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by HealthDIGESTIVE HEALTH
My Doctors Told Me I Had IBS—4 Years Later, I
Found Out It Was This Completely Different Disorder
As
told toKELSEY KLOSSJULY 14, 2017 GPOINTSTUDIO/GETTY IMAGES • • •
• • • Caren G., a 33-year-old who works in
education in New York City, dealt with uncomfortable constipation her entire
life.
As a child, doctors told her it wasn't
uncommon for girls. As an adult, theories ranged from irritable bowel syndrome
(IBS) to stress from life changes. It wasn't until she was 31, and after
copious amounts of research, that she finally received the diagnosis she
needed: pelvic floor dysfunction. The pelvic floor is a cluster of muscles that
supports organs such as the bladder, uterus, and rectum. Pelvic floor
dysfunction refers to the inability to control these muscles, hindering bowel
movements and urination, or making sex painful. Most causes of it are unknown,
though childbirth complications or injuries to the pelvic area can play a role
(Caren had neither). Traditionally, doctors focus on treating symptoms in the
affected organ, like the rectum, before looking at the melon-sized web of
muscles and ligaments in the pelvic floor—but 1 in 3 women has a pelvic
disorder, according to the Kaiser Permanente Division of Research. Many go
undiagnosed and untreated. Here is Caren's story. As long as I can remember,
I've always had constipation issues. My parents thought it was something normal
for me as a child, and I grew up thinking that too. Doctors told me it was
common for girls, especially when going through transitions like puberty. Later
on, they told me life transitions like graduating college or finding a job were
the cause. It was always chocked up to a life change, not an actual condition.
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It
wasn't until I was 27 years old that I finally saw a gastroenterologist,
because I was beginning to experience acid reflux. I had a really great
gastroenterologist who I trusted, but sometimes when you go to the doctor, it's
all about figuring out what something is not before you diagnose what it really
is. (Did you know doctors misdiagnose 1 in 10 patients? Here's how to protect
yourself, according to Prevention Premium.) At first, I was put on every acid
reflux medicine you could prescribe, and it helped, but I was still constantly
uncomfortable because of the constipation. Eventually, the gastroenterologist
put me on two drugs for constipation, Amitiza and Linzess, but neither worked.
I was even taking them with over-the-counter products, like stool softener and
MiraLax, a laxative solution. Everything I tried just seemed to further my
discomfort. I had two colonoscopies in one month to rule out Crohn's disease,
which involves chronic inflammation of the digestive tract lining, or colitis,
inflammation of the colon. It was neither
.
MORE: 5 Signs Of Crohn's Disease You Should Know The Misdiagnosis Finally, my
gastroenterologist told me I had irritable bowel syndrome (IBS) (an intestinal
disorder with symptoms such as diarrhea, pain, or constipation),
which is basically an umbrella term for
anything that's not Crohn's disease or colitis. Still, only a very small
percentage of people experience constipation caused by IBS. It was very
frustrating because I knew I didn't feel well, and I just wanted a label for
what I had. Under the direction of my gastroenterologist and the guidance of a
nutritionist, I tried the FODMAP diet, which is a very specific eating plan
that categorizes foods that could be gaseous or irritating to your bowels.
It's an elimination diet where you nix all
foods that fall into those two categories and then slowly re-introduce one food
at a time to see which ones give you a problem. A lot of the foods did give me
problems like bloating and more constipation, because I wasn't getting the
right therapies to begin with (spoiler: I didn't have IBS). (Here's what life
is like for one woman who does have IBS.)
I
was mentally and emotionally exhausted. I was too afraid to re-introduce foods
into my diet, scared that they would hurt my stomach or make me really
constipated. I didn't want to go out to eat because I couldn't eat a lot of
foods at restaurants—take garlic, for example, which is everywhere in New York
City cuisine. I turned down plans because I was afraid to go out and not feel
well, or to order something but have to dramatically customize it at a restaurant.
It's embarrassing being that person, and I
didn't want the attention on me. All these little things were building up and
changing who I was, and I knew there had to be an answer. I couldn't live my
life like that.
