09.06.2019

Part 2: Ileostomy Surgery

Read part 1: colonic inertia

May 3. Today was the day I was scheduled to finalize the loop ileostomy surgical plan and decide on the stoma markings on my belly. A stoma is the technical name of the inch of intestine sticking outside the belly. I arrived and brought my parents along, because I wanted them to get the rundown of this surgery too. It’s nice my family is close and I can ask them to be that second ear in these big appointments. The Methodist hospital has 4 WCON (Wound, Ostomy, and Continence Nurse’s) and I have gotten to work with all of them. Each one is incredibly caring and intelligent about all things ostomy.

The nurse, Kate marked 2 sites on the right side of my abdomen. I sat and stood up and bended at my waist. We wanted to make sure the stoma was not in that waist crease, or else I will have problems down the line with the wafer and bag sticking. She marked 2 spots on the right side of my abdomen for Dr. B to choose from based on my anatomy (and he won’t know which one will work better until I am in the OR). I had heard that a lower stoma placements is easier to empty the bag, because it’s closer to the toilet and there would be less of a splash.  She put a clear waterproof piece of tape over each one that would last until my surgery day. She then handed me the sample box of Hollister brand ostomy bags.

I held my first ostomy bag that day and was so intrigued. I didn’t know any of the technical names, but looking back, I was given a 1 piece and a 2 piece ostomy bag. It was strange to stick one on my belly. I wasn’t too concerned about the look of it, but right away I knew that I was going to live in high waisted bottoms and flowy tops. My uncle actually works for Hollister medical supply company as an engineer, so he was pretty excited about the supplies that I would be using!

This handy manual is how I began learning about each of the supplies. I was overwhelmed at first thinking about needing “supplies” to function. But I quickly snapped out of that mind frame and realized how lucky I am that I am getting this surgery and that I get to use these products. My ostomy was going to give me my life back. So it was time to embrace the medical supplies and nerd out the research and terms. That change of mind frame worked, and I quickly became invested in learning and researching how my life will change (for the better) and how I will be caring for my body from now on. 

May 8. I headed to my family practice doctor to get a medical checkup and clearance for my surgery. I was cleared for surgery but she did bring up the concern that my liver enzymes were considerably high (the highest in my life), and it was likely due to being chronically constipated and my body couldn’t break down the waste anymore. Plus all the laxative medications I was on wasn’t helping my liver. My thyroid was low too. Interesting enough, I got my liver enzymes and thyroid checked 1 month after surgery and they both went back into the normal range.

March 11. I got anointing from my priest Fr. T. It is important to get anointing of the sick before a major surgery as a Catholic. 

The whole week before my ileostomy surgery, I started the colon prep. Because of the nature of my surgery, my surgeon wanted my colon as cleaned out as possible. A loop ileostomy essentially is pulling the small intestine through the abdomen and the food waste exists through this hole into an ostomy bag attached to the skin.  The colon will still be sitting inside me, but nothing will move through it. 

A loop ileostomy, it’s quite fascinating! Essentially for diseases like colitis, a loop ileostomy can be preformed and after a period of time goes by, the diseased colon heals, and two ends of the intestine can be stitched back up so in the end you don’t loose any part of your intestine.

Colonic inertia isn’t something that can heal overtime, but knowing this about the loop ileostomy goes to show that this step is less invasive compared to taking the whole colon out right away. In my case, the loop ileostomy is used as a “final-test” to prove 100% if my colon is really the culprit and is paralyzed. If it is paralyzed, then I will just have my colon taken out in about a year. My surgeon (Dr. B) said we would know right away how my digestive system works without a colon, because my small intestine will empty into my bag all on its own and pretty quickly. 

For the loop ileostomy, an incision will be made 2/3 of the way through a section of the small intestine. Both ends will be pulled through into an opening of my abdominal wall to create a stoma. Essentially I will have two holes, but food only comes out through the hole that is connected to my stomach and the majority of my small intestine. The other hole, which is much smaller and inactive is connected to the 5 feet of colon that is paralyzed. So my colon will just be sitting inside my body unused. Essentially this is safe for a year, as long as the sitting colon doesn’t get diseased. Its not common, but it’s always a possibility with an inactive organ

