Well, folks, February has been a whirlwind and it has almost come and went in the blink of an eye.
I know I’ve been slacking when it comes to posting. Every two weeks or so is unacceptable and I apologize. I also thank you for sticking around and following my journey even when my consistency with posting has been off.
Since my last blog post, Stelara Infusion & Ganglionectomy Pain, my life has continued to be chaos.
I’ve not felt any better since beginning my new medication. With Stelara and Imuran as my main Crohn’s medication treatment plan, for now, I’ve ended my steroid treatment with Prednisone and now we wait.
It has only been a little over two weeks since starting the Stelara and this week alone has been one of my more painful.
I’ve woken up every day this week in gut-wrenching pain. I have bowel urgency and it hurts so much that I am usually hunched over in pain for as long as it takes. Sometimes my legs fall asleep completely and I’m just kind of stuck there waiting for them to wake up.
I’ve been like this for hours each day, leaving the bathroom (read: my second office), and I try to lay back down but my stomach begins to spasm again and I start the painful process all over.
Sometimes there is bleeding or moments of tenesmus, I get cold chills and lightheaded too where I feel I may faint. I get clammy and I can feel my blood pressure dropping, with waves of pain coming and going.
My stomach, intestines, and rectum spasm and it is more than debilitating in those moments. If I want to do something or go somewhere, I’ve had to plan out an hour or more time extra just to give myself time to pull myself together.
At night and during the day, I haven’t been keeping much of anything down. I eat, I snack, I try to eat more bread and crackers, but I end up vomiting without fail.
I need to call GI, specifically Dr. S, and let her know I’ve been struggling. I had even thought of asking for fluids since I know I’ve kept nothing down this week and every morning is the worst; I hate waking up to immediate pain. I see GI in early March but this has been a constant week of pain.
I’ve posted images of myself with the stomach bloat that comes with Crohn’s disease, with some of the nicest feedback and with some of the rudest suggestions. I shared what I go through, and for those who haven’t read it via my Instagram or Facebook:
This is my Crohn’s disease.I usually don’t post these type of photos, blame it on my vanity, but this is a reality when living with IBD. With Crohn’s, my autoimmune disease, this is my real life even though I show a different view on social media…don’t we all?Last night I ate dinner, chicken and a baked potato, nothing overly seasoned and I definitely skipped the salad. I rarely finish my dinner and keep it down. So, I went through the daily dreaded routine of getting nauseated and vomiting. For me, this has been my ‘normal’ for over two years now.Then, comes the painful bloat and distended stomach because my bowels are fighting against themselves. Inflammation with my small bowel Crohn’s causes me to look as if I’m a few months pregnant and almost all food has a problem with digestion in me. My Crohn’s causes swelling and my stomach makes sounds that you’ve never heard from a stomach that make you think cats and dogs are fighting inside me. That is the first image, my bloat, my belly, my painful evening of holding my stomach and rushing to my bathroom – aka my 2nd office.The second image is from this morning, just hours later, after restless sleep and my everyday morning bathroom urgency that I go through, which always includes mucus and blood, cold sweats and chills, lightheadedness and painful muscle spasms in my bowel and rectum. Sometimes I make it to my office in time, sometimes I don’t. Its a whole ordeal that I wish upon no one. The bloat starts to subside and I begin to look ‘normal’ again. That is, until I eat again.I guess my point is that you never know what someone is going through internally. Yes, I may look okay but take a peek inside my body.Please, don’t ask me if I’m pregnant, that’s a whole other story. Don’t offer diet advice or tell me what I can or cannot have, I know the foods that cause more or less symptoms for me. Don’t assume that I’m ‘fine’ because I try not to complain, even though I’m battling every minute. Don’t judge me for what I do or don’t do, I will live, I will do things and there will be days I can’t.I’m trying. I’m fighting. I’m surviving.I will beat this Crohn’s, just not as quickly as one would hope.#crohns #itcouldbeworse
I thank those who commented or contacted me, the positivity within the Crohnie world is so wonderful. There will always be the negative or suggestive side of IBD but I just have to ignore it. Never read the comments, right?
