Struggling With My Gastric Sleeve: Infections, Leaks, and Pain

My name is Courtney; I was 31 years old, mother of 4 when I decided I could no longer live a life at 367 pounds and 5'5". I was happy in my everyday life, but I missed doing things with my kids. I was sick of being the mom that sat in the van at the park because it was too much work to even walk to the bench at the playground. I started my mission by attending an open seminar at the local Bariatric Weight loss center. I wanted to hear my options and learn all about them. After the class I decided on the Gastric Sleeve as the Rou-N-Y sounded scary and I really didn't want the malabsorptive issues and hair loss. I spent ten months prepping for surgery; I had to stop smoking, meet with a dietician monthly, and go to the centers gym for workouts with their specialist. At about month 6 I had to do my Psych Eval which was a bit nerve wracking. I wasn’t sure what it would reveal. I didn’t want anything to stop my surgery from happening. It was all very exciting and I just couldn't wait to have the surgery.

During those ten months of prep I had lost 43 pounds by changing my diet as I needed too, and exercising I knew it wasn’t a “fix” or a do it for me thing. I was well aware of the work I had to do, the lifelong promise I had to make to myself to maintain my long term goal. Everyone in my family asked me “are you sure you want to do this”, “why can’t you just keep doing what you have since you already lost 43 pounds”, “why are you so different that you won’t be a statistic and gain all your weight back”. I constantly had to defend my decision. Part of me understood because my father had the Gastric Bypass and died following his due to a blood clot that wasn’t caught in time. There was fear, and nobody understood how important it was to me. I was certain I would never allow myself to fall victim to myself again. I would be strong and follow all the rules, with no exception and ensure I would meet the goal weight and stay there.

At 367 my goal weight was 175, I was told by the Nurse Practitioner and the doctor I would most likely never see that number. If I wanted greater weight loss they suggested I have the Rou-N-Y instead of the Sleeve. I was too scared and refused, I was sticking with the sleeve and I would just have to accept whatever it was that I could lose. March 26, 2013 11:15 AM I am ready to go. I had survived the two week liver reduction diet, which to be frank I thought I would die for sure. I felt light headed, and almost flu like. My body was really feeling what I was missing. I cheated once and ate 2 saltine crackers, and then I felt so guilty and mad at myself for doing that. If I couldn’t get through two weeks how would last a life time of change and control to ensure I made the most of this decision. I remained strong after that point. Now laying in the hospital I am asked one more time by my surgeon if I was sure this is what I wanted to do and if I wanted to back out there would be no hard feelings. I thought for a good minute or two, knowing there was no going back once I was under anesthesia. I was scared, but I knew deep down really what I wanted and I knew I could do it. I said yes.

March 26 1:23PM, I start waking up in recovery finally. I was so tired I could hardly keep my eyes open and then I realized how much pain I was in. I remember so vividly the tears beginning and feelings my dry throat as I cried and I couldn’t believe the pain. Quickly I was given I.V pain medication and ice bags for my abdomen. Around 2 or so I was taken up to my room for my in-patient stay for 48 hours. It didn’t take long for the pain meds to wear off and I was requesting more ice bags to help with the pain. I started to feel like I was in the vicious cycle of pain meds, dozing off, waking up to pain, pain meds, more ice, dozing off…repeat.

After 6 hours of uncontrolled pain and misery they decided to take me for a CT Scan to see what could possibly be wrong. The scan revealed that my surgeon had accidentally snipped my Splenic Artery and my Spleen was dying. The pain I was having was from that, on top of my surgery pain. Now from my understanding he was aware he did this but “normally” people don’t ever even realize it and there is no pain associated usually. I had to be non-typical though that was my luck I guess. I was heavily medicated to help with the pain and ended up staying for 5 days instead of 2 for monitoring. Finally ready to go home and feeling okay but not great. Two days later I began to have abdominal pain that I could not identify. It was a weird pain, like bloating, and stabbing. I went to the emergency room where they did a CT with and without contrast. My results didn’t take long to come back, I had a staple line leak and the spleen was continuing to die. I was admitted right away. All I could do was sit and cry. I called my mom, my fiancé and everyone was with me as soon as they could up in my room. My surgeon came to me to discuss everything that needed to happen, what it look like, how it would feel and such. I was told I would be meeting with the hospitals Infectious Disease Doctor to go over vaccinations as my spleen would need to be removed. At the rate it was dying they had to get it out. This would mean weakened immunity for the rest of my life, not to mention I still have a leak.

