SURGERY (END-LOOP ILEOSTOMY, HERNIA REPAIR, RESECTION RECTOPEXY), JP DRAIN, PICC LINE, TPN...

On October 2nd, I woke up from surgery in the absolute worst pain of my life! I was freezing, shaking uncontrollably, and felt like none of the pain meds were even making a dent in the pain that was taking over me! I woke up with a new stoma, sore bottom, and a Jackson-Pratt (JP) drain to remove the fluid in my abdomen. I was in the hospital for 12 long days, but fortunately I had very supportive family and friends by my side through everything! After not eating for more than a week, the drs had me try to sip at hot tea (to wake up the bowel), but I threw it up every single time. Let me tell you, throwing up after just having major abdominal surgery feels AWFUL!!! Eventually they put in a Peripherally Inserted Central Catheter (PICC line) and started me on total parenteral nutrition (TPN) which basically fed me through the PICC line and gave me all the nutrients I was lacking. With Halloween being one of my favorite times of the year, my family decorated my room and brought me a pumpkin to decorate while I was in the hospital. A few therapy dogs came to visit while I was there, but it was hard to enjoy their company when I was in so much pain. After 10 days of being stuck in my hospital room, my best friend came to visit me from college and took me outside! The fresh air felt amazing and motivated me to get out of there even more! A couple of days later, I discontinued using the pain pump, my JP drain was removed (another very painful process), I began eating a little and went home!!! I kept the PICC line in for the next 5 weeks and due to my extremely high liquid output (1200-1400 cc/day) I ended up putting IV fluid through the PICC line everyday. I actually made 2 review videos on my YouTube channel "Ostomy Product Review: Hollister 2-piece System"  & "Ostomy Product Review: Coloplast 2-piece System (https://www.youtube.com/channel/UCXLRnq6DSjydCHpiTM2ciMg/videos) when I still had the PICC line in! It is extremely important to keep PICC lines clean and dry, since it provides direct access to your heart, but the only inconvenience was showering really. Removing the PICC line was a really weird, but completely painless procedure and only took a few minutes to do. I was recovering from surgery pretty well for a few weeks, until a few more issues were added to my plate! I will explain more in my next post! Feel free to contact me with ANY questions or comments! Thanks :)

CONTACT INFO:
YouTube Channel: https://www.youtube.com/channel/UCXLRnq6DSjydCHpiTM2ciMg/videos
Facebook- https://www.facebook.com/meandmystoma
Email- MeandMyOstomy@yahoo.com

NEW COLORECTAL SURGEON, ER, & EMERGENCY SURGERY!

Still playing catch-up here.....

I met with my new surgeon on September 19th. Going into the appointment, I was pretty nervous and didn't really expect very much to come out of it...but boy, was I wrong! My new surgeon was very confident he could fix all my issues and gave me a few different surgical options! He said he could repair my parastomal hernia (with mesh), form a new end-loop ileostomy (basically a loop ileostomy with a smaller distal loop to avoid prolapse), and remove part of my colon and perform a rectopexy to fix the rectal prolapse that came back! But, before doing any surgery, he wanted to do a colonoscopy and have me do another defecogram. I left that appointment very unsure and hesitant to trust another surgeon that I just met with such a major surgery, but he said to go to his ER if I had another major prolapse in the meantime. The following week I had the colonoscopy and discussed my surgical options with my family. He gave me the option to do the surgery all at once, or  in  separate parts but my family felt that it would be best to just get everything over with at once.
Well, with my luck, 2 days after my colonoscopy I ended up in the ER with my stoma horribly prolapsed and swollen...AGAIN! I was admitted to the hospital on a Sunday and given dilaudid to ease the pain, but unfortunately my surgeon was not on-call that night and the residents had their own agenda! My mom and I both told them NOT to try pushing my stoma back in (advice from the previous surgeon) becuase it will not work and only cause more pain and agony, but they ignored us completely! After a failed attempt to ease it back in with sugar (Yes, they dumped multiple packs of sugar onto my stoma!), they decided to put another bag on and leave me laying in reverse trendelenburg (laying on back w/ feet higher than head) position til my surgeon can perform the surgery on Wednesday! By this point I was in excruciating pain, my stoma was prolapsed and swollen, I had a urinary catheter,a pain pump and was on strict bed rest! As expected, the measures they took to prevent further prolapse failed miserably! By Tuesday night my stoma swelled so badly that it started to look like it was becoming necrotic. Drs were in every 30 mins throughout that night, and then the following day, I went in for surgery! Since I hadn't officially made my decision on what surgery I wanted before I was admitted and on heavy pain meds, I left the decision up to my mom. The final decision ended up being the full 3-part surgery which included a new stoma, bovine mesh around the stoma, colon & rectal resection, and a rectopexy! In my next post I will explain what happened after surgery!

STOMA PROLAPSE!!!

Hi again! I apologize for the delay in posts! My goal was to keep up with this blog, but I got a little sidetracked. Anyways....there has been A LOT going on in the past few months that I want to share, so I am going to start playing catch-up right now!

