Endometriosis and Ulcerative Colitis – A new diagnosis Part 2

If you came back for more, I hope this doesn’t mean you also have UC, but I do hope sharing my story is helping you in some way.

Alright lets see. After the colonoscopy was complete I was able to go back into the room in which my mother was sitting. Oh man, the tears of joy when I saw her face and embraced her hug! Moms are a great thing. The doc informed both of us what I described to you and assured us that we would not be going home any time soon. I was sent to an in-patient room where I would be staying for up to several days while the doctors would order me several tests. It seemed my CRP (C-Reactive Protein) levels were out of wack, my liver enzymes were much too high and my colon was swollen enough to be alarmed. No diagnosis, and still a hope that the culture would come back positive (yes, positive. I was happy to take a bug over anything more severe).

The theme of the next few days was bodily fluids. I was pooping 10+ times a day, and peeing all night long due to the drip steroids they were giving me. I would wake up in night sweats as my body tried to get rid of the water retention caused throughout the day by the steroids as well. I was being poked for blood draws every day if not twice a day. The hospital I was admitted in wanted to redo the cultures that were done at the previous hospital. Good news was the initial results were all negative but they wanted to make certain there wasnt something done incorrectly. Keep in mind that a negative culture only means its not one of the bacteria they can physically culture so it doesnt rule out a strange bug, or a virus. Dang! Other blood draws were to monitor my CRP levels (which indicate inflammation), my liver enzymes (which indicate something happening with my liver), and other vitals. The one thing they absolutely wanted to do was run an MRCP – similar to an MRI but specific for the liver and bile ducts – to get to the bottom of these abnormal liver enzyme levels. One possibility was that when my gallbladder was taken out years ago perhaps it caused some abnormality where the bile is supposed to be created? Maybe there was a stone? Or maybe some kind of kink or twist in the bile duct?

Alright here are the Cole’s notes over the full 10 days…

So every morning the Gastroenterology (one of many) did the rounds and came to see me with an update on the test results. Its about a 5 minute conversation until the next day. But in reality it was a very thorough ‘think outside the box’ planning session with the doctor on a daily basis. The first 48 hours were just unknowns.

Then on the third day, the GI came to see me and was talking to me about my Ulcerative Colitis. Woah woah,… I said “you seem to be flinging this term around, is this what I have”. Yeah she thought I knew already. Ok… breathe. I have a diagnosis. Not the one I wanted, but I have a diagnosis. The tissue from the biopsy cleared showed crystallisation which was an indication that the inflammation (or rather the Ulcerative Colitis) had been around for a while but had never been bad enough to bring me into the hospital. We would continue with the steroids and then we would start to bring in the medications for the UC. Until then I was put on a low reside diet, which as you know, going cold turkey to low residue is a very bland shock to your taste buds. Blood work would be done every day to continue to monitor those dang CRP levels and liver enzymes until we could get in for the MRCP.

Looking back I wish I had catalogued this better but honestly, 10 days went by at glacial speed and yet so much happened. In reality, the outcome would have been to switch me on to oral prednisone, try the new meds and send me home. That is NOT what happened. We did switch – by about the 5th day – to oral prednisone and it sat well enough. When the GI came around that day, it was time to discuss which medication to put me on for the UC. As per protocol the first round would be 5-ASA and then go from there if I didnt respond well. This is when I reached out to my facebook Endo support groups to see if anyone else also had UC. *Jane was kind enough to tell me about her Endo/UC lifestyle and which meds have worked for her. This allowed me to at least provide some suggestions to the doc, particularly since she didnt seem to have a preference which oral tablet I try. Too bad I was one step too late. She put me on Asacol – a red table taken orally (two tablets) twice a day. After the second dose of pills I knew something was wrong. Keep in mind the doses are about 8 hours apart and I think I started getting heart palpitations quite shortly after the second dose, so hard to tell if the first set or the second set was the issue. The problem was that I was having this odd pain where (theoretically) my gallbladder should be, and heart palpitations that were quite bad that I needed an oxygen mask and to be continually monitored for my vitals. This part I remember clearly as it lasted for 2.5 hours. Thats a long time to struggle.

(By the way did I say these were the Cole’s notes?!? Sheesh, Im trying to make this short!)

The doc was paged about the pain, and she subsequently reported back that I skip the morning dose of the Asacol. Sadly, if I decided to stay off the Asacol there were other options of the same drug (same drug, different manufacturer) but likely the head GI would want to skip that altogether and put me on ‘biologics’ which are vastly different and act as specific inhibitors to inflammatory processes in the body.

In the morning, by the grace of the poop gods, I happened to need to go to the bathroom before the doc came back to make a judgement call, and I happened to look in the toilet to see a full pill in the toilet bowl, intact but with the red coating removed. Genius! I google searched the crap (no pun intended) in what that could mean. Turns out that all 5-ASA are made to stay in tact throughout the stomach until it reaches the desired location in the colon where it is intended to break down and coat the colon. But with Asacol, if your colon is not the right pH is doesnt break down and therefore doesnt coat the colon (ie useless). Apparently this was a thing, and a number of people had reported this but it wasnt well known. This was my golden ticket to go back to square one and try a different oral 5-ASA rather than skip to either a rectal version or go to a biologic. Phew! Jane came back to my rescue. We quickly chatted back and forth about some of the ones she really liked over the years and I was able to suggest to the GI that we try oral salofalk. She was ok with it, and it worked!

I was basically stuck in the hospital until the MRCP was done. Forgive me a forgot to mention they did an Ultrasound and an XRay along the way – I think to bide time before the MRCP – but everything looked good. And my biliruben levels were fine which sort of ruled our blockage of the bile duct. Long long long story short the MRCP was fine and I was sent home!!

Here I reserve the space to say the staff at the Vancouver General Hospital were absolutely and incredibly supportive, helpful, responsive, and thorough. 10 days is a long time to keep someone, and very expensive to run all those tests. But I was treated with the utmost care and for that I am ever grateful. Oh and thanks to my mom 🙂

In the next post I will talk about the process after I was sent home, to get back to baseline.