I swear I knew it all along…

After my venogram in December and the fiasco at my follow-up appointment to discuss surgery, I had pretty much given up hope that A) we had finalized a diagnosis and B) that I would ever get better. Unfortunately, my next round of follow-ups with the specialists weren’t much better.

By the time my follow-up with gastroenterology had rolled around at the end of January, I knew there really wasn’t much left to do as every GI test had been run up to this point and I was expecting to be let go after a full year of testing with really no results. As I’m sitting there in her office, explaining how once again I won’t be having surgery as expected, she asks me why they offered me the one surgery in the first place if they knew it wouldn’t help. I honestly have no idea what to tell her – Why don’t you ask them?  – I don’t dare say that out loud, though.I look over to see my husband is once again fidgeting in his chair, I can tell he’s getting angsty. However, I wasn’t anticipating what happened next.

In almost slow motion, I watched him mouth the words …because nobody takes her pain f***ing seriously….one syllable at a time. He didn’t just say that out loud, did he? The doctor immediately asks him to leave. Okay, so I guess he really did say that out loud after all. I can tell my doctor was not amused as my husband  gets up from his chair and storms out, and I just sit there, on the exam table, in shock. Now, what? I wait for her to say something but I’m having a hard time holding back the tears in embarrassment and frustration. Really, though, my husband was right – no one does take my pain seriously and I’m becoming more and more tired each day. I really just want to go home at this point.

But somehow, the torture isn’t over for today. She says she wants me to have an anorectal manometry done to rule out pelvic floor dyssynergia for constipation that I have on and off. This is a joke, right? Nope, guess not. She thinks it’s in my head…. that maybe somehow I forgot how to have a bowel movement… I think she is far off with diagnosis. She thinks I should do it anyway. I agree… knowing I”ll prove her wrong… but finally able to leave. I’m not sure how this could get any worse, really… but somehow it always does.

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WHAT IS ANORECTAL MANOMETRY?

(Retrieved from the Motility Society Website)

Anorectal manometry is a test performed to evaluate patients with constipation or fecal incontinence. This test measures the pressures of the anal sphincter muscles, the sensation in the rectum, and the neural reflexes that are needed for normal bowel movements.

PREPARATION

Give yourself one or two Fleet® enemas 2 hours prior to your study. You can purchase the Fleet enema from a pharmacy or supermarket. You should not eat anything during the two hours prior to the procedure. If you are diabetic, this may involve adjusting your diabetic medications. You may take regular medications with small sips of water at least 2 hours prior to the study.

THE PROCEDURE

The test takes approximately 30 minutes. You will be asked to change into a hospital gown. A technician or nurse will explain the procedure to you, take a brief health history, and answer any questions you may have. The patient then lies on his or her left side. A small, flexible tube, about the size of a thermometer, with a balloon at the end is inserted into the rectum. The catheter is connected to a machine that measures the pressure. During the test, the small balloon attached to the catheter may be inflated in the rectum to assess the normal reflex pathways. The nurse or technician may also ask the person to squeeze, relax, and push at various times. The anal sphincter muscle pressures are measured during each of these maneuvers. To squeeze, the patient tightens the sphincter muscles as if trying to prevent anything from coming out. To push or bear down, the patient strains down as if trying to have a bowel movement. Two other tests may be done: first, an anal sphincter electromyography (EMG), a test to evaluate the nerve supply to the anal muscle; second, measurement of the time it takes to expel a balloon from the rectum. After the examination, you may drive yourself home and go about your normal activities.

Anal Sphincter EMG

Anal sphincter electromyography (EMG) is recorded with a small plug electrode placed in the anal canal. The patient then is asked to relax, squeeze and push at different times. The anal sphincter muscle electrical activity is recorded and displayed on a computer screen. Anal sphincter EMG confirms the proper muscle contractions during squeezing and muscle relaxation during pushing. In people who paradoxically contract the sphincter and pelvic floor muscles, the tracing of electrical activity increases, instead of decreasing, during bearing down to simulate a bowel movement (defecation). Normal anal EMG activity with low anal squeeze pressures on manometry may indicate a torn sphincter muscle that could be repaired.

Balloon Expulsion Test

For this procedure, a small balloon is inserted into the rectum and then inflated with water. The patient goes to the bathroom and tries to defecate (expel) the small balloon from the rectum. The amount of time it takes to expel the balloon is recorded. Prolonged balloon expulsion suggests a dysfunction in the anorectum area. What can be learned from anorectal manometry? The anal and

WHAT CAN BE LEARNED FROM ANORECTAL MONOMETRY?

The anal and rectal area contains specialized muscles that are helpful to regulate proper passage of bowel movements. Normally, when stool enters the rectum, the anal sphincter muscle tightens to prevent passage of stool at an inconvenient time. If this muscle is weak or does not contract in a timely way, incontinence (leakage of stool) may occur. Normally, when a person pushes or bears down to have a bowel movement, the anal sphincter muscles relax. This will cause the pressures to decrease allowing evacuation of stool. If the sphincter muscles tighten when pushing, this could contribute to constipation. Anal manometry measures how strong the sphincter muscles are and whether they relax as they should during passing a stool. It provides helpful information to the doctor in treating patients with fecal incontinence or severe constipation. There are many causes of fecal incontinence. Weak anal sphincter muscles or poor sensation in the rectum can contribute to fecal incontinence. If these abnormalities are present, they can be treated. Biofeedback techniques using anal manometry and special exercises of the pelvic floor muscles can strengthen the muscles and improve sensation. This can help treat fecal incontinence. There are many causes of constipation. Some involve sluggish movement through the whole colon, whereas others involve the anal sphincter muscles. In some patients with constipation, the anal sphincter muscles do not relax appropriately when bearing down or pushing to have a bowel movement. This abnormal muscle function may cause a functional type of obstruction. Muscles that do not relax with bearing down can be retrained with biofeedback techniques using anal manometry.

