Thursday I will be prepping for Friday, with no dinner and a trip to Indiana. Friday I will be too busy to post, I’ll be having that Double Balloon procedure I have mentioned a few times before, so this week’s post is coming to you early, and it is chaos filled as usual. (See IU Double Balloon and Happy with My Crohn’s Disease)
To begin this week, we have to go back in time a little. If you think I vent about the VA Healthcare systems enough already, then get this:
Right before we moved from Ohio to Kentucky last year, my GI doctors in Cincinnati had requested that I go to the ER and get a CT scan whenever I felt abdominal tenderness, to see if there would be any visuals of active Crohn’s disease. I tend to get a lot of abdominal tenderness, and when I say tender I mean TENDER. It usually radiates across my entire abdomen, I can feel it in my ribs and back. To barely touch my skin hurt. (See My Crohn’s Journey)
So, a year ago I made my first VA ER visit in Lexington. On July 27, 2015, to be exact. They gave me the usual saline fluids and oral prep for a CT scan, this one with an IV contrast to boost. The results? Ovarian Cysts on my ovaries and my accessory spleen, my Frankie. (Yes, I have 2 spleens floating around in there! 10% of the population has an extra! I named it Frankie because IHeartGuts did a Halloween special with the accessory spleen plush, and I love the name! Frankenspleen!)
Skip ahead to September 14, 2015, and I received my first Transvaginal Ultrasound to look for these cysts, which came back null. No cysts, just a retroverted uterus, in addition to Frankie. So, we let it go and chalked the pain up to being another issue caused by my Crohn’s. I had forgotten all about it until this week.
Now, on June 24, 2016, just a few weeks ago, I had to get a second Transvaginal Ultrasound, to help with our fertility journey, to make sure I was okay to conceive. The results? No cysts or tumors, and a pap smear that came out fine and dandy. I was a perfect bill of health with perfect follicles. (See Scheduling, Scans, Samples and Pill Cam)
If we skip ahead, I spent 8 hours this past Monday (Aug 15) and part of Tuesday morning at the Lexington VA, trying to figure out why I have been throwing up every meal for the past 10 days (and growing). I had kept down water until then, but the food wasn’t staying down at all. I was very irritable and I have felt worse every day. Even today, I am still throwing up meals.
Come Monday morning, even water and my beloved coffee was being thrown up, too, so a trip to the ER was due, even if they just gave me fluids. Worst case scenario it would be Crohn’s related, but we would see what the ER said anyway. I always have left sided pain in my tummy, so I never know if it is Crohn’s related. It felt appropriate to wear my Cure for IBD shirt to the ER. 🙂
We spent 2 ½ hours in the triage waiting area until we were finally given Room 3 in the ER. I was weighed and given an outpatient medical bracelet. (Yay for another bracelet to add to my collection!) Then we had to wait another half hour to even get things started. I have to note that the nurse didn’t know how to spell Crohn’s and that always bothers me!
Side note: I weighed 10 pounds less than I did the last time I had been weighed at the VA. July 15 I weighed 120.1 pounds and now I weigh 110 pounds. I’ve been told I look ‘great’, but this was not intentional. I blame the 10 days of puking…
When we first got back into the room, as always, I had to repeat my story of what is happening over and over (and over) again to nurses and doctors: Crohn’s, scopes, capsules, fistula’s, etc. Then, they ordered every test imaginable on my blood, even some I didn’t recognize, like cultures for bacteria in little bottles that looked like mini liquor bottles.
I got three needle pricks in the process, one in each arm and one in my left hand. That one really hurt. Now, to add to everything else, I have slight irritation where I’m allergic to the medical tape, and I’m bruised like crazy. Go figure. I am not looking forward to getting another IV on Friday.
I was given the Saline drip, a Zofran (Ondansetron) drip, and a Protonix (Pantoprazole) drip. The Saline would help my dehydration, the Protonix helped my stomach inflammation, and the Zofran helped my nausea and vomiting. But man, I did feel slightly worse afterwards, with even more bowel issues. This was beginning to be a long night already.
We waited for the blood results to return for over an hour, and I was given the dreaded pregnancy test. I always assure the nurse I KNOW it will be negative, like 99.999% sure, but they have to test either way. I get it, but I still hate doing it. Can I still be hopeful for a positive? I usually keep that in the back of my mind until someone bursts that bubble.
Once that was done and the test proved negative, the CT scan was ordered and I was given the CT Prep cocktail – Gastrografin.
The CT Scan prep was much worse than my first one, but it was not going to leave me feeling like I had peed on myself, and it was a ‘quicker’ cocktail so that it would target the area of my Crohn’s inflammation – my small intestine.
We had to wait another hour just for the prep to go to the location they wanted, so it was already almost midnight before the scan was even done. The results? They came almost 2 hours later – I have an Ovarian Cyst on my left ovary, 1.5cm. These were the same results as last year’s dismissed CT scan and ultrasound.
