When I was 17, I started getting really sick. I would be in the bathroom for hours, sometimes having accidents when I couldn’t make it to the bathroom in time, and living with constant pain. My parents didn’t think I was that sick, but I started rapidly losing weight and eventually they decided that this was, in fact, serious. I went to multiple doctors but none could really tell me what was going on, so I suffered and started taking huge amounts of Imodium to help control my symptoms. By the time I graduated from high school, I was hovering around 120 lbs and was sick nearly every day. My initial diagnosis was IBS-D. The D stands for diarrhea. IBS can also cause constipation, which is referred to as IBS-C. Basically, I was having multiple bowel movements every day, and they were very painful as well. Some food seemed to trigger my episodes, but it was inconsistent, so I never really knew what to avoid.

Fast forward to my sophomore year of college and I was down another 10 lbs and sick every single day. I was scared to leave my house because I was always getting sick, and eating food became a huge chore. I dreaded eating because every single time I ate, I got sick. It was mentally draining, and physically, I was weak and tired a lot of the time. But I was also young, so physically I was able to recover pretty quickly. I lived this way for years, but started getting really frustrated when I was about 25, just plain tired of being sick all the time, so I started researching doctors that could help me. I found a local GI doctor and started working with him and we were able to get my symptoms mostly under control. I had my first colonoscopy that year and learned that I had an extra 10-20 inches of large intestine, and that I had strictures, or very tight sections, in two areas of my large intestine. The result of the testing I went through was mostly inconclusive, but there was some indication of inflammation, which is pretty typical of Inflammatory Bowel Disease, which is the larger family for IBS, Ulcerative Colitis, and Crohn’s Disease. My white cell counts were always high as well because it seemed like my body was constantly fighting an infection.

For a few years after that, my doctor and I were able to control a lot of my symptoms with medication and stress relief (meditation, acupuncture, exercise). It was great and I was able to gain weight and I felt pretty good most of the time. I went from having an episode a day to once every few weeks. This lasted until after I had my second child. Pregnancy was interesting because my symptoms did increase, but I had so many other things going on that I really didn’t notice that too much. After I had Little Bug, my body went insane and it has been that way ever since.

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About 10 months after Little Bug was born, I had a serious episode in which I lost control of my arms and legs and was in so much pain that I truly thought I was going to die. I remember texting Mr. Cereal from the bathroom and saying that I thought I was having a stroke or a seizure. The episode lasted about an hour, with my pain level being at a 10 for most of that time. My worst episodes are way more painful than labor. It is a unending pain that often makes me pass out. To be blunt, I feel like I want to die when these are happening and once they are over, I am wiped out for at least 24 hours. After that horrible episode, I immediately contacted my doctor and got in for an emergency appointment.

I met with a doctor, a nutritionist, and got a referral for a neurologist because of the stroke-like experience I had. I had a bunch more tests done, including another colonoscopy and everything came back mostly normal yet again. Even the neurologist found nothing in my scans. Turns out I was having a vasovagal syncope during some of my episodes. Basically my body was experiencing such high levels of stress and pain that it shut down. Generally this means that I pass out, but sometimes I don’t and instead my arms and legs go numb and I am basically useless for at least 20 minutes. In general, the overall effect of feeling like this all the time is that I am always tired. I never feel truly rested or strong, and I mostly just feel let down by my body.

So, here’s where I am now, and why I am deciding to talk about this. First of all, this is an incredibly embarrassing problem to have. No one likes to talk about their bowels and I have had to do so way too much in my life. Mr. Cereal is super supportive and knows when I am having an episode, I literally can’t control it. I hate that this is my life and that I deal with this all the time. I am still embarrassed about it, even almost 20 years later. Second, I wake up almost every day in pain. I am in pain almost every time I eat anything. I have my meds and I use them when I need to, but the pain is still there. Because of this, and the unpredictable nature of the condition, I had to petition for disability status at my work so that I am not penalized for missing work. My boss is great and doesn’t question this, but I did have to have a very awkward conversation with him about my condition. Third, and lastly, I know that a ton of other women suffer from this. It sucks, big time. I feel depressed about it a lot of the time, especially when I have had multiple weeks or months in a row of feeling terrible. It makes me worried about when I am older and the increasing level of pain I am experiencing. I worry that my kids will get this and have to suffer too.

Oh, and I have literally tried every single medication available; I’ve changed my diet, I’ve done long term antibiotics, and although some things have changed or improved my symptoms temporarily, nothing has been a long term fix. I have good months and bad months, and it seems to be random. Sometimes I wish I could just have an intestinal transplant, but it isn’t just my intestines, it is the way my brain sends signals to my digestive tract, which is not something that scientists have figured out yet. For now, I try to deal with it as much as I can and I take meds when I need them. I am starting a trial with CBD oil to see how this affects my symptoms and I am hopeful that it will work, but I won’t be all the surprised if it doesn’t. Having IBS sucks and I hate it, but for now there is nothing I can do but try something new to see if it helps.

Do any of you suffer from IBS, or other chronic diseases that are difficult to deal with?