I’m having a tough time. I woke up this morning, felt well, ate breakfast, and climbed back into bed. A short while later, with no warning except a tiny, split second feeling of pressure, blood, mucous and feces poured out of my anus. It got all over my new nightgown (a cute number from Walmart by Amanda Price that is very pretty, soft and light but not see-through – a winner on all counts), on the carpet, on the bathroom floor, all over the toilet seat, and all over me. NO ONE WARNED ME THIS COULD HAPPEN. Should this happen? Is this normal?
I was told only that there would be a little mucous going forward from the natural sloughing of the colon.
Which leads me to my next topic. I was not sure if I was going to write about this because I am exhausted and want to move forward but several things happened during my hospital stay which were extremely troubling to me. No one told me about the possible outcomes and negative consequences of procedures, medications, etc. I was left to discover them on my own as they happened. I was also given a significant amount of conflicting information. I complained and advocated for myself and believe that I was penalized for doing so. I do not plan to return to that hospital or the care of those doctors.
So let’s start at the beginning:
- My primary care team reviewed my CT scans and MRIs and failed to advise me that the tumor was obstructing my colon, I had significant amounts of backed-up stool, and I needed surgery to resolve the issue immediately. Instead, they told me, without ex.planation, to call if I stopped going to the bathroom. It was not until I consulted a surgeon at a different hospital, who reviewed the same scans, that I learned I had a medical emergency. But for him, where would I be now?
- I learned that I would be subjected to open surgery the day before the surgery. I was never told why I could not receive a laparotomy despite my having asked the question and expressed serious concerns about open surgery. No one explained to me the risks/benefits of a laparotomy vs. open surgery, including but not limited to the potential for an unexpected 2 week hospital stay and its related costs, including financial, physical and emotional costs as well as the negative impact on the individuals in my life.
- In the hospital, all doctors and nurses are required to wear masks when in a patient’s room and elsewhere. One of my doctors refused to wear his mask with me. He told me that he had to wear it all day and it was uncomfortable and asked if he could take it off. I was concerned about telling the person who was going to cut into me within hours “No, the rules apply to you just like everyone else and I don’t feel like dying from COVID – you could be an asymptomatic carrier.” Instead, I smiled and said “sure.” A woman who goes along to get along is more likely to get better service than one who speaks up. That’s a fact. But let’s be clear: This is very much unlike me – I typically speak up regardless of the consequences. But if you’re going to cut into me? I want you to like me. This is what a severe power differential does. This individual also repeatedly asked me highly personal and inappropriate questions that had nothing to do with my medical condition over the course of his three visits with me. I stupidly answered for the same reason I agreed to the mask removal. When I finally voiced my objections (see below), he stopped visiting me to check on my condition during my remaining 11 DAYS IN THE HOSPITAL and, instead, sent underlings.
- I was told that I could eat a steak the day after my surgery. Well, I could not. Why? Because my colon was still impacted. Why didn’t anybody tell me that I had a long road ahead? Did they not know? They should have known and, if they did know, they should have told me. I ordered food but could not eat it all and was so nauseous I had to be given nausea medication intravenously. I was producing only liquid stool despite all the medication I was taking. After they took the first CT of my abdomen, they saw all the backed-up stool throughout my colon. This information was available to them via my May CT and MRI scans. Was no one paying attention? So, in the middle of my hospital stay, I was put back on a liquid only diet. Do you know how scary that was? Then, the next day I was told I could eat again. I felt like no one knew how to resolve the problem but everyone was getting increasingly desperate. Then, new medication was added to my bowel regimen.
- A physician assistant told me that they were going slow with my bowel regimen because I had just had surgery and that they would be more aggressive depending on how things developed. That same day, a doctor told me that they were being very aggressive with my bowel regimen. So was it slow or aggressive? It could only be one. I did not know who was right and who was wrong or what was happening. Again, scary. I had little confidence in my care at that point.
