So Unexpected

They said it would be tough, but I wasn’t prepared for how intense this would be.

I had my second surgery on May 1st, 2018, where I removed my rectum (still have a very tiny piece left which is where my J-Pouch is connected to) and  had my J-Pouch created.

My alarm went off at 5am as we had to be at NYU hospital at 6am. The days leading up to the surgery,  I was a ball of emotions. Sure, I went through it before and knew somewhat what to expect but, honestly, are you ever fully ready for surgery?! Not me. I cried the day of, all day.

I was anxious as I knew this would be a tough surgery and recovery. However,I didn’t know that it would push me to limits I didn’t expect.  I had my husband, mom, and sister all there…my squad. They had a hard time finding my vein and had to use the area where blood gets drawn from.

They said once they gave me the anesthesia, they would place another one. At this point I was a hot mess because I learned that I would be getting an epidural due to the depth of the surgery. Just to give you an idea, my surgeon, for the 2nd phase (aka a loop ileostomy) only likes to cut through as he is doing a lot and getting close to my reproductive system. Moreover, he wants to make sure that the pouch is perfectly done.

It was a 6-hour surgery where he cut through every wall of skin & muscle to get to my rectum and small intestine. So, you can only imagine how LONG & PAINFUL the recovery was.

But before getting into that, let me continue with my surgery day. Per usual I prayed for my squad of saints. That day was also St. George’s feast which was a bonus since he can defeat any war; since this surgery to me was a war against my body, I knew I was in great hands, thank God.

As they wheeled me to those steel doors ( I picture it now), I cried saying good-bye to my family. I called on God, all the Saints, St. George & my dad to please be in the room and lead the surgery. Before they wheeled me into the room, 3 people came out to just confirm who I was: 2 nurses and my surgeon’s 2nd hand man who was also a surgeon.

As they were asking me my name, birth date, etc. they were also trying to comfort me. But, somehow in the midst of my waterfall tears, my eyes connected to one of the nurses whose name was, Karim. I clearly knew that was a middle-eastern name but didn’t want to assume but took the courage and said with my shaky voice, “Are you Egyptian?”

“Yes,” he said, “Me too”.

Then we both paused because naturally, we wanted to know if we were the same faith or not (not that it matters, but as Egyptians  it’s just fun to know). The whole day, I was praying to God & St. George to send me a form of comfort.

He then went, “You know today is St. George’s feast” and showed me the  screensaver on his phone of a picture of St. George and proceeds to tell me that he goes to St.George church in Brooklyn.

I cried even more from joy because this was God & St.George outwardly saying“your prayers have been answered and this nurse is who we sent to comfort you.”

I told Karim that he was the answer to my prayers and my angel nurse (I called him that and he would humbly disagree). I kept telling him he was my angel nurse and he would correct me and say no, this is his job and he was the lucky one to have met me, he told me how he wasn’t even supposed to be at this surgery but last minute his boss asked him to help with my surgery.

That is ALL GOD. No questions asked.

From that second until my whole recovery (and even today) my angel nurse has been there for me and I’m so blessed our paths crossed. I consider him family now.

Epidurals are the WORST in every aspect. So that’s that. The surgery took about 4-5 hours. Everything went well thank God. I have about a 4-inch incision at my bikini line.

It actually looks great; it looks like a light pencil line was drawn across. Funny note: every time my surgeon would visit me and just check out my surgical area, he would always say, “Wow, who is your surgeon? That incision is beautiful! He must be great.”

24 hours later, and pain suddenly hit me like a ton of bricks mixed with 500 trucks that ran me over a million times. For the whole week I was in the hospital, I was in indescribable pain. No pain medication was enough.

My surgeon and the pain management team were in my room daily to figure out a regiment. Either the drugs made me feel so loopy and not in control of my body (a feeling I hate),or it wasn’t doing anything but numbing and swelling my legs.

I felt so broken and hopeless. It was one thing after another: it was hell every time they had to get blood from me which was daily, the IV teams would even have a hard time, I had bruises everywhere, on top of that I needed a blood transfusion, and my pain each day was getting worse and worse to the point I would yell & cry. I honestly lost my faith.

I didn’t understand God’s will. I was highly upset with Him. He saw the pain and agony I’ve been dealing with in general since my UC crashed on me in 2016; why add more pain?

Especially since I was still having a hard time with swallowing the idea of surgeries and this new lifestyle as a whole. I was honestly fed up and angry with my body. No matter how often  my surgeon, nurses, and family reminded me that this was a very intense surgery, I just didn’t want to hear it and wanted my body to be back to “normal.”

But, what is normal? I personally have never had a “normal” life and I am not ungrateful for that. If anything, I am blessed for my unique life- but- at the same time, I can’t help but wonder the “what if’s”.

Nothing in life is easy, something I learned from the day I was born. I don’t mean that in a sarcastic way, but in the way that in life there are many hardships.  However, God knows each one and has a blessing to follow that hardship. Still, sometimes I want the quickest fix. And I learned the hard way that God needs me to lean more on Him and less on what I want.

