Undiagnosed abdominal pain
I dont know how to begin this blog article other than to really start at the beginning of this journey. I thought for sure this wouldnt be worthy of an article as I just assumed this pain would go away through a fart, or a bowel movement, or maybe by way of antibiotics. But … I thought wrong. Now, 13 days later I think it might be worth sharing this journey for others who may have experienced (or are experiencing something similar).
On Monday July 2, the holiday given to us Canadians for Canada day, I woke up utterly exhausted. I had nursed perhaps all of one beer the day before, so it wasnt the alcohol. I chalked it up to too much sun. But selfishly I knew there was something else going on as I started crying at the littlest of things. I didnt know how to explain what I was feeling… just ‘off’. As the day progressed I started feeling this dull pain in my abdomen – below and between my ribs, above my stomach. It got worse and worse, to the point where I was keeling over screaming in agony. This resulted in my first hospital visit of many. To the ER we went, where I saw a doctor who ordered blood work, and came back an hour later to discharge me with ‘we dont see anything abnormal. It could be your UC flaring up because your biologics may need to be administered in shorter intervals’.
Day 2 (Tuesday July 3)
By the time I was discharged it was midnight on Monday, and there was not much sleep to be had that night. In the following morning, I was preparing myself to fly back from Ottawa to Vancouver (where I currently call home). I was partly excited because I was scheduled for my next Entyvio infusion the next day and I had high hopes that perhaps the Emerg doctor was right, and the infusion would fix it all. The pain continued to escalate throughout the day, and just as I called my Uber to take me to the airport I started to get really nauseous. I made it to the airport… but there was no way I could get on that flight. I was distressed. Nauseous. Sweating. In agony. So I quickly got on the phone and called the Innomar Clinic to see if I could instead have my Entyvio infusion administered in Ottawa ASAP. They were so compassionate and understanding. Somehow they were able to get me in for first thing the next morning, so I crawled back to my apartment in Ottawa and crawled under the sheets hoping for tomorrow.
Day 3 (Wednesday July 4)
The morning arrived, with no shortage of pain, and off to the clinic
I went. The nurses at the clinic were just so warm and friendly. I knew this was going to be the ticket to my good health again. After the infusion I felt rather tired, much like I had felt after the first few loading doses (this was dose 5!!) so I waited and waited for the Entyvio to melt away this pain.
Just melt it into an oblivion like it never happened. A blip in the road. Yeah that didnt happen. A whole day went by, no relief of symptoms, and just plain fatigue. I was knocked out for the better part of the day.
Day 4 (Thursday July 5)
Thursday morning at the crack of dawn, my boyfriend was already scheduled to fly from Ottawa to Vancouver to visit me, so I was smart enough to reschedule my flight to be with him. He was going to see me after all, so I should probably be there :). We got on the plane; things were feeling ok. I managed to read some of my book, have a latte to warm me up, I may have snuck in a 10min snooze in there somewhere. But by the third hour I was in agony. That dull abdo pain was back. No nausea thank goodness though I could have dealt with some fatigue at that point to knock me out for awhile.
Once we landed, I think the air pressure did make things feel a bit better to be honest, but only marginally. I was happy to be on the ground, in the city with all my specialists. When I landed however, I had a VM from my GI saying my calprotectin levels appeared to be normal, and she was headed off on vacation for 2 weeks, but to be sure to go to the ER if the pain persisted. Persisted it did! Off to Emerg we went again. This time I had more blood work, a ECG, and a CT scan done almost right away. They took be upstairs to become an inpatient which was great news because it makes it easier to order and expedite any additional tests. I was told that my lipases were high – which means pancreas issues. But my liver enzymes and CRP were low, so that was good. I was ordered more saline drip and I just rested as best I could. The fecal occult test showed positive for some blood but nothing alarming.
In the middle of the night the Resident Doctor who I had met briefly in conjunction with the ER doctor on call woke me up to tell me that the blood work and the CT scan both indicated pancreatitis. No idea what caused it yet, but that in the morning there would be additional tests to see where to go from here. So I slept.