- One morning, I felt the need to go to the bathroom and rushed to the toilet. I produced a stool. I was in a total panic. I had been told that the rectum/anus area had been closed off. So how could I go to the bathroom? A nurse came to my rescue and told me it was normal. A physician assistant then explained that I had produced a “remnant”. Why wasn’t I told that I would likely produce a remnant so that I would be prepared and know what was happening to my body? NO ONE TOLD ME ANYTHING ABOUT THE POST-SURGERY RECOVERY PERIOD.
- I asked to speak with a doctor and one was sent to see me. I told him that I had been given no information about what to expect in the post-surgery period and that I needed to be informed. He defended the head doctor telling me how busy he was, etc. to which I countered that the doctor had visited me three times and spent his time with me asking me about social issues rather than discussing my medical condition or telling me what to expect or about problems that might occur (i.e., stool remaining impacted). Instead, it was all best case scenarios. I explained that I needed to know downsides as well as upsides. He listened and answered my questions but I felt that he was displeased with my telling him what I thought had been done poorly or could have been better. My goal was to have my needs as a patient met. After that conversation, the head doctor never visited me again. My relationship with the team also appeared to be negatively affected.
- I was visited by teams from different departments. The information that I received from the different teams on the same topics was sometimes different.
- No doctor was watching my medication. I was being given a heparin shot three times a day. A nurse told me that the shot was typically given to bedridden patients to prevent the formation of blood clots. I was forcing myself to get up and walk the entire floor multiple times a day. So I said I did not want the shot because I was active not bedridden. They stopped giving me the shot. Well, it turns out, that here is an extremely high risk of lethal blood clots in patients my age following bowel surgery regardless of their activity level. I went for days without a heparin shot and would have continued to go without it had I not had an entirely unrelated conversation with a doctor about my at-home care that included my giving myself a daily shot to prevent blood clots. This led to my raising the issue of the heparin shots. I then started taking them again. SCARY. If a doctor had been watching the medication I was or was not taking, I should have immediately been notified of the importance and need to take a heparin shot.
- I was asked too many times about what I wanted. The first time it happened, a physician assistant asked me if I wanted an iron supplement intravenously prior to surgery. How the hell would I know? I told her that if the doctor ordered it, I would take it. She said that it was her recommendation. Well, I’m not in a position to evaluate her recommendation. I’m not a doctor. So I declined. On another occasion, I was asked if I wanted 250 ccs or 500 ccs of the nausea medication. How would I know? What’s a cc? The next day, someone else told me that 250 ccs would not stop my nausea. I needed at least 500. Yet another person told me that the nausea medication slows the bowel (so I declined it that night and suffered tremendously) while the next day another person told me that a different type of nausea medication slows the bowel, not the type I was taking. ???!!!???
- I was asked if I wanted more pain medication of a different type which was allowed but which I had not received. I declined but did not know that the substance was an opioid. It occurred to me to ask if it was an opioid and I was told that it was (I should have been informed that the substance was an opioid before being offered it). When I met with my colostomy nurses, they told me that I could not have opioids because they slow the bowel and it would be bad for me.
- One of the teams sent a young doctor to see me every morning for a period of time. She was completely and utterly ineffectual. She could not answer any questions and spoke in generalities. She had a terrible bedside manner, evincing little care or concern and making it clear she had other patients to see. She typically started the conversation by asking how I was feeling and then asking me what a previous doctor had told me. Eventually, I told her to read the notes or ask the doctor herself. It was ridiculous. I was later told that she was a 1st year, summer resident. They shouldn’t have sent her to me. I was in the hospital for 2 solid weeks. I was not a bread and butter, run of the mill case. How many people after a basic colostomy procedure are stuck in the hospital for two weeks? Later, they sent a doctor in the afternoons who was equally ineffectual. He came two times. The second time he came, he said, “What can I do for you?” Those were his first words. I responded, “I don’t know. Can you do anything for me?” He said, “No.” I said, “OK then.” And I turned away.
- The doctors typically asked me how I was doing when they met with me. They rarely told me how I was doing. Maybe they didn’t know. Deep into the two week stay, I started to ask them to tell me how I was doing. I needed feedback. It was a very strange “team” system with minimal and often conflicting information.
