One Step Forward, Two Steps Back | IT COULD BE WORSE BLOG

So far, since the last post, I have had so many more appointments, some with GI, some with primary care, and some with thoracic and rheumatology, plastics and neurology. I tell you, I live at the VA sometimes.

In my weeks since I have found that my abscess has not grown much, it gets swollen here and there. I had a general surgery consult for it, inspection and all, with a plan to go under anesthesia for an exam and possible fistulotomy.

Going into the ‘surgery’, I didn’t know what would happen until after I woke up. I didn’t even know my surgery time until the day before, I had to call them just to find out.

I was under the impression that this was going to be a worse experience than it turned out to be. I arrived at the VA that morning and I thought I was going to get to look forward to my first enema, complete with the nurse’s assistance. (Sarcasm, people). I was not looking forward to that, I even begged to do a bowel prep instead and those are the worst.

The surgeon did a rectal exam in an appointment beforehand and found the ‘black pearl’ – (the ER nurses named my abscess). It is about pearl sized and around 7 o’clock on my rectum.

The plan was to ‘go under’, let the surgeon inspect the abscess and look for the fistula, if there was one, and depending on the severity or problem found, that would decide whether they wanted to cut it open and seton the fistula or if they wanted to leave it alone. I was given a boxed enema and told to bring it with me on the day of the possible surgery.

To seton the abscess would mean to pretty much zip-tie the fistula, allowing it to drain and heal itself inside out. I was very nervous.

Now, they did not do this for my first fistulotomy and abscess surgeries, rather we just cut the abscess and allowed it to heal, then cut the fistula and repeated the healing process. 11 o’clock is pretty much gone from my bottom. It was a long 12 weeks of sitz baths and sitting on pillows.

The nurse couldn’t get my IV started the morning of, so I had to be poked twice. Luckily for me, I was the first ‘surgery’ scheduled for the day, and the nurse didn’t end up assisting me with the enema (she didn’t bring it up so neither did I), I was relieved to wake up with no incision.

Luckily, with the exam under anesthesia, EUA, the doctor found no major problem. My concern is that I did not get to point out the abscess location before I was given ‘happy juices’, and I was told that I was put on my stomach for the exam, which makes the abscess not very noticeable.

As always, after anesthesia, I try to nap.

Sadly, you almost get let down when they don’t ‘find something’ because finding something validates your invisible illness, but it is even worse when I felt the abscess that morning. I felt it yesterday. I can feel it today. The ER nurses could find it. My GI doctor, Dr. S, she felt it. The general surgeon there felt it previously. So? I get to just wait and see what happens with it.

I called the VA the next day, I asked to speak with someone about my concerns, but no one has returned my call.

Without the abscess to consider, I had thought my Crohn’s was getting ‘better’. I’m having less daily issues but I just can’t seem to shake certain symptoms, like pain or bathroom issues. I’m dealing with less but I don’t want any of it.

I still have not completed a blog specific to Stelara #3, so I plan to combine 3, 4, and, 5 for one post about everything I discuss.

I’ve felt worse here recently, with all of my problems coming back to life, with my painful eggshell days, cold-sweats and hot flashes, and even my eyes are more irritated. The abscess isn’t too happy either if I’m completely honest.

It is already time for my next injection this coming Monday, Stelara Self-Injection #5. I had tried to order it online with the VA like I normally do but it was not scheduled to ship until the 12th, the day my shot is due. I had to work it out with the VA for me to pick it up instead. I can tell a difference in my body in the days leading up to my shot, my body really needs it.

My ribs, well, I still don’t really have answers as to what’s wrong but we have a plan, finally. I have seen the Thoracic clinic a few times and I’ve left extremely upset, I mentioned that in my last blog. I was given a referral for rheumatology, for a second opinion, and then sent back to the thoracic clinic. I feel like I’ve been blown off and passed around to clinics.

Remember, there are two issues with my left side rib cage. Two areas, one in my lower back and the portion right below my breast. They get tender and swell, possibly cartilage swelling, Costochondritis.

I’ve been told that my rib cage is not symmetrical, that perhaps I was born this way. I don’t accept that.

