No Colon,Yet I Have Nothing "Butt" Faith
Donation protected
Boozhoo, aanii!
I send my greetings in the Ojibwe language as I am ¼ Native American. My medical story begins at a young age. I’d like to share this with other young adults to let them know that they are not alone and what I have learned throughout my personal journey is that you really have to be your own advocate when it comes to health because only you know your body best.
Throughout teenage years I have always dealt with “undiagnosed” digestive, urinary, and pelvic pain issues. I was put on birth control at a young age to help. As an active female in high school volleyball, basketball, and track I had to find ways to manage my symptoms that didn’t interfere with my rigorous activities. This often involved hiding my symptoms from other friends or making excuses when symptoms flared. I struggled throughout high school and my undergraduate years in silence because I was told by practitioners that it was normal.
Prior to age 22 I faced a few bumps as I like to call them. I had an appendectomy at age 12, a tonsillectomy at age 22, and a leep procedure performed for abnormal cells discovered in my cervix February 2013. As if going through these surgeries and procedures wasn’t already tough, I began having severe GI issues in March 2013 following my return from a spring break trip in Panama City Beach Florida. A few days after arriving home to Wisconsin I came down with a terrible viral-like infection. Symptoms included fever, chills, night sweats, severe stomach and abdominal aches, heart palpitations, and nerve pain for about a week straight. The days to follow I had no appetite. When I tried eating anything, my belly blew up like a balloon and my pelvic area felt like it was on fire. I repeatedly called the hospital on-call nurses who informed me to take some OTC medicine and schedule an appointment with a GI physician. Initially I lost about 25 lbs from being severely ill and not being able to eat or go to the bathroom normal. Of course initial reactions of friends and family were questioning if I had an eating disorder (if anyone knows me, you would know that is certainly not the case as I love cooking homemade meals as a side hobby and would do it frequently for friends and family). Despite the awful symptoms, I somehow found a way to push through and graduate from UW-Stout with my undergraduate degree a Bachelor of Science in Applied Science.
Following the infection March 2013, the past year and months of my life had been plagued with digestive/intestinal issues, chronic pelvic pain, nausea, stomach pains, cramping, chest pains, stress, weight loss, menstrual pains, bladder issues, ER visits, and even a seizure during the summer of 2013. My condition had literally ruined my social life and events, holidays, and work. To top it all off I was accepted into a pharmacy program for graduate school which had been a goal of mine for years and I was now unsure if I’d be able to go to school. Summer 2013 I began seeing different physicians at my hometown hospital in Green Bay, WI. I went through just about every invasive medical test a person can go through at such a young age. I was poked and prodded from above and below and any place they could make me drink barium contrast solution or stick a tube or needle in me. From these initial experiences, I was terribly afraid of physicians and never wanted to be labeled a non-coherent patient so I followed all their instructions. This changed however when I started learning how to advocate for myself and decided not to be the victim anymore. I was tired of waiting around for test results and trial treatment options so I decided it was time to put my fate into my own hands and fight for my quality of life.
I did a lot of research in my downtime and tried just about every cleanse, diet, and supplement that I thought might help my condition. At this stage I had still been suffering from malnutrition and literally looked like a skeleton weighing around 100 lbs as a 5’ 8” female. My friends would joke and tell me to eat a cheeseburger or some ice cream. It was debilitating, but I never let it get to me mentally because I knew they just didn’t understand that I had an illness. In fact, at that point it was an illness that was still a mystery to me even.
I realized I was going to have to fill the shoes of being my own patient advocate and after about 7 months of struggling through waiting for tests and results with Green Bay physicians, I ended up getting a referral from a family friend who knew some of the top physicians at Cleveland Clinic in Ohio. I had all my medical files sent to them and they emailed me back stating that they would be able to help me right away. Ultimately, I had a Sitz Marker Transit study that revealed my colon muscles and nerves were not functioning properly since after 7 days I did not pass any of the radiographic markers from my body. It was like my colon was dead; and in truth it was. I was finally diagnosed September 2013.
