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.


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.


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.

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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.

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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.

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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

 

Life’s a game made for everyone…


I struggled with this post, unsure how I wanted to approach it… but really,  I’m not sure exactly what to feel myself. I’m in a whirlwind of emotions right now. And I’ve started new medications, which are wreaking havoc on my body now as well. It’s like my world has sucked me into a whirlwind and spit me right back out again. And there’s so many questions left up in the air and so many more answers I am still searching for…

But it looks like we have several possible diagnoses


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i·ro·ny1
ˈīrənē/
noun
 
  1. the expression of one’s meaning by using language that normally signifies the opposite, typically for humorous or emphatic effect.
    ““Don’t go overboard with the gratitude,” he rejoined with heavy irony”
    synonyms: sarcasm, causticity, cynicism, mockery, satire,sardonicism

    “that note of irony in her voice”
       
    • a state of affairs or an event that seems deliberately contrary to what one expects and is often amusing as a result.
      plural noun: ironies
      “the irony is that I thought he could help me”
      synonyms: paradox, incongruity,incongruousness

      “the irony of the situation”

My post from May 31  is only more proof that living life with a chronic and undiagnosed illness is both a comedy and tragedy wrapped all in to one. 

Monday, after meeting with my immunologist/rheumatologist, I finally received a partial diagnosis and started on a new treatment plan. Sure enough, they say it’s Lupus, despite what previous blood tests have shown. Not only is it ironic that this comes one day after my post about NOT having Lupus, but May was Lupus Awareness month and I got my diagnosis on June 1. I dunno if it’s coincidence but life is really funny, I tell ya.

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They’ve run some more tests they sent out to a special lab that we are also waiting for further confirmations about the extent of autoimmunity I have. So far, based on general blood tests, the lupus does not seem to be affecting the majority of my organs, which is good news and gives me a lot more options as far as treatment goes. They honestly believe it’s a secondary condition that came out with all the crazy symptoms lately from all the stress on my body for being so sick for so long. We unfortunately have no answers as to what caused the anaphylaxis reactions at this point, but because I had three in a week, she’s put me on an aggressive treatment plan for my allergies to stop it before it gets any worse. Ultimately, without me ever mentioning my own personal thoughts, she drew the conclusion to dysautonomia being the primary source of my illness (which I have said behind closed doors for a long time now). She did get me a referral to neurology for the cognitive effects, which may or may not be Lupus related.

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Luckily, I was able to get in quickly with the neurologist and saw him on Wednesday. Again, of his own conclusions after working at the Cleveland Clinic prior, he says it sounds like P.O.T.S. as primary. He wants me to start Beta Blockers once the Lupus drugs and allergy meds have been adjusted, which makes sense because he wants to know what side-effects I am getting from the anti-malaria drugs before starting anything new. Plus I have already scheduled with the cardiologist, so he’d like to see what a tilt-table test will show before doing any radiology. However, none of the potential diagnoses explains the olfactory hallucinations, so he did order an EEG just to rule out possible seizures. I also have my first appointment with the vascular surgeon next week to discuss what the extent of the Nutcracker Syndrome is playing into all of this. 

Between the side-effects from the 12 medications I am taking daily now and all the stress of continued appointments, work, life…. I dunno how I am supposed to feel. Part of me is happy to FINALLY have progress and a name and something I can tell people… that they have probably heard of. I got my validation.  But then I feel silly and stupid for being happy of having an incurable disease.  Then the other part of me is sad because there isn’t a cure. But it is MANAGEABLE. But then I have so many questions still, and so many things are left up in the air. I feel SO CLOSE, yet SO FAR.  See my dilemma? I guess I need to be a patient-patient, but it’s hard. There’s been so many changes this week with work, school, and doctors that I need to update, but I spent about 6 hours in the bathroom today with side-effects and eventually had to go back to bed. I’m tired and worn, but I have hope.

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 I have so much to say, but no way to say it.  I’m almost numb at this point because it doesn’t seem real. And maybe it’s nothing that they say. Maybe it’s something completely different after the next round of testing comes through. But for now, it has a name.

Lupus.

Autoimmune.

Possible P.O.T.S.

