Living with Gastroparesis

So, it has been a long time. Many things have happened. That is, in part, why I haven’t updated. I didn’t want to post about the new procedures I was going through until I knew if they were helping at all. I wanted to have some sense of closure. Not as though the closure meant I had finished treatment and no longer felt sick, but that I was stable. It has been only until now, where I feel I have reached that point again.

I apologize in advance, for the long post, but I wanted to get caught up so I can continue with updates more recent.

My gastroenterologist (GI) was at a loss when it came to managing my decreasing motility of my large intestine. I had to visit the ER at least once a week due to intolerable pain. The x-rays taken there, all showed the same picture and over time, my doctor was able to see everything over a large time frame. It was then that he realized the severity of my lack of intestinal motility. After we ran out of options he was able to offer, my GI went searching through his co-workers and found my new interventional radiologist (IR), Dr. Osnis. It was then that I was presented with the c-tube treatment plan. This is the first time I had ever heard of a c-tube, or a cecostomy tube, and I usually know quite a bit about all options for any digestive problem now that my motility and paralysis is progressing.

The other posts I have blogged here, show the detail in research I do in order to fully understand the concepts, procedures and the life I would live after starting/completing treatment. I stress the importance of almost obsessive compulsively researching when it comes to your health and illnesses/diseases. You must NEVER put all of your faith and trust into any healthcare professional. After all, they are people too and people make mistakes and they can’t be expected to know everything. Placing medical caretakers on some sort of pedestal can seriously compromise your health and be potentially fatal. An example of this will be given later. Yes, it happened to me very, very recently, through no fault of my own.

I think the last time we all talked was when I was in the middle of attempting to control my lower digestive system with a c-tube, or tube placed in my cecum. Wow, that was way back in August of 2012. So sorry it has been so long. Anyway, it is the same tube concept of a jejunostomy, just placed in a different area (the cecum; the first section of the large intestine). I had a long tube with a continuous drain placed first. As with all other tubes, the longer tube was placed first to establish a healthy tract built up of scar tissue. This assures that the tube, should it become dislodged or otherwise dysfunctional, can be easily replaced. It also helps reduce any pain that might be associated with manipulation or tube movement.

I agreed to the c-tube and had it placed through the standard outpatient procedure associated with any tube placement. At first, the long c-tube attached to a draining bag, was working really well. I was seeing results. The drainage bag was filling with air on a constant basis. This was precisely the purpose for which it was placed. But then, it didn’t seem to be working. I became afraid. I have been here before, the place where you know something is wrong but can’t produce evidence that would support your feeling. I made many visits back to my IR to have the tube checked and each time, it showed the tube to be functioning correctly. They pushed contrast through my tube that would show up on a special type of x-ray. I saw it myself. But when I’m home, nothing comes out of my tube. The draining bag was sutured open. The valve wasn’t broken. Why wasn’t it working?

I stopped getting relief that the tube was placed to offer. The tube my IR placed was only a 8.5FR (FR = French, a unit used to measure the size of tubes = How tubes are measured). I didn’t understand why the tube was so small. For as big as my distended colon was (10cm at the biggest!), I felt the tube should have been bigger. Once my tube site and internal tract healed and was strong enough to withstand a tube change, I requested my long tube be switched out for a low-profile tube as well as a larger tube. It took a few weeks for my tube that needed to be specially ordered, to be available for placement. I received a 16FR Mic-key button to replace my 14FR tube. I thought that with a shorter tube in length, on the inside, coupled with a bigger tube, I would find a constant and greater relief in my symptoms. This, I believe, is where I left everyone last time I blogged.

I began my routine from before, visiting the ER every week for abdominal pain. The x-rays looked just as bad as they did in the past. Throwing his arms up in the air out of frustration, my GI referred me to my new colorectal surgeon. This man is amazing. The best bedside manner I have ever experienced. He treats every patient like his own child. This has been said before about so many other physicians but in this case, it is the truth and best way to describe this man. He knew that if my GI, an extremely skilled and knowledgeable doctor, sent me to him that my GI had to be very desperate and concerned. Turns out, my new colorectal surgeon would be the right person to offer the right treatment. Looking back now, I could not be happier with the decision I made to agree to the proposed treatment/procedure.

When I saw my surgeon, Dr. Bastawrous, he told me that he would NEVER suggest a c-tube. He told me that a c-tube is by far the worst idea. I wish he was around when I was having the c-tube placed. I could have bypassed a lot of pain and a few surgeries. He didn’t know. In any case, he said that given all the x-ray images, symptoms and other illnesses, there was really, only one option left. An ileostomy.

There were two different types of ileostomies that we were considering and in the end, I decided to do what was less invasive. An open ileostomy. Exactly what this is, how it works and what different types of ileostomies are available will be discussed in a new section under experiences once I am able to get all the information collected. I think people forget to investigate all possible options when it comes to treatment. They are blind to those treatments that are least invasive. As you can see through my experiences and blogged entries, I started with the least invasive treatments from the very beginning, giving them a fair shot. First I started with simple diet changes. I moved from diet changes to medications to temporary feeding tubes to permanent feeding tubes to PICC lines to ports for TPN to c-tube to ileostomy. As much as the c-tube did not work, it was still worth my time to investigate and in some instances, try. Even the type of ileostomy I have isn’t exactly permanent. In some future situation where I begin to regain the ability to eat orally, my ileostomy can be reversed. While that isn’t likely to happen, taking out all of my large intestine is a huge shock to the body anyway. Leaving it in place makes sense and being able to reverse it is just a bonus.

Come October, I was taken in for an ileostomy surgery where my c-tube was also reversed during that time. My appendix along with the cecum of my large intestine was removed and the stoma for my ileostomy created. My large intestine was completely physically disconnected from any of my organs. Nothing was allowed to go through it. Everything was to come through my ileostomy. It was a very large shock to my life. I thought I was prepared through all the research I did and conversations I had with other patients that had already had an ileostomy done. But the truth is, you can’t be completely prepared for something that is to change your lifestyle forever. Usually the surgery puts you in the hospital for around 3 days. I had some complications that kept me there for over five. The pain was controlled and honestly, the pain wasn’t very high given the procedure that is done. You know, a large hole in your abdomen that is kept open with part of your small intestine pulled through. Yeah, things will hurt for awhile. Any surgery comes with pain. Sometimes you just have to knuckle-down and take it.

