Listening to my body – part 2

It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and 3) I’ve taken the liberty of switching off of progestin-only Visanne (oral birth control) to a estrogen-progestin oral birth control called Minovral which seems to be keeping me on my cycle and has reduced my endo-belly.

Let’s start off with my endo visit exactly a week ago. For the sake of public scrutiny I will avoid mentioning names of my doctors. Let’s call my Endo specialist ‘Dr. E’ for now. Skipping ahead past the routine questions, Dr. E had a resident doctor come assess me first. To be fair, I took a cancelation endoscopy for an hour after this appointment so the doctors were rushing on my accord. The resident was interested in my birth control path, and agreed that putting myself on some form of birth control was the right idea, and certainly if Minovral had helped me in the past it was a good option. She also reiterated that I would use it to skip my periods as I had been, to reduce the ‘cycle’, and eliminate the bleeding which in turn should reduce new endometrial growth. This is key to the understanding of how the disease works. However, where we disagreed is her plan to attack the pain. She was comfortable assessing whether the birth control itself would reduce the pain and then we could address next steps in two weeks. My thinking was that birth control hadn’t worked in the past, Visanne certainly didn’t work, so going back to birth control as the line of defence was practically moving backwards. She called in Dr. E to help with the issue. I wasn’t being irate, I was being rational and she appreciated this. Meeting Dr. E was like meeting a celebrity. He has a fantastic reputation in the community and has overcome tremendous feats for women suffering from endometriosis that I was admittedly somewhat star struck when he walked into the room. Mom helped me gain my composure to address the pain question and this prompted him to get me to lie on the table and see where the pain is located.

Upon inspection I was able to show him that my lower left side, right around where my stitch for the ovarian suspension was, always hurts. Always. Every examination Ive had since my excision in March has resulted in me wincing in pain every time a doctor pokes in that general area. This was a red flag for Dr. E. He then asked me where my upper pain resided so I showed him the right side under my rib (which one could say is my right side of my diaphragm). Practically, this would align with the diaphragmatic endometrial lesions that were cauterize during my excision. Scientifically however, lesions on the diaphragm (so I learned) do not express pain on the diaphragm but refer pain to the right shoulder. This is where we paused for scientific clarity.

In Dr. E’s opinion, one should be pain free 6 months to a year after a thorough excision like the one I had. While the cauterizing did not effectively remove the endo on my diaphragm it should have – along with skipping my periods – significantly halted any growth or spreading of those implants. Dr. E also mentioned that doing surgery on a patient is usually refrained from IF the patient has NOT had this time frame (at minimum) of no pain, as it may point to other explanations of pain rather than it being a direct cause of the implants. Yikes. We agreed that we would order some scans to physically examine the state of the implants (for preparation of any future surgery) but that our primary goal (kind of what I was gunning for in the first place) was to address the pain.

Here is where my life turned upside down. Dr. E told me that there is a Neuroscientist who believes the body can learn to address pain in a constant fashion, even when the body doesn’t meet protection. For more information on this concept, Dr. Lorimer Moseley has created this fabulous video called “Tame the Beast”. (This link will open the video in a new window). Under this concept, Dr. E has administered a pain blocker to many women like myself who are feeling pain in an area that is perfectly healed and not in danger. With my eagerness, Dr. E’s Resident administered two long needles into my nerves associated with this over-firing of pain. It was such a weird feeling. Ugh! I was told that if it is the problem, I should get a rise in pain initially and then the pain should go away within 24 hours, for 4-6 weeks! Note that the pain did go up after the injections but only if I really pressed on the nerves. The pain went away 100% after the first 24 hours and I can happily report there has been no pain for ONE WHOLE WEEK!!!! With regards to the upper pain, the theory is this could also stem from the same problem but given its complex location I would need to be given a neuromodulator (similar overall function of the pain blocker). BUT we decided to hold off as this area is still under scrutiny by my GI.

