoms and it will quickly send you so far down the rabbit hole, your mind will be tortured by thoughts of illnesses you likely don't have. Doctor Google is evil.

Try to find some positive as you cope one day at a time, and never give up or give in to the idea that you're doomed. It helps a lot.
 
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