Since my last post, Goodbye 2017, Hello 2018, posted around two weeks ago, like always, a lot has seemed to happen.
I’ve been sick.
I’ve called off work but I’ve also worked my ass off.
I’ve had snow days and freezing nights.
I’ve seen doctors. And more doctors. And more doctors.
People in my life have passed but I’ve also celebrated life.
I’ve had blood work and x-rays with pains in between.
Let me catch you up…
Since January 5th, I’ve somehow managed to almost work full time every week and feel bad from my Crohn’s. This past week was brutal, I think my body knew it was infusion week but I’ll get to that.
At the beginning of the month, I did meet my hand surgeon, Dr. R, and we discussed the plan to remove my ganglion cyst that we aspirated not long ago – Seeing All of The Doctors.
I keep telling my doctors that we only made it mad with aspiration. It came back immediately and so I think we pissed it off. The plan for my left hand is to go in at the end of the month and have the ganglion removed. I was shocked they could see me so soon!
I was given five packages of Chlorhexidine sponges to use before the surgery. Some for my hand and some for all over. This is to help remove any bacteria before surgery and to prevent infection after surgery.
I’ll go in super early for the surgery, check in is at 6am. I’ll be under “twilight” sedation, similar to the sedation for getting out your wisdom teeth apparently. I have to have a driver to take me home, either way. I almost wish I was alert for the surgery so that I could get pictures of the procedure.
I was told that I would need a splint-cast for two weeks following the surgery and to be careful with my left hand and thumb use. I’ll have the cast removed and I’ll have the stitches taken out after the two weeks. There’s a small chance the cyst and sac could return but it could help give my left-hand significant relief.
Since my scope was done and it was infusion week, I had called the VA to see which medication I would be getting. We were unsure if I would get Entyvio or make the switch to Stelara. The colonoscopy doctor had suggested Stelara over trying Remicade, again, since it didn’t help the first time.
The VA had called me back the night before the appointment day and asked that I come in to see Dr. S.
Thursday, I met with my GI, Dr. S, twice. She was doing scopes all morning, so I met her in the endoscopy suite, in the exact room where my colonoscopy was done last month. We talked about the Entyvio and how my Crohn’s Disease symptoms never just go away. It happens daily, pain and urgency, bleeding and nausea.
My lower belly and left side of my stomach have been extra sore, I can feel the insides not being friendly. I’ve been tender all over, with more ‘eggshell days’ as I call them. It is good that I will meet with Rheumatology soon so I can discuss the pain.
I did mention to Dr. S that I have one spot on one rib on my left side that continues to swell and then go down, it feels sore and tender to touch, and it is always in this one location. It has been happening for a while but these things get put on the back burner when there are a million other things you are trying to manage and control at any given time. I don’t think I can even begin to share all of the problems that are still happening and that we haven’t gotten under control.
I could roughly paraphrase the issues I think?
Still Working On:
• Of course, my Crohn’s disease. I still take Prednisone and Imuran, and the Entyvio, for now.
• I do have Cyclobenzaprine if needed for stomach spasms and other pain meds if another abscess develops overnight again.
• Ovarian Cysts, or Myrtle the cyst, who likes to burst and cause pain at random.
• Nerve pain in my right breast, which I take Gabapentin a few times a day for but I don’t know the cause.
• Allodynia and all over body pain and tenderness like I’m bruised all over.
Perhaps Under Control:
• Migraines. It took a few years but with 4 daily Nortriptyline and Imitrex as needed we have stopped weekly occurrences.
• Skin problems. Although we think this may be due to a Crohn’s flare, I have not had a break out like usual in a few weeks. Knock on wood.
• My hands, but we are working on them.
• Insomnia. I take Mirtazapine and Melatonin nightly for this.
• Anxiety and Depression. I take a daily Lexapro to help my mental health.
• I take Doxycycline for eye styes and cold infections, with Acyclovir daily for cold sores.
• I take Promethazine and Benadryl as needed for nausea and for infusions.
I think that’s all of them?
Anyway, Dr. S had no explanations for the rib, but she said to mention it to Primary Care and Rheumatology. She said she couldn’t pinpoint the issue to being Crohn’s related but us Crohnie’s do have a lot of different symptoms.
She ordered blood tests and said she wanted an MRI done on my stomach. It has been a while since my last scan, so another can be helpful to see disease progression or remission.
