Tag: Endometriosis and Ulcerative Colitis

Excision Surgery Part 1: From The OR To My Bed

For those of you who are still on the edge of their seat waiting to hear about what’s been happening with my endo journey, here goes.

To recap, back in February I asked to see my Gyn because Orilissa was eliciting dark suicidal thoughts (not tendencies, thank goodness). At that time they told me to absolutely discontinue and not to worry about withdrawal effects. I had made it to 13 weeks anyways so in my mind I checked off that box. At the same time I finally gave the green light for surgery which prompted a lot of paperwork to sign for the OR and a visit with the Thoracic surgeon just to ensure he and I had a chance to pow-wow about the expectations. That went well with one minor little ahem. So I asked him about the heart/lung issues Ive been having and he clearly dismissed endo being the culprit which in turn opened up Pandora’s box – in a good way – that inevitably delayed my surgery but helped all parties involved get clarity on any ‘other’ factors influencing my thoracic cavity.

And then then pandemic hit.

I will say though that within DAYS I had 6 or 7 appointments booked – for September nevertheless – to examine my lung strength, my heart beat patterns, load on the system, etc. With Covid however, this meant the hospitals were shut down especially for those with breathing issues until they had the green light from Ford to reopen or to at least tread with caution. Back then, in March, they told me if the pandemic lifts by the summer feel free to call for an earlier appointment. Funny to think that was where the bar was set back then on this ever-looming pandemic. The months went by very quickly despite all the pain, and before you knew it August had arrived. I had a holter monitor booked for the end of August which went well. No abnormalities. (Spoiler alert: all the tests came back ‘unremarkable’). I had a breathing test that almost looked like I had asthma but was temporarily ruled out for the time being. More extensive tests will be done in the upcoming months. All in all, I was cleared for surgery (but, the cardiologist was not convinced my problems were due to endo and would see me in a few months).

By mid September, all the tests done, and the pain becoming very unbearable, I called the doc and asked if he could please push my surgery up from February. He (re)assured me he would do everything he could. And just like that, I got a call to confirm a surgery date of Oct 9th.

OK fast forward. I had a prep done a week before the surgery to check all my vitals and go through the pre-op procedures. They talked to me about all the possibilities like a catheter if the abdomen incisions need to be bigger, or a chest tube only if the thoracic involvement is greater than predicted. They went through the fasting process. Days leading up to the surgery were the worst, with the combination of trepidation, anxiety (*doc called to tell me the rise in COVID cases was causing some overnight surgeries to be canceled, so to hold tight), and lots of pain. The one other thing is that I was scheduled to have an Entyvio infusion (for my UC) the day before the surgery but because it could compromise my immune system they delayed it by two whole weeks!!!

The fam jam arrived the night before my surgery to settle me in. We had a great meal – no alcohol due to the fasting rules – and a good night’s sleep. In the morning Greg took me to the hospital and was only allowed to drop me off which I know was a game changer for him. It caused intense anxiety so I told mom to make sure he was calm while they waited for any updates. I was there for hours before the surgery but time really did go quickly. They asked me for a urine sample to check for any pregnancy. They make you wait a long time just to get in the room but then once on the stretcher they made me so comfortable with a blowup hot blanket and warm clothes, booties, and nurse with a lovely demeanour. We talked about what happens if someone is pregnant (I assured her I was NOT) and we laughed about some medical surprises. I was cool as a cucumber and I remember asking myself why I wasn’t nervous at all. I think the reality was I had had a surgery like this before so knew what to expect + I just knew I needed this so badly. They finally wheeled me outside the OR where I met my surgeon and his team, along with the anaesthesiology group. Within a few short minutes I was taken into the OR, laying me down on the bed, my arm out for the IV to be hooked up to the good stuff. They put an oxygen mask on my face like they do in the movies and then I was out.

Me and Dr. Singh prior to the surgery

As I was waking up from surgery, my brain was still very foggy but I knew where I was. Sort of. I knew I was in recovery. It was so quiet, maybe due to limited staff and patients impacted by Covid rules, but it was calming in a way. I didn’t know it at the time but the extent to which they had to involve the thoracic cavity was fairly limited so I was able to go home as soon as I was able to pee. When the nurse helped me up from the stretcher one of my incisions started to bleed. She cleaned me up and helped me to the bathroom, very very slowly. I sat there with running water on to help me pee. But I just couldn’t. I wasnt ready yet.

I went all the way back to my bed so I could relax a bit, wake up a bit and then tried again. Success! I was able to pee, call my fiancé and go home.