This recovery was one for the books. One I want to erase (sometimes) but I will never forget. After staying in the hospital for a week, I was discharged and 2 weeks later I was back at the one place I had just come  from: the hospital. For 2 weeks I was experiencing extreme abdominal pain to the point where I couldn’t eat and was losing weight. I didn’t understand why this was happening.

I felt so let down by God and disappointed. I felt that I should have never done any surgeries. I felt that I lost who I was as a person.

I was in the hospital for a whole week…again. I knew from the bat it was inflammation which I was very annoyed about as I wasn’t even using my j-pouch. I knew I needed antibiotics to get it under control (this is where patient advocacy comes into play. As patients we know more about our body than any medical staff, and we need to be able to communicate that).

I knew I needed to get a scope done to determine the inflammation but instead I had to do 3 different tests which showed everything was fine. So for 4 days I was in constant pain and kept pushing for a scope as I knew I needed it.

Just to add more to the mix, I was getting 104 degree fevers and we didn’t know why. Four  days later, it turns out the IV that I received in the ER was bad and was causing my fevers. On top of that, I was malnourished and had to get a picc line to receive TPN (food).

To get one in, is VERY awful. Again, I felt SO defeated and didn’t understand why. Finally, after 4 days they did a scope and found exactly what I knew and needed. I went home, again after a week with antibiotics and a picc line. I left the hospital so angry & so uncertain about my life.

A recovery that I thought would take a month took 2 and half. Each night I would cry from nausea, frustration, and honestly just being so fatigued from lack of food and sleep.I literally had to reteach my body to eat again, something I use to take for granted, especially when I was in remission. I didn’t understand how my body got to this point, but it did.

I would yell at God, the saints, and my dad daily. I felt so alone. I felt like a prisoner in my own body. And I wanted out immediately! I just wanted to be a 31 year-old married woman who just enjoyed the simple things in life. I didn’t want anything more than to feel like myself again. I was having a hard time understanding God and hearing Him. Nothing made sense to me.

Naturally, I started to creep into depression. I mean not to play the victim card but my plate was overflowing and I didn’t have the strength to hold it on my own. My family were the ones that truly held it for me day in and day out. Reminding me daily everything will be ok.

My primary doctor who would visit me and call me to reassure me that everything would l be ok. I had what I wanted to hear but my body wasn’t giving me what I wanted. I would cry from misery. I just wanted to escape. I wanted my dad to just be there. I wanted the “old Moniqua” back (whoever that may be).

My mom was my rock during my dark recovery days. I could cry just thinking about how without her, I literally wouldn’t have made it;  I mean that. This lady would stay up with me every night when I couldn’t sleep, wipe my tears, hold my hand, rub my back, constantly reassure me, deal with my angry outbursts, and did it all with faith & love.

Mom, I really don’t understand how you deal with me and do all you do with such grace. You are the absolute definition of an unconditional loving mother. Because of you, I’ve been able to get through my hardest days.

Besides God, YOU got me through this. If the walls of your house could speak, it would say so much of what you and I have been through those 2 months. Even though our days were hard and unpredictable, our bond without a doubt has become stronger and deeper and if anything I am so thankful for that and wouldn’t change it for the world! I love you. I adore you. I thank you!

As I sit here and write this blog, I cry because at one point I didn’t know how I was going to make it through this phase. But, here I am writing that I did; not alone may I add, but because I let God take the wheel. I finally gave up the keys and let Him drive me through this.

Best part is I didn’t have to figure anything out, I had Him do that. I just had to believe. That is something I still struggle with; not because I’m untrusting, but because my anxiety gets the best of me.

I learned A LOT in those 2 and half months. I learned that I have no control of my life and that I fully have to leave it in His hands. I learned how my family-especially my mom- are freakin rock stars that without them I’d be still drowning. I learned it’s okay to feel whatever it is you are feeling. It’s okay to be upset and angry but to return back to Him. I learned that my mind is a strong weapon and is a good amount of what can make me or break me.

And lastly, I learned that I AM STRONGER THAN I EVER THOUGHT I COULD BE. I conquered another battlefield. I learned that my husband and I have been through SO much and tested but our LOVE has conquered all that. I love you, Mikey!

Picc line free, eating burgers, fries, ice cream and bag-free! I love my story and all the pain, struggles and blessings I have gone through. My journey will never be over and I love that because I get to keep adding more scars and more countless blessings! God is good.

Thank you all for you constant love and support especially all that came for my first walk for the CCFA walk–I am constantly reminded of how incredibly blessed I am. Love you all!

Moniqua Demetrious is 31 year-old woman born and raised in New Jersey, and has been married a little over 3 years. Her passion is in fashion, even planning, enjoying all types of music, and advocating for her autoimmune disease. She is nothing without her faith, her dad who is now an Angel, her husband, family, and friends. You can read more about her journey on her blog here and her Instagram, here.

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