Since my Ganglionectomy surgery, I got to play surgeon one day. Two days before the stitches were to be removed, I showered and removed the gauze, and two of the stitches had come out!
So, seeing the other two digging their way into the wound and scar, I wanted to get them out, too. They should have probably come out a week prior. One stitch was able to be cut out, by the knot of the stitch, one string sidecut, and with one quick pull, it was out.
The other, it was not that easy.
When I tried to cut it out on one side. I ended up cutting both sides of the knot, leaving the majority of the stitch inside my wound. The wound was so irritated and swollen, the stitched piece went inside and was not visible. Like, at all.
We had to pinch the wound and make it to where the smallest little piece of the stitch was visible on the inside, like a pin tip it was so small. I grabbed tweezers and really pressed in to get a grip on the end of the stitch and thank goodness we got it out!
It was definitely nerve wrecking thinking I’d have this stitch stuck inside the wound forever. But, four went in and four came out.
I met with plastic surgery, for them to look at my wound from surgery. They thought they’d be taking out the stitches but I made their job easy for them.
The doctors looked at my scar, told me I knew what I was doing and doing a good job at taking care of it and that I’d need one more follow up with the surgeon.
For my right hand, I was scheduled for an MRI since my x-rays showed no issue. I have had plenty of MRIs, even at the VA no less, so I know the drill.
I take out each of the 6 earrings I have in each ear. I usually take out the two nose hoops on the side of my nose, too, even though these are not magnetic. Trust me, I even bring my own magnet if questioned.
I never, NEVER take out my septum hoop. Usually, a band-aid just to cover it suffices and I have the procedure, whatever it may be. I even had that MRE on my stomach a few weeks ago, and that lasted an hour. The septum hoop, it was no issue.
But for some reason, and I get that he was trying to follow the rules he’d been taught, but the x-ray technician refused to do it with my hoop in. He suggested going to the ER, to have them ‘cut it out’, but my questions were ‘what happens when they inevitably rip my septum trying to open the hoop where it clicks and locks into itself’ and ‘who pays for that jewelry’?
I would get it if it had been an issue previously but it has never been a problem. So, not only did I have an evening appointment for this MRI- 6 pm – then I get there and the scan doesn’t even happen. I was angry but there was no way I was letting them attempt to cut it out.
The scheduler for musculoskeletal called me questioning what happened, I filled her in and she said she would contact the doctor and the x-ray area and see what their plan would be. I’m guessing an outside provider will do the MRI with a referral since the VA denied me.
After that mess, I ended up getting a new medication in the mail, Vitamin-D supplements. I had been tested with rheumatology to check my hormones levels and Vitamin-D and I hadn’t heard a word back since.
My Vitamin-D tests came back low, after looking at my online chart after getting the new prescription, so I’ve added two more pills to my daily intake. Now my count is? I’ll have to update you on that after a recount.
With low Vitamin-D, this can cause body pain with your muscles and joints. This can cause depression and patients can get sick more often. This can hair loss and bone loss. This would explain some of my issues and it seems to be pretty common for Crohn’s disease patients to have a Vitamin-D deficiency. I had never had this test done, but I think rheumatology will be monitoring those levels now.
As for work, I left CosmoProf.
I was getting more and more unhappy with the work environment, management, and I felt singled out over my many doctor’s visits.
It was Valentine’s day and I went to work like normal. I found out that the manager was sick and so we would have to pick up the slack. Specifically, I would.
My schedule was the only one changed, and if you worked there then you knew the schedule was already a messy situation. We were not allowed overtime and with the schedule change, I would have over my scheduled hours. I was already scheduled for my third weekend in a row, opening and closing the rest of the week, and, no one talked to me that day after I brought it up.
By lunchtime, I had already contemplated leaving a million times. When my coworkers went to drop off the deposit and get lunch, coincidentally I was left out.
