Undiagnosed IBS, But Still Valid

Hello, everyone, it's nice to meet you. I'm Thyme. I'm currently 21 and would like to share my IBS story. This story is quite all over the place and I share quite a lot of details, but I'm very glad to have found this support group. It's unfortunate, but nice to know I'm not alone in this.

Complications of living with multiple health challenges

This isn't easy for me to talk about, but I have a multitude of conditions probably contributing to my IBS symptoms, such as Complex post-traumatic stress disorder (CPTSD) and Obsessive–compulsive disorder (OCD) as well as Premenstrual dysphoric disorder (PMDD) along with depression, anxiety, and undiagnosed Autism spectrum disorder (ASD). It's hard to say what exactly is causing my IBS symptoms, and it doesn't help that I wasn't able to get a proper test or diagnosis from the GI, but I am trying out different safe foods, learning how to cook, and trying to see what works and what doesn't all on my own.

Complications of living with a misunderstood condition

I live in a Japanese-Italian household with my parents and my siblings. My siblings are on the severe end of the autism spectrum, but are also spoiled and extremely picky eaters in general (You can be autistic and spoiled; all children have personalities). They demand to eat the same unhealthy processed foods every day and will overwhelm my mom and my grandma into giving them whatever they want, while my dad only likes Italian food, which tends to be high in carbs and acid such as pastas and tomato sauce. My parents will let me eat what I like, but my dad comments on how disgusting the food I eat looks, since he doesn't care for vegetables. I have a good relationship with my family otherwise.

It's hard to pinpoint exactly where my symptoms started, but they likely started roughly around the time I was 16 years old. At that time, I was very sick with stomach problems for months from an infection, so I had constant nausea and diarrhea for months and didn't feel I could eat or go to the bathroom very much, and I ultimately got a severe asthma attack and tetany from a calcium deficiency. Eventually, after 6 months, I recovered from all of this and finally was able to walk on my own again and use my hands, but the diarrhea was still there for every other meal I ate, and sometimes constipation, and I became notorious in my family  for clogging the toilet without using much toilet paper. Early in the week, I would have diarrhea, and later in the week it would build up to constipation. Sometimes I would have constipation because I couldn't eat much, other times, eating something would immediately give me diarrhea for no reason.

Complications of pinpointing the cause if my IBS

We went to the gastroenterologist for this, but they honestly weren't much help at all. I kept an entire log of my symptoms along with everything I ate and drank each day, I said that I think I had IBS, which they just ignored and just said I COULD have IBS, and told me to describe a typical week for me.

I described Mondays and Tuesdays as diarrhea, and the rest of the week as constipation. They gave me a blood test which only turned up with low iron, common for me with PMDD, and a stool test, but I was severely constipated at that time and it's not practical to use a stool test at home and bring it to the doctor later. I was given Zofran, referred to pelvic floor therapy where they gave me Metamucil and charged $60 per appointment with insurance for me to go once a week to complete exercises I could do at home. I've been given Zofran a concerning number of times in my life, so I'm avoiding going to the doctor for stomach symptoms unless I absolutely have to.

I do not know exactly what triggers me since I have no food allergies and neither gluten nor dairy affect me much, but I notice when I eat things that are high in carbs, grease, or acid, or are too sweet, I get diarrhea almost instantly. I have an idea of what not to eat, but what to eat is a little harder. I try to eat foods with fiber which helps regulate constipation, but other than that, I'm still learning what to eat and how to cook it. I have tried a few recipes that were successful and that was the first normal BM I had in 4 years.

Having support makes it a little less complicated

IBS is not fun to go through and it ruins my time with my family, eating food with my family, and it has made me feel insecure making me underweight until now, but I'm very happy to have my mother who understands me, some recipes I was able to find online and in books, and of course, you all. ❤️ It means a lot to me that I don't have to go through this alone, and I'm very lucky to have found this. I hope you have a wonderful holiday, enjoy food that makes you feel good, and stay safe!

-Thyme

This is my story.