On August 8th, 2013 my day started out like any other "normal" day since surgery. I picked up a new hernia belt in the morning, had a smoothie on my way home and by night-time I noticed that my stoma looked like it was sticking out more than usual. Knowing what a prolapse looks like, from experiencing rectal prolapse a few months back, I broke down into tears fearing this was just the beginning of a very long road, yet again! To make matters worse, my 20th birthday was the next day and I was SO excited to start a new chapter of my life as a HEALTHY college student. Unfortunately the prolapse continued to rapidly worsen and I spent the whole night Aug. 8th and the whole day of Aug. 9th (my birthday) on bed rest, in excruciating pain! Any time I even switched positions or stood up to use the bathroom, my stoma would continue to prolapse! I was given Valium as an attempt to ease my stoma back in and calm me down, but unfortunately it didn't do much. The prolapse was getting so bad (8 inches), swollen, and painful that I ended up in the hospital later that night! After 4-5 failed attempts to push my stoma back inside in the ER, I was finally taken to the OR where the surgeon was able to get my stoma back in without causing me pain. I spent the next couple of days in the hospital and then returned home (after visiting with the therapy dog at the hospital- pic below). I was given instructions to follow-up with my colorectal surgeon to discuss further surgical options to fix the prolapse. Although the ER surgeon was able to get it back in, she said there is a very good change it will continue to prolapse. Unfortunatley, the colorectal surgeon who formed my ileostomy (@Mayo) did not know what else to do for me, so she referred me to a local colorectal surgeon. At the time, I was extremely upset and disappointed that she just left me with such an issue and had no solution, but the switch to a new surgeon ended up being a REALLY good decision! I will discuss that experience in my next post...

POST OP COMPLICATIONS- OSTOMY WAFER ON TOO TIGHT!

Although the surgery seemed to be a quite simple, straightforward procedure, it proved to be anything but that in the upcoming weeks.... 

On July 24th, just one week after surgery, I was rushed to my local hospital by ambulance at 5 o'clock in the morning! The previous day, my homecare nurse (not a WOCN) came by to help with my appliance change. She accidentally brought the wrong size supplies and instead of going back to the office (15 mins away) to get the proper supplies, she proceeded to stretch the opening of a smaller wafer, forcing it to fit around my swollen stoma. Initially, I was worried that it may become too tight and cause problems, but she insisted everything should be fine and that would not cause a blockage. Later on that night I started experiencing severe abdominal pain, similar to pain I had with the blockage on day 3 postop, but significantly worse right around my stoma. I assumed I was just having "normal" postop pain, only being 1 week out, and took 1 pain pill that was prescribed to me after surgery. I had previously been taking Motrin and this was my first time taking prescription pain medicine since surgery.  Around 4am I woke up in excruciating pain! I made my way to the bathroom, to empty my bag, but quickly noticed something was wrong. I sat on the toilet feeling dizzy and nauseous and yelled to my mom for help. She rushed into the bathroom where I was sweating profusely and held on to me, trying figure out what was wrong when I fainted and proceeded to have a seizure. Once I became conscious again, my mom told me what had happened and that she had called 911 and an ambulance was on it's way. I arrived in the Emergency Room around 5:30am and spent hours there with doctors trying to figure out the cause of the pain and seizure. After hours without an answer, I was then admitted and spent the next 24-hrs on morphine in the hospital. The small wafer ended up being the cause of the extreme pain and the seizure was believed to be a reaction to the pain medication and/or dehydration. Although there are no nerve endings in the stoma itself, it was proven that the wafer squeezed too tightly around the base of my stoma (creating a mushroom appearance), closing off my stoma and preventing it from functioning. Following that incident I learned how to change the appliance on my own and trust my gut when I feel something is wrong! 

SURGERY DAY (Loop Ileostomy)

On July 16th, I had surgery at Mayo Clinic (Rochester Methodist Hospital) to create a loop ileostomy! The procedure was a short 45 mins, simply pulling a piece of my small intestine through my abdomen and creating two openings. I stayed in the hospital for 2 days, and then spent an extra day in the hotel before flying home. Having to wear a bag that collects poop, for the next who know's how many months/years, was obviously not an easy decision to make, but given my deteriorating condition, I was left with no other choice. Fortunately, I was lucky enough to meet another girl, around the same age, who went through many GI struggles and lived happily with an ileostomy for a year and a half. I first came across her through YouTube, where I discovered a channel she started , documenting her life with Crohn's, Ulcerative Colitis, and an ileostomy. Her positivity amazed me and we quickly became good friends. She helped me through the many struggles before surgery and continued to support me after surgery.  Seeing my stoma for the first time was a very weird experience. I definitely wasn't angry, more like nervous and excited for the life this new stoma can give me. My family and I were apprehensive, but looking forward to living life without so much pain and discomfort. Although I had seen videos of other people's stomas in the past, it was nothing like looking down and seeing a part of MY intestine hanging out of MY body. Although the surgery seemed to be a simple, straightforward procedure, it proved to be anything but that in the upcoming weeks. Immediately after surgery, my surgeon noticed I had a peristomal hernia and instructed me to wear a 4-inch NuHope belt to prevent the hernia from getting larger. A stoma nurse met with me and taught me how to manage my ostomy both days I was in the hospital. She also set up a homecare nurse to come  and help me with appliance changes in the beginning as well. Surprisingly, I felt pretty good after surgery and was discharged from the hospital on a soft diet and returned to my hotel room. Later that night I experienced extreme abdominal pain and my stoma stopped excreting any output. After speaking with the surgeon on-call and following her instructions, the blockage/obstruction was resolved 8 hrs later.