- My oncologist never personally checked in with me during my two week stay after the first day or two when his on-call/rotation ended. Not even a quick phone call.
- The first time my colostomy nurse gave me an enema, she poured 500 ccs into me. Out came 400 ccs. She was not pleased with the results. The outpouring didn’t indicate stool being discharged. It was just the enema fluid mixed with some stool. Yet the next morning, a member of one of the teams told me that they were ready to discharge me immediately because I had had an output of 400 cc’s. Obviously, his team did not analyze the result correctly and did not understand what had happened. I told him what the colostomy nurse had told me. He disregarded me but the team later changed its position and kept me in the hospital.
- The doctors started throwing everything at the problem regardless of its impact on me physically. I stated explicitly that no one was taking me and my body into account. They were just heaping medicines and enemas on me and my body was overwhelmed. They continued to heap medicines and enemas on me.
- As stated, the two teams became increasingly aggressive in their attempt to dislodge the stool from my colon. They gave me a substance to drink and did not warn me of its possible effect on my body. I experienced the most severe pain of my life – worse than any of the pain I had experienced prior to being admitted. I did not even know that that level of pain existed. I tried to push the nurse help button on my bedside but was in such pain I could not find it. I called out but no one heard me. I cried out in pain. The physician assistant who came in while I was in that state looked upon me with complete dispassion. She ordered an abdominal x-ray. The first x-ray was done improperly because it had to be done from the sitting position not the lying down position. So, I had 2 x=rays and double the radiation. A doctor then examined my belly. I was then told that the medication I took forced strong colon contractions and that I would feel pain because the colon is full of stool and the contractions were not moving it. Why didn’t anyone tell me to expect this result or that this result was possible when I took the medication? I was also told that the x-rays taken that night, as compared to the abdominal x-ray taken about 2 days earlier, showed no movement of the stool.
- Fast forward to the day before my discharge. Two colostomy nurses gave me two enemas. One of the nurses was scheduled to come back the next day to give me two more. The next day (the day of my discharge), the doctors ordered two more enemas. That one colostomy nurse took the time to review and evaluate my file and compare my x-rays. She found that the x-rays taken two days apart prior to the enemas DID SHOW MOVEMEMNT OF THE STOOL. She did not feel I should be given any more enemas. I trusted her completely. I believe that the colostomy nurses had my best interests and only my best interests in mind when they made their recommendations. She went beyond her duties by reviewing my x-rays. So what were the doctors and the physician assistant thinking/doing when they said the x-rays showed no movement? Again, conflicting information. The doctors then agreed that I should not have the additional, two enemas and I was released.
- The day I left, I told one of the teams about some of the issues I had, from a patient’s perspective, about the team approach. The problems I identified were described by them as “messaging”. You know, I really hate this new bullshit professional lingo. It’s not “messaging.” It is saying contradictory things or saying nothing at all and not preparing the patient for what’s about to happen to her body.
WHAT A NIGHTMARE!!!
Here’s a nice thing. The first day I arrived in the hospital, my nurse was a lovely young woman who made me feel at home and truly welcomed. When she gave me that horrible COVID test, she told me to “go to a happy place” which actually helped. I really appreciated her. She was my nurse on my last day too and she was just as great. Instead of sending me downstairs in a wheelchair via hospital transport, she took me down herself. I told her how great she and the other nurses had been and she said that it was easy because I was an easy patient. She said that she’d never forget me because she was leaving the hospital for a new job and a new city and that I would be her very last discharge there. I told her that her taking me downstairs personally meant everything to me and that I would never forget her either.
On a somewhat lighter note, as you know, I have lost a lot of weight. It has come off every part of me but no where more so than my tushy of which I have no more left. It is very disturbing to see. I need to gain the weight back. Never in my life have I so much wanted poundage to be healthy and look pretty. My version of sexy/pretty had been jeans falling loose at the hips. Now it’s a full booty. I want my booty back.
Of course, none of that will mean anything if the cancer kills me. So, first life. Then, booty.