Thanks goes out to the many GP friends I met through Facebook, that came to visit me while inpatient for my ileostomy. Thanks go out to everyone who continue to offer encouraging words. You guys rock! I love you all! We must get together again. Preferably NOT in the hospital =)

Once the shock phase ended, I’ve been living with my open ileostomy since then. Like I said before, it was one of the best decisions I have made and that has been presented to me. That is, beside my port and TPN that saved my life and allowed me to get to an acceptable weight (with any illness or procedure, my weight drops back down into the red zone) and stable health. I haven’t had ANY complications, infections or pain in or around my stoma/ileostomy. Aside from a few leakage problems that were due to products that weren’t right for me, I’ve been living relatively comfortably. The products that I have found to be best for me, are the ones made by COLOPLAST. I’ve tried all of the HOLLISTER products (one-pieces and two pieces with their associated pastes and putty) with no success. All hospitals that I’ve been to have only offered Hollister products because they are not a financial burden (e.g. cheap). Once I got home, my HHC that is in charge of my ostomy orders, supplied me with Coloplast products.

I wear a two-piece system with a one-click bag that locks on to the wafer or backing. I required a specific setup because of the location of my ostomy site. I have that gastric neurostimulator still. The battery was recently replaced back in February 2013. The battery sticks out of my abdomen. You can see it and also feel it. I didn’t know for sure, if the ileostomy could even be done because of the location of the stoma and the location of my battery for the gastric neurostimulator. Somehow my surgeon, the amazing colorectal surgeon, was able to maneuver around my battery in order to safely perform the ileostomy. Even still, the stoma is very close to the location of my battery making any ostomy bag system difficult to stick to my skin and form a tight seal in order to prevent leakages. It took me a few months to figure out the right placement, the right wafer size and the use of other products to keep in what vents out of my ileostomy. Ever since then, I’ve not experienced any problems with my ileostomy (or anything associated with my ileostomy).

My ileostomy is doing what we all hoped it would; vent gas and material that would otherwise obstruct my large intestine until the pain was so intense I required an ER visit and at times, hospital stays. Random imaging studies confirmed the success of my ileostomy procedure. And for that, I’m grateful. One thing that keeps me out of the hospital is well worth it. The hospital can help me but sometimes, it can hurt me. With a weakened immune system and nurses who do not practice correct sterile practices when it comes to my central lines, hospitals can be dangerous. Even standard and simple outpatient procedures/surgeries have me needing observation in the hospital but I am sent home in order to not make me more ill.

Fast forwarding through the last months of the year 2012, we come to the end of January/beginning of February and I notice a dramatic increase in my level of nausea. A quick gastric neurostimulator interrogation showed the battery to be completely, 100% dead. My GI was just as shocked as I upon finding this information. It should have lasted a lot longer. My stimulator was set at the maximum settings, so we attributed the draining of my battery to be so quick. In order to get my stimulator back working again, I had to undergo an outpatient surgery to have the current battery switched out for a new one. My surgeon went through his original incision to place the battery and I was sent home the same day with very little discomfort and pain. Much like the first time I had the stimulator placed.

Pictures from my first surgery to place my gastric neurostimulator:

Not soon after my neurostimulator battery was replaced, I went back into severe septic shock. I ended up going to Evergreen Hospital through the ER. I had to go to Evergreen because it was the closest and didn’t require an ambulance ride to get there. Evergreen wasn’t my first choice of hospitals to stay in due to previous experiences in the ER, but I wouldn’t have survived a longer trip. As with all other situations involving sepsis and septic shock, I was very much unaware of how sick I really was and can’t remember what happened during the long hospital stay. I am always better off in the end, anyway. The seriousness that comes with sepsis is very real. You are in danger of not making it through another day. The ignorance you experience truly is bliss.

For those who have never been in such dire circumstances must know a few things:
1. Those who appear unconscious can in fact, hear you.
2. Those who appear unconscious also know when you are with them.
3. When those who are close to death do not feel pain.
4. Those who are close to death experience peace that cannot be achieved anywhere else on Earth.

I know these things to be true from when I have been in a situation where I was unconscious and close to death. I heard my doctors and family when they were around. I knew what they were saying about me even though I was unable to see them or communicate with them. I felt a sense of peace that made me unafraid of what might happen next. I was literally a breath away from death and it was in that moment, in that choice, where I had to decide my future. In my level of unconsciousness I heard my nurses ask me to breathe. Having zero desire nor the feeling of need to breathe, I was not afraid should I choose not to breathe. My job here on Earth was not finished; I took a breath. It was at that moment where I left death behind and never returned. This happens each time I’ve gone septic. It is no joke.

The sepsis I experienced shortly after my neurostimulator battery replacement surgery was due to a urinary tract infection (a result of a neurogenic bladder) that went riding through my blood and made its way to my lungs where it settled and caused serious pneumonia. Because it was not based in my port-a-cath, Evergreen doctors and nurses were able to save my port. They added a jugular PICC line with three lumen to use along with my port-a-cath lines in order to infuse a wide variety of antibiotics, fluids, TPN, pain medications, sedation medications, etc. My jugular line was placed bedside while in the ICU. During the first placement, it did not land where it should have landed. After an x-ray confirmed this, I had to undergo a second line placement on the other side of my neck, in the second jugular vein. This time, it found the right way to my heart. I remained in the ICU for a few weeks and finished out my time there on the main floor. Evergreen Hospital was super good to me. I couldn’t have asked for better nurses and hospitalists. I was lucky. They saved my life. A life that has been threatened a few times before.

After my sepsis attack in February, I found myself yet again in the hospital in the beginning of March. The reason for my stay this time is very private and that is really all I want to say about it. If you are having serious problems getting control over your symptoms, send me a message and I can give you another thing to try.