The second problem is the popping. Now, I call it ‘popping’ but you could also call it rubbing against each other. I have ribs in that front area that rub against each other, almost popping against each other, which causes me instant pain and I can’t even explain how sickening the feeling is when it happens. My stomach comes up to my throat and sinks at the same time. Its unnerving and I hate the instant wave of pain and shock that comes from it. It happens at random, when I laugh, sit, or move my torso. I have mastered finding the ‘pop’ to show others.

In my opinion, something has to be causing it and something has to fix it. We did the temporary nerve block, which somewhat helped issue #1 but it did take away feeling in that side of my ribs. Issue #2, the only thing I’ve found to help is no movement allowed to that area which is not feasible. If I hold that area snuggly, then it doesn’t happen as often.

In my rheumatology appointment, they didn’t think they could help my underlying problems, that my rib issues were definitely thoracic related, a ‘mechanical issue’. They suggested going ahead with the permanent nerve block in the thoracic clinic and to wear a brace or rib belt to help, go figure.

Going back to the thoracic clinic, once again I got no answers. Apparently waiting over an hour is customary at this clinic, as I sat in waiting in their freezing cold patient rooms, mind you there were only three people in their waiting area, myself included.

I get antsy, so by the time an hour has gone by, I’m usually standing at my open door looking at all of the other nurses and doctors going in to see their patients instead.

My doctor, once he finally arrived, tells me that he is hesitant for the permanent nerve block and that he suggests wearing the brace for all underlying issues. I did my best to explain that there are two problems, that I know the brace will help the popping but there is cartilage swelling, too.

I told him, I just wanted this all done, meaning the pain and problems. He took this as me wanting a surgery, he yelled at me, then judged me for my ganglion cyst surgeries, for my Crohn’s management and for all of my other health-related problems.

I told him that during my last appointment, I felt as though he didn’t listen to me, only offered ‘maybe I was born this way’, to which I called bullshit. I told him he didn’t listen to me during this visit. I told him I would wear the brace for his suggested month, but I did not leave the appointment happy or feeling heard.

I immediately called my primary care team to discuss my visit, my concerns, and my rib issues. My nurse that I speak to often, she called and calmed me down about it the next day, after reading the thoracic doctors notes about the appointment. He even states in the note, “patient was predictably upset” because he knew I hated getting no answers or a guaranteed fix.

I was given a large brace from occupational therapy after the meeting with thoracic. None of this made any sense to me considering this whole thing. Why would I be given the temporary nerve block and told this was the original plan for the plan to change now?

I was told to wear the brace for a month and we’d follow up about the results after. If anything, the brace was uncomfortable and made my side more tender, flaring the Fibromyalgia tenderness, too.

With the next follow up, somehow I had gotten a new doctor, lucky me! My original doctor was at a golf game apparently but that was fine by me. This doctor listened to my concerns, felt my sides and ribs, felt the popping sensation and then talked with the surgeon.

 

The surgeon visited and I did the same with him. He felt my ribs and my popping, had me lie on my side to really see my rib area, but unfortunately, he couldn’t help the popping.

I was told that rib surgery is iffy, that some patients suffer nerve pain after surgery and that with removing a rib, they couldn’t say 100% that they would get the exact rib area that is causing issues.

The surgeon said to schedule the permanent nerve block for my rib tenderness and flaring and that was that. All of this mess, two months of my life gone, just for the original plan to come back into play.

This would not and will not help the popping but it would help one issue. I could take the brace I was given and alter it to make two thinner bands and see how that works with the popping.

We will schedule the nerve block and go from there.

As for my hand, I had my hand MRI, to look at the ganglion cyst that had returned. Turns out, it is not just one ganglion cyst this time, but multiple! No wonder my wrist feels more swollen and has swelling in different, and new areas. But, I did get a nap in during the scan.

 

I went in to see the plastics clinic about possibly figuring out why this keeps happening, other than that fall a few years ago. I only saw the student doctor and was given instructions for another surgery, as if I need to be told how at this point, this would be my third this year.

They gave me Chlorhexadine sponges and told to look for a call about scheduling. Ganglionectomy surgery #3 was just days before Halloween, with this being the worst surgery so far.

 

Had the cysts not sit near nerves and cause numbness and pain with movement, I would just have it drained, but I cannot get so lucky. I’d end up needing it drained weekly…

Ganglionectomy surgery #3 was similar to my previous two, in that I was the first appointment of the day. I was at the VA by 6 a.m. and put into one of their lovely gowns shortly after arrival. I met with my plastic surgery care team and anesthesiologist, got my IV hooked up in my hand, and, they checked my blood pressure, which reminds me to tell you all about the chaos related to that later in the blog.

