Tag: primary sclerosing cholangitis

My body is attacking itself

Having multiple autoimmune diseases

I was born a fantastically healthy baby, with no jaundice, asthma, or abnormalities that would see me through to adulthood. Until I was 14 and the much raved about menstrual periods started.  I was overjoyed by the fact that I was part of the club that I didnt bother mentioning to anyone else the pain and flow that accompanied mine. At the age of 14, I was sent to the hospital with period pain and was pre-diagnosed by a brilliant doctor, a disease called Endometriosis. At the time we didnt know much about it but several years later the industry learned that it was an autoimmune disease. Up until recently it was believed that endometriosis was endometrial tissue that escaped back inside the body – outside the uterus – onto organs. But now, we have learned that endometriosis is endometrial- LIKE tissue that forms on organs out of bloody nowhere, and acts like your endometrium – blood, pain and all. WTF!

Starting around my 25th birthday I started having very rare, intense pain in my upper abdomen. It would strike out of nowhere, often accompanied with alcohol, and would send me to the hospital. The pain was followed by throwing up, blacking out, and waking up with a doctor telling me I drank to much and sent me home. This happened about once a year for 4 years. Doctors came up with everything from alcoholism to anxiety to phantom pains. Nah…. didnt add up.

Just shy of 2018 I was diagnosed with severe ulcerative colitis. Ok this one threw me. I mean I had no idea and apparently I have had it for years. I just assumed the diarrhea and wrenching pain was from my endo. Ive since been treated with Entyvio and so far so good. Well,… until last week.

Right after Canada day – no alcohol in site – my upper abdominal pain kicked back in. I had remnants of it when they tried to give me a 5-asa back in November. And it kind of feels like my diaphragmatic endo. But its not. I assure you. This pain has lasted 9 days and counting.

At first they thought it was pancreatitis but they ruled that out with a CT Scan. They are still exploring PSC which they think they found back in November. That should be ruled out on Thursday with an MRcp. And its not my gallbladder which was taken out back in 2007 which later was hypothesized was due to endo and not gallstones.

Which organ is next? Why is my body attacking itself? What is the cause and are they all linked? IS there one cure to fix it all?

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , , , Leave a comment

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!

 

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , Leave a comment

My first GI follow up was no gem

Initial GI visits after Diagnosis of IBD

First let me start off by saying I am so lucky to have this GI. She is smart, thinks outside the box, and has very good bedside manner. She had seen me when I was admitted into the ER and performed my colonoscopy. Unfortunately throughout the 10 days I was at the hospital, she had planned vacation and was not able to see me through the duration.

In any case, she scheduled a longer meeting with me this afternoon to go over the plan. I told her about the mouth sores, the seemingly painful bowel movements and the cramping. She was not impressed with the progress so decided that the Salofalk was probably not going to be a long term solution for me. Recall I had already tried another mesalomine so we had done our due diligence in this category of drugs. Her suggestion was to start me on a biologic – Entyvio – which is administered as an infusion rather than oral pills. I will now have to have this administered at a special clinic. Dang!

The next big thing that happened during the appointment was that we went over the MRcP results which I was led to believe came back negative. Turns out there may be slight indication of possible primary sclerosing cholangitis (PSC). The stats tell me that a very very high percentage of those with PSC will come to develop IBD, whereas only 4% of those with IBD will develop PSC. This I can handle, but in people with PSC it turns out there is also an increased chance in developing colon cancer. And THEREFORE I will be enduring colonoscopies much more frequently than the average bear. Holy Crap! This is when I grabbed for a tissue and took a deep breath. I can handle information like this but I dont take lightly to the C word.

To come full circle, until the folks at Entyvio call me I am to up my dosage of Salofalk to 8 pills (4g) taken all at once, once a day (rather than the 1g/2 pills taken three times a day). The rest is to remain the same and I am to continue on the prednisone weening. Also, nothing to do about the mouth sores and hopefully the Entyvio will fix this too.

by Categories: Ulcerative Colitis JourneyTags: , , , , , , Leave a comment