MORE:
8 Things Women With "Invisible" Diseases Want You To Know
BREAKING_POINT-SIZED-GETTYIMAGES-520128028.JPG
The Breaking Point
When I was 28 years old, I had to go to the emergency room. I had gained 16 pounds of fluid and stool in 36 hours, and a CAT scan showed an ileus (an obstruction of the intestine) had formed and could cause a rupture. I couldn't walk or eat because I was in so much pain, so the emergency room doctors did two very intense procedures to remove the fluid and the stool. It was traumatizing and embarrassing to have to go to the emergency room for that, but most of all, it was scary to not know if it was something serious or something that could be avoided.
Two years later, the same thing happened again.
At this point, I knew I needed to do the research and really advocate for myself, and understand how to make sure it didn't happen again. This condition had completely taken over my life. I love to exercise, but was unable to go running or to a spin class because I was so bloated. I had to call in sick for work a few times because I was in so much pain. (Beat regular bloating with these seven tricks from GI docs.)
From then on out, if I wasn't working, I was researching. That research, along with a suggestion from my gastroenterologist, finally led me to Columbia University's Center for Gastrointestinal Motility and Physiology. It has a very comprehensive program that involves an anorectal manometry test (which analyzes the muscles and nerves in the rectum and anus), dynamic defecography (imaging that observes the mechanics of your defecation as it happens), and an endoanal ultrasound (in which an ultrasound scanner is inserted into the bowel and anus).
The Moment Of Truth
It was a lot of testing, and it's invasive testing—it felt humiliating and frustrating. I spent two hours in the dynamic defecography test because I couldn't defecate (or poop) on demand. But finally, after all of it, I was given a diagnosis: pelvic floor dysfunction.
I felt a wave of relief, not because it was cured, but because I, at last, knew there was an answer and I was on the road to fixing the problem. What's wonderful about Columbia is they put everything in really simple terms: My pelvic floor dysfunction diagnosis meant that the muscles in my pelvic floor, for whatever reason, were weak but also had trouble relaxing. Both of these things made it difficult for me to go to the bathroom. It could have been something I was born with, or it could have been something that happened over time—the doctors didn't know. But what we did know was that it could be changed with physical therapy.
The Road To Recovery
Once I was diagnosed with pelvic floor dysfunction (at this point, I was 31 years old), I started an 8-week treatment process of biofeedback, which tracks how the muscles in the bowel function as you tighten and relax them. This information helps the nurse or doctor create an at-home exercise program for you to strengthen the necessary muscles. It's about retraining your muscles and learning strategies for how to go to the bathroom, use your muscles, and strengthen your pelvic floor. (Try these six easy exercises to strengthen your pelvic floor—and help you orgasm.)
The exercises were almost like Kegels in a way, with constant tightening and relaxing. My doctors also gave me other strategies, such as using a stool (like the Squatty Potty, $25, amazon.com) when you go to the bathroom to learn how to properly sit on the toilet (propping up your feet on a stool can help you mimic a squatting posture, which relaxes the muscle around the rectum that is responsible for continence). I even learned how to schedule half an hour in the morning to relax and not rush, to let my body breathe and give myself time to "go" if needed.
Try this yoga pose for relief from tummy troubles:
wisting Child’s Pose For Digestive Relief
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Since those eight weeks of biofeedback, I haven't needed to go back to the doctor, and that was a year and a half ago. I continue to use a stool every day and do the exercises when I feel I need them, and I've also started to eat more foods again.
All of those little things opened up a whole new world for me, and getting the right diagnosis completely changed my life. A weight has been lifted to not think about constipation as soon as I wake up in the morning. My husband and I can share a meal now, and I can spend time with friends without being nervous about the restaurant we're going to. I'm also not as wary about traveling—if you're, say, on a bachelorette party weekend, the last thing you want to do is give yourself an enema (which involves injecting liquid into the anus to encourage defecation). I'm very lucky that my friends and family have been so supportive, but it didn't make those things better or easier.
Most of all, I learned to advocate for myself, voice how I feel, and insist that there had to be an answer. It couldn't be just that it was normal—this is a condition. Most women don't talk about it, or they think it's just who they are. They think you can be uncomfortable, and it's okay. I know because that was me for a long time.
My advice: If you think something's wrong, do your research. Continue to ask questions. I always had a list of questions and I made sure I got them answered, or that I figured out how to get to the right person who could get me the answer. For me, doing that led me to a correct diagnosis and the treatment I needed—and that completely changed my life for the better.
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