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! 

Pelvic Floor Dysfunction- Mayo Clinic Biofeedback Program (Days 1-4)

    Currently I am back at Mayo Clinic and just finished day 4 of the 2-week biofeedback program for pelvic floor dysfunction. I initially planned to post daily about how the program was working for me, but I became really overwhelmed over the past few days and just could not bring myself to do it. So many things happened that I did not expect, so I am hoping to help others who may be going through Mayo's program by documenting my own journey. I thought that biofeedback was going to be a relatively easy process that would show some sort of improvement early on, but I definitely misunderstood the process. I am now realizing that this biofeedback program is only the first step in a long journey that may take several months before any kind of improvement is felt. I try to give daily updates throughout the rest of this program, but this is how the first 4 days went.

Day 1 (2 appointments) 

#1 (Evaluation)

At this appointment I met with the nurse I would be working with for the next 10 days and we discussed exactly what problems I was having and how biofeedback can help. The nurse provided a lot of useful information and explained, in detail, the different steps and goals of the biofeedback program. The appointment ended up being about 1 ½-2 hours long.

#2 (Biofeedback)

A few hours later I came back for an appointment to actually start the biofeedback process. Once I got into the room, I was given a hospital gown and led to the bathroom where I was instructed to remove everything from the waist down and come out when I’m ready. When I came back out the nurse had me lay on the table (on my left side) where she then inserted the rectal sensor. It was initially very painful and uncomfortable, but she said the pain should improve as my body adapts to the sensor. Being only my first session, most of the time was spent learning what the different lights meant and exactly how to read the biofeedback device. The device used in this program is called “U-Control sEMG” which provides both visual and auditory feedback with pelvic muscle movement.  My nurse said Mayo chose this particular device because it is easy to use and not very expensive (since patients are supposed to rent/purchase one to continue use at home using the techniques learned during the program), compared to other devices.  Here is a link with device information: http://bio-medical.com/products/u-control-semg.html. Once I learned about the lights, she instructed me to squeeze and release each outlet/muscle as a way for me to become aware of my pelvic floor and coordinate the feeling of muscle movement with the lights on the device. She said that finding those muscles may take a little time, but was surprised by my lack of feeling in that area. Although I get rectal pain/spasms on a daily basis, my nurse suspects that the two previous abdominal surgeries damaged sensory nerves that are used to feel movement in the pelvic floor. She said that my lack of sensory signals will make biofeedback a more difficult process and instead of relying on sensations, I needed to learn secondary methods that I could rely on, like learning how to push my pelvic floor down through breathing techniques.

Day 2 (3 appointments)

#1 - #3 (Biofeedback)

At 8AM I came back for another session, but instead of laying down, I transitioned to sitting on the commode. The commode was placed on a platform and it had an opening at the bottom that the nurse used to insert and hold the sensor in place. Insertion was painful, but I was able to get my numbers down from 7 to around the 1.8-2.1 range for a few seconds during the session. I was instructed many times to take deep breaths, focusing on expanding my belly instead of my chest. I found this extremely difficult, since I appear to be a heavy chest breather, but “tummy breathing” pushes the pelvic floor down which is supposed to make evacuation easier. In between appointments I was instructed to work on tummy breathing, but when I came back for later appointments, I was still having a hard time.

Day 3 (3 appointments)

#1 - #3 (Biofeedback)

When I came in at 8AM on Wednesday, my nurse brought in an occupational therapist to assist in helping me learn how to breath properly. She hooked me up to a diaphragmatic breathing biofeedback machine (with a sensor band that wrapped around just below my ribs and an additional sensor on each shoulder) that showed me exactly how I was breathing on a computer screen. The band was used to measure deep tummy breathing and the shoulder sensors were used to measure the amount of tension I had in each shoulder. This tool was definitely helpful in showing me how to relax and breathe properly, but my stomach was so bloated and distended from being so backed up, that I had a really hard time expanding it any further. It was also hard to look at so many different reading and try to coordinate my rectal muscles, belly breathing, and shoulders all together since each individual part takes a lot of concentration.