I am a natural planner, so I was very intentional each day the week before my surgery to stick to the liquid diet, medications and enemas. I did a lot of planning for after surgery as well. I stocked up on juices, vegetable broth, tomato soup, baby food pouches, plain proteins (like canned tuna), baby food pouches, and anything that sounded good on the low residue diet. I got cases of electrolyte drinks for after surgery as well as this stevia sweetened electrolyte powder. I was told with an ostomy, I will loose electrolytes faster because my colon will be bypassed. The biggest preparation was to search for the best and most waterproof mattress covers for the so called ostomy “explosions” I read about. I wasn’t quite sure how prepared I needed my bed to be, so I bought a few covers from linen spa (and thankfully they still are holding up!). I cleaned out the cabinets in my bathroom to make room for the many boxes of ostomy supplies. I watched several youtube videos about other people who have an ostomy and found a ton of educational videos and articles on Hollisters website. Changing an ostomy bag was foreign, but the videos helped to expose me to what I was in for. I also joined a big ostomy facebook group, and searched and read some posts about what to expect after surgery. What did it tell you.. I like to be prepared! 

Like I mentioned, since my colon will just be sitting inside me for a year, I wanted to make sure everything was out before surgery! The plan that Dr. B created for me was for a thorough clean out. For those of you interested in the exact details of my prep, here it is! I was to do an enema, a colonoscopy gallon bowel prep and doucolax tablets 3 days before surgery. 2 days before surgery I was to start only on clear liquids. 1 day before surgery I was to combine the instructions of the gallon bowel prep with clear liquids. Thankfully this plan worked, but it was the night before surgery before anything got moving (that is just proof how inactive my colon was). So I got about 1 hour of sleep that night between all the bathroom visits. I was too excited though for this life changing surgery that sleep didn’t matter. Anyways, I was going to be under general anesthesia soon enough and can sleep then. 

May 13 2019. Today finally is here! I was anxiously excited and thought how this day could change my whole life around. This could be the fix I had always dreamed of. 7 years ago I got sick around this time of year, so weak, that I barely made it to walk across the stage at my high school graduation. God had a plan for my life though and if it wasn’t for everything I have gone through, I wouldn’t be the same person. In Gods eyes, 7 is the number of perfection. I remembered that, as well as God’s promise to me that someday I would be better. “Could today really be the day?”, I thought to myself. Given that it was the feast day of Our Lady of Fatima, I knew a miracle was going to happen. I now look back and can clearly see that all the prayers being said from all my relatives and friends, really were heard. 

6:00 am. A few more bathroom trips and I wiped my body down with the specialty surgical wipes my hospital provided for me to sterilize my skin with. Last night I showered with an antibacterial soap (Dial brand) as well. 

8:00 am. My hospital bag was packed, my colon was thoroughly cleaned and my family was along side of me. We arrived at the Methodist hospital in St. Louis Park at 9:00am and got checked into “Surgery admissions”. I felt like I was a pro at swiftly answering the yes/no questions, filling out forms and knowing where to go. I like the atmosphere of hospitals, partly because I love learning about the human body and medicine. Hospitals are familiar now, and I fully trusted my surgeon and his team to cut open my colon today. 

9:30 am. I am checked into the surgical preparation wing and given the room in the corner that had “curtain” walls, so each patient had privacy. I am given a belongings bag and get dressed in their hospital gown. They slip on those bootie socks and start to go over my medications and allergies. Since I have a local anesthetic allergy, I suggested we skip the pelvic block Dr. B typically uses with colon surgery patients. I assured them that I would be ok and even suggested we swap out the narcotics afterwards for iv tylenol. I have a higher pain threshold and remember with both sinus surgeries, never needing pain meds. I don’t get numbing medication at the dentist and with both my colonoscopy and endoscopy, I opted them being unmedicated. The one time I did take a strong pain med, it stopped my whole digestive system and caused vomiting for days. Plus, pain is unfortunately something I have just learned to cope with.

Deciding this was beyond my nurse, so she paged the anesthesiologist. After talking with me for a few minutes, and telling him everything I listed above, he too was comfortable with general anesthesia and just the typical meds used in the OR. I brought along certified gluten free tylenol, naproxen, and ibuprofen (target brand is labeled glute free), just incase the nurse suggested it after surgery during recovery. 