Now I have been placed within a “care circle.” Basically all of my doctors across two of my hospitals came together to discuss my treatments, illnesses and concerns. The goal of this care group was to have one person who would receive all discharge notes, referrals and charts. This allows all doctors to be on the same page when it comes to treatment. Everyone is aware of what everyone else is doing. My new PCP and her nurse took on the challenge to be that person; the person who will manage the actions of all doctors and nurses, both in clinics and through my HHC (home-health company). My PCP belongs to VM (Virginia Mason). My neurologist, cardiologist, hematologist and gastric neurostimulator surgeon all also belong to Virginia Mason (VM). My gastroenterologist of five years and counting, second neurologist, colorectal and general surgeon, pain specialist, and interventional radiologist all belong to Swedish Medical. Swedish Medical Issaquah is considered my “home hospital.”

My latest hospital stay and septic shock episode involves both of these hospital systems. One day not long ago, I noticed my port site to be extremely sore. It is never sore; so I called my HHC (Walgreens Infusion and Respiratory Services) to talk to the IV nurse on call. The nurse I later talked with wanted to come over and check the port site and see if it needed to be re-accessed. Given the amount of pain I was in, the size of my port, the fact that my nurses had to use the same hole to access the port each and every time because it was so small, my nurse did not feel comfortable re-accessing and urged me to call my doctors in the morning to see if they could check it out. The only person I was able to get a hold of that day was my PCP nurse. She suggested that I come in to see her IV nurse for opinion. I did and that nurse suggested I have a new port placed. Following their judgment, I had a PICC line placed for use while I waited for a new port surgery the following Monday. Monday came and I went into surgery at VM for a new port. This was the first time I’d be getting a port from a surgeon at VM (Dr. Neuzil). My last ports were placed by a physician at Swedish. I assumed the surgeon at VM knew what he was doing.

I went home and all night I was in an amazing amount of pain. I’ve had MANY ports before and none hurt like this. I thought maybe I was just being a baby, so I took some Advil and went to bed. I woke up that night more times than I could count. I woke up out of pain. When my husband woke up, I desperately asked for an ice pack, pain medication and my normal medications. I expressed my level of pain to him, but there wasn’t much he could do at the time. After several hours of no relief, I began taking my temperature. I watched as it increased from 101 to 102 to a high 104.3. I started calling all of my doctors and HHC nurses. No one was in the office. Not one person from my “care conference.” I tried to do things by the book. I finally got in contact with my surgeon’s office after my anesthesiologist from the day before, called as per routine. I called his office right away for direction. I didn’t want to call my husband out of work in the off chance the ER would write me off, wasting my husband’s work day. I didn’t have many friends in town. The desk clerk at my surgeon’s office gave medical advice without question, all of which was completely and absolutely wrong. Out of frustration, I called a friend as a last resort for a ride to the Emergency Room at Swedish – Redmond. I still measured at a 104 in the ER and so they administered the first dose of my IV antibiotic, sent a picture of my angry port site to my IR at Issaquah and administered Tylenol in hopes that it would reduce my temperature.

Here is the picture I took of my very angry and contaminated unaccessed port-a-cath site before I had it removed via emergency surgery at my home hospital:

Infected port site

As usual, I had to be transported to the Swedish hospital in Issaquah via ambulance.

There was question as to whether or not I should go to the hospital that did the initial surgery. Of course I didn’t feel comfortable going back. With my port being infected not 24 hours after placement only meant one thing; it was contaminated before it was even placed. My hospitalists all told me that in their 30 years of being a doctor, they’ve never seen something like that happen. Well, I guess I’m just lucky! As soon as I arrived at the hospital, I was wheeled back into the OR for the emergency surgical removal of my new port. My anesthesiologist and IR team where there waiting for me way after hours. They were amazing. I came out of surgery with one very large hole in my chest where the port and some unhealthy tissue was removed. The hole was so deep you could slip in a whole silver dollar. It also hurt like nothing else I’ve felt. The wound was packed and then dressed with a wet to dry dressing many times a day. I remained in the hospital for a few weeks. Once the contaminated port was removed and sent out for testing, my temperature broke and I began feeling better.

I returned home to continue treatment with a new company, Providence Healthcare, for wound care where they would dress, pack, and re-dress my wound every to every other day. I won’t go into detail but this activity was extremely painful and slow.

My deep wound could not be sewn up in fear of trapping in even the most common of skin bacteria. This would surely cause the formation of an abscess and that would be entirely counter-productive. I also went home on IV antibiotics, as is usual for sepsis discharge. A month after I finished my IV antibiotics, I would be able to have a new surgery to replace my last two ports. This was done just last Tuesday. I was referred to a new surgeon by my GI doctor. He, Dr. Plaskon, is a general surgeon. He also has wonderful bedside manner. I never lost trust in his abilities as a surgeon. I knew I’d be going into surgery with an open wound, that same open wound that nearly killed me. I was still afraid I would have infection problems with my greatly increased risk of infection from my last few surgeries and open wound. I was set to have my port surgery a few weeks back but they delayed it by a week to allow for more healing of my wound. So Tuesday, May 14th, was the vindicating surgery day where I would attempt to, with the help of my surgeon, fix all that was taken from me a month ago. I wanted to forget. I wanted to erase the day that the VM surgeon nearly took my life through his ignorance and lack of skill. He set my progress back by so much, but I couldn’t let it keep me there.

I was just discharged from my wound home healthcare. My wound has closed. It is scabbed and will leave a large ugly scar. But, scars are like badges of honor received after fighting for your life. I will miss my wonderful wound care nurses. They did everything they could to ensure my wound would safely heal and that I was mentally and physically comfortable. They went above and beyond anything I could have asked for when it came to something so scary as my open wound. They were always in constant contact with all doctors involved and even helped me get the relief I needed when I experienced pain. Ever since my Tuesday surgery, I’ve been extremely emotionally sensitive. I truly appreciate every day given to me and everyone in it. I’m frustrated with my lack of energy and how I’m still restricted by that energy. If I push myself beyond the invisible line my body has, I crash. I become sick. I experience intense migraines. I want to sleep but can’t. So I just hope. Sometimes that’s all you can do. Hope to sleep; hope to live; hope for consolation that needs to come.