At my last appointment of the day, I went through the same routine, but without the breathing biofeedback machine. I started off doing great, trying to use the breathing/relaxation techniques I had used earlier, but out of nowhere, my rectal muscles began to involuntarily squeeze and spasm. I experienced similar spasms in the past, but this time it lasted longer than a few minutes and caused intense rectal pain. Since it was causing so much pain, my nurse told me to just take out the sensor and recommended that I maybe try external sensors the next day, unless I felt any better. She also recommended doing an enema that night as a way to relieve constipation and pain as well as improve my ability to expand my belly more when I breathe, instead of my chest.

Day 4 (3 appointments)

#1 - #3 (Biofeedback)- Thursday morning I came back at 8AM for another session. I used a warm water enema the night before (about 800 cc), which induced prolapse, but helped relieve a lot of built up stool and pressure. Even though I had the option to use the external sensors, my nurse said they do not work as well and would sort of be moving backwards instead of forwards. Determined to make some kind of progress and feeling better than the day before, I decided to try the rectal sensor again. Once I got the sensor in, I sat on a normal chair, which was initially pretty uncomfortable, but I got used to it with a few adjustments. While sitting in the chair, I hovered around the 1.2-1.8mv range on the machine. The enema from the night before seemed to relieve a lot of bloating and distention which allowed me to better expand my stomach with belly breathing. This made a huge difference and with every deep breath, my pelvic floor began to relax and lower, bringing my numbers down significantly.

The second session of the day went pretty well, staying at a low tension level pretty consistently. There was definitely fluctuation, but I lowered my level so much that I was able to move from the “3 scale” to the “1 scale”.

At the third session I started off on the “3 scale”, but through deep belly breathing I was able to gain some control of my pelvic muscles by relaxing and pushing them down. About 5 minutes in, I was able to switch back to the “1 scale” and bring my level down really low until random, but extremely strong and painful spasms started. The levels immediately shot up to “N” (a high and unreadable level), forcing me to go move back to level 3, and even there, I stayed at a very high level. The spasms felt like someone was literally stabbing me up my butt and after about 5-10 minutes of trying different relaxation and breathing techniques, the spasms just would not decrease, forcing me to take out the sensor and end the session early. Taking the sensor out was significantly more difficult and painful due to the tight muscles squeezing around the sensor. Once I removed the sensor, the pain decreased, but the spasms continued for about 1 full hour until it finally began to settle down. It was an extremely disappointing end to such a good day...although I am used to getting daily rectal spasms, they have never lasted as long at such a high intensity. As aggravating as it may be, I realize this program will not “fix me” by the end of these two weeks and this will be a long, ongoing process. 

My Story

My name is Nicole and I was diagnosed with Ehlers-Danlos Syndrome in November 2012, at 19 years old.  
Since the diagnosis, my life has changed tremendously in ways I could have never imagined. 

Throughout my life I have struggled with many random health problems that seemed to have no explanation, but in November 2012, just before undergoing surgery for Endometriosis,  I discovered that I had full-thickness rectal prolapse. To actually see and feel my the end of my large intestine (rectum) outside my body was a scary moment in itself, but when I could not get it back in, I began to panic. During surgery the next day, my gynecologist brought in a general surgeon to look into the cause and severity of the issue while under anesthesia. Upon waking up, the surgeon came in to say that I appeared to have a weak, lax pelvic floor. He said it looked more like that of a much older woman who has experienced childbirth, not that of a normal 19 year old. Seeing as my 16 year old sister was already diagnosed with EDS hypermobility type, both surgeons were highly suspicious that I too had EDS. Later in November I was diagnosed with EDS as well, but I seemed to display characteristics of both hypermobility type and classic. A few days later I saw a colorectal surgeon that confirmed the diagnosis of rectal prolapse and planned to operate in the upcoming weeks. On December 13,2012 I underwent surgery to repair the prolapse. My surgeon decided to do a hand-assisted anterior resection rectopexy, saying it would produce the best outcome for both prolapse and constipation. Recovery was rough and I stayed in the hospital for 7 days following surgery. Once I returned home, my pain level slowly decreased but constipation quickly became an issue again, only weeks after undergoing a surgery that should have helped the problem. 

