Less answers and more frustration
This post is part of my ongoing series chronicling my quest to find some, even if only temporary, relief from abdominal adhesions.
This week was a little better than last week. Not pain wise, but on an emotional level. I spent a lot less time crying and held tightly to the sliver of hope that the options I was given last week would be helpful. My week began like any other of the past months, with abdominal pain and extreme fatigue. Monday was spent in bed. I was completely worn out on Tuesday and all I did was put on some clothing (didn’t even bother with hair and makeup) and had my husband drive me to my dispensary for more medical marijuana. Thankfully I awoke Wednesday with more energy and strength than I have experienced in the past month. I was and am grateful for this spurt of energy as my mom and her husband were stopping by to spend the day with me and my family. They don’t live in California and we don’t get to see each other often, mainly because neither my mom nor I have been physically up for traveling much during the past two years.
The day started out with a pleasant surprise, my mom arrived in town early enough to go to my consult with the gynecological surgeon. Even though I am 47, it was comforting to have my mom with me. While we were in the waiting room, we joked that they are probably going to wonder why I was there since I have had a complete hysterectomy and any part that could have been a hotbed for ovarian remnants had been removed. Sure enough, the nurse who took me back didn’t understand why I was there and right off the bat stated that I was most likely wasting my time. Sure enough it was a waste of time and money, but I had to do it, otherwise I would be chastised by my provider for not taking them up on all the options they had presented to me last week. Anyways, long story short, the surgeon had thoroughly read my records and agreed that adhesions were the problem. BUT, because the surgeon, who performed my last surgery, in 2008, had gone to great lengths to remove all the hotbeds and anything that could create a gynecological issue, there was nothing he could do!!! His suggestion was to see what the colonoscopy showed and that the GI surgeon that I am scheduled to see next week will most likely be my best bet. Unfortunately, in the past every GI surgeon has told me that they don’t deal with adhesions. Lord help me if I hear those words next Tuesday. The only good that did come out of this appointment was that he agreed with what is causing my abdominal pain and at the very least I have one more doctor stating that on my record. While you may think that being told that he couldn’t help me would have been the biggest disappointment of the appointment, it wasn’t. Apparently, the surgeon who performed my last surgery is world renown for his technique and teaching. My heart sunk when today’s surgeon told me that I have already been treated by the best of the best and that there is no one within my provider’s network that even comes close to him. He stated this several times throughout my appointment, almost as if he was trying to hint that I should go out of network and back to him. Currently that is not an option. First, he is located in Arizona. While I am willing to travel to any state in order to receive the help I need, this surgeon would be considered out of network. But not just out of network, he wouldn’t be covered at all unless he treated me on an emergency basis. That leaves me with the only option of switching healthcare insurances. However, by doing that I wouldn’t be able to afford to see him because I would not have copays for all my services like I do now. My percentage from the cost of my last surgery set my husband and I back $17,000. Anyways, I left this appointment clinging on to the hope that my colonoscopy and next week’s appointment with the GI surgeon would be of help. Strike one, can I hit a homer or will I continue to strike out????!!!!
Along with my appointment, this was my clear liquid diet day as my colonoscopy was scheduled for the next day. Thankfully I didn’t have to begin the prep until later in the day, which allowed me to enjoy my mom’s company. Surprisingly it didn’t bother me when we all went out to eat. I sipped my clear juice while my family all had burgers and shakes. My mom was able to hang out with me while I began my prep. I was four hours into my prep before she had to leave and was beginning to experience some unpleasant side effects. My belly was bloating and getting larger by the hour and my nausea increased with each passing hour as well. A couple of hours later and I looked like the blueberry girl from Willy Wonka and the Chocolate Factory! I felt like I was going to pass out because of the nausea and ever increasing abdominal pain. Sometime after midnight, I felt it was safe to go to sleep without soiling my bed.
The bloating in my belly had decreased when I awoke on Thursday morning, but my nausea and abdominal pains were at an all-time high. In addition to this I didn’t have the strength to sit up or walk any distance. If I did attempt to sit or walk, I was punished with an increase of abdominal pain, nausea, and felt like I was going to pass out. I have never had this kind of reaction to a prep of any kind before. I couldn’t even get dressed. I ended up showing up for my procedure wearing my Star Wars pajamas. I can only imagine how awful I must have looked. My hair was disheveled, I could barely keep my eyes open, and pain forced tears to fall from them. Only ONE nurse was concerned about how my body was reacting to the prep. If I would have been left in the care of the first nurse, I would have ended up vomiting all over her or the exam room. Thankfully the one caring nurse was quick to get my IV in place and to get some anti-nausea meds in me ASAP. With my nausea under control, I was finally able to communicate verbally.
After the procedure, the doctor who performed it came over to talk with me. First, he agreed that adhesions must be the cause of my digestive issues. He then went on to say that surgery will only give me temporary relief. I said that he was right, but that while the pain to my sidewalls returned within months, I went four years until they started attacking other organs and five years until it became constant. I am not expecting to live pain-free; I just want to give my internal organs a break!!!! Plus it would be nice to eat more than one small meal every 24-48 hours!!!! His next piece of advice? Wait for it………..Go to the ER if my pain increases!!!!!!!!! He was so lucky that I was too weak to throw anything at him. Instead I just closed my eyes and took a deep breath. If that wasn’t bad enough, he then suggested I follow a specific diet that helps combat abdominal bloating. I let go of the fact that my symptoms are not being caused by a dietary issue and glanced over the paperwork he handed to me. You will never believe what I discovered. Over the past year, I have made major changes to my diet. I have been able to recognize certain foods that increase my pain, bloating, and nausea and have eliminated them from my diet. The key word being “increase”, I still experience pain and bloating of some degree no matter what I digest. Without realizing it, I was already following exactly what he was suggesting. I looked at him and shared that I was already following this diet. His response? Just give it a try!!!!!!????? He wasn’t listening to me. At that point I just shut my mouth and prepared to leave.
My sliver of hope is getting thinner by the minute. I meet with a GI surgeon next week and I am willing to bet that he will say something like this: “Your tests don’t show any GI related condition and I don’t deal with adhesions” Anger has replaced the sadness that I was experiencing last week. It sickens me that these doctors will agree with me in regards to adhesions being to blame, but not one is willing to do anything about it. In the meantime, before I see the next surgeon, I will be logging what little I am eating to prove that I am following the “diet” and I will be photographing my belly before and after each meal. In addition I will log how long I had to wait for that food to move through before being able to eat again without additional pain along with the pain levels throughout the course. If that fails, I have another plan of attack. I pray it doesn’t reach that point, because my next plan is going to be both physically and emotionally draining. Stay tuned, next week I will either be sharing good news or I will be sharing how I plan to continue fighting.
Wishing you a week with less stress and more reasons to smile!