There I was, getting better from my recent lung infection, when the other part of my body that Cystic Fibrosis likes to mess up – my belly – decided to stir up some trouble.
I was seriously at a point in my life where I was beginning an “overhaul” of me – ToniV. It sounds silly, but a few days prior, I had actually taken a poster-sized foam board and outlined my plan for overhauling 7 areas of my life.
Some of the Gastro Intestinal problems that patients with CF can face, that I have, include Pancreatic Insufficiency (the mucus blocks digestive enzymes from leaving the pancreas), CF related Diabetes, GERD, chronic Distal Intestinal Obstructive Syndrome (called DIOS, which is frequent bowel blockages caused by mucus and poor digestion), Chronic Pancreatitis, and Gastroparesis (slow emptying gut).
The Build Up
I have been having sluggish digestion issues for about a month, and about 10 days ago, my symptoms increased, caused some really bad pain attacks every few days.
Saturday night, my pain became steady. I went to bed early, hoping it would go away, but it persisted all night. It got so severe that I could not roll over onto my right side without pain. I woke up, and didn’t want to get out of bed because simply moving made it worse. Finally around 10, I got out of bed, tried to use the bathroom, and came out of the bedroom.
I told Ken that I needed to find out what was going on.
My biggest fear was that I had a total bowel blockage – I’ve had them before, and it can turn dangerous and life-threatening very quickly. I had tried to wait until my CF clinic appointment the next morning, but this was 18 hours of constant pain. It had not let up a single moment, and THAT is not typical of me during even the worst of my typical days.
Quick Decision…Followed by a Flurry of Activity
We threw clothes on, fed the cats, and got into the car. We drove the 30 minutes to *my* hospital (the one with my CF clinic) and they took us straight in. They did the usual stuff – history, vital signs, etc., then shuttered me immediately to the trauma room.
As usual, it took several attempts to get an IV in my veins. I have very small veins that collapse easily and are really hard to “stick”. The nurse tried twice and the first vein collapsed, and the second one “blew”. I told her that in my experience, it’s best that someone else try. It’s nothing against the nurse – but it becomes a mission to get that line placed, and both the nurse and patient (me!) start feeling really desperate. I’ve even read on nursing forums where ER nurses suggested to ask for another person to try after 2 attempts.
Another nurse came in, and she got it. First hurdle down.
In addition to sucky veins, I was also probably somewhat dehydrated, which makes the veins not as plump. In addition, my blood pressure was lower than normal. So the odds were stacked against whomever had that needle in their hands.
Then they had to draw blood. They decided to wait until I got some pain meds in me.
After nearly 18 hours of constant pain – which by that point had reached an 8 out of 10 – the medication was able to bring me down to a 3 out of 10. A HUGE improvement, so I was thankful.
Good thing, because… well, let’s just go to the point in the story where they finally got their vials of blood.
Time Moves On…Unless you’re in the ER
At some point, I had to drink a LOT of radioactive liquid (it’s called “contrast” that lights up the digestive tract on imaging) so that they could do a CT scan.
I had to wait 2 hours for it to make its way through my system.
Time ticked by.
I had the CT scan.
More hours ticked by. I remember the nurse coming in at some point, saying they should have had the CT results back already. A PA (physician’s assistant) came back and said the same.
Meanwhile, the pain was starting to surge back.
I had another “attack” that brought me to the edge – I have never “passed out” from pain, but this felt like I was going to burst in half and I was desperately trying to find a way process it. From the side of the stretcher, Ken brought his face to mine. I stared into his red-rimmed eyes. I have been in medical crisis before. I have been terrified before. But I have never been in such an acutely horrific pain and looked into his eyes at that very moment. Locking onto his gaze was the only thing keeping me there, present. Part of me just wanted to pass out – to not know I was feeling this agony.
And at that moment, I felt complete and utter guilt for how hard it was for Ken to witness. I wanted relief, not just for me, but for him, who has stuck by me and experienced every medical crisis with me, for more than 20 years.
When I am in pain or discomfort, I hum as I exhale. It forces me to focus, and to breathe regularly. Breathing regularly helps pain. Normal human reaction to surges in pain is to gasp, which basically stops regular breathing momentarily. I know this, so I hum.
I tried to hum though it. Through my pain. Through his. At least when they gave me medicine, it took away MY pain. It didn’t help him at all. It only gave him a brief reprieve of the desperate feeling of helplessness.
The pain felt like a blood pressure cuff being squeezed and filling with pressure somewhere deep inside me. It emanated from somewhere so deep that I couldn’t “hold” on my belly or my back to “brace” myself – because the pain radiated to both ends of what I envisioned was a double-edged arrow.
I stared into my husband’s eyes until I was so overcome that I needed every other stimulation out of my head – and had to shut my eyes. My hums became louder and louder until they weren’t hums. They were screams. I thought I was going to die at that very moment. It sounds dramatic. I know. But I felt like my insides were literally exploding, and that there would be nothing left. I waited for an actual POP! to happen.
