Well, guys, catching you up might take a minute with this post. Since my last ‘real’ blog post, I’ve only updated you on Lumpy, my ganglion cyst.
I need to vow to post weekly like I used to, I can’t apologize enough to my followers.
I had called and visited the VA, to see my plastic surgeon about my recurring cyst, and we scheduled my surgery for 5 days later, so that has taken over a lot of my time and energy.
In my last ‘real’ post, Stelara Self-Injection #1, it has been almost a month. I’ve just been off lately.
I know, I know, I’ve been slacking, but I didn’t even update my IBD News Today columns until two weeks ago.
Can you see how chubby and swollen my hand and wrist is? Ouch.
My hands have been swollen and hurting, especially my left since the surgery, and I’ve tried sitting and typing and my left-hand doesn’t seem to agree with doing that.
I’m having numbness and tingling near my ganglionectomy wound, and one day while changing the dressings, I touched near it and it felt like a TENS-unit, sending nerve pains in my hand. I had to stop and breathe for a moment because the shock in those nerves was unbearable.
I actually had the stitches removed last week, a week after the surgery. I did not want the stitches to stay in long since last time they were embedded in my skin and the chaos that came with taking the stitches out myself.
I will note, this time the ‘e’ in my Love tattoo on that wrist was slightly affected with this second surgery, but not completely.
The plastic surgeon at the VA took a quick glance and then asked the nurse to remove my stitches, easy peasy. I went over with her what happened last time and she offered to let me keep the scissors and tweezers for removal since they will only be thrown away. My luck, I’ll have stitches again at some point, so now I’m prepared for a safer at-home removal.
Otherwise, my wound is healing. I’m not wearing any bandages on it anymore but I’m still being very careful with it, as it is still pretty weak.
I continue to have no feeling in the inside area of my first finger and thumb. When I touch it or poke around the area, I know I’m touching it but I don’t feel it. Is it a very bizarre feeling of no feeling?
Last surgery, the feeling came back in my hands and fingers after a week or so, but going on a month now, I’m concerned for permanent nerve damage and the feeling in my fingers never returning. I mentioned this to my neurologist when I visited with them, and they said to just keep them updated on it.
I bought another brace to help stabilize my wrist and thumb. There are moments of pins-and-needles but it is different than that, with pain and weird sensations. It has been hard to type, cook, or do anything with this hand.
I haven’t even been able to walk Bilbo. I’ve been taking him to the park and just letting him run around freely instead of tugging on my wrists with his leash. I’d say this makes him really happy and he gets to go on a car ride with Mommy almost every day!
His 4th birthday is on May 22! TODAY! HAPPY BIRTHDAY BILBO!
For my Crohn’s disease, I have no real answers as of yet.
I was beginning to see fewer symptoms with my first self-injection, with less bleeding and urgency around week 9 of my Stelara treatment.
Now, I’ve had the same issues this past week and I even had to take my GI doctor, Dr. S, a stool sample “gift”, to see what is going on in this rebelling stomach of mine. Dr. S tested for C. diff, Clostridium Difficile, as well as Fecal Calprotectin. Both came up negative, thank goodness.
I’ll have my next Stelara self-injection in three weeks, with blood tests and a follow-up to see how my IBD is maintaining. It has been a while since my last pill capsule endoscopy, and we have discussed a repeat at some point, so I’m sure I’ll have that done by summers end.
Dr. S will not be pleased to know I am losing weight like I was a few years ago. It was brought up during my last appointment with GI about my body losing a few pounds. I had lost 7 pounds since the New Year and it seems to continue to drop, so I don’t know if my body is healing or rebelling, like always.
So, you’d think my weight would be maintaining. January I was at 128.4, give or take a few pounds for winter clothes, and depending on day and scale. But now, I’m at 109.6, almost 20 pounds lost. I haven’t lost weight like this in over a year, I’d been maintaining we thought?
I have not changed my diet, I still really only eat one real meal a day, and I will try to snack in between. I am still having the nightly vomiting spells that have really taken a toll on me for the past 2+ years (remember, this began in August of 2015). Hell, I have even been keeping meals down, like grilled chicken and *some vegetables* – not all of them.
I would like to think that I am entering remission, but I’m sure a capsule endoscopy will have to be viewed to confirm.
My anxiety and stress levels have been going through the roof, so much so that I started seeing my mouth begin to flare with cold sores and my Acyclovir not helping. I usually get cold sores a few times a year, more so if I am under a lot of stress and worry.
With another VA call, I got an anti-viral from my primary care doctor and they seem to be under control.
(Note – these photos below were taken on separate days in the past few weeks. I seem to post the same Snapchat story every time I am at the VA. #copypaste)
With my neurologist, I had a follow-up this week. I was supposed to see them at three months, but when I was called to schedule in January, the next available appointment was in May, so I had to take it.
When I had seen neurology previously, we only upped a few medications since we are trying to get things under control, specifically my chronic migraines and allodynia. My insomnia and Fibromyalgia ‘should’ be helped with all of the medications I’m on.
