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.

Thoracic endo – just a theory?

Hi ladies

I apologize for not blogging in the last little while but it appears my body may have given up on me recently. Last month, during mid-cycle I was experiencing odd sternum pain. I was able to ‘crack’ it which doesn’t make sense because its not a joint. In any case, this cycle has been even more bizarre. It started with menses during mid-cycle followed by chronic thoracic pain that took me to the hospital as it was becoming harder to breathe. I was sent home with inconclusive results and was told to come back if it got worse. After 5 days of pain, I got my period again, two days earlier than expected but luckily the thoracic pain subsided. Unfortunately the period lasted a day and a half, with the thoracic pain coming back with a vengeance.

While at the hospital I felt, like so many of you have experienced, like a theorist. Maybe its this? Maybe its that? Maybe the dots don’t connect. I don’t know. I’m not a doctor. I’m a patient with odd symptoms and I just want someone to listen.

I was amazed at the doctor there. The first doctor (the second doctor was worse than the devil so I wont tell you about her. Dr. Chen from St Paul’s emerg. I wont tell you about her). In any case this angel of a doctor said ‘lets take endo out of the equation right now, and see what we can rule out’. I had an x-ray of the chest, blood and urine test, ECG, and an abdo-pelvic ultrasound. All came back negative. At the same time that dang right shoulder pain kept coming in and out, which led us to believe the pain was in fact originating from the pancreatic area and not referred pain to the abdomen. We were getting somewhere. I was scheduled next to see a gynecologist who would then take me to the next round of inspections and perhaps accelerate my referral into the Women’s Pain and Endo clinic here in BC. But during shift change the devil showed up, stopped my morphine and told me to go home; that there was nothing emerg could do. That was that.

So now I am in a fury of emails trying to be seen by someone, somewhere, who will take this seriously. I have a high pain tolerance and have pushed through an office job with tons of travel for the last 10 years. But this, this is horrible!

Feel free to email me your stories and I can share them here. Im in a sharing mood. Otherwise, wish me luck and I will try to amuse you with more endo health related stories soon.