I’ll have to get the MRI through the Veterans Choice Program, which means that I could be waiting a few days or a few weeks. I’ll have the scan done at Georgetown hospital, where I had my hand MRI done last year.
After getting blood drawn, I was to meet her in the GI clinic, her scopes were done for the day. I didn’t technically have an appointment but she managed to see me anyway. I spent all day at the VA.
When I left, we still didn’t know which medication I would be getting in the morning.
That night had a visitation to attend for a dear friend of mine who passed, I called him Papaw. That morning we had a grandmother of the family pass away, too. It was a sad day in itself but we tried to celebrate life and think about the ones who are gone.
Friday, I was back at the VA. I had an Entyvio infusion.
This one was my 6th and final. The infusion nurse told me that when she spoke to the GI case manager, that I would get Stelara for my next infusion, the day before St. Paddy’s day. I’m hoping the medication sits well and that I react well so that I can celebrate the wearing o’ the green! That will also be my 2 year diagnosis anniversary.
The nurse got me hooked up with my IV and got my premeds going. I was grateful for the anti-nausea medication because I had forgotten my Promethazine! And today, I was extremely nauseated all day.
I did have Benadryl and Imitrex in my infusion kit I bring, with a blanket and headphones, and of course, my Harry Asshole (stuffed rectum plush).
I sat with the radio on my phone and listened to my favorite local channel while I wrote this and filled in appointments and events in my planner.
The Entyvio begins and before you know it, the time has flown by and the machine is beeping and the line just needs to be flushed with the last bit of medication and you’re finished.
Once I finished the Entyvio, I had a few hours to kill before my next appointment with MSK.
With Stelara, Ustekinumab, you begin with one long infusion a then follow with injections every eight weeks. Since I’ve stabbed myself with Humira, I’ll be okay to do it at home.
I went home and let out baby Bilbo and then drove back to the VA. The help desk people right at the entrance are even beginning to recognize me and my green hair because I am there so often.
I met with MSK, but not with my usual doctor. I only met with a student (?) today, who went through my hand history. I explained that I had fallen in 2016 and they’ve been messed up ever since. With the x-rays showing widening and the ganglion cyst, and the surgery planned, my left hand was good to go and we could focus on the right.
My right, it has similar problems without the cyst. My thumb area gets sharp pains with use and sometimes the joint swells a tad. Using my hands to lift a sheet pan or something out of the oven is terribly painful! But she did say I don’t have De Quervain’s.
So this doctor discussed my extensive chart with her boss and they ordered up a hand x-ray for my right hand, and an MRI would be necessary, too.
I have had steroids and x-rays for both hands, but only an MRI for the left. The MSK doctor was afraid there is a possible fracture that was missed with the last check up on this hand and she apologized for one hand taking prevalence over the other. I assured her that it was okay that my left hand was a high priority considering the cyst is only getting bigger and more inflamed.
I went and had x-rays on my right hand, with the x-ray person telling me that she couldn’t tell if I had a small fracture or not, so the MRI was a good idea.
This makes two needed MRIs, which will both probably happen in Georgetown. I wonder if they can just scan my entire upper body, one MRI for stomach and hand as a duo? I’ll at least ask.
Now, all I have scheduled is five more appointments so far for this year.
I’ll see Primary Care, it is time for my yearly check-in.
I’ll see the surgeon for my cyst removal. I will get the cast and stitches then.
I’ll meet with rheumatology for the first time to discuss my allodynia.
I’ll have my cast and stitches removed around Valentine’s Day.
And, I’ll see GI right before my next infusion, when we completely change medications, again.
I also came to the realization that we are only 20 days into 2018 and my doctor visit and VA appointment count is already at 11 and counting…
As for this weekend following the Entyvio infusion, Saturday will be spent at home in my onesie finishing this blog, listening to the radio in my office with a cup of coffee. I ended up sleeping in later than I wanted this morning but at least I have the day to do nothing.
Sunday will be spent at another funeral/memorial service. This makes two for the week.
I did have a few articles published by IBD News Today and Everyday Health, so I will link them here. I discuss Entyvio infusions and preparations, skin issues, getting sick, and, working with Crohn’s disease.
I hope your January so far has been okay. I know For Me, It Could Be Worse.
And as always, any information you’d like to offer up about Entyvio infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
CURE for IBD:
For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds WE raise will be allocated to IBD research for a cure. That’s right, 100%!!
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