I had posted on Instagram and Twitter that I had some tests and procedures done recently. I love all of you who ask me about the findings or who just show me that I am not alone by letting me know they are thinking about me, sending a virtual hug, etc. It means so much to me to feel like I have not only people who care but people who really understand what it is like to deal with these types of things. Not to mention, I look to you all for so much advice that I would rarely trust anyone else with. I hope you realize, even if I don’t respond to something, that I read each and every single message, post, text and comment. It really makes me smile and gives me enormous strength!

Ok, enough with the lovey dovey stuff…

I had an upper endoscopy on Friday (I never knew a colonoscopy was referred to as a “lower endoscopy” until recently!) Anyway, I had fluid drained from my pelvic area on Monday morning. I will try to make this as short as I can but as most of you know, so many things go into our medical situations.

I want to talk about the procedure first. My gynecologist discovered a cyst with associated pelvic fluid a little over a year ago. After referring me to a surgeon, she and I decided to just keep an eye on what was going on and how I was feeling. It did not look alarming to the surgical oncologist she sent me to and I didn’t really feel that badly so it made sense to let things be as opposed to rushing to have more tests and procedures done.

Things were fairly okay for a number of months until I began having intense stomach pain. I also had a tremendous amount of distention, nausea and vomiting, and just feeling like my belly was rock hard (unfortunately, not from any ab workouts 😉 ) I naturally associated my first ER visit with some sort of GI issue and after the X-Ray didn’t show anything and all that was discovered was a high white count, I declined to have another radioactive test performed and went home once the pain subsided.

Fast forward a couple of months and that pain was back. It felt like I was having a blockage (where the pain is always there but gets worse at points; Kind of like intense waves/contractions) only thankfully I was having output coming out of the ileostomy. After the X-Ray once again revealed nothing and I was still vomiting and in enormous pain, I decided to go ahead with a CT with double contrast (oral and IV) which showed the issues I was having was the result of pelvic fluid and a possible cyst or mass.

I had gone to see my gynecologist about a month before my second ER visit because I wanted her to do another ultrasound and also ask her if she thought the symptoms I was experiencing with my stomach/overall body could be related to the pelvic fluid. I wanted to try to focus on one area and having this hang over my head wasn’t sitting well with me. She told me she honestly felt most of how I was feeling was more likely to be GI related but the excess fluid obviously wasn’t doing any good in my body and should be removed.

I agreed. Anything to help relieve some of my symptoms was worth it to me.

My gynecologist (whom I love and trust) referred me to an intervention radiologists for this procedure. I asked her many times if she trusted him, how his bedside manner was, if he seemed to grasp the complexity of the internal things going on with my body, etc. All my normal questions after receiving a referral. I went ahead to schedule a consultation that turned into the office thinking I was having the procedure done on that day. I did not have anyone to drive me there or home since I had planned on only going to see this doctor in a regular office setting. When sedation was mentioned by the nurse on the phone, I asked to have him call me back.

We spoke on the phone for a decent amount of time. I explained how I definitely wanted sedation due to having Post Traumatic Stress Disorder (PTSD) and went back and forth a little with him on my needing a designated driver. He even said “if you have had a lot of procedures or surgeries than you may require more medication than the average person.” That made me feel like he really understood my needs during this procedure. I cancelled the appointment and rescheduled it for a few days ago.

I expected to be put to sleep during the procedure. In hind sight, I should have called ahead of time and asked specific questions. I could make the excuse that I had the endoscopy the Friday before so I didn’t have time but we all know I could have checked in with them on Thursday to make sure I was prepared for what was to come.

As I stopped trusting that everyone in the medical profession would just “take care of things” for me around age 16, I realized how badly I needed to know what to expect. The surprises were awful because medical surprises, in my experiences, have never been good. I even began drawing up contracts for my surgeon and anesthesiologist to sign prior to any surgery so they understood how serious I was. I will publish those one day btw

Trying to move this along.

When I realized I wasn’t going to be put to sleep – after having two drains in similar to this one where I was completely awake and screaming, I was very upset. That event I just mentioned before with the prior drains (there was more to it than that) single-handedly changed my life and views on doctors and the world in and of itself. So to think that this could be happening all over again sent me into panic mode. Not to mention, I had been up most of the night moaning in pain from migraine and nausea. I was not in good shape to say the least.

Afterwards, this started reminding me of what Lindsey wrote in her guest post not too long ago. She said that every flare changes you. And she is right. Every flare, every hospitalization, every procedure, every surgery, every test, every new medication, etc… it changes you. Some in more significant ways than others but there is such a cumulative effect with Crohn’s Disease and Ulcerative Colitis. We all go through so much and it becomes triggering and continues to feel like we have no choice but to constantly allow ourselves to be at the mercy of other people, who more often than not, do violating things to us. It isn’t their fault, we all know they are just trying to help, but it hurts us in so many ways.

I wasn’t in tears throughout the procedure because it was the worst thing I had experienced. I was in tears because it reminded me of so much. Hearing “trust her, she is an excellent nurse.” when she messed up two IVs already (and did not listen to the location I asked her to place it in) makes it pretty darn hard to trust. If it was just this one situation, sure, I could and would have trusted her. But after 15 years of dealing with this, it gets to you.

So this doesn’t become even longer than it currently is, I will briefly say that procedurally what I expected for my endoscopy last Friday was exactly what happened. I was put to sleep. I did get some answers but am still also waiting to hear about some biopsies that were taken. Once I have all the information, I will share it with you guys… and probably have a lot of questions too actually!

Hallway of waiting room in GI suite

I have loved the guest blog posts I have been receiving. If any of you want to talk about anything (within reason) Inflammatory Bowel Disease (IBD) and/or ostomy related, please feel free to email me at Marisa@JournalingIBD.org so we can discuss it!