The Tango Between Two Diseases

Symptoms from Endometriosis and Ulcerative Colitis

I feel like my endo and my UC have been doing the tango, competing for first prize. On days when my UC  tends to be on the quiet side, my endo craves to steal the scene and do a few painful twirls on my diaphragm. Then they swap back and forth – never a dull moment! For those of you who have both diseases and potentially have diaphramatic or thoracic endo pain, you know that the localized pain is very similar in location and intensity to your UC pain. Lets see if I can explain with an image…

female pain points v2

The image above is a great depiction of the internal female body, and the areas that are most affected by the two diseases. I have tried to do a mock up of where my pain areas are (pink = endometriosis; orange = ulcerative colitis). As you can see the areas that I feel endo pain are very similar to the areas I feel UC pain. For instance, I have endometriosis on my ovaries (not shown here) and adhesions on my left ovary which impacts my left sciatic nerve. However, after my entyvio infusions or during extreme UC flare up, I feel intense joint pain in both my left and right hips. While my diaphragmatic endo pain appears to be quite higher up than the upper colon pain these areas truly are close together when you are trying to discern one from the other.  And lastly, pain in abdomen and areas neighboring the abdomen caused referred pain up to the right shoulder.

Note: I also dont have a gallbladder so this is why there are complications between my liver and my colon, and why I take bile salts when I remember to.

Some good news though!

  1. Today I had my very first firm, intact, pain free poop in 3 months!A shout out to the ‘Ulcerative Colitis’ facebook group who confirmed that it IS possible to start feeling and seeing results after only two loading doses of Entyvio. I was worried at first because after both first and second loading doses I was feeling abdominal pain that eventually subsides; with the last loading dose causing extreme joint pain. When my UC joint pain subsided I was unfortunately left with sciatic pain from my endo,… but whose counting really?!? *insert eye roll here*.
  2. I am on schedule for my excision surgery on March 12th with one of the best doctors in the industry. It will be a long and drastic procedure that will aim to remove endo from the typical places as well as up near my diaphragm. The only thing that could stop the surgery from happening is if I have a flare up but Im doing everything in my power to prevent that from happening! I am so excited!
  3. I need a third positive thing…oh.. i know! I just added eggplant in my diet!

 

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.

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)