Now, you can imagine my frustration after already having been through this, and after having a Transvaginal Ultrasound not 2 months ago. 8 hours in the VA for a cyst and nothing else? I pretty much argued with the ER nurse, telling her that could not be correct, because I JUST had this looked at, and I had literally had this same situation happen exactly a year ago. She assured me that I had a 1.5cm cyst on my ovary, and it ‘could be’ causing me pain.
The reason I haven’t kept food down is still a mystery, but she told me it ‘could be a virus’. But, luckily, there was no bowel obstruction or narrowing that they could see in the scan. But still, the differential diagnoses are throwing me off and stressing me out significantly.
I took out the needles in my arm myself and we were discharged around 1:30A.M. Then, we headed home. We stopped to get food, but the only thing open at the time was Taco Bell – HUUUUGE mistake. I threw that up too. Go figure.
Tuesday, I spent the morning and afternoon calling my fertility doctor, calling the VA and calling Georgetown Hospital, where I had both of the ultrasounds done. I called each trying to figure out whether I have the cysts or I don’t, and what is the miscommunication between them all. I left messages everywhere I could and requested return calls from everyone.
Georgetown would not tell me anything because I have to sign a waiver to release the information every time I want information. I have done this once, so I should not have to repeat the form every visit. They informed me I could have my doctors request them, to which I told the lady on the phone that the VA already had requested them because they are the reason I even had this procedure done. Duh, lady. So they were no help at all.
After I had called Georgetown, my Primary Care Nurse, Laney, called me back with what she knew. She read me word for word what the results from Georgetown had said, no mention of the cysts. Because this was the second time I had had this occur, she thought I possibly had cysts irritating me every month, and by the time I get the CT scan, and then the ultrasound, that they were rupturing in between, but who knows.
I have 2 primary care physicians and one of them, Dr. H, had suggested taking birth control to dissolve the cyst and possibly keep it away. I told this to Laney, to suggest to Dr. C, my primary care physician with the VA, and she said she would notify me when she could, and we would figure out a plan.
She gave me a follow-up call later that afternoon and Dr. C had agreed with Dr. H, that birth control could dissolve the cyst, and we could see if a couple of rounds of birth control would do the cyst any good. We agreed that she would fill a prescription for me, and I would use that for 2 months, and then I can see the GYN if necessary.
She put in a few notes for my GI doctor, Dr. B, to call me about Monday’s ER visit, too, but they have yet to return any notes or messages I have left this week. Kind of strange.
Side note: Both my primary care doctor and the GI doctor’s first names are Joanna – Dr. Joanna C. and Dr. Joanna B. This makes for even more confusion when trying to get a referral or appointment with the right one.
And not 30 seconds after I hung up with Laney, my fertility doctor, Dr. A, was returning my call. She had heard that I was upset, well yeah, and she wanted to let me know that my cyst was considered normal and functioning to her.
So, the cyst does exist, and I think I’ll name her Myrtle. Dr. A told me that Georgetown had never mentioned the cysts in either ultrasound because my cyst size was considered normal and unimportant….
So, now are you confused? Okay, I was, too.
But wait, the story gets even more confusing and irritating when we get to the treatment plan…
The cyst was not an issue in Dr. A’s eyes, and she did not suggest taking birth control because it could potentially worsen my migraines and could affect our fertility plan.
I told Dr. A to call Dr. C, and for them to hash this out themselves, that they were only confusing me and making my stress worse, and that she could call me back with a plan.
So….do I take the birth control or not? Is the cyst an issue or not? Who knows. I never received a return call yesterday from anyone.
Our plan, I guess, is to just continue with the Double Balloon at Indiana U on Friday and worry about Myrtle later.
I will see Occupational Therapy MSK for my carpal tunnel and corticosteroid shots in my hands on that following Monday. Then, I will meet my new GI doctor, Dr. Wolf, on Thursday, where I will physically beg for medication to help my Crohn’s issues if I have to.
This is exhausting and getting answers is very difficult in my specific case. Not only do I have one stomach issue, my Crohn’s, but I have multiple things going on in there, like Myrtle and Frankie.
My body likes to make treatment more difficult and exciting I suppose.
The idea is, if I can help my stomach pain with Crohn’s medication, then we know the problem and the pain is related to my Crohn’s issues. If there is still pain and issues after I get treatment, then we will know my Crohn’s is under control (hopefully) and it would possibly be the cyst causing some irritation.
We shall see what happens. I’ll keep you updated on what happens with the Double Balloon and everything else.
But, It Could Be Worse.
** Already an Update: GI finally called me back, and now instead of Thursday with Dr. Wolf, a student, I will have an appointment with Dr. S, a higher person in the GI office, on Tuesday. I will have to make sure the IU crew hand writes a note for my GI appointment because we know that the biopsies won’t be back in time. GI’s Joanna told me that if I got a note with some sort of information, we can start treatment! Yay!!
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