The first night I was pretty much completely out of it. I woke up from time to time as I wanted to shift my positioning but it hurt too much. The most comfortable position was slouching with pillows behind me. I was bloated and uncomfortable but I was happy. The medications they gave me at the hospital had not worn off yet so I was able to get a pretty good sleep despite everything.

My surgeon called me the next day just to check up on me and make sure he had an opportunity to go over the surgery while I was a bit more coherent. What he told me was that they went in through the belly button and examined the uterus first. They took one spot off the right pelvic side, and one spot from the left. The left ovary however, was fused by adhesions to my rectosigmoid colon which was fused to the abdominal wall. This was where they spend the majority of the time slowly removing the adhesions and then removing any new lesions that had formed underneath. They then reverted the cameras and went in where the liver is situated. They took a few spots from the right diaphragm but no endo was visible on the left, which was what the surgeon was expecting. A lot of theories went through my head after that, and I was just so thankful I went ahead with the surgery.

I guess that first week was the most important, and I was so so lucky to have my family with me. Between Greg, my parents and my sister, I was able to rest as much as I needed to without having to get up. Mind you, it was important to be able to move around in those first few days to avoid any adhesions, to expand my lungs and mostly to be able to reduce the air trapped inside of me. That first day I remember I was depending on the hydromorphone to bring down the swelling and prevent me from feeling anything outrageous. But as the days went on I really didn’t need the strong medications. I was mostly switching between Tylenol and Advil (Advil to a lesser degree due to my UC). But by the third day I was walking around, holding on to my belly to protect it I think, and I’d sit for longer periods of time rather than lying down. My back was starting to hurt from only being able to lay in that one position all night. That’s when I brought out the body pillow. While the first few days it was great to use it to prop me up, the body pillow became my lifeline to prop my my knees for a few days and then from the first week onward the pillow allowed me to roll slightly on the left or the right while propping myself up with the pillow as I straddled it. Being able to move around a bit more in bed really helped to squeeze out that air, and give me that confidence that while yes I was sore, I wasn’t going to damage anything. The thing that bothered me the most was the itching from the tape. By day 4 I was taking Benadryl to stop the itching and to help me sleep because of the itching.

I hit a low. I had not given myself the chance to absorb the surgery before it happened, but mentally I worked though it a few days later.

This is something I want to spend some time on as I think we go into the surgery confident that this is what we need, and that no matter what, you’re going to be ok. These are all true statements, but the gravity of the surgery may not hit you until it’s over. As it did with me. It wasn’t depressing. It was more like pride. Joy. Exhilaration that the whole thing was over. I cried for a bit, in a state of bewilderment, and then it was over. That’s all I needed. But if you are going to be having an excision, know that this is a big decision and there is no right or wrong answer whether this is the appropriate next step for you.

By day 5 I was dying of itch, and kinda working my way though the pain. It wasn‘t bad enough to warrant narcotics but it was not going to be touched by Advil, so I ate candy and watched Emily in Paris lol. I also started taking restoralax by day 6, to help even out the see-saw between constipation and diarrhea.

After ten days my family left because I was mostly able to get out of bed, walk around and make tea for myself. It was sad to see them go but I continued to be utterly spoiled by Greg.

And then something weird started to happen.

To be continued…

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Putting Humpty Dumpty back together again

The Ulcerative Colitis Journey between week 6 and 8 of my Entyvio infusions

Being on biologics is a love-hate relationship. When the infusion goes in there is this dread of ‘what symptoms will I feel this time?’. I end up feeling this dull ache in my belly (even when I prepare by taking ibuprofen and gallons of water) followed by an afternoon of sleep and fetal position. It’s not really a pain, its more like my body has recruited the full immune army to attack this foreign substance in my body and they are just telling me ‘shh shh go to sleep now, we can handle this’. After about a half-day of delusional insomnia I end up feeling better. I mean, a lot better. To anyone who hasn’t had an infusion before, it kinda feels like someone put Humpy Dumpty back together again. I have a bit more mobility, I fear less about diarrhea and I can eat a few more things I couldn’t during week 6-8.

