Do ya'll remember a little over a month ago when I went to the GI and had the nurse practitioner lady look at a lump thing in my nether regions? She told me nothing was there and I needed to take fiber, then kindly passed me off to the surgeon for the hernia repair. Well, sometime between then and when the surgery was over and I was dealing with all the other wonderful things that came along with the recovery, the lump had gone away a little bit. But then it came back. Bigger and badder. Even though we have found ourselves under quarantine and by law have to stay in our homes unless it's a real necessity to go out, I made an appointment to venture into a ground zero location and see Dr. GI. Because of all of the canceled appointments I was able to get an appointment relatively easily. I didn't want to go, but I needed to have this lump check out. It was a very good thing I did too. Nurse practitioner lady was super wrong - it definitely is something. It's a perianal abscess caused by my Crohn's Disease and it's a huge problem! Here's the scoop...
If you do a little Google search about perianal Crohn's Disease you will find all kinds of fun and exciting things like "Perianal Crohn disease(PCD) is defined as inflammation at or near the anus, including tags, fissures, fistula, abscesses, or stenosis. The symptoms of PCD include pain, itching, bleeding, purulent discharge, and incontinence of stool." Super fun, right? No. It's awful. As much as I have always known that Crohn's can affect you anywhere in the digestive tract - "from the mouth to the anus" as they say - I never expected that mine would be in the latter area. I have always had problems in my small intestine and the beginning of my colon. I guess I shouldn't be surprised, but I am.
At my appointment, Dr. GI assessed the lump and determined that it is definitely an abscess. He said with Crohn's Disease, sometimes you will make abscesses and that can be a big problem that oftentimes requires surgery. AAHHHH!!! NO MORE SURGERY!!! PLEASE, PLEASE NO MORE!!! He immediately put me on 30 days worth of two different antibiotics, ordered a CT scan to see how bad the abscess was, and referred me to a colorectal surgeon. I said, "Well, what about current situation happening in the world? Will they even see me now?" His response was, "Jen, this can't wait until June. It's emergent." Yikes!
It immediately dawned on me that this was the moment I had been waiting for. All the times I went to the doctor complaining of problems that they couldn't find a reason for. Finally, I actually had a reason. Don't think for one minute that I let that moment pass without looking at Dr. GI and saying:
I even reiterated that his NP told me nothing was wrong and I should take fiber. He actually apologized. It wasn't nearly as gratifying as I hoped. Because now I'm for sure sick and it's actually serious. Not really a win, but hey, at least I was right and they know I'm not crazy.
That appointment was on a Thursday. I was able to pick up the antibiotics on the way home and started them that day. I waited, not so patiently, to be called for the CT scan and appointment with the surgeon. As the days went by I was becoming more and more anxious about it. The whole idea of having an abscess upset me. The thought that I might have to have surgery on it scared me to death. How would a wound even heal in that area when you are constantly going to the bathroom and wiping and aggravating the all the tissue in that area? How would I be able to keep from getting an even more terrible infection. My mind raced and my anxiety ran wild. I was flat out terrified of the possibilities. I have faced a lot with my Crohn's over the past 25 years, but never this. It didn't help that while my mind was chasing worst case scenarios about the abscess, the whole world was shutting down because of the Covid 19 virus. The fear of not being able to get proper medical care for something other than the virus had me concerned. The news media made it seem like that was the only thing any doctor or hospital was concentrating on and unless you had the virus, you were shit out of luck for medical care. Did I mention I was terrified?
Monday morning came and I was called to schedule the CT scan. There was quite a conflict though because once I had the appointment scheduled, it wasn't very long before I was called and told that the place I was supposed to have the test done at was closing until the middle of April - possibly even May - due to the virus thing. I needed to reschedule the test at a different facility. After that got sorted out I was actually able to get in for the CT scan the next day. I'm still not even sure how that happened, but apparently they all saw an urgent need for me to have the scan done. I was happy to get it over with quickly, but hat only scared me more.
