More about my treatment

So before, I mentioned the Diltiazem.   Well, one day last week, the nurse practitioner called me to explain more about the results of the manometry and the medicine.  She also asked if I would be willing to take a course of antibiotics and a probiotic.  Well, I said yes because I'm willing to try anything to get rid of this extreme bloating, gas, cramping, and alternating diarrhea and constipation.   If I do indeed have small intestinal bacterial overgrowth (SIBO), that would explain the flattened villi that was seen a few months ago.

Well anyway, the antibiotic is Xifaxan, and it is non-systemic, which means it doesn't cross into the bloodstream. It pretty much stays working in the intestines.  They also prescribed a probiotic calls Flora-Q.  It has 4 different types of bacteria in it and it is not covered by my insurance.  lol   Between the two of those, I payed over $110 yesterday.  So, I'm kinda hoping they work.

In 6 weeks, I have an appointment with the nurse practitioner to discuss any changes.

And now, you know as much as I do.

After 4 years of suffering...

My esophageal symptoms started soon after I moved here back in fall of 2006.   I didn't have insurance until Spring 2008, and that's when I started seeing doctor after doctor trying to figure out what was causing this pain and inability to swallow.   I've told this story before, but it took several tests, a few doctors, and a ton of medication to get me to my breaking point a few  months ago.

By having one doctor break up with me, I had the opportunity to meet the wonderful staff over at the Gastroenterology Clinic of Acadiana and the Lafayette General Endoscopy Center.  They are truly awesome at what they do.

Well, anyway, I'm mentioning all of this because today after my colonoscopy, the doctor wrote me a rx for diltiazem which is one of the most common medicines (aside from nitrates) that is used for esophageal spasms.  Now, this is one of the same medicines that my previous doctor refused to start me on even though he knew that  I have constant spasms.  His reasoning was that I was too young and that it would make my blood pressure too low.   Well, the medicine is used to lower blood pressure, but I'll be on a lower dose that  what's used to lower bp and honestly, when the quality of someone's life is poor, you have to weight the risks against the benefits and he was unwilling to do so.   My current doctor did not seem at all concerned that my health would be compromised.  He explained that the dosage is low.  I'm to take it before bed everynight for 7 days until my I know how my body will react.  I'm not to jump out of bed at anytime after taking it because if my bp is lowered, I could pass out (and be eaten by my cats).  After a week or so, I can start taking it twice a day.

Now, I have no idea if this medicine will work at all.  But you know what?  I'm more than willing to TRY something that's known to work instead of having someone tell me that it might just go away.  I'm happy as hell right now.  

Yes, this is what my life has come to...medicines make me happy.

And on a sidenote...that colonoscopy prep is horrible.  Easily one of the worst things I've ever done.  I threw up and felt sick for a whole day.   Next time, I will beg for the pills.  4 liters of liquid is a lot to drink.  4 liters of salt water is even worse.  *gag*

The manometry went horribly.

I have never cried during a procedure, nor have I ever stopped a procedure so I could leave, but I came very close to doing both of those things today.

I should have known the day would turn out less than pleasant when I arrived at the facility and realized that I wasn't told where to go.  So I went to my doctor's office, and they directed me to registration...oh, and they also told me that my appointment was at 1pm when my letter clearly stated noon.   Ordinarily, that wouldn't be a big deal to me, but I had been fasting since midnight, and I was already feeling lightheaded and irritable.

So I get up to the GI lab about 45 minutes early, and I clearly hear them state that they won't take me back because there was another appointment before mine, but the guy hadn't even registered yet.  (for some reason, most places only have one person trained in esophageal motility tests...) Just as I started to get pissed about the whole situation, they took me back.

They took my vitals, history, and the nurse began to set up for the procedure...

Now, if you don't know what a manometry entails...lemme brief you...

• Normally, your nostril and throat are numbed to allow passage of the catheter through the nose into the esophagus
• The tube is passed slowly while taking several swallows
• Once it reaches the stomach, several measurements are taken...no swallowing allowed
• The tube is then pulled out until it's pressure reading points are in the right place for the test...no swallowing allowed
• If you're lucky, you'll only have to do 10 wet swallows on command...without swallowing between the commanded swallows
• After 10 good swallows are recorded, they sloooooooooowly pull the tube out to get more measurements

That's pretty much how it's supposed to go, but I did not have that experience today.  I already hate this procedure because I had one last year and it was very unnerving and unpleasant.   Well, at least they numbed me last year...

I had to swallow that damn tube with no local anesthesia.   She gets the tube in.  I lie back and was supposed to take a deep breath in and out.  I do this three times and she says the tube is depressed and must be curling up in my esophagus.   She pulls it out some and tries to reposition it...I take the deep breath again and same results.  I'm told that I will have to go to x-ray to see why it's not going in.  She leaves the room to arrange this and comes back to tell me that the room is occupied and that there is something urgent happening that she's needed for.   She asked if I wanted her to remove the tube.  Ummm...yes, please.    She's out of the room for what felt like an hour.  I don't really know how long it was, I just know that I was relieved.  

I almost cried when she came back into the room.  Now, at this point, she tells me that if she can't get it down and x-ray doesn't help her guide it, that the doctor will have to do it at a later date.  UGH.   We try it for a third time, and she says it's still curled.   She and I have to walk down the hall to the fluoroscopy lab...her holding the tube that's still in me...double UGH...

The radiology techs get there and we find out that the tube is actually in my stomach.  WTF.  10cm of it was curled up in my stomach...not my esophagus...she said that normally she can feed the tube in 60cm...for me, it was 50.   wtf ever.    