I usually see the same anesthesiologist who gives me the ‘happy juices’, he even recognizes me now. I was given meds and taken into surgery.

When I woke up, I had my arm all bandaged up and I was ready to go home and go to sleep. Thankfully I wasn’t in pain until a few hours later, but the VA gave me meds for that with instructions for care.

 

The pain meds were different than what I’m usually prescribed, with Vicodin instead of Percocet. The Vicodin gave me migraines almost daily with use, so thankfully I am finished with that medication.

I was scheduled a week later for stitch removal and follow up, which seemed soon to me, only being a week after surgery.

This surgery gave me seven stitches instead of four, with a larger incision to remove two cysts. This surgery recovery has been the most painful, with severe bruising lasting long after a week. I was given a Carter block, this large blue Styrofoam contraption to keep my wrist up and not necessarily moveable.

I went to see the plastics clinic for stitch removal, but they were so behind and my hand was still so tender, we rescheduled for next week instead.

I’ll see them to follow up about the aftercare and strengthening of my wrist but I actually removed the stitches today, Saturday. A few of the stitches were doing more harm than good, embedding themselves in my skin, so I removed one at first but couldn’t take it and removed them all.

It has been 12 days since the surgery, they were due to be out. The last time I had them removed, my last surgery, the nurse gave me the tweezers and scissors in case I needed them, so I was prepared.

I’m still keeping the wrist bandaged, with gauze and an ace bandage. I’ve been wearing my sling and trying to keep it elevated as much as possible.

I’ve had 6 more days of Jury Duty scheduled, but we got lucky with our first off-day. We may be kept longer than the planned monthly visits for a year, it could be up to or more than 18 months. Like always, I can’t say much about it. Sorry.

I tried giving blood again this month, twice, but I was turned away for not weighing enough and later for low blood pressure. The minimum weight requires at least 110, but I’m sitting at 105-107, so they had to tell me no the first time. I’m pretty sure I was the same weight a few months ago and I gave a ‘smaller’ bag…

The second time, the nurse said I had low blood pressure, below their minimum, had her boss double check it, only to confirm it was low. I called and met with my primary care team, with my blood pressure going normal, then low, then maintaining low, then normal, it was all over the place.

On numerous occasions since this has continued to happen. It was low for my rectal exam and it was low for my ganglionectomy. It has been low for appointments, too so I may mention it again to my primary care. They had noted in my chart that this has happened a few times so I would like to know why.

In between the chaos, I’ve worked, gone on vacation, got my flu shot, blood was drawn, AND I made sure I voted.

I will note that if you have Crohn’s disease or IBD, getting a flu shot is okay as long as it is not a live vaccine, like the nasal flu shot. Getting the ‘normal’ flu shot via needle is okay. I confirmed this with my GI case manager before I got one. Pneumonia shot though, do not get.

I’ll see GI this week for my follow up after my Stelara shot and blood tests. I’ll see plastic surgery for my wrist. I’ll also see neurology about my migraines and nerve pains.

This hand surgery has been such a setback, with everything I need to get done being put on the back burner while healing takes over. I feel like I get one step forward and two steps back every time, hence the blog title.

I know I say it every time, that I’ll post more often, no more two-month hiatuses, and I do try, but things happen. Life happens.

Until next time, for me, It Could Be Worse.

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!

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To Donate: www.cureforibd.donordrive.com/campaign/icbwblog

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IBD News Today Column:

Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley————————————————————————–

Previous Posts on It Could Be Worse:

Two Months Time | IT COULD BE WORSE BLOG

Stelara Self-Injection #2 & Rib Pain

Videos & Published Work

Lumpy, the Ganglion Cyst, a Trilogy

Stelara Self-Injection #1 | It Could Be Worse Blog

No Luck of the Irish for Me

2 Year Anniversary of Crohn’s Diagnosis Day | It Could Be Worse Blog

Ganglionectomy

Entyvio #6 — The Last

Colonoscopy #5

Crohn’s Disease Essentials and Emergency Kits

WEGO Health Nomination