November 2013, I met with my first colorectal surgeon, completed some more tests, and scheduled my first major abdominal laparoscopic surgery. Upon completion of my first semester of Pharmacy school, I traveled back to Cleveland Clinic to have a total abdominal colectomy (removal of my entire large intestine), ileorectal anastamosis, and rectopexy December 20, 2013. This surgery was no joke! The first day I woke up from my colectomy, my entire right thigh was bruised and purple and my lady parts were so severely swollen I couldn’t get relief from even some of the strongest pain meds they gave me through IV. I was forced to walk laps around the colorectal floor for the whole 8 days I was there. I hardly slept those 8 days because the nurses kept pestering me with blood pressure readings, temperature checks, blood draws, heparin shots, etc. I did however meet some individuals I now call my friends since we had to walk around the floor in those ugly surgery gowns and our IV poles together several times a day. After the surgery I decided to take a medical leave of absence from the second semester of my first year of pharmacy school because I could barely get dressed and walk around my house for practically the entire month of January so there was no way I was going to be able to handle a whole other semester of graduate classes.
After going through all this, months later I still had continued motility issues with just my small intestine and on-going pelvic/menstrual pains. I went back to my physicians at Cleveland Clinic and sought the opinion of a renowned intestinal rehabilitation/transplant surgeon. Per our visit at the beginning of August 2014, I was diagnosed with Generalized Intestinal Dysmotility with the remaining small intestines I have. A month later, I also found out my gallbladder became dysfunctional via an abdominal ultrasound and repeated upper chest pains. I guess the theme for my body is, “if you don’t need it, it’s coming out.” I had my 5th surgery September 9, 2014, a laparoscopic cholecystectomy.
After the fall semester I returned to pharmacy school January 2015 to finish off my second semester of the first year. Having had to be my own patient advocate throughout this whole journey, I decided to research and study more renowned gynecologists for my continued pelvic pain while I was in the middle of coursework. After all, if I eventually ever want to have kids I figured I needed to get this straightened out.
Ironically and much to my surprise I came upon a females blog who’s story sounded similar to mine in the fact that we had a lot of the same surgeries and diagnostic procedures done with similar issues. She ended up being seen by two physicians in Houston, Texas who diagnosed and found out she had Endometriosis and had been suffering for 13 years with this illness. I decided to email them immediately and ask if they would take my case and thankfully they did. After the school semester ended, I flew out to Houston and saw the physicians both on the same day where they spent an entire day with me. To my surprise I had a transvaginal ultrasound where one of the physicians found multiple cysts on my right ovary and one on my left. Not only this, but he suspects I have Endometriosis which is where my story is currently. I will now be traveling back to Houston to have surgery with the physician and hopefully have some success with a solution for my pelvic/menstrual pain.
This has truly been a long and difficult journey for me physically and emotionally, but I wanted to share my whole story with friends, family, and other individuals who may not have fully understood my true struggles (as I have often put on a good face in public and have been unable to really explain what was happening to my body physically due to the rare disorder with my colon that I was finally diagnosed with) or for those who might be going through the same experience or other medical setbacks themselves. As I sit here and type this it has even crossed my mind how many times people have said to me “Well you look great Kym!” I’ve learned to hide a lot of my pain which is chronic and daily for me now. At this point, it is more about finding treatment options for me to help alleviate these symptoms so I can go on with my life. Although it is never going to be perfect, I think everyone deserves a quality of life that’s manageable for him or her with a debilitating illness or disease.
Fall 2013 during a diversity event in Pharmacy school I learned that my last name Ludwig is an Old High German name found mainly in England and Germany meaning “famous warrior.” Being part Native American, I also find this to be very fitting! Since as long as I can remember I have had to fight for and earn everything that I have achieved in my life (grades, scholarships, leadership positions, acceptance into my pharmacy program, my first car, jobs to help pay for school, physicians to take my medical condition seriously, etc.) since I come from a family of six and my parents cannot afford much. Suddenly, everything I had earned and worked for my entire life was taken away from me in a heartbeat and put on hold when I became ill. This includes summer jobs, full-ride Native American and diversity scholarships, planned events, holiday outings, the hopes of completing my PharmD, etc.