Risks of Anorectal Manometry

Anorectal manometry is a safe, low risk procedure and is unlikely to cause any pain. Complications are rare: it is possible that a perforation (tearing) or bleeding of the rectum could occur. Equipment failure is a remote possibility. If you are allergic to latex, you should inform the nurse/technician before the test so that a latex free balloon can be used.

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Let’s just say I was less than thrilled to have to do this test. Just the idea of having to take two fleet enemas and administer them on my own was enough to get me to freak out. Not to mention, since the test was over an hour and a half drives away, they told me to do it the night before. I was still petrified that I would have some embarrassing accident for sure. Not only did the cleansing make me super sick and dizzy, passing out every few minutes, but also had a lot of pain and bleeding afterward as well. It was almost as bad as the colonoscopy prep, only luckily I didn’t have to drink anything. Up until five minutes before leaving, I was still passing a good amount of blood. Nevertheless, I went to my scheduled appointment anyway.

Luckily, my nurse was very nice and calmed me down as I was very tense going into this test. Still, I was in a lot of pain and worried I’d embarrass myself so I was quite reserved. Along with using a balloon they also did the sponge test to see if I could “pass it”. Let me tell you, it felt like I was trying to pass sandpaper. It was horrible and I was in tears. The nurse tells me everything was within normal limits but a doctor would double-check my results to be sure. I figured my test would be normal anyways and I was just happy I was able to go home to recover.

When my follow-up with GI came around in March, I was far from prepared when the doctor told me that my manometry was positive and that I did, in fact, have pelvic floor dyssynergia. Excuse me, what? She’s sending me biofeedback therapy twice a week. Great, I think, just what I have time for. I honestly don’t know how this is possible based on my symptoms, but I schedule therapy anyway.

After weeks of going to biofeedback therapy twice a week, my symptoms were anything but better. In fact, the extra added stress of trying to make it to therapy twice a week, on top of everything else, likely made everything worse. It was actual torture and I was starting to feel like this was punishment for my husband disrupting the appointment. The therapist also focused more on relaxing my vaginal muscles more than relaxing anything else, which I found to be useless in all honesty. How was this teaching me how not to be constipated, again? They kept asking me if I was eating – of course I’m not eating, that’s what causes the pain, but nobody listens to me. The honest truth, each and everyone one of my muscle in every area of my body  hurts. They are tense because I am always in intense pain every single day. I’m getting angry. I ask for a copy of my test results because I honestly don’t understand how I have this condition in the first place and all the results in biofeedback therapy are coming back as normal.

When the report finally comes in, my test was borderline at very best. I knew it! I likely didn’t have completely “normal” results because I was in pain while “pushing” and now I’m really angry that I have wasted my time.

Within a few hours of reading the test results, I get a message from the radiologist that I had sent my GI scans to a few weeks back to review for me. I  had asked him to look at them for me since every doctor kept denying that I had superior mesenteric artery syndrome when the reports kept saying I had it, or the doctor would say I have the right angle for the condition but because I didn’t have dilation in my other GI scans, I couldn’t have it. Sure enough, the radiologist had confirmed not only the angle and the aortomesenteric distance, but the dilation of my duodenum was missed in three separate scans.

According to Karrer et al. (2015), the “CT criteria for the diagnosis of superior mesenteric artery syndrome include an aortomesenteric angle of less than 22 degrees and an aortomesenteric distance of less than 8-10 mm” (para. 1). My aortomesenteric angle was 17 degrees and my aortomesenteric angle was 4mm.

When I went to my next biofeedback appointment, I share the diagnostic news with my therapist. She asks me if biofeedback has helped at all, which I of course reply that it hasn’t. She feels like the diagnosis is incorrect as well and decides to dismiss me from therapy. I have yet to follow-up with GI doctor but I have an appointment scheduled with her in a couple of weeks. Not sure how this is going to go, but I think this will be the last time that I see her – officially. Things were missed in my testing that was super important and  I could have been treated over a year ago when the testing first mentioned the findings of all these conditions. Again, if only these doctors would have listened to me or checked the scans themselves. My husband was right, despite his behavior that day. On top of it all, I was diagnosed with a condition that I feel was more of a punishment than something I believe the doctor would honestly never think that I have since I do not have 99% of the symptoms of pelvic floor dyssynergia.Needless to say, it’s going to be interesting to an interesting follow-up. Maybe I’ll bring my husband with me one more time…

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References:

Karrer et al. (2015). Superior Mesenteric Artery Syndrome Workup. Retrieved from http://emedicine.medscape.com/article/932220-workup

Motility Society (2005). Patient Information on Anorectal Monometry. Retrieved from http://www.motilitysociety.org/patient/pdf/Anorectal%20Manometry%20Patient%20Information%208%205%202005.pdf