This week, I had an appointment with my GI clinic, to follow up about my 90 day trial with the Budesonide, to see if my issues have gone into ‘remission’.
Yesterday was my last day on that medication, thank goodness, because it was a waste of time. I am really mad at myself for even considering this medication, because, after a year, it will be as if I never took it. I spent this week, Sunday, Monday, Tuesday and yesterday, nauseated, vomiting, with stomach cramps. I highly doubt that I am in ‘remission’.
For my follow up, I did not get scheduled with my ‘normal doctor’, Dr. B. Dr. B has his own job and his own clinic outside the VA, so he was not offering any VA clinic’s this month, and possibly none in July, either. I also refused to see Dr. Salas, as he was the rude doctor who told me I was not ‘high priority for him’, so I definitely wanted to avoid him.
Instead, I was placed with “attending #7”, Dr. Rice, who was a completely new doctor I have never met with before. Do you know what new doctor’s mean? It means I get to go back and discuss the last 2 years of my issues. I have to go to the beginning, when my issues started and try to remember everything that has happened, what tests have been done, what hasn’t been done, and when the latest tests were taken and how current my labs were – Good thing for him, I keep all of that information! I have it memorized like a list:
3 Colonoscopies, 2 Endoscopies, a Perianal abscess that led to surgery. That surgery led to another surgery, a Fistulotomy, one Capsule Enteroscopy, one Ganglioneuroma, one extra Spleen, a Meckel’s scan…and just like that, I think I’ve covered the last 2 years of my life. (See My Crohn’s Journey)
It does get irritating having to explain to nurses and re-explain to doctors, and then further explain again when they bring even more new doctors into the room. Yesterday, I had 3 minds working towards fixing my issues. Maybe they should read my blog for insight.
But, we have to discuss the past 2 week’s events, since I focused on another topic last week (- See End Rape Culture):
On Monday, we had Semen Analysis #2 and we received the results on Thursday afternoon – it was quick because I immediately notified his doctors that we wanted results ASAP! Dr. M, Philip’s doctor, told us that his sample had only gotten worse. Instead of 95% having major structural defects, sample #2 proved 99% had major structural defects. We still have that 1% ‘normal’, so it could be worse. We have the Ovidrel in the refrigerator and the Clomid with my other prescriptions…now we wait. (See The Waiting Game)
On Wednesday, I received information about my 3 day testing (that was actually done on day 4) from 2 weeks ago, which showed that I am ‘perfectly normal’, according to Dr. A. She told me that my egg reserve looked fine and that my hormones looked good overall, that something needed to be 1-3, and mine was 4, but I don’t know what she meant, I haven’t seen the results. Lucky us! We don’t have a female factor in infertility, after all! (See So You’re Sayin’ There’s A Chance)
It has been 3 weeks, to the day, since my Occupational Therapy consult. I received a MASSIVE paraffin machine that would rival most salons’ paraffin treatments.
I still have not received my ‘day braces’, because, get this, they don’t make my size, x-small, anymore. The store that my braces were ordered at, they also never thought to mention it to the VA that my order was no longer available. After waiting for them to arrive for 2 weeks, I had to check in on things myself, calling every day until I spoke with someone other than telephone-care. Using the paraffin without the braces is useless, and wearing only the night braces does me no good during the day.
New braces had to be re-ordered through the VA system, and that can take 5-7 days to be approved, and then the new order, size small, will be sent to wherever ships the braces, and then I should receive them eventually. By the time I receive them, it will be time for my MSK consult or Musculoskeletal, and I’ll have to get the cortisone injection in both of my hands. I wonder how bad that hurts.
My Trans-Vaginal Ultrasound that was ‘bounced back’ for a second approval, is now a ‘Go’. The approval was placed just this past Monday, so I am looking forward to that appointment next Friday afternoon. (I’m really hoping you can read my sarcasm.)
Before the appointment even started, I tried to wash and dry my hands at the VA, but the paper towel machine wasn’t working. It was one of those with the motion sensor, the ones you’re not really supposed to pull the paper out of, but we do anyway? Well, I tried that and ended up pulling hard, and ripping what little paper was there, and my wrists went down to meet with the metal basket below. My wrists hit directly below that bony part, which I’m sure is going to leave a bruise. Go figure, more wrist pain!