Saturday, February 11th, 2012, started off like any other day, but it was not to end like any other day and has forever changed me in ways I didn’t think possible. I wasn’t really feeling myself all day. With GP, who really does have a normal day? What is normal? I was still trying to figure out that very question when I became very abnormal. I have issues controlling my temperature so being insanely cold is really not that out of the ordinary. The uncontrollable and massive shaking attacks that happened that night before bed probably would have been my first clue that something was horribly wrong. Again, what is normal and what requires a doctor appointment? I bundle myself in every single blanket, haul the personal space heater upstairs to the bedroom, set to high and also sleep on a heating pad set to high and attempt to sleep off whatever it was that was making me feel like crap.

The night was very surreal. I would wake up but feel very weird, delusional and disconnected. It was 3:00am during one of these awake moments that my loving husband checks on me. He realizes right away that I was burning up. I’m not entirely responsive but adamant about NOT going to the ER for what is probably just the flu, especially at this time in the morning of February 12, 2012. He is not happy about it either but takes the stand that if something needs to be done, just get it done and over with. Little did he know that many somethings needed doing and it was going to be awhile before they’d be over with. He runs downstairs to get the trusty SpongeBob thermometer and finds out that it read a very convincing 103.6 (both times). That thermometer never works quite right and if it was reading a temperature, then more than likely, the actual temperature was much higher. He says to me that we have to go to the hospital right now. Ugh, I roll over and refuse. My energy at this point is rather pathetic so it doesn’t take much to convince me to grab what I could and get in the car for a ride over to the Redmond ER. *Side note: we will never again be visiting the Evergreen Hospital due to their enormously high error rate when it came to diagnosing and treating patients. So we will take the extra 15 minutes just to be in the Swedish network with doctors we know and trust.*

As I walk in bundled in my favorite blanket, half-awake and probably looking a little like death, the receptionist, upon seeing me, simply says, “Oh no.” Not exactly the words you want to hear and definitely not something that conveys any sort of positive attitude towards this downhill situation. At 3:00am the ER is not all that full and we are seen immediately, stats taken, blood taken, IVs started and the decision is made, though not as hastily as I would have thought they would be, given how obvious it is that I was septic from an infection in my port, to transport me via ambulance (yay, my fourth one) to my favorite hospital, Swedish Issaquah. My temperature continues to rise and my self-awareness continues to decline. I vaguely remember the ride to the hospital, my arrival to the ICU and the number of tubes they placed (urinary catheter, NG tube for suction – my stomach began to fill with fluid at a rate that had doctors overly concerned that I may aspirate that fluid along with it forcing me to use more than necessary energy just to breathe, breathing tubes and many PIVs for fluids, pain medication, broad spectrum antibiotics, etc.).

It would be three or four days before they would get a correct identification on the infection quickly taking my life, and for the antibiotic to bring me back from an almost coma-like state. I remember during the first few days, that I was not breathing well. I was sleeping but in my sleep I hear the nurses telling me to take a breath. For me, at the time, breathing and not breathing were the same. There was no urge to breathe and because of that, I would stop breathing periodically requiring nurses in my room 24/7 just to tell me to breathe. I was in such bad shape that the doctors discussed placing me on life-support. Life-support…in one single night I went from one extreme to the other. I was very unaware of how bad things were, who all was involved, though I do remember Dr. Patterson being there – love his accent, so I never experienced fear, the fear I’d lose my life after so many years I spent fighting for it.

The fog lifted a few days after my mom arrived. She jumped on a plane that same day Victor called her and informed her that I was not doing well. From his voice she could tell things were desperate. I will be forever grateful to have had her there with me. She fought to get me the things I needed. It was the first time I had someone else in my room with me all day. None of my family lives here and Victor has to work. I think it was Friday of that week that I began to stabilize. Well, they had gotten me on the right antibiotic and my temperature lowered to normal for the night. Waking up was a different story. I had begun to spike another high fever, my O2 stats were dropping as my heart rate escalated above 170. I was shaking from pain and fear. NOT ONE NURSE OR DOCTOR responded to my help button. I pressed it several times. Each time I’d get someone talking to me, “OK, I’ll send your nurse in…” and then another 15 minutes go by, “OK, I’ll send your nurse in…” 30 minutes go by and I’m getting worse. Scared to death I’d die alone. It was too early for my mother and husband to be by and my doctors were not yet doing their rounds. It was a half-hour after nurses changed shifts so I know they were around. But they were not by me. I desperately called people just to talk to someone, anyone so I wouldn’t be alone should I die. My husband’s phone is dead, my mom doesn’t answer, but my GI does. I’m in complete tears and hysterical by this moment and told him what is happening, he asks, “NO ONE is in your room right now?” Nope, not a soul. He told me he’d call the hospital. At that point, while waiting for Dr. Patterson to shape up the nurses (Hello, I am in the ICU – why are you all taking so long in the first place!), I called my dad. He is at home because of the flu and wouldn’t be allowed in the room anyway, even if he had made the plane trip with my mother. I told him what had happened and how scared I was and that I didn’t want to be alone. I wanted to talk to someone. He couldn’t handle it. He told me that everything was going to be fine and in that, I found enough peace to end the conversation with him as it seemed to be entirely too much for him to handle, being so far away. I took my camera and made a short video for insurance purposes to prove a severe lack of ANYONE in my room or even at the nurses station which I seemed to have a straight shot of (because those darn nurses NEVER close the darn doors!). It is slightly upsetting but I offer it here. NEVER let your ICU room be void of nurses if you are in shock. It really is common sense but for whatever reason, today, common sense failed them.