Perfect Segway…

After this appointment to which I was numb from emotion, I quickly drove over to the hospital down the street for my endoscope. So, this was ordered by my GI (Lets call him Dr. G) to reexamine my pancreas and get to the bottom of this recurring acute pancreatitis. In some ways this would also help to rule out the theory of endometriosis on my pancreas but the rest was up in the air.

When I was about to be sedated the GI (Call him Dr C), asked me if the episodes of pancreatitis ever happened before I started on entyvio. The answer was no. He then told me that a recent publication (2018) showed 4 cases – two adult and two paediatric – of pancreatitis linked to Entyvio (Vedolizumab) and he suspects this may be the case with me. The endoscope was quick and dirty. When I started to come out of the fog, Dr, C waited behind to explain to me that the endoscope looked fine: no inflammation on my pancreas, no scarring, no signs of damage. This substantiated his theory that it could be from my medication and that if my infusion frequency has been moved to every 4 weeks this could exacerbate the pancreatitis. On this front, I have left it to Dr. C to let Dr. G know, and contact me for next steps. The challenge there will be having to take me off a medication that is working for my Colitis and figuring out which other medication will work.

Stay tuned for part 3.

Identity Crisis – redefining who I am after endo and UC

Feeling lost from auto-immune diseases

I know this sounds utterly drama-tastic but I literally feel like Im having an identity crisis. Over the last few years I had built myself up to be the strongest, most positive person there was. I was exercising every day, eating a whole food diet, and happy as a clam. I had found the love of my life, managing somehow to make long distance work. I found the most incredible job that allowed me to shine, and I moved back to Canada for it. Then shortly after my move, the endometriosis pain kicked in in places I had never felt it before. I was so fortunate to get a referral and acceptance into the BC Women’s Pain and Endo clinic but that was probably for me, the beginning of of the end. I was put on the wait list for the excision surgery and I was very diligent about an endo diet to control the inflammation and bowel movements until the surgery. I was asked to skip my periods, and therefore take Visanne which I was always reluctant to do. The hair loss started and the spot bleeding was equivalent to period pain at first. A few months later, the biggest bout of what seemed like a terrible flu accompanied by bloody, mucousy diarrhea with uncontrollable urgency sent me to the ER with a hospital stay of 10 days to confirm I had moderate to severe UC. I would have gone home earlier but the first round of mesalamine didnt work (I was pooping them out whole) and they had to try a different brand.

Since my UC diagnosis I have been on a low residue diet which – if any of you are on it still – is the OPPOSITE of an endo diet. Its literally high carb, high protein, NO FRUITS OR VEGGIES, no lentils, nothing with fiber. Do you know how utterly counter intuitive that is for endo????

4 months later, both doctors squabbled over whether I was in good enough shape to have the excision surgery. I was mad at my own body for putting me in the situation where the inflammation may prevent me from having the best surgery of my life. Needless to say I was able to go through with it, and it ended up being much more extensive than anticipated. The good news is, its mostly all out. The bad news is I feel like between the scar tissue on my colon and the UC itself, I actually dread having a bowel movement. AND I think the worst part about it is every morning I wake up with what I like to call a bolus of poop just hanging out in my lower colon waiting until IT is ready to come out. Nothing I can do about it and it looks and feels exactly like endo belly – so really I havent come that far yet.

Im trying to be patient. Im trying to be positive. But I am honestly no longer the person I was a year ago. I can barely walk for 20 minutes. I have to be so careful what I eat, not to mention alcohol is out of the picture (plus or minus a beer here and there). Im in pain constantly. Im tired constantly. And for the first time in 10 years I think I may have to up my anti-anxiety meds just because of how much is going on. I have missed so much work and I HATE missing work. Im a Director of Sales at a start up company in BC that is gaining tons of momentum and yet, I feel like Im the bottle neck. I do realize that “I am not what I eat”, and that this will take time, and hopefully once the inflammation has gone down I wont feel the endo pain again, and my UC will eventually go into remission. But for now… especially for RIGHT now… I feel like shit.

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.