Had this near my bed at the hospital. He’s forever with me ❤
October 3, 2017 my first surgery ever.
As mentioned before the word “surgery”, was a word I would dodge in everyway possible. I didn’t want to accept it or do it. I didn’t think I was even that chronic, I guess I was slightly in denial of my situation. I wanted to just be “normal” and not have to deal with this. I wanted to do the things I once did and that I took for granted. But, I had to face God’s will and trust that this is the right decision for me and my future. I prayed and cried when I knew that this was my fate. I prayed daily to God to make it super clear for me (and boy He did), I cried because I was terrified to have 3 surgeries and even with the amazing support I had I wanted my dad physically here to hold my hand. I cried because I no longer wanted to be in pain but knew with this option I still have a long journey ahead of me. I cried because that’s how I show my emotions in good and bad.
I had about a month from when I made my appointment to meet with the surgeon and discuss wether or not surgery is for me. I met with him the last week of September but it seemed like a lifetime to get to that date. I finally got to that date but despite this being a major appointment, it was also a major hassle for me as my appointment time was at 10am (I didn’t think that through) and as previously mentioned I would run to the bathroom from the middle of the night until like 2pm next day so having anything earlier then that was a nightmare for me. So, I literally asked God that if I am meant to get this surgery that He than gets me to NYU with no accidents or urges to and than back home. I asked Him to allow this day to be free of pain even if my anxiety was sky high (natural that will cause my UC to trigger more but clearly being anxious is part of the disease SO that’s out of my hand) and that when I need a bathroom to have it near by and available. Not your typical prayer but truth is besides that day, it was my regular prayer when I had to leave my house. Also, this day and most days, I never would eat until I was settled near a bathroom so per usual, I would doggy bag my breakfast, snack, and lunch to eat when I can. Unfortunately, most of my days were not as easy as this particular day not because God didn’t love me because it wasn’t anywhere near that but this was my cross and disease so natural all these ugly symptoms came with it.
Anyway, back to that day, I got to my appointment safe and sound with no bathroom needs until I stepped into the building which I was able to make it to a bathroom. I had went to the bathroom at least 5 times before my appointment. As I was waiting for Mikey (he went to park the car), I sat quietly alone with 3 other people in the waiting room just crying my eyes out and praying to God to give me the peace, understanding, and comfort I desperately needed. As I was waiting 2 people out of the 3 who were a married couple probably in their late 70s were sitting a couple chairs down from where Mikey and I were. As I continued to pray and cry, the wife came up to me (keep in mind we never spoke to each other at all) held my hand and said ” You are in great hands, Dr. Remzi is a great surgeon. He did surgery on my husband a couple of months ago and his phase 2 is tomorrow.” As she went to go back to sit, I just smiled within my heart and cried more from the overwhelming love this lady so willingly gave to me and how God was quickly answering my prayer again. I thanked them so much for giving me that message as I so needed it. I knew my surgeon was top 5 in the nation but it was so nice to hear from a fellow UC-er. The fact he told me he felt great and it was the best decision he has made, truly increased my hope which I needed. So to keep track that was answer #2 that God gave me (the first was getting to NYU with no bathroom urges). As we were still waiting, this man in a suit walks in (he had walked in earlier as I was waiting for Mikey to come) and Mikey knew him from our Egyptian community. They said hello and he asked Mikey if he was ok, Mikey explained to him it was me and he told me with no hesitation that Dr. Remzi is a great doctor and that I’m in good hands. He knew this because he was the head of the surgery department and told us if we need anything at all to let him know. Blessing #3.
We finally get called in and Dr. Remzi overhears our convo with the Egyptian gentleman and instantly says “so, you are Egyptian?” and from there that broke the ice. He came from Cleveland Clinic and told us how he had done surgery on our late Pope, Pope Shenouda III and the Pope was very special to my father and my family as we had a close relationship with him so that right there was blessing #4, he had done surgery on a saint who I admire and love. We started to discuss my symptoms and more importantly how often I run to the restroom and bleed and that was at least 20 times a day. This automatically made me a high candidate for surgery. I respected that because he didn’t believe anyone just needed surgery as he took his job very seriously. He and the PA really made me feel at ease and he humbly told me that his track record is a 96% success rate which is amazing! He doesn’t rush recovery or phases in between each surgery (he waits at least 6 months between each). He explained to me how its a 3 phase surgery: the first is an ileostomy where he removes my colon, 2nd is a loop ileostomy where he removes my rectum and makes the j-pouch (basically elongating my small intestine and bringing it to my anus), lastly reconstructing or the reversal which is bringing my stoma inside and no longer having to live with an ostomy bag. However, because he was so qualified and well known, his schedule was booked. He told me that they will do their best to get me in but he is unsure when. As he walked out of the room, his PA turned to me and said “we just got a cancellation for Oct.3rd (which was in a week from when I was there!) and we will most likely give you that day”. At that point it hit me that this is happening. I did not think I would get in that quick but once again that was God looking after me (Blessing #5). I got the confirmation call the next day and my pre-op appointment for the day before my surgery. I was honestly in disbelief that this was happening.
My pre-op appointment was also very emotional for many reasons, it was the last day of my UC effecting me but a start of a whole new chapter the next day. I was so overwhelmed when I met the wound care nurse, she was so sweet but showing and telling me things I’ve never heard of. Granted I prepped myself by following other bloggers who have had an ileostomy and ostomy bag but it’s still never enough. She marked me up where my stoma would work best on my body but she told me to not be alarmed if it isn’t in that location as he may see something different once he is doing the surgery. That day was just a slow and quiet day for me. I felt like I was standing still in time and everyone and everything was just going 100 mph around me. I was on a liquid diet that day, had to drink a prep drink to clear my colon and shower with special soap night before and day of. To make myself feel decent I got a mani, pedi, and straighten my hair…I’m that girl haha. 11:30pm I went to bed.