*Enter Nurse From Hell – AKA: Crystal* My husband, mother and service dog, Ellie, had already arrived to help calm me down but in strolls Crystal. For whatever reason, before she even spoke to me, she had some sort of resentment towards me. She had no business being a nurse, and an ICU nurse at that. To be a nurse requires feelings, sympathy, empathy and a general care for the well-being of any human that walks through your doors despite their shortcomings or mistakes. She possessed nothing of the sort.

As she walks in, she informs me that the previous x-rays they did last night of my abdomen (yay for paralytic ileus), my PICC line was noticed to be out of place, dangerously close to the apex of my heart (where one of the pacemakers is located and if tampered with could cause the heart to stop entirely), and they could not use it. She then stated that she would be placing another PIV to allow for fluids and medication while we waited on the PICC line nurses to assess and fix my line. Fine, do it – I am in clear need of morning medications (including the life-saving antibiotic) and fluids. Crystal notices Ellie quietly laying in the corner behind Victor’s chair. I’m watching Crystal as she places the WORST IV EVER.

How she managed to find that tiny little vein is beyond me. I can only attribute it to her skill and my clenched fist. Fact is, the vein is small and my veins are already notorious for blowing (infiltrating) and she thought she could run everything through that little PIV, including D10. D10 is basically TPN minus the lipids and a few other things. It is thin enough to be given through a PIV. However, even if it is thin, my vein is still too small to handle it and as soon as she runs the pump, I scream out in pain, crying and pleading her to stop the pump. Slowly she does so and I, not being ignorant in the area of IVs, TPN or the tubing, quickly clamp it off. She gives me the stink eye and tells me not to touch my lines. I tell her then to clamp it and flush it because it is currently burning through my tissues. Crystal simply says, “I’m just following the doctor’s orders.” I don’t care what she is doing, I’m the patient. She clamps the line and flushes it and continues to push through the rest of my medications, one including my pain medication. Before she leaves, she tries to be all stealth-like and flips on the D10 pump while I am distracted. Again the burning, stinging pain comes back. I turn to her and ask, “Did you just turn the D10 BACK ON?” She nods. I said, “well you best turn it off because the pain is making me want to chop off my hand.” “That’s a bit exaggerated,” she says. Oh no you didn’t. I reach over and clamp it myself and then demand she flush it before she leaves. And, she does…so forcefully I notice the pain returning. I yell at her, “not so hard!” “This is just as hard as when I pushed all the other medications,” she lied. By this time I’m hysterically crying AGAIN, in pain and shaking from her mere presence. This has my service dog all upset too, and rightfully so! She is there to protect me. The nurse finishes flushing and leaves the room.

My mother and husband do what they can to calm me down so as to not die from a heart rate that is way to high. The charge nurse comes in and informs me that my service dog needs to be removed from the hospital. He states that a service dog can be removed from a hospital if the presence of the dog makes his staff uncomfortable to the level that they cannot perform their work. He stated that a nurse has complained that my service dog, Ellie…

whose sole purpose in life is to be happy and share that happiness with others, showed her teeth and growled at Crystal. Ha, never heard such a load of crap before in my life! Clearly this is her way at getting back at me for doing um, nothing! I did nothing and now I have a problem and she goes along her merry way. Before the charge nurse leaves I tell him I want a new nurse. He says, “I’ll see what I can do.” “Um, no…you misunderstood me, GET me a new nurse,” I demanded. He leaves the room, Crystal comes in and informs me that I have a new nurse. But not before belittling me some more by addressing my mother with the schedule of doctors appointments and tests that will be run that day. I’m not 2, you can talk to ME. I AM THE PATIENT! I still have a write up to do for her. No need for other ICU patients to be tortured by an arrogant nurse who shouldn’t even be a nurse in the first place. She is totally on my list.

The rest of the stay was pretty normal. I was there from February 12th – February 25th. We had some issues with pain management and sleeping medications but overall, things went as they should. My doctor never fails to remind me how close to death I came during my first week there. I was delusional and very much not myself. He said that if I had come in any later, they would not have been able to help me. My husband and the doctors and nurses of the Swedish Issaquah ICU saved my life. On the day of my discharge it was snowing. It was beautiful and perfect. I went home on IV antibiotics that were delivered via drip for another week and a half. I was then to have more blood cultures done to make sure the antibiotic was successful in eradicating the infectious bacteria. It wouldn’t be until a month or more later that I would receive permission from my wonderful infectious disease doctors to have my port replaced. And I did.

The monkey is its protector. This port placement was unlike any other. It meant something to me, I beat the odds and toughed it out. Simply stated: I SURVIVED!

Well – some of you know of the interesting string of events that I experienced over the past few weeks from Facebook status updates, but even Facebook was slightly censored. It all started out one night with an extremely bloated belly and lack of any bowel movement for the past few days. My husband had made the comment a few days before that I was bloated. Gotta hand it to the guy to have the guts to say something like that to his wife before even she noticed. Taking his observation for what it was worth, coupled with my own, I made a night trip to the ER at Evergreen. Mistake #1.

How NOT to be treated in the ER

I arrive at the ER with my husband and quickly get a room because they were not particularly busy that night. Bonus. I hate crowded ERs because those with chronic pain and chronic illnesses like us, always get the backseat when it comes to placing patients in rooms. Even the guy who drove HIMSELF to the ER, not doubling over in pain or wearing sunglasses or a washcloth on his head – complaining of a migraine – gets in over me, crying in pain, holding a throw-up bag with an extremely fast heart rate. Sure, let him go – he looks to be in a much more severe situation that cannot wait. —-Anyway—- we get a room as usual and I prepare for the normal battery of tests I thought were required for every ER admit. You know, bloodwork, x-rays, a physical exam… Nope, according to my attending, all those are for people in real pain with real issues. He walks in, with his face in my chart, sees the number of times I have been in the ER (yes it has been a lot but that’s because you morons can’t figure out how to control my pain or cure my disease! – hence my need for a pain doctor who he should have called but no, again, that’s for real patients) and he also sees my list of medications which contains ONE active narcotic given to me by my PAIN DOCTOR – Nucynta.

Side note: After the first two weeks of hell (mostly mental as it seems to screw around with your emotions and state of mind), it works wonderfully. No complaints after I’ve been on it for about 2 months now.

