Diagnosed: Ulcerative Colitis

I’d like to premise this post by stating, if you can’t handle a topic dedicated to poops then this post is not for you! Also, not having health insurance is what prevented me from seeking medical treatment sooner; I do not recommend prolonging treatment for anyone, no ulcerative colitis journey is the same.

In the beginning…

The very first signs of Ulcerative Colitis presented itself in 2009 with rectal bleeding. Very pregnant at the time, the nurse assured me that it was just an internal hemorrhoid brought on by the pressure of weight gain. From what I had learned hemorrhoids come and go unless surgically removed- because I didn’t experience anything else associated with it I left it alone. While deployed in 2011 I fell in love with fitness and clean eating which, ironically, is what helped reveal a sickness.

The food had been poisoned! I was deployed so this made sense? The pain that awakened me felt like active labor. An urgency to go that forced me to run but I physically couldn’t move. The doctor told me it was food poisoning- half right- and unfortunately it wasn’t the only experience I had during that six months.

Something was sketchy…

The relationship I had with going to the bathroom drastically changed in 2016. Suddenly, no matter what or how much I ate within 30 minutes I needed to urgently use the restroom. For weeks at a time, I would be overcome with waves of abdominal cramping and an urgency to go followed by rectal bleeding. As quickly as it hit, it would be gone… not totally gone but not as much of a nuisance. In speaking with doctors I could be experiencing constipation and the bleeding could be caused by an irritated hemorrhoid.

This was not normal…

When you know, you know…right? I knew while on vacation. I wasn’t going it wasn’t because I couldnt, I just wasn’t. My appetite was gone. The ability to regulate my body temperature was gone, I either couldn’t get warm enough or I would be dripping sweat. Most of those symptoms I could attribute to my anxiety but mucus and intense itch, I could not. From the months of July to December of 2018 I had lost thirty pounds and from the end of September until diagnosis in January of 2019 I was continuously bleeding.

I had a pretty good idea, thanks to the internet, that I was dealing with ulcerative colitis….or cancer. Ha ha! I had been in a “flare” for 3 consecutive months. Mornings started around 4am with a sprint to the bathroom followed by four or five more trips before 7. I cannot tell you the last time I passed a solid bowel movement and I had been reduced to dry heaving from the butt. Gas was murderous and I couldn’t pass it because it was never just gas.

When I no longer had muscle control I wept. I felt humiliated cleaning bloody drops from the carpet that my husband found. How could I explain this to him, how unsexy and unfair for him to experience?

My blood pressure was becoming unstable and I started to experience these spells of near unconsciousness. I would end up on the floor, soaked with sweat, colorless and almost unable to express what was wrong. Standing at times was too exhausting and I would use a stool as I cooked dinner or sit on the ground as I dried my hair.

A light at the end of the tunnel…

In January I met with a GI specialist who ultimately scheduled me for the earliest colonoscopy. Relief! Now I had to drink 2 bottles of cranberry flavored liquid. Having drank castor oil to induce labor with my son, I thought it’d be a walk in the park! It wasn’t. I chugged the first bottle at 4pm and within an hour I was on the toilet. While it was great to not feel bloated and to relieve the pressure I felt from gas, my feet were falling asleep from how long I had to sit on the toilet.

When the clock struck 8 it was time to chug again, I grew nervous as the minutes ticked away and my eyes grew drowsy….please don’t let me poop in my sleep! Not certain I was fully awake when I was half way to the bathroom, full panic set in as I tried to decide where to go… Evan was sleeping feet from our bathroom. The kids were asleep across from their bathroom. My mother in law was in town to help so I couldn’t use her bathroom… I had to run downstairs. Poor decision making on my part; I ended up sitting on the toilet at 2am having to stare at what my body could no longer contain.

This was the most mortified I’ve ever felt and all I could do was pray no one woke up while I cleaned bloody pools off the floor, still stained with blood myself. The worst part is that no one understood what I was experiencing and because it was gross no one tried to understand.

Procedure time…

I didn’t realize how scared I was. My brush with cervical cancer statistically meant I was at high risk for colon cancer. Nerves kicked in. I remember being so confused about what the nurse had said to do that I left my panties on. The nurse looked puzzled for a moment when she sat me down and saw my panties and then she laughed, “how do you expect us to get in there if you leave those on?!” I provided comic relief for all the other nurses she proceeded to tell as well. The colonoscopy confirmed moderate ulcerative colitis. Good news is that it does not extend beyond my descending colon and there weren’t any pollops.

As of February 2019…

My official diagnosis is left sided ulcerative colitis which is an inflammatory bowel disease and considered an autoimmune disorder. There is no known cause and there is no cure but with almost one full month of Apriso, I am experiencing remission. Being sick for such a long time I am still struggling with exhaustion and bloat but I am now able to pass blood free, solid, bowel movements and pass gas- Hallelujah! To learn more about Ulcerative Colitis head over to the Chrohn’s and Colitis Fundation website. www.crohnscolitisfoundation.org

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