But then week 6 hits and – bear with me as I try to explain this – I feel like parts of my colon are chipping away day by day. First its layers of my mucosal lining that start to increase the magnitude and the frequency of bowel movements. Then there is this dull ache that starts on my descending colon – a pain that nobody should ever say they have because nobody should ever be able to feel their descending colon; that’s a thing! Then that pain just starts to spread a bit and reveals some adjacent pain near the base of my colon (the spot just before you poop). By week 7 I start count the hours until my next infusion. Literally everything I eat can be felt moving its way through my digestive system and makes the most atrocious gurgling sounds. People say your food takes 24 hours to pass through your system. Well… Ive seen meals with very distinct colors make its way through me in about 3 hours during week 7. The latter part of my colon is just full of bruises (biologically probably exposed ulcers) so eating is not entirely pleasurable even when its things to spoil myself with. Speaking of which, there is no room to spoil ones self during week 7 because during week 7 your body is not forgiving. Maybe your body could just slightly scold you on week 3 or 4 with an unpleasant poop or a smelly fart, or worse a sleepless night. But not week 7. No no week 7 would mean chronic pain and constant diarrhea followed by sweats, shivers, and cries.

The other thing that intensifies during weeks 6-8 – for those of us blessed souls battling both endometriosis and ulcerative colitis – is the risk of bleeding ulcers. If in fact the entyvio is gone from my system and there is absolutely nothing protecting my colon, then there is absolutely zero chance I am popping any naproxen. For those of you who have been following me, I have been given strict permission (yes strict) from both my endo specialist and my GI to take up to two 250ml tablets a day of naproxen when absolutely necessary for my diaphragmatic endometriosis pain but must stop immediately upon signs of blood in my stool. However, on week 6 and more so on week 7 I don’t even risk it. I suffer through the pain – maybe pop a hydromorphone if I really cant stand the pain – but my colon is so vulnerable during weeks these weeks that the thought of me having a flair and starting all over again is cringe-worthy.

I sat in the clinic today, watching the sun reflecting off the trees through the window as my infusion started to drip through my veins. I noticed at some random moment that I started to smile because in this messed up life that I now live in where I am required to sit in this chair every 8 weeks, I was just so thankful that I reached week 8 and I could reset the timer again.

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Is it rare or medium rare?

Back in 2012 when I had my first surgery to diagnose and treat endometriosis, my surgeon was able to ablate the lesions from my Fallopian tubes, but he was not comfortable working with the lesions on my bladder. For five years these implants continued to grow and spread, until my recent surgery in 2018 where endometriosis was excised from my bladder, colon, and ribs. Sadly, there were implants on my diaphragm that my surgeon did not feel comfortable removing as she was not trained in working with the thoracic cavity. In these cases of thoracic endometriosis, only a handful of doctors in the world are skilled enough to work side by side with a thoracic surgeon to carefully ablate the implants using a technique called VATS (video assisted thoracoscopic surgery). Thus, after waiting and suffering 5 years between surgeries to remove the endometriosis (for a total of 20 years) there were still residual implants left inside my body that I knew was going to spread eventually.

A few months after my surgery I went into the hospital with excruciating abdominal pain. Upon admitting me into the ER my blood work revealed elevated lipases at 2000. A repeat blood work showed the same spike and so I was admitted as an in patient to continue doing more tests. That story ended quite quickly as is the beast of the medical system: two doctors claimed I had pancreatitis but the more senior doctor disagreed and sent me home. I suffered – and continue to suffer – 2 whole months with this chronic debilitating pain. It so turned out that after around 7 weeks I started to exhibit symptoms of a colitis flare and was going to pull through at home until I had these weird heart pains which were new for me and fairly frightening to say the least. Skipping ahead to when I got to the ER, my lipases were at 4000 and this alarming number enticed the doctors to admit me once again, even though this wasn’t what I came into the hospital for. Back on the pancreatitis train we went, proceeding with blood work, a chest X-ray, fecal testing, two endoscopes and the list goes on. While my lipases continued to bob all over the place during my 7 day stay at the hospital, my colitis symptoms subsided and the mystery continued. This visit brought on the interest of the general medicine doctors and the gastroenterologists who ruled out acute pancreatitis (I don’t drink and I don’t have a gallbladder to form gallstones: the two main causes of acute pancreatitis). They failed to fully rule out autoimmune pancreatitis as my IGg4 levels were normal (as is the case with type 2, not type 1). They also failed to rule out EPI – exocrine pancreatic insufficiency – a disease in which your pancreas lacks the fundamental enzymes to break down foods into basic nutrients and thus your body does not absorb nutrients from foods you eat.