I had every vaccine ever made to man kind, I headed into now my second surgery and the plan was to remove the spleen and place a J-tube for feeding so the leak could heal. Out of surgery and the pain isn’t quite as bad but I have now 5 more little scars on my tummy where the previous ones aren’t quite healed just yet from surgery number 1. I go back up to my room to wait for the surgeon to come see me for a checkup and talk about what he did. My J-tube was OK, it didn’t bother me other than it was gross. Everything I was to eat/drink and medications that were pill and not IV would be put into the tube by syringe. Good news finally came that the entire spleen did not have to be removed, only about half. I would have a weakened immune system but not quite as terrible as if the entire spleen was removed. J-tube placement was successful and in place. Finally I feel like I can start mending now. 48 hours later I don’t feel so well, fever started and just over all not feeling good from head to toe. Blood work revealed I was septic. I had a blood infection from the leak and dying spleen that became necrotic.

Antibiotics were started immediately but they didn’t seem to do much and within the day I was in ICU. My right lung collapsed and my body was deteriorating quickly from everything all at once. After 4 days in the ICU I was able to move back to my room for monitoring. Every day they checked my leak to see if it was healing and every day the leak was there. A month now in the hospital and no change in anything for the better, it seemed every time I turned around something else was going wrong. I began to have severe chest pain, spasms in my esophagus is what they said it was. It was miserable and one of the most painful things ever in my life. They tried Nitroglycerin to stop the spasms which caused the worse instant migraine and throwing up. We tried another heart medication designed to do the same, Nifedipene and with the same results it was a fail. They decided to place an esophageal stint to help hold it open and stop the spasms.

Surgery #3 is now scheduled, in-patient going on 3 months. Every day is a waiting game. I walk the circle around the nurses’ station; I walk the floor end to end. I have family and friends visit, nap in between, tests to see if the leak if healed, J-tube feedings, meetings with the doctor every day. I go in have the stint placed and wake up in the recovery hoping for no more pain and that this would be my last surgery finally. Over the next couple weeks we just wait, wait to see if this will continue to work. After about 3 weeks with trying to drink clear fluids and the things they wanted me to try and consume we realized the stint was not an option. It has become compacted with everything they wanted me to try to eat/drink by mouth while having the leak and feeding tube. Emergency surgery #4 scheduled for that afternoon! Back in to have the stint removed. It is now almost August and I am still in the hospital and I still have a leak, a J-tube, and I am not getting any better.

My surgeon was exhausted, almost as exhausted as I was. There was no fix that could be found. At this time he resigned from my case feeling defeated and his colleague stepped in. There was a part of me that was mad, and sad, hurt, confused, and scared to death. When I met my new doctor however I was relieved right away. This woman walked in my room, shook my hand and said let’s get you fixed! It is time to step out of the box and try things we haven’t tried. My case was discussed with a specialist in Oregon and another in Chicago about options and things we can do or try and maybe even a hospital transfer. My new doctor decided we were going to put a tube into the leak and hope that the hole heals around the tube and we can then continue to use smaller tubes until it is healed. In the mean time I would be NPO (nothing by mouth, no water no food, nothing). Everything would be by J-Tube and I.V.

Surgery #5 placement of the first tube into leak in hopes of closure and I had a PICC line placed to help with nutrition and vitamins. We planned to check every couple of days the status of the leak and we would change the tube about 4 to 6 weeks. 6 months now in the hospital day in and day out. Somehow I develop a PICC line infection that quickly caused fever, heart rate to drop, and back to ICU on a vent this time I go. This infection was much worse than my first one and rapidly attacking me. This time I spent 11 days in ICU under close watch once I was off the vent. I had to do nebulizers several times a day to help my lung that had collapsed. It was terrible because my kids were not allowed to visit while I was in the ICU and with as sick as I was, an immune system that wasn’t working very well. It was too much of a risk.

Finally back to my room on day 147. At this point the staff had come like family, most of them anyway. My fiancé and kids had a regular routine of visiting time and hours. My little one was 18 months old and she would come and eat ice cream, and peanut butter with graham crackers, popsicles with me in bed and we watched TV. I hated when they left. My older kids at home were missing me; my oldest daughter who was 10 at the time was so scared she didn’t come even one time to see me. While it broke my heart I understood. I had 9 IV monitors; I had tubes everywhere, my feeding machine, and my PICC line bag. It was too much even sometimes for me to believe. I began developing severe anxiety from everything. Every time I had a pain it would cause a panic attack, anything at all was capable of causing a panic in me from everything I had endured. I had been under anesthesia 11 times during my 241 day in-patient hospital stay. I had 19 procedure total to include EGD (Endoscopic Gastro intestinal Dilatation), swallow studies, tube changes, upper GI and Lower GI, CT-Scans. 