I’m not used to asking for help because I tend to think I can do it all sometimes. As my dear aunt once told me, “Kymberly, you need to swallow your pride and open up so others can help you. I think young females your age would want to hear your story! What if something like this ever happened to them? Would you want them to have to jump through all the obstacles and loopholes you have had to endure for almost 2 years just to get some medical attention?” As you can imagine doctoring for several months, going through testing, ER visits, and major surgeries, the medical bills have added up. Specifically traveling to and from the Cleveland Clinic in Ohio alone and now Houston, Texas has racked up expensive out-of-pocket costs, hotel costs, gas expenses, toll fees, out-of-network insurance fees, emotional tolls, etc. I am by no means asking for a pity party; I am just here sharing my story and if any one would like to donate to help my family & I out with medical expenses it would be greatly appreciated beyond words! Even just some kind thoughts and prayers are always welcome!
Please visit my donation page at the following address: http://www.gofundme.com/8la0qg
(Please note that there is no charity tax donation account set up for this. Anything donated is considered a monetary gift from family and friends. Thank you!)
As a final note, I’d like to encourage those still searching for answers to never give up! The biggest life lesson this has all taught me so far is that you have to be your OWN PATIENT ADVOCATE. It has truly been a blessing in disguise going through all this at a young age. I have developed so many professional skills and learned so many advocacy lessons that I will carry with me all my life. Learning how to present yourself in the medical field is key. I’ve also learned what makes a good physician in my eyes. I feel that we each know our body best and when there is something just not right, you have to trust your instincts and gut (literally). If one doctor doesn’t listen to you, please have the courage and strength to pursue others until someone DOES listen to you and take you seriously. If I had given up at the first doctor who told me it was basically all in my head, that I was depressed, or that I was too young to have all these complications, I cannot imagine where my health would be today. I refused to be put on the backburner and ultimately knew that there was something wrong. I do know one thing for sure, finally sharing a little about my personal story feels refreshing and like a weight has been lifted off my shoulders.
Light and Love,
Kymberly Ludwig
P.S. The following is a list of all the medical procedures and medications I have gone through and tried throughout my health journey for reference to those potentially facing similar issues:
Diagnostic Tests:
Barium enema xray
Colonoscopy
Upper GI endoscopy
Small bowel follow through with barium and gastrografin (2 separate tests)
Capsule endoscopy
Pelvic Ultrasound
Bladder scans
Tissue, urine, and stool cultures
Blood work (numerous times)
EKG
MRI of the brain
Celiacs biopsy test
Lymes disease test
Porphyrin test
Thyroid panels
Vitamin b12, cortisol, prolactin, folic acid serum, etc. blood tests
Sitz marker transit study and xrays
Anorectal Manometry & Balloon Expulsion (numerous different times)
Barium Defecography
Basic rectal exams
Gastric emptying study
CT scans
Abdominal Xrays
MR Enterography
SmartPill study
IV sticks and medications (numerous times)
Catheters
NG tube
Abdominal Ultrasound
Meckel’s Diverticulum Scan
Medications/Supplements I have tried or been on...
For Constipation:
Amitiza
Docusate Sodium
Miralax
Senna
Teas (Senna, Ginger, etc.)
Chinese spices/herbals
Dulcolax
Natural Calm
GasX
Magnesium Citrate
Colonic Hydrotherapy
Psyllium Husk
Several juicing recipes
Massage therapy
Acupuncture
For bacterial control/overgrowth:
Probiotics
Renew Life (Candigone, Total Kidney Cleanse)
Bactrim DS
Ciprofloxacin
Flagyl
Kefir
For pain/cramping belly aches/bladder spasms:
Hyoscyamine
Tramadol
Dicyclomine
Oxycodone
Myrbetriq
For stomach/motility:
Buspirone
Erythromycin
Reglan
Surgeries:
Appendectomy (2002)
Tonsillectomy (October 2012)
Laparoscopic Total Abdominal Colectomy (December 2013)
Ilerectal Anastamosis (December 2013)
Rectopexy (December 2013)
Loop Ileostomy (December 2013)
Ileostomy Reversal (March 2014)
Laparoscopic Cholecystectomy (September 2014)
I send my greetings in the Ojibwe language as I am ¼ Native American. My medical story begins at a young age. I’d like to share this with other young adults to let them know that they are not alone and what I have learned throughout my personal journey is that you really have to be your own advocate when it comes to health because only you know your body best.