But let me tell you, this appointment with Neurology had me livid. In the scheduling process, you are told to arrive 15 minutes early for appointments. Then, you get an automated call to confirm your appointment, where they also remind you to arrive 15 minutes early. Then, you get a text message confirmation, “Press Y1 to Confirm, Y2 to Cancel” style, and after confirmation, they remind you, yet again, to arrive early. Sometimes I do, sometimes I make it right on time, either way, you have to wait.
I arrived for this appointment around 2, with the appointment scheduled for 2:20 or whatever. I sat in this waiting room until after 3:30… There are notes on the reception desk at each of these appointments that say something to the extent of ‘Please let us know if you have been waiting for 15/30 minutes’.
So, around 3 o’clock, I asked the nurse what was going on. There were people in the waiting room who had been there since before I arrived, so I knew that they had been waiting a long time, too. I was so mad that I didn’t even give the receptionist a time to reply before I returned to my seat. If I wasn’t called in the next half-hour, I planned on leaving. Around that time, I was taken back to be seen.
For this appointment, I asked the doctor to refill my meds. I have been buying melatonin over the counter but she told me she would order me some. I’d have to get primary care to refill my Gabapentin since they are the original ordering doctor for the prescription.
I made sure to ask about my breast nerve pain and shocks that I get. I had an ultrasound, a mammogram, and all that was found was a mass. It was categorized as BI-RADS Category 3, which, through Google, I found out means that there is a mass, whether it be a cyst or lymph node, that is usually benign.
That was in December of 2016. I was supposed to have a follow-up and repeat smashogram six months later, but that never happened. I had to really search my medical chart to even find this information, we’ve just been ordering up Gabapentin without finding out the source of the pain.
So, the doctor asked a ton of questions. Was there an injury? Swelling? Does the pain move? No, no, no. It just started all of a sudden with an electric shock like feeling that startled me to tears.
The doctor suggested an MRI on my back, to see what my nerves look like. That’s scheduled for mid-June, but on a Saturday, ugh.
After that, the very next day I visited with General Surgery for my wonky left rib.
For some reason, my 10th rib on my left side-back area, it swells. It gets tender and sore to the touch, and miraculously it comes and goes.
I mentioned in previous posts that I have had an MRI done, x-rays, and an ultrasound of the rib. The only explanation the doctor could give was ‘focalized inflammation of the cartilage’.
When the doctor went to visit my imaging history and speak with his supervisor, he popped his head back into the patient room I was in and asked: “Do you want to cut it out?”
I must have given a confused look because he clarified that it “was an option”. I half asked and half told him I wanted to know what the cause was and if it would cause me pain for the next 30 years, ect., but he told me he could not tell me those things.
His suggestion was to refer me to a Thoracic Surgeon to discuss a rib resection (?!).
I haven’t scheduled that appointment yet, but then we will discuss removing the portion of the problematic rib that is inflamed and what other options I have moving forward.
I looked up that appointment’s doctors notes entered afterward, and he commented “Likely Costochondritis”. If I am correct, I have thought about this problem and done research on this before.
This condition is one of those comorbid ailments that can come when diagnosed with a disease; my second chronic illness diagnosis, Fibromyalgia, came after my first chronic illness diagnosis of Crohn’s, my autoimmune disease. So, is this rib pain due to my IBD after all?
Working towards the next few months, I already have 4 appointments scheduled. I’ll get my next Stelara injection in a week, with all the fun blood work, and I’ll hopefully have answers for my Crohn’s disease management, ribs, hands, nerve pain, and weight loss.
Otherwise, I do continue to write with IBD News Today, discussing everything from Taking Time Off, the Crohn’s Disease Basics, and Clostridium Difficile, or C. diff. All of my columns can be found on my Published Links page.
I’ve been trying to be more productive, I’m out and about each day, trying to work more, do more, and just be happier.
I do seem to keep busy most days with interviews, appointment, errands, heading in and out of Lexington, as well as my required Federal Grand Jury Duty services that have turned out to be more and more interesting and humorous with each new day. But, alas, I cannot talk about it. Sorry, guys and gals.
I’ve had photo shoots, made and competed in my first beer cheese contest, I’ve been out with Bilbo daily, and, I continue to look for that dream job of mine that works with my schedule and body.
I mean, I’m here posting this after 1 in the morning because my goal was to update you guys today at some point, so here it is. I ‘m trying here people. Through insomnia, pain, body problems and never-ending issues, I am trying.
For Me, It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook!
And as always, any information you’d like to offer up about Stelara 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%!!
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley————————————————————————–
Previous Posts on It Could Be Worse:
Lumpy, the Ganglion Cyst, a Trilogy
Stelara Self-Injection #1 | It Could Be Worse Blog
2 Year Anniversary of Crohn’s Diagnosis Day | It Could Be Worse Blog
Crohn’s Disease Essentials and Emergency Kits