10:00 am. My mom, dad and sister were brought to the room and we all squeezed together in there. Of course we had to facetime my older sister and niece (because I guess we needed the whole family to wish me farewell. My brother had just gotten home from his mission trip and we were eagerly awaiting him to get to the hospital. The IV was placed and they had to try at least 4 times, which is common for my veins. I am fascinated by nursing and watch them intently as the nurses try to place the IV. Eventually they got it and I was reassuring the other nurses that my veins are tough, and they did a good job trying. I was started on IV flagyl and ciprofloxacin for a 1x dose which is needed before this type of colon surgery. I was then started on the IV fluids as well. I think I got up to go use the restroom 5x within those 2 hours of waiting because of all the liquids and nervousness. 

12:00 pm. Dr. B finally comes walking into my room. He smiles big seeing my whole family sitting squished up beside my bed. I am pretty lucky to have their support! He goes over the plan one last time of what we are doing. A loop ileostomy for colonic inertia. He trusted my decision for minimal pain management and agreed due to my motility issue, the iv tylenol is best. The last thing I want is an ileus after surgery (which is quite common).

I am lucky to have a surgical team who trusts me and takes what I say seriously as well. I like to go into big things like this well prepared and informed, and I think they could tell and appreciated I knew what I was talking about. It’s not everyday my surgeon gets a case where the patient is excited about surgery. But that was me, I was excited and hopeful. I knew today my body was going to find relief and it was the beginning of health again. Dr. B looks again at both potential stoma markings on my stomach. I pointed to the lower one and said this is the one I like and could live with forever. He agreed, that was an ideal spot and said if my intestine lines up right, he will definitely use that spot. Things were all set, but first he said lunch was necessary so he wasn’t hungry operating. 

12:45 pm. My brother shows up! Phew, what incredible timing! Not a minute later, the OR nurses come to wheel me away and push the first round of pre-anesthesia. I only remember the goodbye hugs and then making it through those initial doors. I guess I was also tired from not sleeping much, but those meds are strong. 

It was roughly a 2 hour surgery and my family was in the waiting room, waiting for me. I was in the recovery unit, where you are usually taken after surgery. Dr. B finished earlier then expected and I woke up pretty quick from anesthesia. I think the first thing I remembered was waking up and reaching down to my stomach. I felt a crinkle of the ostomy bag beneath my gown. The biggest question I had was “where did he place the stoma?” I am pretty particular with clothes and actually don’t typically wear watches or accessories because I find them bothersome. I figured this ostomy bag was going to be bothersome, but if it was placed closely to my bellybutton and more so in the center of my body, I was less likely to knock it with things I carry.

4:00 pm. I was wheeled up to my room on floor 4 East. I was unusually alert for just having surgery, but that is pretty typical from my wisdom teeth and sinus surgery as well. As soon as I was in my room, I lifted up my gown and saw my ileostomy for the first time. I had on a clear 1 piece bag and it already had about 1/2 cup of dark green bile sitting at the bottom of the bag. I smiled so big looking down because Dr. B placed it exactly on the spot I requested. But the best news was the relief I felt. Deep down I felt good, I knew the surgery had successfully worked. Thank you God! There wasn’t any pain either, even after being cut into. Compared to the pain I had lived with, this was minuscule.

The nurse was asking if I was ready to see my family. I said yes and about 10 minutes later my mom shows up. I guess the others went home to get something to eat because I wasn’t suppose to wake up so soon. My mom could tell something deep down in my body was healed. Her mommas heart was happy that God finally answered her life long prayer. She has seen the depths of my pain, so its only fitting she sees the miracle that had taken place, first. 

I waited for this moment for as long as I can remember. My mom and I watched my stoma through the transparent pouch as it moved and spit out a bile substance. I had no food in my system, but my body was so very ready to work and start pushing out anything that has been stagnant. My body is being given the chance to work. Surgery is pretty awesome in my case. I thank God every day for Dr. B and that he had the skill and wisdom to do this surgery and give me my life back. 

My younger sister flew in from Illinois to stay with me during my recovery in the hospital. She has an innate joy in all circumstances and so I wanted her company during this adjustment period. Honestly I wasn’t in as much pain as I thought, but my legs, arms and face felt considerably numb (like you sat on your leg too long). This was due to the general anesthesia and the position they laid me on in the operating room. I was finally able to drink clear liquids and water. My sister propped up a cot to sleep on and pulled out her laptop to play greys anatomy. She was so flexible and the nurses just worked around us to do vitals and draw blood, etc.