Throughout teenage years I have always dealt with “undiagnosed” digestive, urinary, and pelvic pain issues. I was put on birth control at a young age to help. As an active female in high school volleyball, basketball, and track I had to find ways to manage my symptoms that didn’t interfere with my rigorous activities. This often involved hiding my symptoms from other friends or making excuses when symptoms flared. I struggled throughout high school and my undergraduate years in silence because I was told by practitioners that it was normal.
Prior to age 22 I faced a few bumps as I like to call them. I had an appendectomy at age 12, a tonsillectomy at age 22, and a leep procedure performed for abnormal cells discovered in my cervix February 2013. As if going through these surgeries and procedures wasn’t already tough, I began having severe GI issues in March 2013 following my return from a spring break trip in Panama City Beach Florida. A few days after arriving home to Wisconsin I came down with a terrible viral-like infection. Symptoms included fever, chills, night sweats, severe stomach and abdominal aches, heart palpitations, and nerve pain for about a week straight. The days to follow I had no appetite. When I tried eating anything, my belly blew up like a balloon and my pelvic area felt like it was on fire. I repeatedly called the hospital on-call nurses who informed me to take some OTC medicine and schedule an appointment with a GI physician. Initially I lost about 25 lbs from being severely ill and not being able to eat or go to the bathroom normal. Of course initial reactions of friends and family were questioning if I had an eating disorder (if anyone knows me, you would know that is certainly not the case as I love cooking homemade meals as a side hobby and would do it frequently for friends and family). Despite the awful symptoms, I somehow found a way to push through and graduate from UW-Stout with my undergraduate degree a Bachelor of Science in Applied Science.
Following the infection March 2013, the past year and months of my life had been plagued with digestive/intestinal issues, chronic pelvic pain, nausea, stomach pains, cramping, chest pains, stress, weight loss, menstrual pains, bladder issues, ER visits, and even a seizure during the summer of 2013. My condition had literally ruined my social life and events, holidays, and work. To top it all off I was accepted into a pharmacy program for graduate school which had been a goal of mine for years and I was now unsure if I’d be able to go to school. Summer 2013 I began seeing different physicians at my hometown hospital in Green Bay, WI. I went through just about every invasive medical test a person can go through at such a young age. I was poked and prodded from above and below and any place they could make me drink barium contrast solution or stick a tube or needle in me. From these initial experiences, I was terribly afraid of physicians and never wanted to be labeled a non-coherent patient so I followed all their instructions. This changed however when I started learning how to advocate for myself and decided not to be the victim anymore. I was tired of waiting around for test results and trial treatment options so I decided it was time to put my fate into my own hands and fight for my quality of life.
I did a lot of research in my downtime and tried just about every cleanse, diet, and supplement that I thought might help my condition. At this stage I had still been suffering from malnutrition and literally looked like a skeleton weighing around 100 lbs as a 5’ 8” female. My friends would joke and tell me to eat a cheeseburger or some ice cream. It was debilitating, but I never let it get to me mentally because I knew they just didn’t understand that I had an illness. In fact, at that point it was an illness that was still a mystery to me even.
I realized I was going to have to fill the shoes of being my own patient advocate and after about 7 months of struggling through waiting for tests and results with Green Bay physicians, I ended up getting a referral from a family friend who knew some of the top physicians at Cleveland Clinic in Ohio. I had all my medical files sent to them and they emailed me back stating that they would be able to help me right away. Ultimately, I had a Sitz Marker Transit study that revealed my colon muscles and nerves were not functioning properly since after 7 days I did not pass any of the radiographic markers from my body. It was like my colon was dead; and in truth it was. I was finally diagnosed September 2013.