In January 2013, while already experiencing a great deal of abdominal pain and discomfort, I got into a car accident that totaled my car. Being only 4 weeks out of surgery, I was taken to the ER where tests revealed severe impaction, a fluid collection around my colon (near anastomosis site) and a pericardial effusion. Doctors decided not to drain either fluid collection immediately, but to wait and follow-up with my doctor later in the week. After a long follow-up cardiologist, I was admitted to the hospital to discover the cause of the pericardial effusion and decide whether or not it needed to be drained (pericardiocentesis). Doctors were not able to find a cause after 2 days in the hospital and since I was not experiencing any immediate symptoms, the effusion was not drained and I was sent home with instructions to follow-up periodically.  As for my constipation issues, I began taking many different combinations of medications and vitamins such as Amitiza, Linzess, Colace, Dulcolax, Magnesium Citrate, Magnesium, Vitamin D, Fibrecon, Metamucil, Culturelle, etc. Ultimately, the combinations of these medicines (at different times and dosages) only increased my pain and constipation. I got to the point where warm water enemas became the only way I was able to have any kind of bowel movement.

In the beginning of February 2013, I went to the ER again with severe lower right abdominal pain. Tests revealed a large ovarian cyst and I was kept overnight on Morphine to control the pain. Later the next day my pain decreased enough to be sent home with a prescription for 10/325 mg of Norco. A few days later, while in the bathroom I was devastated when I noticed my rectal prolapse had returned. At a follow-up appointment with my colorectal surgeon, he agreed that the prolapse indeed appeared to be back, but it was only mucosal (partial) at the time, not full like it was pre-surgery. He said that the recurrence rate was very low for the surgery I had and EDS may have played a larger role than he initially thought. He also said there was nothing else he could do to help relieve my pain or any explanation for the rapid decline in pelvic function after surgery. 

From February til now, my GI symptoms progressively worsened. I started pelvic floor physical therapy in late February which included two 45 minute sessions a week, but unfortunately it did not seem to improve anything. At the end of April I finally went up to Mayo Clinic in search of some answers and solutions to my problems. I had appointments with both GI and colorectal surgeon as well as an Anorectal Manometry test and MR Proctogram. Both Mayo doctors suspected Pelvic Floor Dysfunction from the beginning and the testing just confirmed their suspicion. They recommended that I come back to Mayo for their 2-week intensive biofeedback program with the hope that I would regain control of my pelvic muscles and essentially improve my symptoms. 

This past year has been a difficult journey both physically and emotionally, but I slowly learned to cope and accept my situation along the way. In the beginning, I was extremely embarrassed and reserved and did not want ANYONE to know what I was going through. I kept thinking my problems would just go away one day and I would get to live like any other normal college student, but the past few months have tested my strength many times.  Due to the daily pain, discomfort, and fatigue I experience, I have become very withdrawn from the things I once loved. I had a type A personality that kept me on-the-go 24/7 and although it took a lot of work and energy, I enjoyed working 2 jobs while going to school full time. I am slowly learning to adapt some type B traits along the way, but it is definitely a process.  

I started this blog for a few reasons but my main goal is to reach out to others who may share similar experiences. Living with any illness is hard and a strong support system, especially one that understands your struggles, is really important! My journey is far from over and as I grow more comfortable discussing GI/bowel issues, I hope to connect with others. My greatest fear right now is the possibility of losing my colon and living with an ostomy. I don't know what God has in store for me, but I know that whatever happens has a reason. I know it may feel lonely at times, but we are in this together!