September 29, 2013 I am released with a night time feeding machine, PICC line in place and home care that would come once a day for blood work and checking the PICC line. Man was it good to be home. I was adjusting to not being able to eat by mouth. Shoot it had been 9 months since I drank or had anything I had to physically swallow or chew. I didn’t really miss it either and I was never hungry or thirsty. Everything was met by the feedings and PICC line artificially. Now I could focus on getting back to some kind of living. Trying on clothes to see how much I had really lost, got a haircut and color, nails done and started back to work part time. The weight is dropping off now and I am walking nightly to help tone without vigorous exercise to avoid over doing it. Doing my check up’s and having labs and then finally I get the word my leak has healed!!! Now we can pull the tubes, all of them and really get to living. This new life and new me would cause my fiancé and I to break up. It was amicable but he was exhausted from caring for 6 kids for all the months I was hospitalized, and driving back and forth to the hospital, while working and I felt like he didn’t get me. He looked right past the new me, there was no new spark in the sexy new panties and bra that were smaller, or even a notice of me despite my daily changes I could see and feel. I needed more at this point.

Feeding tube, out, PICC line, out, and finally drainage tube, OUT! Down 131 pounds and no tubes and all of the sudden they say OK go ahead and eat. Pretend this is day one after surgery though, start with the level 1 full clear liquid diet, sip water every 15 mins, then go to step 2 at week 2 and so on. By the time I got to week 2 I was admitted back to the hospital for dehydration and malnutrition. From January 2014 to March 2016 I had 31 ER visits and 24 hospital stays for malnutrition and dehydration. I was under pain management to try and control the pain and discomfort I had when I did eat or drink. I was 9 months with nothing by mouth and all of the sudden they say go ahead and eat again. One I didn’t know how, two it was mighty painful, and I was scared to stretch anything out or get another leak. In this time I also ended up dating my best friend, who had been my best friend for 4 years now. I was so thankful to have such a strong person next to me while going through all this.

Eventually everyone caught on that I had developed Anorexia, anxiety and also an addiction to all the opiates I had been on since March 2013. At this point I was on Valium 10MG 6-8 times a day as needed for anxiety, Roxicodone 30 MH 8-10 tablets a day as needed for pain, OxyContin 80MG 2-4 times a day as needed for pain. This is more than a cancer patient. It also stopped me from being able to eat. While we hoped it helped so I could eat it made it worse. December 12, 2016 my husband and mother took me and admitted me into an adult psychiatric detox center. I was so mad at them for this; I was not taking anything I shouldn’t have been and I was taking only prescription meds. Needless to say I was admitted for 10 days. I don’t recall much of the first 4 days outside of being sick, shaking and angry non-stop. I woke up on day however and felt like a new person. I remember saying “Courtney is back” and a small ping of fear swept over me. How would I ever be able to eat, or do anything without the pain meds? My anxiety went off the charts. I was started on Suboxone to help with the addiction as well as control any pain I might have while eating/drinking, anti-anxiety meds and a sleeping pill.

December 22 I was released to go back home and I was so very isolated, scared, mad still, and I couldn’t deal with loud noises and being close to anyone. I didn’t want anyone to touch me. I didn’t know if I would ever get over this honestly. My doctor referred me to an Eating Disorder Specialist I began to see 3 times a week, while attending normal addiction counseling weekly and also emotional healing counseling. It was so very intense, journaling and log keeping of everything I felt, ate, did, drank, how it made me feel inside and out. I went from a size 28 and 367 pounds to size 6 and 112 pounds on my death bed, sick looking. Every bone in my body stuck out, I couldn’t sit down or it hurt everything. I was too scared to gain weight though; I couldn’t get myself to eat out of fear. It was a slow start, however it was a start. At the beginning I could eat a quarter cup of cottage cheese, all but the last bite. Leaving the last bite was my first internal trick and method. Leaving some behind made me feel like I hadn’t over done it. It was a victory and a way I could trick myself that I wouldn’t gain weight because I didn’t even eat it all. My therapist caught on to this well before my logical admittance did. Goal 2 was to try and finish one meal a day, not all but one meal a day not even one bite could be left. This would go one for 7 months of intensive therapy until finally I reached a point where I was able to have a fairly wide range of foods and able to maintain a healthy weight. July 2017 to current I have maintained 158-170 pounds.

I am scheduled June 12, 2019 for a revision however to the Rou-N-Y due to esophageal stenosis from GERD and severe acid reflux. My esophagus is covered in ulcers, almost completely closed with scar tissue and is only getting worse. There is no other option to fix my problem. So here I am again, prepping to begin the liver reduction diet and start at step one, hoping nothing from the first time happens this time.



Fingers crossed!!

 - Courtney