I tried to logically think about the situation, but my mind kept spiraling. I feared that the Crohn's was so active and running rampant in my rectum that it caused the abscess and it was going to be so bad I would need tons of surgery and maybe even a colostomy. I reasoned with myself that I had just had this same exact CT scan at the beginning of September and it came back totally normal. There was no way that it could have gotten that bad in that short of an amount of time. Right? RIGHT?? My anxiety was spinning out of control. I contacted a lot of people in the Crohn's community and asked for their advice about such matters. I asked what they knew about abscesses and antibiotics and surgeries and everything else. Some knew about them and some didn't. I didn't like what most of them had to say though. They talked about lancing and draining and surgery and setons and packing and OH MY GOD HOW IS THIS HAPPENING RIGHT NOW IN THE MIDDLE OF A PLAGUE???!!!! I really appreciated their advice and I am so grateful for being able to reach out to them, but I just kept getting more and more panicky about all of it. I managed to keep it together enough to make it to the CT scan, drink all the yucky contrast, get injected with even more contrast and not so patiently wait for the results. I didn't hesitate to share my anxiety struggles with everyone I talked to though. I was just hoping for some understanding and compassion. I desperately needed someone to tell me it was going to be okay. Everyone mistook my anxiety to be about the virus though and not my abscess. Stupid pandemic!
The CT results came in the very next day via the little online chart thingy that you can use to view results and chat with your health care team. The problem was, I had absolutely no idea what they meant. I couldn't understand the medical lingo. It was so in depth and even as a nurse, I had no clue. I did my best to stay off of Google. I knew I was not going to find accurate answers online. I put a call into Dr. GI for him to clarify it for me. Nothing. 3 days and 4 messages later - STILL nothing from him. I had two thoughts: 1. If it was super bad they would have called and told me right away. 2. It was super bad and they couldn't figure out a way to tell me. I had the most horrendous situation happening inside my body in the history of Crohn's Disease and they had no way to even begin to explain it to me. There was no in between.
FINALLY, I got a call from the surgeon's office on Friday morning. They wanted to make sure I was taking antibiotics and was taking hot baths, using warm compresses and/or a heating pad. I was and I had been. They asked me if the abscess was causing me a lot of pain, if it was draining and how I was feeling. By this point I had been on antibiotics for 9 days. I had been doing the hot baths as well. I told her that it felt like the abscess was a little bit smaller. It wasn't draining and it wasn't really causing me large amounts of pain. Just knowing it was there was what was really bothering me. She said that in light of the pandemic crisis they would hold off on seeing me unless the abscess got bigger and/or started causing me more problems and pain. She said to keep doing what I was doing and let them know if anything changed. I asked her if they had gotten the results of the CT scan and if she could interpret them for me. She said they didn't get the results because they were from a different hospital organization than the one that I had the test done and they couldn't see the results. (Fucking vendor companies being all involved in healthcare is really stupid!) But she agreed that there was no reason I shouldn't have had the results and a call back from Dr. GI by now and she suggested I call Dr. GI's office every hour until I got a response. Okay then.
It was getting late on Friday and I feared that I was going to have to wait the weekend before hearing the results. At 4:30pm the phone rang. Dr. GI's MA calmly explained that she had to wait for Dr. GI to explain the results to her because she couldn't even decipher them. She said he said that everything looked good. All the complicated medical lingo was describing my abdomen in a way that they would expect to find it a month post op. It was just really technical. She also said that the abscess wasn't very deep and showed no signs of tunneling - which is a good thing. She said to keep doing what I'm doing, taking the antibiotics and doing the baths. With any luck the infection will reabsorb into my body and I won't need surgery.
So that's the deal. I'm not dealing with anything super bad, rare, or extremely dangerous. Though it's still really scary to me. I'm really very concerned about possibly needing surgery and I am just praying that this thing goes away on it's own. Please send me all your love, well wishes, positive vibes, sacrificial goats, prayers, smoke signals and whatever other heebee jeebee juju you can muster to help me get through this with NO SURGERY!! It's so appreciated. Thank you!!