November 2013, I met with my first colorectal surgeon, completed some more tests, and scheduled my first major abdominal laparoscopic surgery. Upon completion of my first semester of Pharmacy school, I traveled back to Cleveland Clinic to have a total abdominal colectomy (removal of my entire large intestine), ileorectal anastamosis, and rectopexy December 20, 2013. This surgery was no joke! The first day I woke up from my colectomy, my entire right thigh was bruised and purple and my lady parts were so severely swollen I couldn’t get relief from even some of the strongest pain meds they gave me through IV. I was forced to walk laps around the colorectal floor for the whole 8 days I was there. I hardly slept those 8 days because the nurses kept pestering me with blood pressure readings, temperature checks, blood draws, heparin shots, etc. I did however meet some individuals I now call my friends since we had to walk around the floor in those ugly surgery gowns and our IV poles together several times a day. After the surgery I decided to take a medical leave of absence from the second semester of my first year of pharmacy school because I could barely get dressed and walk around my house for practically the entire month of January so there was no way I was going to be able to handle a whole other semester of graduate classes.
After going through all this, months later I still had continued motility issues with just my small intestine and on-going pelvic/menstrual pains. I went back to my physicians at Cleveland Clinic and sought the opinion of a renowned intestinal rehabilitation/transplant surgeon. Per our visit at the beginning of August 2014, I was diagnosed with Generalized Intestinal Dysmotility with the remaining small intestines I have. A month later, I also found out my gallbladder became dysfunctional via an abdominal ultrasound and repeated upper chest pains. I guess the theme for my body is, “if you don’t need it, it’s coming out.” I had my 5th surgery September 9, 2014, a laparoscopic cholecystectomy.
After the fall semester I returned to pharmacy school January 2015 to finish off my second semester of the first year. Having had to be my own patient advocate throughout this whole journey, I decided to research and study more renowned gynecologists for my continued pelvic pain while I was in the middle of coursework. After all, if I eventually ever want to have kids I figured I needed to get this straightened out.
Ironically and much to my surprise I came upon a females blog who’s story sounded similar to mine in the fact that we had a lot of the same surgeries and diagnostic procedures done with similar issues. She ended up being seen by two physicians in Houston, Texas who diagnosed and found out she had Endometriosis and had been suffering for 13 years with this illness. I decided to email them immediately and ask if they would take my case and thankfully they did. After the school semester ended, I flew out to Houston and saw the physicians both on the same day where they spent an entire day with me. To my surprise I had a transvaginal ultrasound where one of the physicians found multiple cysts on my right ovary and one on my left. Not only this, but he suspects I have Endometriosis which is where my story is currently. I will now be traveling back to Houston to have surgery with the physician and hopefully have some success with a solution for my pelvic/menstrual pain.
This has truly been a long and difficult journey for me physically and emotionally, but I wanted to share my whole story with friends, family, and other individuals who may not have fully understood my true struggles (as I have often put on a good face in public and have been unable to really explain what was happening to my body physically due to the rare disorder with my colon that I was finally diagnosed with) or for those who might be going through the same experience or other medical setbacks themselves. As I sit here and type this it has even crossed my mind how many times people have said to me “Well you look great Kym!” I’ve learned to hide a lot of my pain which is chronic and daily for me now. At this point, it is more about finding treatment options for me to help alleviate these symptoms so I can go on with my life. Although it is never going to be perfect, I think everyone deserves a quality of life that’s manageable for him or her with a debilitating illness or disease.
Fall 2013 during a diversity event in Pharmacy school I learned that my last name Ludwig is an Old High German name found mainly in England and Germany meaning “famous warrior.” Being part Native American, I also find this to be very fitting! Since as long as I can remember I have had to fight for and earn everything that I have achieved in my life (grades, scholarships, leadership positions, acceptance into my pharmacy program, my first car, jobs to help pay for school, physicians to take my medical condition seriously, etc.) since I come from a family of six and my parents cannot afford much. Suddenly, everything I had earned and worked for my entire life was taken away from me in a heartbeat and put on hold when I became ill. This includes summer jobs, full-ride Native American and diversity scholarships, planned events, holiday outings, the hopes of completing my PharmD, etc.
