In my Crohn’s disease world, things are about the same, which means chaos ensues.
To catch you up, I have mentioned many times before that one of my Crohn’s disease manifestations is perianal abscesses. In fact, they were one of my first symptoms and gave doctors an idea of what was going on with my body, pre-diagnosis. See My Crohn’s Disease Journey To Diagnosis
In 2014, roughly two years before my Crohn’s disease diagnosis, I noticed rectal bleeding. Before, I had never noticed any pain as one of my symptoms. Within a few months, I suddenly noticed a large and painful growth in my bottom that had appeared overnight. I was suffering from a perianal abscess manifestation on my rectum, which needed an emergency incision and drainage.
After that, no real rectal issues up until about a year ago, in July of 2018. It was then that I noticed another lump on my rectum. At this time, it was not painful, but there.
After seeing my gastroenterologist and her performing a rectal exam, I was referred to general surgery for an exam under anesthesia, to which they ‘found nothing’. It was only during the second EUA that I found out that this “exam” only lasted 20 seconds – the anesthesiologist told me this as he was telling me how quick this ‘procedure’ was.
Only 20 seconds.
No wonder they did not find anything, they never even took the time to look.
With another trip to my gastroenterologist, for a repeat rectal exam, I was told I would have another referral for the second EUA.
With this second EUA, I was given the same information – that they would go in and inspect, there was a change for draining, a tube placement, even a seton, and then there was a chance for a fistulotomy, etc. I knew the risks, this was not my first time.
I repeatedly told them that I was not going to be a happy camper if this thing was over in 20 seconds again. I think this was the last thing I said to them as I was being sedated.
For this procedure, I got to go into the surgery OR before getting any medication. Usually they give me ‘happy meds’ before I’m carted in.
They knew I had a fresh surgery I was healing from, the rib plating surgery, and I had mentioned that if I was to lie on my stomach, that I was going to need pillows buffering that rib from laying directly on the operating table.
They left me lucid and had me climb up onto the OR table myself and get comfortable with pillows guarding that rib. Then, I was given anesthetics and I mentioned my concern of that ’20 second visit’ one last time before I was out.
It seems that I have such a track record of feeling defeat after surgery, that my first concern when I open my eyes after is ‘if they fixed it’. I remember waking this time, no different than my rib plating surgery, asking if they had found the problem and fixed it. They did, sort of.
Now, since they had previously cut around 11 o’clock for my previous abscess and fistulotomy surgeries, I shall refer to my rectum as my ‘7-Eleven’ – because I am hilarious. Haha.
Now, I am two weeks post-op from surgery, give or take a few days. I still have an open wound, but it is not nearly as painful as it was at first. I had to gauze my 7-Eleven and keep it sterile. I tried looking at the incision a few times in a mirror but my rib tightness prevents stretching that far to look. I have a sitz bath that I could have used, but I prefer to use my shower.
I’ve been used to having to use a pillow for my ribs for the past few months, but was I was having to use one for my bottom, too.
As of today, I did have a follow up with my surgery team, but since I have been okay with this surgery and no infections, a follow up is only ‘as needed’. I will see GI in a week or so, and she will have a look-see at my 7-Eleven to confirm it is healing properly. I will see GI a week before my next Stelara injection, so I can fill her in on how my body has been managing, Crohn’s disease wise.
If all goes well, this will be the last time this abscess gives me troubles. There is always a possibility of fistulas and fissures after an abscess incision and draining, but with Crohn’s disease, you become very familiar with monitoring your body. Because I suffer perianal disease and my Crohn’s runs rampant, this is not unfamiliar to me.
Like my situation, I knew there was an abscess and I knew if it was not kept under control, that it would lead to ER visits and surgery. And, once again, I was right. This is why patient perspectives and self-advocating are so important with these chronic illnesses. See Rib Plating Surgery.
No one can understand what is going on inside of you, if not even you are familiar with how your body is maintaining. But, when you have suffered this long and been through this much, you know your own body pretty damn well and you know when something is wrong.
You have to be vocal and self-advocate. I know I’ve had to. I have had to be vocal with many of my issues, with the risk of not being taken seriously by my doctors or being seen as an attention seeker. Being a seemingly young, green-haired female is not helpful, especially not in the veteran world or the VA health care world. So, I had to be extra pushy to get the care my body needed. Even when doctors discouraged me or refused to listen, I persisted. I knew things were wrong. I made sure I was being heard eventually.
And in the end, I am right. Every time.
In other news, I know I got you up to date on my rib plating surgery and now my perianal abscess. There will be another post focusing on my Stelara self-injections, and another focusing on the hot-mess express that is my hands.
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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:
My Crohn’s Disease Journey To Diagnosis
Stelara Self-Injection #2 & Rib Pain