Day 4 – the day it all went downhill (Friday July 6)
In the morning, around 8:30am, the doctors were on rotation, visiting all the floors. I was in a random room on the TB floor due to shortage of beds, but surprisingly they made it to me quite early. This was the day I met Dr. *Kid. Dr. Kid, the resident doctor and another female doctor walked in, with Dr. Kid leading the pack. He told me that the blood work and the CT scan both came back negative… (wait, didnt I just get told 8 hours ago that… oh nevermind, what do I know?!?). He said based on this information he was discharging me. I asked him why they would be so keen to let me go when I still had dyer pain, to which he responded “what were your expectations coming in here?” … lets just say I let that one go or else Dr. Kid would be walking out without an eye.
Somewhere between my room and the nurse’s desk Dr. Kid decided to extend my stay for one more night to keep an eye on me, however, my saline drip expired somewhere around 2pm, which was administered as the fasted bolus I have ever experienced and my IV had to be changed because it burst the vein. Great. Needless to say neither I or the nurses knew the plan but I knew I had to ween myself off the Morphine cus those would be unavailable soon too. The pain persisted and so did my anger. I struggled to understand why he wouldnt send me to a gyno or a GI (I asked BTW and his response was ‘im an internal medicine doc, there isnt anything they know that I wouldnt know’… yeah).
For some reason I was unable to have a bowel movement since I arrived at the hospital which was a nice change for me, as opposed to the diarrhea I was having at home. But I was expected to give a stool sample so I asked Greg to get me a soy latte for some assistance. A few hours later I had a tiny one, and it was like green mucousy sludge. So gross.
*Hiding Dr. Kid’s real name for his own protection.
Day 5 (Saturday July 7)
I had managed to stay in the hospital for 2 full nights which was unexpected to me. I knew my fate was coming to an end though. Luckily my BF was in the room by the time Dr. Kid showed up, alone. His tone changed significantly knowing that my body guard was there in the room with me. He told me that there was a slight elevation of my liver enzymes yesterday but it had since come back down, as well as my lipases. So with that information he was discharging me. Oh, and he said he would give me a courtesy handful of hydromorphone to help me manage for a few days.
The hospital, despite me being a UC patient, was giving me a regular diet so half the items were unworthy of my colon (*eye rolling*). When we got home, for the fun of it really, we decided to go on a soup-based diet to see if it would effect the pain. This is one thing that is recommended for pancreatitis. It did! Well,… let me preface that. The Bone-broth and broth based soup diet didnt spike the pain like solid foods did, so I continued with this. No solid foods, no alcohol or caffeine. Just a ton of bone broth. We even cut regular soups with the bone broth for added health benefits.
No bowel movement this day. Seems the morphine was making me constipated despite their lack of effect on the pain itself.
Day 6 (Sunday July 8 – aka my birthday)
I woke that morning to a beautiful bouquet of flowers and a hilarious birthday card. In light of it being my birthday I said ‘mind over matter’ and decided today was MY day. symptom wise, I was still feeling a lot of pain, and I continued with the soup diet. I added banana for potassium, and also started taking Vitamin D and Calcium just to make sure I didnt pass out from malnutrition.
Day 7 (Monday July 9)
Same as the day before. I dont think there was anything different in terms of pain, but I started to notice that my bowels were super gurgly and any bowel movement I had was dark green and loose like bile.
Day 8 (Tuesday July 10)
Something crazy happened that day. In the morning, Dr. Kid called me to ask me how I was doing. As soon as I told him I wasnt feeling any better, his arrogance sort of melted away. He thought for sure he would be right about this one. Again, his response was that none of the dots were connecting and hopefully I could manage on my own at home. To which I replied “yes I have a few other doctors interested in my case so I think thats my next step”. … I caution you…. never say this to a doctor you like. Only to the ones you want to knock down a few pegs. A few hours later Dr. Kid called me back and asked if I could come to his office the next day for a full blood work up. I was game.