Along the way I had suggested that since none of the scans showed any abnormalities in the pancreas, any blocks or any stones, that perhaps this could be endometriosis on the pancreas, making it angry, and causing it to spike in lipases. The theory was not thrown out. In fact, the two teams of doctors thought it best to bring in the Gynaecological team for a consult to see how plausible this could be. First came the residents who stated this was an interesting theory although the endometriosis on organs such as the pancreas and liver were too rare. I begged the question “is it more rare to have it on my organs or on my diaphragm?” – needless to say the answer was not provided. The second step was to ask the attending doctor what he thought about this theory. Instead of having a voice he played the politically correct card and deferred to my endometriosis specialist who unbeknownst to me is the head of gynaecology at the hospital. Here is what she said:

I have never seen endometriosis on the pancreas in all my years of practice and I strongly believe this cannot be the case. She would be written up in a case study. I have told the patient that she should be on Lupron to use as a diagnostic tool to determine whether the pain she is having is in fact associated with endometriosis. I now, however, think that we should hold off on lupron as it could confound any other finding for this cause of pain, and so we will back out of this case until the other departments have run up against a wall,… and then we can bring lupron back on the table.

That, my friends, was the last time I heard from my endometriosis specialist aka my quarterback. I was livid. I was exhausted. I felt denied and betrayed all at once. The other piece of this story is that she refused to refer me to THE ONE AND ONLY doctor in Canada who is qualified to remove endo using VATS until I performed the lupron diagnostic. She never came back onto the case, and I fired her. Because, I can!

Today I continue to suffer from the abdominal pain, in the comfort of my own home, and have a few extra tests booked as the doctors are curious and excited to determine what is going on with my body. I cannot say I was denied proper care because the doctors at the Vancouver General Hospital have always gone above and beyond. What I can say is that while endometriosis on my pancreas may sound like a hilarious and rare probability, I have since been in touch with a handful of endo sisters who have either suspected or confirmed endometriosis on their pancreas and/or liver. So again, I ask you, is it really that rare, or is it medium rare?

—

Endometriosis is a disease that effects 1 in every 10 women. Some say it is genetic; others attribute the disease to early life trauma, and in some cases we hear cockamamie theories such as “women bring this upon themselves by having sex too early”. Women at the age of 14+ begin seeing a gynaecologist for yearly Pap smears. These doctors are specialized in the reproductive system but so few of them understand endometriosis. There are highly specialized endometriosis surgeons who have spent a great deal of time understanding how this disease spreads and furthermore how to eradicate the endometriomas from organs and spaces outside the womb. These surgeons, albeit experts in the field, may or may not be able to work with certain organs such as the bladder, the colon and in some cases even the diaphragm. Even worse, a very small number of endometriosis surgeons are trained in excision surgery; they continue to perform ablation surgeries that simply cauterize the lesions. The point is there are very few resources dedicated to better understanding this disease, and very few professionals who are specialized in the field of treating endometriosis.

If you are looking for proper care for your endometriosis please ask the questions you need to, to determine which piece of the puzzle your doctor is able to take care of. If your gynaecologist does not know how to treat endometriosis make sure they refer you to an endometriosis specialist. If a surgeon wants to perform surgery to treat the endometriosis make sure they are conducting an excision surgery – this is the only type of surgery that will remove the lesions and give your body a fighting chance.

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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.

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Too many pills

What a day!

I am finally well enough to talk about what happened two days ago.

As you know, my GI told me she wants me to increase my salofalk dose from 2 pills three times a day, to 8 pills once a day. Mother of goodness, that is a handful of pills. Not to mention the calcium (horse) pill, vitamin D (yes I take three of them I live in Canada), the daily vitamin I take for good measure, and the probiotic.

IMG_4841

On top of that my Endo specialist wants me to switch off my oral contraceptive and replace it with Visanne – the drug with absolutely no positive reviews. In a single day I flooded my body with drugs. No wonder in a matter of 4 hours I started my period … great!… had diarrhea.. and lucky me… vomiting! ugh.

The good news is that as quickly as it came, it went.

I chalk the period up as ‘Visanne just is what it is’. I came prepared for this one. But I was able to get a hold of my GI who said she wants to determine whether the diarrhea and vomiting are from the prednisone ween or from the salofalk. She suggested I go back to 2 pills three times a day (TID) and wait to see if the symptoms persist. If they do, we will need to top me up with prednisone until I am on the Entyvio.

The short of the long: symptoms have gone away so must have just been too much salofalk at once. Lets see what tomorrow brings.

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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.

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , , , 1 Comment

Endometriosis and Ulcerative Colitis – A new diagnosis Part 1

Well ladies, I have to first apologise for not being online for quite some time. The last post I wrote about skipping my periods still holds true, months later. But in addition to my endometriosis and the journey of skipping my periods I now have a new diagnosis which had led to my hiatus recently.