11:40 pm. I was awake and anxious to get my body moving. My legs hurt from being numb, so I pulled my body out of bed and slowly made it to the door. I realized I should have called the nurse, but honestly I felt ok moving. I was nervous to see what it feels like to move with my ileostomy. I made slow steps down the quiet hallway at midnight. I was in awe as my stomach was growling and gas bubbles were quickly moving through and out the stoma. It was noisy, but felt amazing. My intestine were awake and alive feeling. I will always remember this relief and it felt like a rush of fresh air was moving through my body, just like I used to feel running around as a young kid. Before, my colon was stopping me up so much, I would honesty never pas gas and walking was miserable because the gas would just build up in my belly until it was too uncomfortable to move due to my stomach swelling. Turns out my small intestine were active, but my colon was just the big stopper. 

I stayed in the hospital from Monday May 13 to Thursday May 16. 3 nights in the hospital was all I needed! 

Tuesday May 14. I was awoken several times at 3 am for blood draws, then 5 am vitals and then at 6 am to give me my second dose of IV tylenol (this was my request instead of narcotics because of their potential to slow down the bowel).

8:00 am. Dr. B comes in the room saying “wake up!” Ha. I love how easy going and kind my surgeon is. He sat down at my bedside as I slowly open my eyes and he asks to take a look at the stoma. He pulls out his little flashlight to shine through the ostomy bag. “Things look good and the stoma is a nice size!” He explained that the rubber ring is a bridge used to keep the stoma above the surface to help it heal properly above the skin level. 

Since the output was continuous, he allowed me to progress from “clear liquids” to the “full liquid” diet. Not everyone gets so lucky to have output from their stoma right away, so Dr. B and I were pretty happy my small intestine were moving so rapidly! 

10:00 am. I drank a fizzy potassium drink because my levels were slightly low (very common after bowel surgery). My mom and dad then brought green juices and a fresh smoothie from a juice bar down the street. That was such a treat and exactly what I wanted! Right away, my stoma became more active and over the next 6 hours, the ostomy bag was filling up and I learned to empty it by myself. I also had alot of gas from surgery as they pump gas inside to get a better view of manipulating and cutting the intestine. I even has a referring gas pain up into my shoulder! To remedy the gas, I walked about 6 times up and down the hallways that day. It was a full day and I didn’t need anymore tylenol because the pain was manageable. 

May 15, Wednesday. In the morning, Dr. B stopped by to see how I was. I truly felt cared for by my surgeon. He always checks on me and asks good questions! Because I was doing so well and small intestine and stoma were moving and pushing fluids through, it was time to try food off the low residue diet. I choose 2 scrambled eggs and a banana. I managed to eat about 3/4 and felt fine after. I got up to walk several times again to help the food move through and it was awesome to see my body functioning and rewarding to empty the ostomy bag, knowing my body is working.

Around late afternoon, I met the ostomy nurse, Julie, for the first bag change. She brought all the Hollister ostomy supplies and walked me through each step to change my own ostomy bag. She carefully cleaned around the stoma and I asked to help with everything, because I would learn best doing it, instead of watching it being done. It was a bit of a shock to see a big red piece of flesh sticking out of my stomach. But I knew why I had it and I was accepting of this change. I think I was more fascinated than anything and couldn’t believe my intestine was sticking outside my body! 

By wednesday evening, I was getting the hang of the hospital life. I checked off all I needed to, to be discharged. I walked, emptied the ostomy bag, changed the ostomy bag, ate solid food, and my pain was under control. I was thankful I didn’t have an ileus and that my intestine “woke up” quickly.

Thursday May 16. Dr. B stopped by at around 7:45 am and asks how the eating and bag change went yesterday? I told him, it all went ok and I am still incredibly happy we decided to do this loop ileostomy surgery. I know it is going to change my life. I think he liked to hear that I am hopeful. He asked me to eat another meal today (or 2 if I can manage) and then I could go home this evening! I was pretty excited, but also nervous to get out in the real world with my intestine being this way. Around 4:00 pm the nurse came in with my discharged papers and explained the recovery process. I would be weak for the next few weeks and probably need some assistance. My family was glad to help! Dr. B stopped in to say “goodbye” and told me to come see him in 2 weeks, in the clinic, to get the rubber bridge taken out and make sure everything is going smoothly. And that was it, I was free to go home and start my life with my new digestive system. A miracle sure did occur on May 13, just like I had always prayed for.

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Comments

  1. You were reborn Caroline <3 Thank you for sharing your difficult story all these years. I was always pulling for you and now, I know you will have a life you deserve. Much love

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