After a multitude of issues, I couldn’t take it anymore and I knew I deserved better than this. I was busting my ass but for what? I felt way too overqualified for this and I wanted to find new opportunities.
I grabbed my stuff, clocked out for the last time, and, I texted my boss to mail me my last paycheck. It felt endearing and I knew it was the right thing to do.
The even better news?!?…I was offered a ‘Grown up’ job!
I had been on Indeed and similar sites all week after my walk out. I looked for a lot of VA jobs and jobs with communication focuses.
I was first offered a management position with, Sprint, which would come with a salary and my own store. The downside was mandatory working every day, open to close, with every weekend included, working roughly 75+ hours a week…so…
Then? Another opportunity!
In Lexington, I have had interviews all week. I even had to go and buy ‘business professional’ clothing, ya know, button up shirts and dress pants, blazer optional. I never wear pants, let alone this style.
I am still writing for IBD News Today, too, and you can look for those weekly. The past few weeks I have discussed Dehydration, Perianal Disease, and Stelara Infusions.
So, my February has flown by. It has been chaos. It has been good and it has been bad. Here’s to ending on a good note! I’m sure I’ll have loads to tell you in March.
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 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!
Previous Posts on It Could Be Worse:
Stelara Infusion & Ganglionectomy Pain
Entyvio Infusion #5, Work, and Scheduling Appointments – Weeks 47 & 48
Crohn’s Disease Essentials and Emergency Kits
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%!!
Yay! So happy your wound is healing up well and that you were able to leave your job,sounded like a toxic environment! Not so yay for the symptoms:( hope you start feeling better asap!
Thank you! Hugs!
I’m sorry you’re struggling with your tummy 😦 but so glad to read about your new job! That’s awesome! I also quit my job unexpectedly….in a manic panic moment. It’s been two years and I’m so thankful I did. ❤ Feel better!
It works out for the best sometimes, quitting in the moment. I’m glad I did it. I’ve spent the week recovering and working on me. Thank you!!!
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So with the vitamin D, I suggest liquid drops and buy vitamin D +Vitamin K because K is needed for absorption. Are you taking any anti-spasmodic meds (like dicyclomine)? I was bad off last year and the anti-spas meds only helped marginally, but still worth it. I had very intensely awful perianal disease (fistula/fissures/thrombosed hemorrhoids/incontinence) and biologics just don’t work on me (not even Stelara, and it made my hair fall out so fair warning). I had my colectomy in October and I’m WAY better (because mine is Crohn’s Colitis) but weaning off prednisone sparked a lot of extraintestinal issues due to inflammation (joint/muscle pain, skin conditions, mouth ulcers) and my rectum was bleeding so I decided to try charlottes web cbd oil in “advanced” formula and it helped alot–it also increases appetite and chills you out. Expensive but I use my HSA for all my supplements. I am also taking thorne stress B complex (bought on amazon.com) to help my adrenals recover from long term high-dose prednisone, and I believe it helps. I also take GNC calcium/magnesium gel capsules, krill fish oil caps, EZFE iron pills (gentle to tummy), a vitamin, and VSL#3 (when I remember it since its in the fridge).
If I’m feeling lazy then I might only take the vitamin D+K drops (and you should take at least 6,000iu/day or you won’t see much improvement, I take 10,000iu) and calcium/magnesium–but I never skip these 2 supps because they are vital. The cal/mag will help balance your electrolytes and protect you from bone loss. Also, when I was as sick as you are water didn’t hydrate me. I basically lived off apple juice + unflavored pedialyte–carried a 32oz yeti cup of it everywhere and drank all day/night. You could also try electrolyte drops (like drip drop) but you need to add electrolytes to anything you drink–you’ll notice you feel better (not good, just not parched). Pedialyte also makes popsicles for little kids (baby section @ walmart or cvs) and they taste f*cking awesome–my toddler asks for them as a treat!
That’s all I got–best wishes on the new job and I hope Stelara works for you. XO