October 3rd, the big day. I woke up at 6am as we had to be at the hospital at 8am. I was still in awe as to what I was going to get done. We park our car and head up to pre-admission and the water works began. My mom, sister, and Mikey’s parents were all coming to show me love and support. I immediately get called into a room to change and get settle to take my vitals and talk with nurses and anesthesiologists. Mikey came in with me and than my sister and mom came in once they arrived. I was very quiet and just kept praying and asking my Dad to be with me. I got there at 8am and didn’t get taken back until 11:30am. I said my “see you later” and gave my hugs and kisses to Mikey, my mom, sister, and my in-laws. As I was rolled away in a wheelchair crying hysterically (if we haven’t figured out by now–I am the biggest baby and proud lol) by a sweet lady whose job is to literally be an emotional supporter. She spoke with me as I waited for my turn (literally there was a wheelchair ahead of me) to enter the surgical area. A nurse came out to get me, he wheeled me into the room. During those few minuets, it felt like a scene from ER, just madness everywhere and again feeling like I was going in slow motion. He entered me in the room where there were other nurses, the 2 anesthesiologists, and my silver metal “bed” with a foam “pillow”. I got into position and just remembering saying my prayers to God and my army of Saints and lastly my sweet angel, my dad. I told him to please hold my hand through this whole thing. Dr. Ramzi was still not in, so I figured we would wait until they put me to sleep but they didn’t waste any time. The female anesthesiologist asked me if I needed anything before they give me the medication, I asked her if she could just hold my hand and she did so willingly and with a smile. And within seconds I was out cold. I must say from pre-op to my whole stay at the hospital the staff were all amazing! This made it so much easier to get through.
I woke up in the recovery room very very out of it and in and out of sleep. I do not remember much or who came to see me during this time. My surgery was about 2 hours and Dr. Remzi had told my family that I definitely needed this surgery as my colon was literally falling apart as he was removing it but besides that all went well thank God. This may sound weird but it was nice to hear that my colon was falling apart to seal the deal that I needed this more than ever, not that I doubted God but it was my way of closing the chapter. I even wanted to see my colon but he wouldn’t let me. Call me crazy but I wanted to physically say good ridden to what was causing me so much agony in every aspect of my life. I mean it was part of who I am today, it was almost like a mini death since it was a dead non-working colon that was removed from me for good. But, as the saying goes, no colon still rollin. So, apparently as soon as I woke up (this I recall a bit) I saw the nurse and said, I quote ” I need to see my dad, where is he?” So obviously the nurse not knowing anything about my dad says, “Yes of course, I’m going to get him and your family now to see you.” As she said that in my mind I smiled as I thought “Oh, this poor nurse clearly doesn’t know he’s no longer alive. But if she can get him, I’m all about it! As I’ve been trying to get him back for the last 8 years!” haha I laugh because it was so pure and innocent on her end and because I was so out of it, I couldn’t articulate that to her. So, my husband comes and than my mom and sister. When I saw them I asked them where dad was so the sweet nurse goes, “Yes where is your father? She’s been asking for him and I told her he would come.” So my sister, Mia looks at me and says “Sissy, you know where dad is, he’s in heaven.” Mia than looks at the nurse and smiles and the nurse looks at my sister with a little bit of tears and says “I’m so sorry. That just gave me the chills.” In the meantime my mom keeps asking me if I saw my dad in my sleep but I couldn’t answer due to the drowsiness I was feeling.
After about 2 hours, they place me in a 2 bedroom room. I emphasis 2 because they have rooms with 4 bedrooms and if I would have gotten that, than Mikey wouldn’t have been able to sleep with me over night (Blessing #6) and that was something I really needed as I didn’t want to be alone. Mikey was amazing and honestly stepped up to the plate as he would take the night shift with me daily and sleep on 2 chairs and deal with my panic attacks and pain from the surgery and meds I was on. He would than go home and work from home than come back at night. My mom took the day shift and would travel about an hour and half to sit with me during the day and also take care of me. I’m honestly SO blessed for my amazing husband and Mom for all they did for me even when I got home as well. My sissy for coming the day of my surgery despite having a newborn and also visiting me and constantly checking on me. Mikey’s family constantly checking on me and his dad and sister visiting me. And than my amazing family and friends who trucked all the way to NYU to visit me and to the ones who came to me once I got home, you have no idea how much joy this brought me. From all the amazing nurses I had, you guys truly give with all your heart and care for your patients as though we are family. All these people are my constant blessings that God has showered me with. I honestly, could have not gotten through this difficult time without all your love, support, and prayers. When I tell you I was and still am showered with so much undeserving love, it at times brings tears to my eyes as I’m so humbled and touched by everyone’s generous love towards Mikey and I. I can’t thank you all enough, I love you all deeply.(Blessing #7)
Never! Sent to me by my sister’s sister-in-law. Cracks me up 🙂
So, did I see my dad during my surgery as I was asleep? I did. Wether I remember details or not, I know he was in that room holding my hand. I know that because he would have done it if he was physically here. He was the last person I called on before I went to sleep and he is the first person I mentioned when I woke up. I love you, Dad. I love you for constantly holding my hands through this rough journey, for wiping my tears during rough days, for bringing clarity to my confusions, for helping make life changing decisions, for loving me every second and not leaving my side. You mean the absolute world to me. You are forever the first and last person I think of each and every day. I am forever grateful to be called your daughter. You are my eternal blessing…
So that is my UC to surgery journey from start but not yet finished. My next surgery, phase 2 is April 12, 2018 God willing.
My current life. Mr. Safety all bundled up in his bag.