Now, for Dr. Rice. Considering my issues have not been helped with the Budesonide, and considering the only scopes to show irritation and ulceration’s is the pill-cam, and considering some of my tests were “old”, I get to repeat a few things, as Dr. Rice requested. Before being put on stronger medications, they have to check and double check my issues.
The best part? Mary gets another Capsule Enteroscopy to add to my list! Which is just great, considering I was really stressing about it getting ‘stuck’ last time, and I know it got stuck in a friend of mine.
Dr. Rice asked that this capsule is done before my consult with Indiana University and the Double Balloon, to see if the ulceration’s and erosion’s look any better from the Budesonide treatment, and to see if the capsule can rule out that damn Meckel’s diverticulum once and for all. My ‘irritation’ is systemic of small bowel Crohn’s, but it is also in an odd place, to where the Meckel’s could still exist, too.
This means that I get to do the capsule anytime in the next 3 weeks, so I get to look forward to another day and night of no food, and carrying around that fanny pack camera monitor all day. Yay!
I was sent to the blood lab after meeting with him, and we planned for another follow up after the capsule and consult with IU, with no real Crohn’s treatment plan, no medication plan, nada. Just more testing.
Yesterday, we did multiple blood tests, like repeat CBC tests, with CRP and ESR to test inflammation markers. We did Liver Function tests and Electrolyte panels. We also tested my B-12, and we are checking for Giardia and all that jazz, again. I think they ran at least 11 blood tests?
And the nurse who drew my blood, I almost went off on her. She put the initial needle in my arm, and I knew it didn’t feel right. I have had so many blood tests, usually, I watch them insert the needle, and it never hurts. Until today. She was holding the needle in an odd direction, almost tilted too far. I told her it was uncomfortable, and she said: “Can you make it until I get the rest of the samples?”. So I tell her Yes, considering the needle is already in my vein – I wanted to avoid getting pricked twice. She moved the needle in my arm, I assume to make it more comfortable, but this only made it worse.
I told her that it was like, REALLY hurting now, and she asks me “Is it hurting like a needle is on your arm?” – in her most sarcastic tone. I told her that I understood that there was a needle in my arm, but usually, there is not this much pain, not unless they are blowing out my vein or doing something wrong. By this time, she had taken all of my samples, and I rushed out of her lab. It was around 4:15, and all of the lab nurses were in a rush to leave; they even closed their doors after I arrived, to avoid further ‘work’ for the last 15 minutes of the day. It was as if I was putting them out to draw my blood.
And now, as I am writing this, the doorbell rings, and my new braces have arrived. They are Bengal’s colored, so at least that’s a positive. It took me a little while to figure out how to put them on, and how to get them comfortable.
Dr. Rice gave me a new ‘hat’ and sample cups so that I can ‘renew’ all of my testings and to see if there is anything that will show this time. I’m to make sure that at least one sample is liquid, funny enough. I will have to drop off my samples next week. I have 2 samples done, 2 to go.
I spent the evening feeling sick to my stomach, with my plans ruined. We had intended on seeing a movie, but after dinner, by the time we got to the theater, I was throwing up and feeling miserable. I could blame Applebee’s or car-sickness, but I could also blame my Crohn’s.
And here’s my before and after. Not pictured: the Kroger grocery bag of my vomit. It’s crazy how much my mood and stomach can change in a matter of hours. It’s crazy what outsiders see, versus what my family sees. This was probably only the second time this week that I was out of pajamas or even bothered to do my face. Of course, I’d end up feeling bad, that’s just my bad luck.
I was really hoping the doctor would just prescribe me with Remicade already, or some sort of Biologic, to fix my issues. This feeling bad, fatigue, night sweats, headaches, skin sores, joint pain, vomiting, stomach cramps, and overall bowel ISSUES, are the worst.
I suppose the plan of action is more waiting, per usual.
But, It Could Be Worse. Thank’s to everyone who is reading!
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