Here is what happened, but lets start at the very beginning (there may be some repeat from historical posts). Back in 2007 I had my gallbladder removed because of what we thought was gallstone pain. The gallstones weren’t exactly that big but the pain was unbearable, so out it went. Following the surgery I had a pain that developed – an ache really, and a tenderness – where my gallbladder should have been. It became flared over the years from foods but not really to any level of consistency.

Ok now circa 2012 I had my first endo surgery; a laparoscopy endometrial surgery to laser the cells in and around my uterus. I had stage 2 endometriosis that was hypothesised to exist since I was 14 but had no circumstance to remove it until 10 years later. Out it went too. And I was lucky… no pain for 5 whole years.

Lets now continue from where we left off last time. Confirmed thoracic endometriosis, stage 3 endometriosis, lesions near my diaphragm on the left side of my body, adhesions on both my tubes, and pressure on my sciatic nerve. My surgery is on the books for March, and I am currently skipping my periods. As was warned by my specialist, bleeding occurs quite frequently from over exposure of the veins in my endometrium due to (over) thinning of my lining. Great fun, let me tell you.

Yay, we are now all caught up to three weeks ago.

Three weeks ago I was on a work/vacation trip with my boyfriend in San Diego. I had a major endo flare near my diaphragm that really put a buzz kill on the trip. I wasn’t able to drink red wine, or eat too much food. I was in so much pain and exhausted from both the travel and the flare up. And yes, as you know, you just keep going. You make the most of the vacation and you walk on. I did… fairly successfully,… but was thankful at the end of the trip to be back home with my heating pad. Hold on to your hats ladies… this is where the fun begins.

That night I was curled up in bed and started to feel that lovely feeling of period-induced diarrhea. Great! Not only am I in pain, I may also be on my period. Ugh! I rushed to the bathroom, did my thang, and went back to bed. And then… an hour later, again. And again. Ok this is not normal. Did I catch a bug on my trip? I texted my boss who was with me in San Diego. Nope, he was fine. I texted my friends we visited in LA. They were fine too. My boyfriend was fine. I hadnt had a meal on my own that would have poisoned me. Soon I wasnt able to keep anything in. I stayed home from work the next day in anticipation that this 24-hour bug would work itself out of my body. 36 hours… 48 hours… I was now no longer able to stand up, I had excreted every little bit in my body.

I had no choice but to make my way to the hospital. I was sure this was a bug but wasn’t sure what the doctors could do for me. I was merely hoping they would hook me up to an IV and help me regain some energy through a drip. It was pretty impressive how quickly I was seen by the doctor, and they quickly did the routine culture panel. Sadly the results wouldn’t be back for days so I was sent home under the banner that I was infected by a virus and all I needed was rest. “If it gets worse, come back. But keep taking Pepto and it will slow things down”. Oh I took Pepto but no slowing down. In fact, it was getting worse.

***

Two days had gone by – my whole weekend – and no sign of getting better. Was I willing to go through this whole emergency room wait time again? What was my option? I not only had diarrhea at this point but tremendous abdominal pain from constantly excreting. I was frustrated and literally had no option. For the first time in years I called an ambulance. I didn’t know what to do when they arrived. I was able to stand, so I wasn’t dying. But I couldn’t do much else.

They walked me to the ambulance and sat me in the back seat. Bump, bump, bump… we finally get to the main entrance and wooooop. My head was spinning. They bring me a wheelchair, wheeled me in and “…….” that’s me throwing up everywhere! Probably the best thing that could have happened to me as it appears puke is an indicator that Im actually sick. Woohoo! I get quick access to a bed, a drip, and a warm blanket. For 6 hours! The other trigger – probably the most important take home here – was the amount of blood in my stool. Large, visible amounts of blood were in each bowel movement and I admit I didnt notice when I was pooping at home because of the toilet bowl water diluting the contents. But once I was asked to give a stool sample in a container it was very evident!

In my stream of consciousness I managed to phone my mother in Toronto – across the country – and asked her to help. She was on a flight, almost landed, and would be with me in no time. Just as she showed up, they carted me into a room to conduct a colonoscopy. It is probably key to note that I was not at the same hospital as two days before, and the culture results still weren’t in. The colonoscopy results would also take days but visualising my colon on the screen would at least help to see how much of my colon was swollen. The answer = the whole colon. It was spotlessly clean given the frequent bowel movements for the last 6 days, but very swollen and very angry.

(ok out of respect for your reading time, I am going to stop here and resume in another post so you have the option to keep reading or not)

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , 1 Comment