I have to let my story out. I'm so frustrated with my everyday life that I have to tell my story to others like me. I'm not looking for pity, or even trying to complain. I just need that all important release of frustration, anger, and confusion at this mystery that is life with IBS-D.

Sometime in the fall of 2005, I became pregnant. We weren't expecting it, but together we decided we could handle a child and thus began an entirely new journey in our lives. After a tough pregnancy (high blood pressure, nausea the whole 9 months), our daughter was born in July- and I began the road downhill. One morning about a month later, I woke early with horrible pains ripping through my ribcage and upper abdomen. At first I assumed heartburn, but ten minutes later I was retching over a toilet and screaming in agony. My husband called an ambulance only to have the pains disappear right before they arrived. Figuring food poisoning, we dismissed the issue. Less than a week later it happened again, and I found myself in the doctor's office a short time later. Immediately my doctor guessed and later confirmed that I had gallstones. We began preparations for a rush surgery, seeing as I was on state health insurance because I had been pregnant- and it was about to run out.

Soon we were meeting with the surgeon, and talking about my surgery. I specifically remember asking about any risks, and changes in my life after the surgery. He said, “No, nothing. You’ll be able to eat everything like normal, no change in your life at all.” Then, six weeks after my daughter was born, I was being wheeled back into the hospital for my laparoscopic cholecystectomy (gallbladder removal).

Surgery went great, according to the surgeon. After a few pain-killer hazed days of recovery I began thinking I was going to finally get better and be able to focus on my new life with the baby.

Wrong!

It snuck up on me. I expected some bowel issues, after all I had just had abdominal surgery, they removed an organ! But why was I still getting diarrhea two months later? And how come I was throwing up a lot still? It seemed like I was allergic to everything I ate. I began this never ending cycle of stomach problems- I became nauseated easily, constantly running to the bathroom, unable to complete a meal without stomach cramps, sweating, and diarrhea at the least. Here’s where a normal person would go to the doctor, but we are a prime example of America’s true middle class- we work hard and make just enough money to not qualify for state or federal assistance, but not nearly enough to afford health insurance. And in our area at least, a doctor visit without any tests or scans is starting at about $200. So, I suffered.

However, my problems didn’t just go away like I’d hoped. After some hospital visits with pretty scary symptoms, we managed to get on a short term private health care assistance program. After about a billion tests and three wrong diagnoses, I was able to see a gastroenterology specialist and was finally diagnosed: Post-Cholecystectomy Syndrome and Severe IBS-D. Lovely little mix. Basically the gallbladder helps control how much bile acid goes into our intestines. They took mine out, and now my body can’t figure it out on its own and pours bile acid constantly into my small intestine. This trauma to my digestive system seems to have triggered IBS, which works together with all that acid to make me extremely miserable.

So then we tried treating it. I have tried every medication available for both problems but they either didn’t work, caused harmful side effects, or made the problem significantly worse (not to mention the costs!). Currently I no longer have access to any medical care at all, so any prescribed meds are useless to me anyway.

I rarely eat more than one meal a day, it hurts from the beginning to the end of the digestive process. I have lost over 80 lbs, extra weight to be sure, but the most dramatic seems to be the last 40 lbs over six months or less. I don’t go out to eat, and I rarely eat at friend’s houses. I fear that if I leave my home, I will have an accident- it’s happened on a few occasions. I struggle some days to get out of bed, the cramps have been so painful I’ve even been in the hospital more than a couple of times for them. My husband and I have had some serious relationship problems that stem from being sick. I’ve lost a few friends- I don’t think they know what to do and find it easier to just avoid me. Taking care of my three year old daughter every day… well that’s not really something I like to complain about but it’s pretty hard sometimes.

I’ve learned that I’m special now in a few ways. Like many others with chronic health problems, I now have a weakened immune system. I have to be extremely careful about food poisoning, salmonella or e-coli would likely kill me easily. I nearly died from dehydration when I got sick from germs in cat feces that had accidentally been tracked inside on my daughter’s shoe. I’m also starting to notice signs of malnutrition in myself because I don’t seem to break down any of my food very well.

It’s affected my life so much- I’m pretty much unable to work, and have even been fired once because I’m too sick to perform adequately, or even show up some days. However, I didn’t work enough before I got sick to qualify for disability. I can’t get disability so I can pay for health care, and I can’t get a job so I can get health insurance. I guess, according to this country, I’m just supposed to suffer and rot away in a corner somewhere they can’t see.

I’m just frustrated. I’m a 25 year old woman who eats and lives like an 80 year old. I used to be this smart, capable woman who could tackle anything life threw at her. Now, I’m a smart, sick woman who struggles valiantly but just can’t seem to get it together enough to fix it. I try so hard in so many aspects but over and over this IBS stuff seems to catch me up. Now, I understand I cannot let my condition run my life, I’m not “Miss IBS-D” a walking embodiment of Irritable Bowel Syndrome. But how can you make your life work when your body won’t?

I guess one day at a time, that’s how.

By: oregonmommy