Let me add that having the catheter in is very uncomfortable.  You can feel it the whole time.  Swallowing was painful and frequent due to the excess saliva caused by having a foreign object down my throat.  My nostril was on fire and hurting and I could taste blood.   My esophagus spasms frequently so the tube occasionally moved due to my body trying to ingest it lol...*cries*

We finally get to the measurement part of the test and you are not allowed to swallow.  This is very difficult because your mouth WILL fill up with so much saliva that you will either swallow, vomit, or choke on it.  I must have swallowed 5 times...and never swallowed the saliva...it was just the reflex.  

The 10 swallows wasn't too bad.  She was able to see that I continue to have contractions long after the initial swallow.  We did two or three extra swallows and that was that.   Now, I wasn't prepared for what she told me next.  She said that she would pull the tube out slowly (understatement) and once the sensors were placed at the upper esophageal sphincter, I would have to take 3 more swallows.  UMMM.....

She pulled that tube out cm by cm...and once she got towards the end, it was half cm.  I almost freaked out.  The bottom of the catheter tube is metal and plastic sensors and it's rigid.   I actually groaned and gagged at that point and she begged me to stop swallowing because it was important.  Yeah, ok....like I'm trying to be difficult...I'm pretty sure my body doesn't want to vomit and it's trying to swallow the tube to prevent that...but whatever...I try to go to my happy place but that shit doesn't work and I start to squirm and shake...next thing I know she's giving the the water for the 3 swallows and she pulls that tube out.    

Lawd I was so happy.  She kept offering me something to drink.  I just wanted to go home.   I almost ran outta that place.  And I had a banana waiting in the car for my hunger.  

When I got home, I was so traumatized.  I had to sleep.  I woke up to a sore nose and throat.  Now, I can't breath out of that nostril...oh, and did I mention I have chronic sinusitis?   Not happy.  But it is over.  And I won't lie when I say this, I will refuse this test in the future...especially if they won't numb the nostril or if the facility doesn't have newer equipment.  

The test is already very unpleasant.  There's no need to make it worse.

And just like that, the spasms/pain is back.

This might be a temporary thing, but I know that I have been awakened in the middle of the night and sweating during the day, trying to quell the pain...unfortunately, there's not really anything I can do.   If taking a sip of water or some other liquid doesn't work, then I'm pretty much screwed and just have to deal with it....(everytime I say "deal with it," I'm reminded of that little girl, Taylor,  on the show Kid Nation who always said it.)

Anyhoo, this is one of those scenarios where I really don't want to be in pain, but it's probably best if I continue having symptoms when I go in for testing next week...but if the pain were to go away, I wouldn't be sad about it...*hint* to my esophagus...

It's Not a Tumor

A few days ago, the Nurse Prac called me at 6pm to let me know the results of the CT scan I had a week and a half ago.  (yes, she really called me after hours.)

There was no thymoma (tumor on the thymus), but something abnormal was found going on with my esophagus (lol duh) so I'm being sent to have a esophageal motility test...also called a manometry.  I had one of these 2 years ago, and I will say that it is pretty painless, but very uncomfortable.

They stick this long catheter tube down your nose into your stomach.  The one I had done before consisted of 10 wet swallows...I ended up having to do way more because the tech said that I kept swallowing when I shouldn't have.   I wasn't swallowing on purpose...the spasms were causing the tube to jerk...even almost ripping the tape holding it in place off my nose...it was quite involuntary.

Anyway, I had only one normal swallow.

I'm wondering if maybe my esophagus was dilated or tapered at the end, suggesting achalasia.  She seemed to be choosing her words very carefully when she called me...probably as to not scare me...but she never said exactly what was seen on the scan...

My swallowing has gotten worse...I didn't think it was possible...and I just got dilated less than two weeks ago.  I actually had a piece of chicken almost come out of my nose...and while trying to take a pill two nights ago, my throat seized up and wouldnt let anything down and the water and pill got propelled out of my mouth onto my bed.  *sigh*

So I have a manometry one week and the colonoscopy the next.  yay...or not.

Changes changes changes

I got a call from the GI doc's office on my way to work informing me that they had canceled my appointment with the oncologist because they will just monitor me at this point since everything had cleared up on the endoscopy....ummm okay...

This worries me a little bit considering I have felt a lot sicker and been in a lot more pain recently. I can't remember the last pain-free day I had. And the fact that my T-cell count was quite high on my blood work is alarming to me.

I'm not going to worry about it. I'm actually tired of it at this point.

I guess I still have the CT scan next week since I'm still not able to swallow very well.

*screams*

Oh...and no one in the medical profession should ever be allowed to tell a patient that they are too young for something. The last two times that I checked into the clinic, the nurse would get to the question about joint replacement and laugh while saying I'm way too young to have that problem...I hate her...it is very rude and inconsiderate...especially given my circumstances...

Anyway...that's one less trip I have to make to that side of town next week.

Yay.

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EGD went well.

The candidiasis cleared up completely (visually).  I hope it doesn't come back.
I couldn't believe the pics.  My mucosa was normal and pink.   He didn't mention anything about the gastritis, ulcers, and watermelon stomach, but I have to assume I'm healing or that it's not worse.   I did have a polyp in my stomach...they removed it.  I did read that those could be caused by PPI use...usually longterm though...and mine wasn't in the place that those usually occur.  Who knows?  I guess they'll biopsy it.  They took samples from my esophagus and duodenum again.  AND I had to be dilated.   I don't know if I had any narrowing but it's still very difficult for me to get most things down...and that's including liquids and solids.

And let me tell you, I love Propofol.  I really do.  It works FAST and it doesn't really leave you groggy.  Although, I had heard that it can be very painful going in, I didn't have that problem the first time I received it, but this time?! OMG.  I wanted to slap somebody but I only was awake for 10 seconds after I felt the pain so it didn't matter.

*sigh*

Only thing I hate about EGDs is being achy afterwards.