I’m not used to asking for help because I tend to think I can do it all sometimes. As my dear aunt once told me, “Kymberly, you need to swallow your pride and open up so others can help you. I think young females your age would want to hear your story! What if something like this ever happened to them? Would you want them to have to jump through all the obstacles and loopholes you have had to endure for almost 2 years just to get some medical attention?” As you can imagine doctoring for several months, going through testing, ER visits, and major surgeries, the medical bills have added up. Specifically traveling to and from the Cleveland Clinic in Ohio alone and now Houston, Texas has racked up expensive out-of-pocket costs, hotel costs, gas expenses, toll fees, out-of-network insurance fees, emotional tolls, etc. I am by no means asking for a pity party; I am just here sharing my story and if any one would like to donate to help my family & I out with medical expenses it would be greatly appreciated beyond words! Even just some kind thoughts and prayers are always welcome!
Please visit my donation page at the following address: http://www.gofundme.com/8la0qg
(Please note that there is no charity tax donation account set up for this. Anything donated is considered a monetary gift from family and friends. Thank you!)
As a final note, I’d like to encourage those still searching for answers to never give up! The biggest life lesson this has all taught me so far is that you have to be your OWN PATIENT ADVOCATE. It has truly been a blessing in disguise going through all this at a young age. I have developed so many professional skills and learned so many advocacy lessons that I will carry with me all my life. Learning how to present yourself in the medical field is key. I’ve also learned what makes a good physician in my eyes. I feel that we each know our body best and when there is something just not right, you have to trust your instincts and gut (literally). If one doctor doesn’t listen to you, please have the courage and strength to pursue others until someone DOES listen to you and take you seriously. If I had given up at the first doctor who told me it was basically all in my head, that I was depressed, or that I was too young to have all these complications, I cannot imagine where my health would be today. I refused to be put on the backburner and ultimately knew that there was something wrong. I do know one thing for sure, finally sharing a little about my personal story feels refreshing and like a weight has been lifted off my shoulders.
Light and Love,
Kymberly Ludwig
P.S. The following is a list of all the medical procedures and medications I have gone through and tried throughout my health journey for reference to those potentially facing similar issues:
Diagnostic Tests:
Barium enema xray
Colonoscopy
Upper GI endoscopy
Small bowel follow through with barium and gastrografin (2 separate tests)
Capsule endoscopy
Pelvic Ultrasound
Bladder scans
Tissue, urine, and stool cultures
Blood work (numerous times)
EKG
MRI of the brain
Celiacs biopsy test
Lymes disease test
Porphyrin test
Thyroid panels
Vitamin b12, cortisol, prolactin, folic acid serum, etc. blood tests
Sitz marker transit study and xrays
Anorectal Manometry & Balloon Expulsion (numerous different times)
Barium Defecography
Basic rectal exams
Gastric emptying study
CT scans
Abdominal Xrays
MR Enterography
SmartPill study
IV sticks and medications (numerous times)
Catheters
NG tube
Abdominal Ultrasound
Meckel’s Diverticulum Scan
Medications/Supplements I have tried or been on...
For Constipation:
Amitiza
Docusate Sodium
Miralax
Senna
Teas (Senna, Ginger, etc.)
Chinese spices/herbals
Dulcolax
Natural Calm
GasX
Magnesium Citrate
Colonic Hydrotherapy
Psyllium Husk
Several juicing recipes
Massage therapy
Acupuncture
For bacterial control/overgrowth:
Probiotics
Renew Life (Candigone, Total Kidney Cleanse)
Bactrim DS
Ciprofloxacin
Flagyl
Kefir
For pain/cramping belly aches/bladder spasms:
Hyoscyamine
Tramadol
Dicyclomine
Oxycodone
Myrbetriq
For stomach/motility:
Buspirone
Erythromycin
Reglan
Surgeries:
Appendectomy (2002)
Tonsillectomy (October 2012)
Laparoscopic Total Abdominal Colectomy (December 2013)
Ilerectal Anastamosis (December 2013)
Rectopexy (December 2013)
Loop Ileostomy (December 2013)
Ileostomy Reversal (March 2014)
Laparoscopic Cholecystectomy (September 2014)
Organizer
Kym Ludwig
Organizer
Breed, WI