He takes his nose out of my chart and says simply this:

Go home and take a bottle of magnesium citrate. You are most likely constipated from all the narcotics you are on. Otherwise, you’re fine

Um..that is about the point I started crying in frustration and absolute rage. He didn’t even LOOK at me. Had he simply looked at my belly and listened for bowel sounds he would have noticed, without an x-ray, that something was wrong. I asked for an x-ray after he left because I was in absolute shock with my mouth open and paralyzed body. The nurse rudely says, “oh no, he won’t do that.” She hands me the bottle of magnesium citrate and I’m like – sorry, I don’t want it. If you have been to ERs enough you know what actions show the most rudeness back. Sorry but if you want to be rude to me, don’t expect me to take it. Not this late in the game. She gives me an ugly look and then hands me the typical discharge papers describing what constipation is and how to take care of it – proudly printed from the Internet. I said to her – take it back and shred it for me please, I won’t be taking those home either. Another insult. I’m boxing with both hands here. She gave another evil stare as she says, “well you will have to do that after I leave,” and she walks out with my rejected bottle of magnesium citrate. I promptly throw away their packet of useless information and advice. I’ve been dealing with this too long for there to be ANY information in there that I would actually benefit from. That and I knew it wasn’t a simple case of “constipation.”

How you SHOULD be treated in an ER

I call up Dr. Patterson in tears asking him what to do. I knew something was wrong. He told me to go to the ER he is associated with and to have them order x-rays. He must have called them or something because that is the number 1 first thing they did. If he didn’t call beforehand, than A+ to Swedish ERs. Blood was taken, of course, fluids were started and I might have gotten some IV toradol for my back that is infected, but they don’t know it yet. We wait for the results. I’m exhausted by this point, the emotional roller coaster I was on was enough to knock me out but the physical pain and discomfort kept me awake. How nice. The x-rays came back in record time and they sat us both down together (LOVE my husband for being there as he is often my advocate when doctors fail to listen or believe in me) and explained that I had an ileus of both the small and large intestine. This is not common. My entire digestive tract was frozen solid, paralyzed, not moving. It was a pretty serious situation based on how quickly things moved after that. They knew I had to be admitted to a hospital as the ER I went to is just an ER (it also has doctor offices on the floors above). They asked which hospital I would like to be transferred to and Evergreen was a possibility. Ha, no thank you – I will stay within Swedish as my GI is there and they don’t screw you over when you come in. *note, the ileus was not caught by the ER doctor in Evergreen why? Oh that’s right, he didn’t listen to me, believe me or even do a simple x-ray or physical exam* I got transported to the Swedish Hospital in Issaquah as it is brand new – I’m talking they just opened the patient rooms a few weeks before and I was pretty sure I was the first one in the hospital to even use their pumps. To further ready my departure to the new hospital, they placed an NG tube. Not the normal NG feeding tube. No, this one was for suction and was about as thick as your thumb. They placed with with no sedation and as they advanced this HUGE tube down my nose, I hear it cracking all the way through. Oh it was horrible. Not another tube in the nose!

Throat, ear and mouth (jaw) pain, incoming. They didn’t run anything – they just set it up, including placement of a new PIV for contrast. They refused to use my port. They didn’t want to change out the needle for the kind that handle the contrast. Oh well, like everything else – I let them do their thing until they start screwing up and then I become devil patient.

I slept/rested in my room with my husband as we watched TV until the ambulance arrived to take me back. Victor went home, first, to take care of the dogs and feed them and I told him, since Issaquah is no short drive, he was welcome to stay home since it was so late already (after midnight, easy). Looking back, I probably should have had him stay. I’ve learned lots of things after these few hospital stays which I will sum up at the end of my novel of a post. Sorry =(

The Hospital Stay: Part I

The ride over to the new hospital was my first time in an ambulance. Not going to lie, I always wanted to ride one. Little did I know I’d be right back in one within the next week. Transition from the ambulance to my room was smooth. The room was beautiful, all the rooms there are single and have glass doors that slide open instead of the regular heavy door that opens without you knowing who is exactly coming in to hurt you.

A decorative curtain went all the way across that was usually open just enough to annoy me. What is it with nurses and doctors leaving doors and curtains wide open after they leave? Is that in their job description or do they think that much of themselves to NOT close the door after leaving? Their loss because each time they did, I hit the nurse call button just for them to close my doors (including the bathroom one, which I can’t on my own, and once in bed, I can’t get back out without help. No body needs to see the bathroom. Close the doors, people!

So I get hooked up to IV and TPN feeds (run over 19 hours) and the NG was on 24/7 suction. I’m waiting for my GI doc to e-mail me the x-ray that prompted this long chain of events so I can post it. Out of his mouth, “your first x-ray (I had many) was quite impressive.” Awesome in a not so awesome way. So I had my IV and my TPN but no medicine. It is by now like 1am. They have a list of my meds, none of which I received without asking. And even when I did ask – I wouldn’t get them for about four hours. Constantly clicking the nurse call button and I’d hear, “your nurse is with another patient, she should be done soon” or “your nurse is working down the hall of patients, she should be to you soon.” Any excuse to not get me my medicine, I heard it. I shouldn’t feel bad for asking for my medicine. I don’t care if a patient down the hall can’t keep her moans to herself. I still had the temporary spinal cord stimulator in, and a quickly growing infection. Take it like a man, sister, or I’m coming down there and giving you a real reason to moan and grown throughout the halls of the hospital. My pain was a 10. I NEVER give anything a ten, but this pain deserved it. But when you have an ileus (in my case – two), you aren’t allowed narcotic pain meds and the non-narcotic pain cannot bring down level 10 pain. It is like coming out of a major surgery and not having the proper medications available. Yes I get my gut isn’t moving but you know what? It hasn’t been moving or when it did, it did it sloooowly, I don’t care about it anymore. Take away my pain please!