That same day I was put in touch with a doctor in the US who is friends with my boss. This doctor has seen it all, and done it all. With him, he spent dedicated time over the phone to understand my full history. In a matter of minutes he told me ‘you need to make sure the doctors are listening to you. Without taking your whole history into account they wont find the problem”. He told me I deserved to be heard, and concluded that his guess would be my diaphragmatic endo was now spreading to my liver and other organs OR adhesions affecting my stomach and bowels. This call changed my life in an instant.
Day 9 (Wednesday July 11)
I hadnt slept much that night; partly due to pain and partly thinking about the things the other doctor had told me to consider. Needless to say, while I was kind of excited to see what Dr. Kid had to say to me today I wasnt overly ambitious that he was going to investigate anything further. With my GI still on holiday and my Endo specialist not involved yet, Dr. Kid brought me in to do a breathing test, to feel my belly, and then went through my symptoms again. No real change. No real interest. But for his own ego he decided to do two things: order a full blood workup and prescribe me Panto to see if this was acid involved.
I went to get the blood work done, and left the cortisol test for the next morning as I was scheduled for my MRI the next morning.
Day 10 (Thursday July 12)
I was scheduled to have this MRI last week but when I missed my flight in Ottawa I called to reschedule. This MRI was booked months ago to confirm or rule out my PSC from back in November when they say ‘possible signs of positive PSC’. In light of recent events they also looked at my pancreas (I think). I fasted for 6 hours leading up to the test, and then upon arrival was asked to drink pineapple juice. Something about pineapple juice plumping up the bile ducts. After the MRI was done I think I was in pain from the breathing exercises so we rushed over to complete my cortisol blood work and then went home. I crashed. Hard.
Staying on the soup diet, my stool was still regular but dark green. I also started getting nauseous.
Day 11 (Friday July 13 aka the end of Dr. Kid)
On Friday morning I knew there was going to be 1 of 2 things happening. Either Dr. Kid was going to call me and tell me there was something terribly wrong OR he was going to call me and tell me I was an idiot and nothing was wrong. The result was somewhere in the middle. He called in the late afternoon, just before the weekend, to let me know that my blood work looked good but he didnt have the MRI results yet. I take a pause because this is where us spoonies differ from the rest of the world.
The rest of the world: Oh my goodness Im so glad your blood work is fine. I can breathe now.
Spoonies: Im still in pain….
So thats how Friday sort of ended, with me utterly frustrated, and those around me feeling a bit more relieved. Needless to say, the pain persisted, and the weekend was coming (ie I didnt have to try to fit in work during the day and was free to sleep).
I also decided that if Dr. Kid was insistent it wasnt anything concerning my organs, I was gonna go back to eating solid foods. the soup diet was fun and all, but making me rather light headed. I had gluten free dairy free mac and cheese!!
Day 12 and 13 (Saturday July 14 and Sunday July 15)
The last two days I have been sleeping a lot! In fact yesterday morning I woke up at 9am, went back to sleep at 10:30am and slept until 4pm. I napped for six hours!!! Today has been better insofar as sleeping goes. I have had much more stamina but the pain has been pretty consistent. I just didnt want to waste the day. Mind over matter I guess.
On Friday I decided the Panto wasnt working so I stopped taking it (upon guidance from Dr. Kid of course). The drug is known to change your gut microbiome and I could tell it was making my bowel movements more of a clay color – no longer the bile green – and terribly hard. Ive also been having 3-4 bowel movements a day the last two days though they are of good texture (LOL!).
The current plan is to see if either/both my GI or/and my Endo specialist can assist me into looking at what could be causing this pain. In an ideal world they will refer me to someone who can handle my complicated story – possibly someone who knows how to deal with thoracic endo!
I promise to keep you apprised as I learn more. For now, Im off to enjoy the rest of this Sunday.