I have no idea how quickly this happened after my hums became screams, but someone found my arm, somehow, to inject more medication into my IV. I had contorted my body in such a way that that arm was kind of under my body. I only remember this part because I became suddenly aware of the weight of my body on the arm and yanking on part the iv tube.
I don’t remember time or things for a while after that.
Diagnosis? Anyone have a Diagnosis?
I do know that the first read of the CT results said that I didn’t have a big blockage, but that my system was pretty full. Think of it as a red light versus a yellow caution light.
Another doctor came in at some point and mentioned my Gastroparesis and my DIOS as triggers for this episode. I was very BACKED UP. Not as in, I need some Fibercon and I didn’t “go” today… this was a chronic problem that became too much for me to handle at home.
My slow emptying stomach likely encouraged it. And my intestines were squeezing and making a big commotion – they were just trying to do their job.
Ok…at least a diagnosis…something that the doctors can manage. Not a mystery.
Back up to the 10th Floor
Then the nausea that all day was just nausea, suddenly became a problem. I had nothing in my stomach. I had not had anything to drink (other than that drink for the CT scan), since the night before. I was retching a little, but feeling like I had invisible gallons down there to get out.
At some point, a decision was made to admit me to my now “usual” floor where they bring CF patients now. Oh…please…don’t move the bed…
At about 11:45, they started wheeling me out of the ER, up to my floor/room.
I felt every. Single. Bump. The sensation of the elevators felt like I was riding that right where the floor drops out from under you. My stomach dropped. I lay curled up on the stretcher, praying with every ascent, every bump, with every turn around the corner. I begged God, don’t let me puke, don’t let me puke.
Once in a room, I did hurl. Just a few times, but the sensation of impending vomiting is torture. Just make it go away. Several doses of anti-nausea drugs did nothing. I also had a splitting headache. I had been asking for Tylenol for about 5 hours earlier and decided to ask my floor nurse, who immediately asked the covering doctor for an order of Tylenol (I LOVE 10-7!!)
I also asked for a cracker to settle my stomach. I knew that if I could just get something in there, it could at least handle Tylenol. It took about 20 minutes to eat a single cracker. I nibbled on it like a hamster. After the last nibble, I swallowed the Tylenol. I took a sip of water with each nibble because my mouth was so dry.
My headache started to feel better, and over the next half hour, I ate 2 more crackers. No more nausea. Thank you!!
I told my husband to go home – we had been in the ER for 13 hours, and in the room for at least an hour. I told him I would be okay. Thankfully, my nurse remembered me from previous stays, and I knew she’d take amazing care of me.
I finally fell asleep around 2am, woke up in a sweat an hour later. I had just fallen back to sleep when someone came in at 4:30 am to take blood. Okay, I’m up.
I had more pain, but thankfully, nothing like the insane episode in the ER, and nothing close to the incessant pain that brought me here in the first place.
The Next Day
I had a parade of doctors come in the next morning and into the afternoon, including, thankfully, two familiar faces – one of my CF docs and my GI doc. Of course, me being me, I wanted to know what it would take for me to be able to go home.
The plan was to continue giving me medicine to clear out my intestines and get my insides to move (a.k.a. poop), and then try to eat. When I could accomplish both, and my pain decreased, I could go home.
Ken visited most of the day. He did work from his laptop, while I slept – a lot. Well, until my meds started to work.
My insides started to move- YAY!!!!!
I was able to eat a meal sometime in the afternoon – baked chicken and rice. I kept it down. YAY!!
The pain was decreasing, but still kind of there. Ummm.. I thought, if it’s at this level and I am here, wouldn’t I be better off “at this level” at home? YES!
So, I decided that as I was…
- Out of danger (not blocked!),
- I could eat AND poop, and
- C. my pain was manageable… so…I was better off at home.
First thing in the morning, I told the nurse that I was ready to go home. There was no reason for me to be here if I was out of danger and my pain was much better. (Pain is a part of my digestive life – I have chronic pancreatitis as well – so even at a certain level, I feel safe at home.)
I also ate breakfast, and continued to poop. Six times, in total. (THIS IS WAY MORE THAN YOU PROBABLY WANT TO KNOW ABOUT ME, BUT FOR CF PATIENTS, POOP IS AN IMPORTANT INDICATOR OF A HUGE PART OF MANAGING HALF OF OUR DISEASE PROCESS!!)
The doctors agreed, and so they fast-tracked my discharge. It was a great feeling, going home after only 2 (really 1 /2 nights), because my typical hospitalizations last 1-2 two weeks. We packed up, waved goodbye to the nurses, and got home around lunchtime.
Back to our regularly scheduled programming…
At this point, every part of what was going wrong is now going in the right direction. I continue to take my DIOS meds and can discontinue in a few days. I have to increase my Gastroparesis meds, but that’s only one additional pill a day (from 2 to 3). The pain is manageable.
Thank you for the prayers, support, and encouragement. I know that it isn’t always easy to read about the every day happenings of my disease, but there are not enough avenues of publicly available support and camaraderie for people with CF. And so, I continue to write.
*NOTE: Some of the information for this post was gained through talking to Ken. During some of those times, I either blocked things out for self-preservation’s sake, or could not remember things due to medication.