I did have two great nurses though. They were on top of anything I needed and when I told one nurse I was at a ten when asked, she was shocked and said, “I’m not happy with that, let me see if I can get you something else.” I also had HORRIBLE nurses, one I had the displeasure of having twice! She was the “special” one. When I came home to talk to my home care nurse about what she did, she was in absolute shock – completely speechless. My nurse put Imitrex IM (a SHOT) into my IV. I was lucky to survive that. My head was going to pop. I was like, did you just put that through my IV. Yeah, she says. Yelling now – Imitrex is NOT for IV!!!

I went through the whole week living off toradol and tylenol IV. They were never scheduled correctly so I’d get one after the other and then not get anything for six. Not too bright there fellas. I was also not given my normal medication. With this being my first ileus, I didn’t know what was normal and what wasn’t. Maybe they kept my other meds out to see if it accelerated the healing of my ileus. WRONG. After they messed up with my pain meds and not enough Ativan (again, it is in my charts people!) I asked for IV Benedryl to help calm me and let me sleep. Nope, nothing doing. So of course I’m up all night and manage to get into a deep sleep as my attending doctor crashes in my room, flipping every light switch on, that was available (I had the light blocker shade down to keep it dark (for my migraine’s sake). She shakes me out of my, what could have been, amazing sleep with her LOUD voice of pointless questions, spoken at the slowest pace ever. I’m sorry doctor, surely you understand you just woke me up in the worst possible way, I’m still trying to even understand where I am and what I’m doing, I am not going to be answering your questions. Oh, I am also not deaf nor mentally slow. Stop talking to me as if I was, kthx.

My GI doctor makes it in on Monday (I was there since Saturday night) and he asks are they giving you anything for pain? Um…NO! Nothing. He’s ah well let’s get that fixed. He didn’t offer much but he did what he could without further messing up my intestines. Yes, that’s right – I was without ANY pain medication for a few days with a MRSA infected incision just milimeters away from my spinal cord and a non-functioning gut that just kept expanding as air kept getting stuck.

By now they believe me about my back pain and how I believe it is infected because it soaked straight through my gauze dressing and onto my bed (that never got changed…Ellie sheds, enough said). No one in that hospital has even seen one before so they basically denied any responsibility for it or its care. It would be 2 more days of hell before they finally decide to take it out. It was the most painful thing to have in, due to the infection.

Even from just looking at it bandaged up you could tell it was infected. I, myself, had a temperature of 103 and my back, where the stimulator is taped, was so hot my doctor asked if I had been using a heating pad. It was also very swollen. So their pain “doctor,” the word doctor used very loosely here, came in, ripped off the tape holding down my machine and then starts to pull it out (my leads were long as relief only came from them people placed up near the cervical spine). I asked if he would at least wait for me to get my nurse to push some toradol or something. He laughs, this won’t hurt – it’s like getting stitches out. But it is infected, I said. He says, “no no no, it isn’t infected.” Yes yes yes, it is infected and hurts worse than anything. Is he listening as I say this…no. I should have stood up to him. Let that be a reminder for all of you, do not let nurses or doctors boss you around. Don’t let them do things without you knowing exactly what it is and you come first. I should have refused to turn over on my stomach until my nurse came with pain medicine, but I didn’t. I was lucky that one of my best friends was there to help comfort me as he pulled out the long leads. She also took pictures. Lol, I saw her whip out her iPhone and asked if she was taking pictures of this!? She nodded and I was like, well use my real camera then!

She was such a trooper having to watch that happen and to give me so much comfort. Well, anyway – it was out and I will say that most of my pain was gone and I was finally resting. Then jerk hospitalist comes walking in to look at it. He asks me to turn over so he can “look” at it and I politely refused until he stopped asking and started demanding. So I rolled over in complete agony and he starts poking around. Oh man, so much for feeling any better. Way to mix the pot and stir things up again, Mr. hospitalist. You rock!

They did culture it but it would be a few days before they’d know exactly what it was. They started me on two types of antibiotics and at the end stuck with one, Vancomycin. Days go by and my GI doctor comes to visit again. He sees I still have the NG tube in and insists on removing it. He’s pretty strong because I held it in as best as I could but out it came. Hurts just as bad going in as it did coming out.

With the NG tube out and antibiotics 3 days in, my hospitalist, despite not fixing my pain and not accomplishing any goals due to this pain (standing without support, walking, etc.). I was completely against discharge. I called up my GI again – sorry for calling you all those times, doctor, but you are just THAT awesome – and he said that I could go home any day I feel comfortable with. Well, today wasn’t that day and after a lot of arguing and such, I still ended up being discharged. I had asked for a social worker as soon as I woke up that morning because I felt I was not treated as I should have been treated. She did end up making it right before my discharge papers were made. She was pissed at how I was handled, especially the medication part. I said that I understood if they were short staffed (definitely not the case I later learned) or their nurses just can’t juggle this many patients, but I still do not accept that as any sort of excuse to neglect me. The social worker said that next time I go somewhere to be admitted or even at the ER, find a social worker to be your medical advocate. They can help you and will do anything within their power to keep the doctors and nurses on their toes.

Back Home…it was nice

I get home and my homecare nurse comes by with more TPN (as I was in the hospital when my normal deliver would go out), supplies and my new IV medication – Vancomycin.

I showed her a rash I didn’t find until washing up before I got wheeled out of the hospital. I didn’t think anything of it until I mentioned the rash to her who then called my doctors. They all were aware of me and the infection I had (apparently when something bad happens to regulars, they talk to other people about it) and said to take benedryl an hour before taking the Vanco. If the rash didn’t improve (be gone is what it should have been) by morning, I was to come back in. And as a good girl, that’s what I did, but not Evergreen this time – I’m still shocked they sent me away with the ileus and MRSA infection.

ER again

So I’m in the exam room and they want to know why I’m there. This was going to take awhile. I first started off with the rash and how I was told to come back for that. I then showed them my back, letting them culture it and asked for it to be re-bandaged. I was also rolled in for another CT and x-ray. Ileus looked better, no NG tube. However, the results from the culture taken at the other hospital location came in just an hour before I came to the ER. My AMAZING attending actually found it and came in to tell me the not-so-good news. I sort of figured it out when my husband and father came back from lunch dressed in gowns; I had MRSA.

