pH Probe Test - Mayo Visit Day 1

Well, I went to Mayo this morning and had the pH probe test done. I sat down and the nurse explained the test to me. The probe will test my vomit for bile, stomach acid, regurgitation, etc. This test will help the doctor determine how best to treat me. She had me sit facing her while she inserted the small catheter into my nose, down my throat, and into my stomach. She didn't use any numbing agents or anything before she put the catheter in. My eyes watered like crazy and she gave me water to sip on while she was inserting the catheter, to make it easier for me not to gag.

Once the catheter was in, the nurse secured it with tape. However, I do not believe it's secured that well because the tube tends to move in and out of my nose with every bump in the car, swallow, or movement. It's going to take some getting used to.



Illustration of where the pH Probe goes.


The nurse told me that I needed to take in three meals to ensure an accurate test. I'm not able to eat that much on the best of days, so this is going to be a real challenge for me.

She gave me a receiver that I have to wear, much like the Bravo Test that I had before. The receiver has three buttons that I need to press when I take my Aciphex, if I have heartburn, and if I experience regurgitation. I have to press another button when I eat and when I finish eating as well as when I lay down or up and about. The catheter is attached to this receiver, so I can't leave it on the bed or anything. I MUST carry it with me.



The receiver I have to carry with me.


So, I will wear the pH probe until tomorrow morning. I've got to eat in the morning, which will be difficult because that's when I'm the most sick. The nurse said she'd take it out before I see the doctor in the morning for the results.

My nose is really irritated and I keep sneezing. The tube keeps gagging me but other than that, it's not to bad. I prefer the Bravo Test though.



My pH probe!

Sunday Night - Before all of the Testing at Mayo Begins

G-PACT wrote something today that I thought was worth putting into my blog:

"We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are.

You don’t owe it to your friends to be the “strong” one. Just because you have always been the good listener and the shoulder to cry on, doesn’t mean you have to maintain that role now when you need a good listener and a shoulder to cry on.

Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“

Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain.

They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next.”

To ask for help is strength.

To admit you don’t know is strength.

To tell the truth about what’s happening is strength.

To be imperfect and to trust that imperfect people will love you despite those imperfections (albeit imperfectly) is strength.

To let the people you love see how you really feel – without trying to hide or stage manage their perception of you – is strength."

--The lie of strength, Captain Awkward

The link can be found HERE.



I want to ask all of my friends to please be patient with me in the next few weeks. I'm going through an entire week of testing at Mayo this week and I'm really nervous. I feel so awful that I wouldn't be surprised if I cried a lot more than usual. All of these procedures may leave me broken and exhausted by Friday. I can't eat after 6pm and I can't have anymore water after midnight, tonight.

Tomorrow, I report bright and early at Mayo at 6:30am for them to draw my blood to check my CORTISOL LEVELS.

At 6:40am, they are drawing more blood to do a complete panel. Thyroid, CBC, and other tests.

At 7:45am, I report for my barium swallow x-ray. Please keep your fingers crossed for me. I almost always throw up the barium. If I can't keep it down, I'm not sure they can do the test.

Tuesday, I get to go through another gastric emptying test. I'm not looking forward to that either. If I vomit up any of the eggs and toast, I will have to do the test all over again. They're going to take x-rays every 30 minutes for 4 hours. Last time I had this done, it hurt so badly.

Oh! And I'm going to take a picture of each Mayo building and review my procedures as well. I want to help ease anxiety of those who may be heading here later.

I love the hotel room. It's absolutely beautiful. It's a lot cheaper than the hotel we stayed at previously. We're staying in The Hampton Inn off of the mainland, closer to the Jacksonville beaches. Here are some pictures:

My Appt with the Mayo Clinic in Florida & Updates

It's been a few days so I'll catch you up on what's been going on.

The Nature Sleeping Aid actually worked for me and helped me sleep. The preggie pops and tummy drops are also helping to curb the nausea along with my medication. I'm still vomiting, but it's not as bad as it could be. The Quease Ease is amazing. It really does help when I inhale it. I've gotten some wonderful advice from the Gastroparesis Facebook group at: www.facebook.com/greensnoteasy.

I have a severe headache right now that I'm pretty sure is from dehydration. The headache is located at the top right part of my head above my forehead. It just aches. I drank an entire bottle of grape juice over the course of the past few days and I'm working on apple juice right now. I'm not sure if it's going to stay down. I even tried a little bit of caffeine to make sure that it wasn't caffeine related. Nothing is helping. I don't think it's a side effect of my medication but I guess the doctors at Mayo will know more and what to do about it when I get down there.

My doctor finally faxed my records down to the Mayo Clinic in Florida and they were able to fit me in on Monday because of a cancellation. My husband and I are driving down there tomorrow. We reserved a hotel room but I don't know if they are going to hospitalize me or not.

I wasn't able to sleep 1/8 - 1/9/13. I was up for two days straight because of stomach spasms and running to the bathroom. I also managed to pull a muscle in my abdomen while I was vomiting. It almost feels like I have a charlie horse in my side. The pain in my upper right side is still there, by my liver. I've had this pain on and off since March. The ERCP helped for a while, but it's back with a vengeance now. The surgical incision in my back that is still healing from the spinal cord stimulator is also really sore because I've been bending over my bucket and the toilet to get sick.

I've just been incredibly tired and weak. It takes everything I have to make it to the bathroom. I can't even take a shower by myself at this point because it takes too much energy to stand up. I've been a bit lonely too. I've noticed my patience has been pretty much non existent because I keep vomiting, having muscles spasms in my stomach, and not enough rest.

I haven't been the least bit hungry so I haven't been eating a whole lot. I have kept a daily planner for the past month detailing the times that I get sick, what I eat and when, and when the spasms start. I'm giving it to my doctor on Monday at my appointment. I've also been keeping a detailed journal and I've been using River Song's TARDIS journal to do so.

My stomach is incredibly swollen and everything I've tried to eat has either come back up or it's just sitting in my stomach. Nothing is moving downwards. It almost looks like I'm pregnant and it's pretty painful. The cats can't even touch my stomach without me yowling. I managed to sleep through my husband's birthday dinner because I felt so lousy. When I woke up to realize they went without me, it made me feel even worse.

I just ate some yogurt and I'm waiting for the stomach spasms to start. It usually starts about twenty minutes after I eat something. I also have a problem that's relatively new - when I take my pills or try to eat something, it feels like it gets stuck in my esophagus. I have to drink a lot to get it unstuck to go down into my stomach. I wonder if it's because my esophagus is swollen or damaged from all of the burning stomach acid I've vomited up. I'll have to remember to ask the doctor about that. I know a while ago, I had my esophagus stretched out by a GI doctor to make it wider so this problem wouldn't happen again, but that was years ago.

Oh, and I listed my medications out so that I would remember to tell the doctor what all I'm taking. I'm taking TWELVE different medications and most of them are for my stomach. It's hard though, because the pills don't always stay down. I have really bad anxiety but the medication usually comes back up so lately I've been having panic attacks. I haven't had those in quite a while.

I am really proud to say that the Gastroparesis page on Facebook that I help to admin is the third largest GP page on Facebook. That makes me really proud to be a part of it.