Mayo Clinic's Biofeedback Program Update

Hi everyone! I apologize for being MIA for the last 6 months! Honestly, I wrote a very long post on May 19th, after I completed the biofeedback program at Mayo Clinic, but somehow the message did not save and everything was lost. I have considered posting about the 2nd week of the program for a long time, but I just can't bring myself to do it right now. In a nutshell, the program was a complete failure for me and I would not  necessarily recommend it to others. Unless changes were made in the last 6 months, the program has many flaws and there is extremely poor communication between the nurses and doctors. I left feeling SIGNIFICANTLY worse than when I started the program. A repeat Anorectal Manometry (ARM) test was performed 2 weeks after completing the program and it proved that my level of dysfunction had significantly worsened. Unfortunately, the nurse I was working with allowed my condition to worsen, from the beginning, without contacting my doctor once! I can go on for days about the flaws in their system, but the two main issues were poor communication and structure. By structure I mean unwillingness to alter the program protocol to fit individual patient needs. Please feel free to message me if you would like to know more about my experience with Mayo Clinic's biofeedback program.

Following the unsuccessful biofeedback program, my condition continued to worsen rather rapidly. I had already been enema dependent, but the enemas stopped working and left me miserable with no other option but surgery. In June 2013 I underwent a slew of testing to figure out some kind of solution. Testing involved multiple Anorectal Manometry (ARM) tests, an MRI Dynamic Proctography test, a Gastric Colonic Transit study, a Colon Manometry study (6+ hrs) plus additional testing for a research study and cardiac imaging for an ongoing pericardial effusion. The Colon Manometry study was by far the most miserable, painful, and invasive procedure, but my colorectal surgeon said I needed the test to determine the next step. The test was performed June 20th and revealed that I had very little colon function. Obviously this was a very scary result, but none of my doctors described exactly what the results meant. Surgery became my only option, it was just a matter of which surgery to choose from. The options were colectomy (complete colon removal), with a permanent end ileostomy or a temporary loop ileostomy. In the end, we collaboratively decided a loop ileostomy would be my best option, with the hope that someday, somehow my colon and pelvic floor would start working "normal" again.

Mayo Clinic Pelvic Floor Biofeedback Program- Day 5

Day 5 (3 appointments)

#1 - #3 (Biofeedback)

Today is my fifth day of the program, which means I’m halfway there! I can’t wait to finally go home, but I’m still really disappointed that I haven’t made very much progress this past week. My first session this morning started off pretty rough, which I’m assuming is because of how awful I felt the night before, but once I got past the initial discomfort, I was actually able to move back down to the “1” scale and stay there for a while before moving back up. Unfortunately, that was very short-lived and during the second and third sessions I fluctuated between the “3” and “5” scales. My nurse thinks that my muscles get tired of doing the right thing pretty early on, which is why I seem to have better luck in the morning and shoot up to higher numbers in the afternoon.  I’m hoping this will improve over time. Additionally, whenever I eat lately, my stomach bloats to an unbelievable level. After doing a warm water enema Wednesday night, I was finally able to expand my stomach when I breathe, making it easier to lower my levels on the biofeedback machine on Thursday. But after eating a small lunch yesterday, my stomach became very distended and bloated all over again. I wasn't able to eat anything for the rest of the day Thursday and most of the day today, until I forced myself to eat again around 5pm. I don’t understand why eating such a small amount of food causes so much pain, discomfort, bloating, and nausea, but I’m hoping my doctor will have some helpful solutions at my next appointment with him on Thursday.

Since Mayo is closed on Saturday and Sunday, I was given the biofeedback machine to take home for the weekend and use before I go back on Monday. My instructions were to use the machine 2-3 times a day for about 30 minutes each, using the techniques I have learned over the past few days. Additionally, I have to document my starting (after 1 min) level and lowest numbers I am able to reach in each session. This is like a trial phase with the machine, to see if I can make it work well on my own and without the assistance of a nurse. So, once I try it out on my own a few times, I will give another update as to how things are going.

If the trend continues and I have no bm on my own between now and Sunday, I will be doing another enema Sunday afternoon before starting with the balloon on Monday. The whole next week I will go down to only 2 appointments per day, but instead of using the biofeedback machine, I will be working strictly with the balloon. I’m hoping and praying for better luck next week, but I was warned it will probably prove to be more difficult for me, since I have not made very much progress with the biofeedback machine. I guess we’ll just see what happens!