He talked with the hospitalist that released me about my rash and he STILL manages to be a jerk saying, “there really isn’t a reason to bring her back in, as it is probably not even related to the Vanco, but we’ll accept her if you feel she needs admitting.” So he goes and calls the infection disease (ID) doctor and he told them to transport me to his hospital immediately. Fever and resting HR of 140 on top of everything else, they once again, readied me for transport. This time it would be longer but the attitude of my ER doctor was awesome. He wanted to step back and have a real plan. So that’s what we did. Ambulance came and they let my dad come too. I slept most of the 45 minute drive (thank you traffic).

Hospital Stay: Part II

This one, I was told, would be short. ID looked at my wound and then changed my vanco to IV daptomycin. And guess what happened? A few days after the vanco got out, my rash went away! Amazing how that works out. I also was surprised by the service. My attending doc had ALL my medicines (regular and IV special ordered as well as TPN) already ordered, before she even came in to see me! They were all so nice and had everything under control. I was relaxed for the first time. And since my ileus was resolved, they allowed me pain medication strong enough to give me one night pain-free. I will always remember that feeling and hope to have it again someday, even if it is just for one night. But yes, this was a short stay. My ID doc came in the morning to check the infection and to see if anything new popped up and said I could go home that day! I felt so much better going home that day. They made me feel comfortable with myself. Thank you Swedish Hospital Medical Center: First Hill! You guys rock, keep it up.

Wrapping it up…whew

On the same day I was discharged for the second time, my father had to leave. He had arrived the day I was discharged the first time. Overall I learned:

• Stand up for yourself as you know more about your body than anyone. Don’t be bullied by nurses and doctors.
• Remember to take some responsibility for everything the doctors and nurses do, refer to my Imitrex IM situation, they make mistakes too
• Get a Hospital Social Worker if you know you’ll be in the hosptial for a few days. They will help be your medical advocate and keep doctors on their toes in order to make your stay run as smoothly as possible.
• Trust yourself. If you feel like something more is wrong then keep looking for someone who will listen. I had to go to two different ERs before someone would listen and DO something about it.
• Still try to smile and enjoy being alive =)


Anyway – that is why I have been in and out of the Internet. The lead incisions are still swollen and there is a slight lump that I must have another ID look at so that I can be cleared for surgery. Yes, I have been approved for the permanent spinal cord neurostimulator. Everything on their end is ready, I just need to pass the ID test. I’m excited. In case I didn’t talk about it before, three days before I was admitted, I had a spinal cord neurostimulator placed temporarily in my back. I control it with a remote, unlike the gastric one which requires a doctor to change it, because simply standing up can move the leads on your spinal cord, changing the frequency and voltage. Those are the two things you can move up or down. I think I’m his first patient to ever have one placed for generalized abdominal pain but as soon as he put it in the right spot, I could tell a major difference. It was great. My ID appointment is on Tuesday. Because of all that has happened in the last few weeks, I may have to push my surgery date until after the holidays. As we will have family. Not something you want to be bringing them to – your hospital! Nor do I want to be in the hospital on Christmas either – did that last year. Not fun. But it is still coming up soon. If I hold off until the end of the year, I’ll have more time to recover and have that recovery time close to my doctor should anything go wrong.

Time for bed. Happy Tummy Days to everyone!

Share via email

tags: advocate, daptomycin, Dr. Daniel Nelson, Dr. Patterson, ER, Evergreen Hospital, First Hill, Hospital, ileus, Issaquah, IV, MRSA, neurostimulator, Nucynta, pacemaker, paralytic, social worker, spinal cord, stimulator, Swedish, temporary, vanco, vancomycin

Sorry for the late post on this, but I had a few complications after the botox injection. I experienced quite a bit of pain for days after the procedure and made several ER trips to help control that pain. The EGD and sigmoidoscopy procedure went really well. Dr. Patterson says my colon and stomach looked healthy except for a non-functioning esophageal valve and unusually tight pyloric valve. That is where he injected the botox. I still haven’t noticed any difference. The procedure was performed on the 23rd of August. I plan to make an appointment with him next week to see where we go from here. I hear multiple injections are needed to notice a difference but if I experience the same pain for up to a week after, I’m not really sure I want to continue unless I’m offered better control for the pain. It was not good times.

As of now, I’m back into my normal routine. Pain continues to live with me at an 8 on the scale of uselessness. Migraines are flaring up more often due to the abnormal heatwave we are experiencing. I can’t wait for fall and winter where I can enjoy being outside and not having to worry about my energy being zapped by the sun or getting sick and dehydrated. My weight is being beautifully stable at around 110, thanks to TPN, the only form of nutrition that has worked for me with no pain. I run it on a 20 hour cycle starting at 9pm, ending at 5pm the next day. I get 2000ml of fluid in which there are 1450 calories. I supplement some of those calories with a few scoops of the only ice cream I can tolerate, Sherbet (tropical flavor!), at night. Believe it or not, the ice cream is doctor ordered. They say you MUST put something in your mouth and in your gut to keep it from completely dying off. No matter what it is, or how small – something must go through it. This is all I have found that works and I don’t feel like rocking this boat by trying something new. Not yet anyway.

Exciting News: I have received a smaller version of the same feeding bag I use, to check out and make sure it would work as mine does so I can 100% recommend it or not to other tube feeders. I still have not received the smallest of the bags, and will be writing again soon to see if I can get my hands on those. I can’t express it enough, I love my feeding bag. It is so comfortable I have actually fallen asleep on the couch with it on. I’ll have to make a video on how to properly load a feed into it as it gets a little tricky (my husband had some problems with it so I figured some others might as well). This weekend is going to be a nasty one, in terms of weather, so if I manage to stay out of the ER, I will do my best to get a video up and my pictures from the scope I had last month. It is interesting for those who haven’t seen or had one done before =)

Happy tummy days, keep hydrated and stay cool!