Nutcracker Syndrome

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Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start

They tell me I’m too young to understand
They say I’m caught up in a dream
Well life will pass me by if I don’t open up my eyes
Well that’s fine by me

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don’t have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

Didn’t know I was lost
I didn’t know I was lost
I didn’t know I was lost
I didn’t know (didn’t know, didn’t know)

The Ultimate Survival Guide For When Everything You Eat Makes You Sick: Getting A Diagnosis

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There are literally hundreds of conditions or causes to recurrent abdominal pain and nausea associated with eating, both physiological and psychological in nature. Considering the stomach is the primary organ of the digestive process and has connections to almost every area of the body, it’s not surprising that abdominal dysfunction is a common complaint by many of us that suffer with chronic illness. Reaching a diagnosis for problems associated with the digestive system are tricky, as it is a common complaint of both healthy and chronic patient’s alike. Unfortunately, if your pain or nausea is caused by something other than the usual suspects, especially in conjunction with other non-specific or symptoms, doctor’s can easily write it off as being “in your head”.  

When initial diagnostic tests come back normal and it’s not easily explained by one of the many favorable conditions, then one of two things will happen. Either 1) the doctor will diagnose you with Irritable Bowel Syndrome (IBS) or 2) Determine it’s related to stress or a psychological disorder. No further testing required. In my opinion, using both IBS and stress as a diagnosis is a cop-out and the doctor is being lazy. While I am not saying that IBS does not exist, I feel doctors use it too often without further investigating a differential diagnosis.  For both IBS and stress alike, all kinds of pills and pharmaceutical interventions will be thrown at you, without evidence that you even have any of these conditions. So when the medicine does not work, or has minimal effect, then “you’re just crazy”.

I can’t tell you how many doctor’s, both in general practice, as well as specialty, that have told me to seek psychological intervention. They ran minimal tests, tried every medication on the market to “treat my symptoms”, so then obviously… it must be for attention then. What’s worse is I started to believe them.  Between these doctor’s not believing me, friends and family not understanding (who even to this day can ask me if it’s not all “stress related”), and no reasonable explanation for all the pain I felt every single time I would eat, how could I not think I was crazy? I went to therapy and counseling multiple times. And even when I was deemed “cured” from all the anxiety related diagnoses, the pain only got worse. In fact, after being “panic attack free” for so long, my abdominal symptoms are the worst they have ever been. 

As I mentioned in a previous post, I initially “treated” the pain I would get after eating by simply putting the associated food on my avoid list. But after years of food making me sick, the list of trigger foods became so large, it was easier to have a list of the minimal number of food on a “safe list”. This behavior also brought on associations between foods, as one time I got sick when I had this  and then had that within a few hours, so they “mixed bad”. My friend Stacie would always point out that she had never met anyone who had to think so decisively about they had consumed in a day to determine how it would all come together. Just recently, actually, in a letter she kindly wrote for me on my condition, she stated, ” I have known Nikki for over 4 years, so have gotten to see how her health issues started, and have progressed.  When we first met, Nikki had issues with certain foods and certain drinks and how they would “mix”. ” It’s almost a joke among my close friends because they know there is so much thought that goes into the timing and choice of foods. It’s unfortunately, my coping mechanism, and the only true control I have over my undiagnosed pain.


So let's put this diagnostic scenario together: 
  • She’s a young female at onset of symptoms. 
  • She HATES food. In fact, she says it makes her “sick”.
  • All initial diagnostic test are normal.
  • She has anxiety and IBS. She’s reported psychology treatment.
  • She organizes her food choices into very specific categories.
  • She “restricts” food to have “control” and refuses to eat many times.
  • She has, at many times in her life, been extremely underweight.

And if you haven’t put the pieces together yet,

I was sent to therapy for diagnosis and treatment for anorexia.


In a way, depending on how you look at it, I DO have an eating disorder. And it is definitely being managed inappropriately and I may have some irrational thoughts as far as the extent of my “trigger list” of things I can’t eat, which I rationalize to myself is to not have associated discomfort and symptoms. Also, it is greatly impacting and disrupting my life. However, in determining if this is abnormal or not, essentially it can be weighed to both sides. If doctor’s could offer answers and a diagnosis, then I’d be able to manage and treat my symptoms properly. 

Luckily, or maybe not so luckily at this point, all systems of my body are now being effected by my illness and symptoms have finally become visual and undeniable. It’s easy to write-off subjective symptoms as being overly dramatic or attention-seeking. Hell, I’ve been accused and treated like I was drug seeking, when I have an extremely low tolerance to pain medications. I mean, let’s be real here. I CANNOT EAT FOOD WITHOUT BEING SICK,  I obviously do not want to take any harsh drugs that will only make the nausea and stomach pain worse. I want to feel better!!!!! But now that they can’t deny that something is wrong, I am finally getting the testing I need to figure it out, beyond the initial scope that my earlier doctors refused to consider. It’s been a long fight to get here, more than it should have been, but at least I am on my way in finding a TRUE diagnosis.

Next tests up: