Boozhoo, aanii!
Greetings, hello,
I send my welcoming in the Ojibwe language as I am ¼ Native American and am a member of the Keweenaw Bay Indian Community of Michigan. My medical story begins just as I was graduating from my undergraduate studies from the University of Wisconsin-Stout.
Throughout my teenage years I have always dealt with “undiagnosed” digestive, bowel, urinary, and pelvic pain issues. Predominantly, I recall always complaining to my mother about constipation and bloating, accompanied by pelvic nerve pain which severely worsened with my menstrual cycle. Frequently, I went to the hospital where I was told it was just normal menstrual issues and often got diagnosed with UTI infections. After speaking with my family practice care provider, I was put on birth control as a teenager. Competing as an active female in high school volleyball, basketball, and track as a three sport athlete, I had to find ways to manage my symptoms that didn’t interfere with my daily activities. This often involved hiding my issues from other friends or making excuses for not being able to hang out when symptoms flared. I struggled with these symptoms all throughout high school and my undergraduate years in silence because I was told it was normal.
Prior to the life-changing event my senior year in college, I have faced some bumps along the way with my health. I had an appendectomy at age 12, a tonsillectomy at age 22 after having repeated masses form in the back of my throat, and a LEEP procedure performed for abnormal cells discovered in my cervix February 2013 (needless to say I’ve been under the knife a few times). As if going through these surgeries and procedures wasn’t already tough on my body, I began having severe GI and worsened constipation issues in March 2013 following my return from a spring break trip in Panama City Beach Florida. I wasn’t feeling the greatest the entire trip, but I just thought it was because I obviously wasn’t taking care of my body like most college kids on spring break. A few days after arriving home in Menomonie, WI I came down with a terrible viral/bacterial/autoimmune-like infection. I recall symptoms including terrible fever, chills, night sweats, severe stomach and abdominal aches, heart palpitations, and nerve pain for about a week straight. This accompanied my menstrual cycle. At a later first meeting with a physician, I recall saying that the best way I could describe what had happened to my body was that it felt like every organ in my digestive tract was affected from top to bottom (potentially due to travel through the lymph system). The days to follow I had no appetite and when I tried eating anything, my belly blew up like a balloon (more than it usually already did) and my pelvic area felt like it was on fire. From this day forward, I began having such severe constipation that I was unable to have a bowel movement without the use of several laxatives. I kept calling the hospital on-call nurses and asking what I should do. Their response was always the same: take some magnesium citrate and schedule an appointment with your GI physician. Initially I lost about 25 lbs (I was a 5’ 8” female down to 100 lbs at my worst state) from being severely ill and not being able to eat or go to the bathroom normal. With only a month left before graduation, I missed so many classes, but somehow found a way to turn in homework and email professors with excuses so I could pass and graduate with my Bachelor of Science in Applied Science.
Following this infection, the past year and months of my life had been plagued with digestive issues, constipation/bowel issues, and chronic pelvic pain the minute I ingested anything (nausea, bloating, stomach pains, cramping, chest pains, trapped gas, stress, weight loss, pelvic and menstrual pains, bladder and bowel issues, ER visits, and even a seizure during the summer of 2013). My condition had literally ruined my social life, holidays, graduate school, work, events, and self-esteem. I began seeing different physicians at my hometown hospital in Green Bay, WI and went through just about every invasive medical test a person can go through at such a young age (see procedures below). I was poked and prodded from above and below and any place they could make me drink barium contrast solution or stick a tube in me. Despite all this, none of the tests revealed any answers for me and I was simply written off as just another young, stressed, depressed female with a case of IBS.
Being the type A person I am, I did not want to give up on figuring out what was going on with my body. I spent my summer 2013 researching and trying just about every treatment, diet, supplement, medication, etc. I thought would cure my bowel and pelvic issues while in between medical testing. Being totally honest, I spent many of my summer days crying at home confined to my parent’s house and in bed due to pain and asking God to somehow help cure me and get me through this terrible time in my life. I battled with myself daily, forcing myself to eat meals although I knew bloating, pelvic pain, and not being able to go to the bathroom for days would follow. Some days it got to the point where I was in such inflammation in my pelvic area and abdomen that all I could do was curl up in the fetal position and rely on my heating pad. I swear, my heating pad was my best friend that summer! I was terribly afraid of physicians and never wanted to be labeled a non-coherent patient. I always wanted to prove to doctors that I was attempting everything they suggested. This came to change however when I started learning how to advocate for myself and decided not to be the victim anymore. I decided it was time to put my fate into my own hands and fight for my quality of life!
Since March 2013 I had not been able to go to the bathroom without some type of stimulant, laxative, or medication for my bowels. As I mentioned, I tried just about every cleanse I thought would help and drank large amounts of water to help stay hydrated. In fact, during the month of June 2013 my parents luckily found me in my room one morning because I actually had a seizure from what I thought might have been caused by so much water retention. All I can recall from the incident was my vision blacking out, falling in my room and breaking my shoe rack, crawling to my door where my Dad picked me up in his arms, and eventually I lost control of my bladder from it being so full. I was never in so much shock in my life. At this point I was rushed to the ER in my hometown where I was hospitalized for 3 days and 2 nights. I met with an infectious disease doctor who stated that he has never seen someone with such a low blood pressure as mine during my hospital time (my nurses paged him while I was asleep because of my low blood pressure readings because they were so worried) and he personally assured me that he would “not give up until I was cured.” Needless to say after I was released from the hospital on the third day, I really found out the true meaning of being discharged. I still was not “cured” and the physician neglected to follow up with me during the following days when my parents and I repeatedly called to inform the hospital that I was not well. At one point along this journey I even spent time with a pathologist who used to work at UW-Madison who had been known to cure very terminally ill patients and animals via a specific diet as he had a cabin by my parent’s home in Northern Wisconsin. I followed this diet and recommendation to the T because I was willing to try anything at that stage, but still no avail or alleviation of the pelvic and bowel issues. At this stage I had still been suffering from malnutrition and literally looked like a skeleton weighing around 100 lbs. My friends would joke and tell me to eat a cheeseburger or some ice cream (now let me tell you, I ate a ton of ice cream that summer, but still couldn’t gain any weight because I couldn’t process food or go to the bathroom normally). 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.
Meanwhile, my condition was getting worse and worse throughout the summer. I was so underweight, malnourished, and felt isolated from my friends and life I once knew. Finally, my options were to either try a new medication for IBS or get a referral to a larger hospital for further testing. At this point 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 strongly demanded the referral to GI physicians in Madison, WI. My GI doctors in Green Bay said they had done every test and that essentially nothing was wrong, but I knew there was more specialized testing out there and decided that I didn’t care what these physicians thought. I was determined and I’d battle the wait times, patient referrals, insurance, etc.; whatever it took to figure this out! Upon meeting with my new Madison GI physician, I advocated to have a Sitz Marker Transit study performed because my own personal research and symptoms led me to believe that this test would shed some light on my bowel issues. Ultimately, this was the test that revealed that 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 with Slow Transit Constipation in September of 2013 and was told by the GI physician that there was nothing they could do for me and that some people, quote, “have to live on laxatives for the rest of their life.” Can you imagine hearing a physician say this to you at age 23? My response; I simply could not accept this as an answer with so much life ahead of me (let alone being a medical student who knows the adverse effects of chronic NSAIDS and laxative abuse on the digestive tract). I began doing further research to see if there were treatments or solutions for my medical diagnosis.
As I have come to learn, sometimes in the medical field it is all about who you know. Thankfully I had a dear, close friend whom I used to work with in Chicago to tell my story too. Per his concern, he informed his mother about my condition and having connections with hospitals as an anesthesiologist, my medical files and test results were able to be forwarded through a friend to the Cleveland Clinic in Ohio. The physician who received my records and story had connections with some of the top Colorectal and GI physicians at Cleveland Clinic. Upon looking over my case, my contact advised an appointment with one of their highly sought after colorectal surgeons at their facility who dealt with my diagnosis on a regular basis.
November 2013, I met with my future colorectal surgeon, completed some more tests, and scheduled my first major abdominal laparoscopic surgery. Via the November tests and appointment with my surgeon I not only found out that I additionally had an intussusception of the rectum, but that my “Slow Transit Constipation” condition was not curable by any type of diet (as I had literally tried them all: gluten free, lactose free, juicing, etc.). I have to say that at this point I felt a weight had been lifted off my shoulders because I cannot count the times where I was viewed by my hometown physicians as having an eating disorder or simply to add more fiber to my diet. I also fully know that many of my friends could attest to the fact that prior to this condition taking over my life, I used to bake and cook homemade meals on a daily basis. Food was never my enemy. So, upon completion of my first semester of Pharmacy school at UW-Madison, I traveled back to Cleveland Clinic to have a total abdominal colectomy (removal of my entire large intestine), ileorectal anastamosis, rectopexy, and temporary loop ileostomy performed December 20, 2013. Takedown of the loop ileostomy was March 7, 2014. Now let me tell you, these surgeries are no joke! The first day I woke up from my colectomy, my entire right thigh was bruised and purple and my female 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 don’t think I slept an inch because the nurses kept pestering me with blood pressure readings, temperature checks, blood draws, heparin shots (basically a shot I had to have 2x a day, morning and night, to prevent blood clots that felt like a bee sting every time they injected it), etc. Now I do have to say one good thing came out of all this. I met some incredibly amazing friends during my surgery. I am close friends with all of them to this day. They are inspirations for me. In fact, one of the females has had numerous abdominal surgeries and she’s in great shape now! This gives me hope that I too will get to that point someday.
Now at this point, you might think to yourself, “Wow after going through all of this, she finally has a diagnosis, was treated, and has had several months to recover from her surgeries. Miss Kymberly can finely get back to pharmacy school at Madison and live the life she worked so hard to get to.” Sadly that is not the case. After going through all this, I still had continued motility issues with just my small intestine and on-going pelvic/menstrual pains.
I have had chronic abdominal pelvic issues for the majority of my teenage years, but since the onset of the infection, I had severely noticeably, worsened menstrual issues and bowel issues despite the colectomy. After repeatedly calling my colorectal surgeon and seeing a new GI specialist in Ohio who could not help me anymore, she recommended I speak to my gynecologist about the menstrual issues and pelvic pain as it was not her area of expertise. When I spoke with my local gynecologist in Green Bay July 2014 (the same one who did the abnormal cell removal in my cervix February 2013) about my continued issues, I suggested looking into Endometriosis since all my symptoms were oddly related to my cycle. He wasn’t convinced this had anything to do with my symptoms really so once again I had to turn to my primary care physician to advocate for a second opinion.
In the meantime I went back to my physicians at Cleveland Clinic for continued bowel issues 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. If this was not enough of a shock, I also found out my gallbladder had been dysfunctional via an abdominal ultrasound and repeated upper chest pains whenever I tried to eat. 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 where a general surgeon in Green Bay performed a laparoscopic cholecystectomy. Now you would figure this surgery would be a piece of cake to recover from compared to my entire colon removal. It most certainly was not and I didn’t fully recover (or at least get back to my norm) until about a month.
Throughout August and September 2014 prokinetic (motility) medications had failed to alleviate symptoms and I had to be reevaluated for treatment options for what they referred to as a more chronic form of intestinal distress called Chronic Intestinal Pseudo Obstruction. Basically my small intestine lacks the strength of normal peristaltic contractions to move food along and it can feel like having a bowel obstruction whenever I eat. I get trapped gas and air, bloating, severe abdominal distention to the point where I can only sit in my bed with a heating pad or try to walk around with one to get blood flow to my intestines to try to move things along. I’ve even been asked by friends if I was pregnant; that’s how bad it is with the distention at times. And you can imagine, when things aren’t flowing with my small intestine, everything starts to back up from above (i.e. causing my stomach to empty slow, chest pain, organs pushing up on my diaphragm, etc.). For the most part, I live in sweatpants and comfy, non-tight fitting clothes and haven’t worn a pair of jeans in almost 2 years now. I’m in constant discomfort and although we all need food to live, I have developed a phobia of eating because I know the pain I will be in every time I eat. Currently I focus on chewing my meals really well and I eat small meals throughout the day to help control the pain/discomfort. My physicians and I are currently working on treatment options to help alleviate my symptoms as I just recently traveled back to the Cleveland Clinic October 3, 2014.
I spoke with my primary care practitioner to break all of this news to him and hear his opinion. Knowing it was a life-changing decision, he advised me to seek out all other options and possibilities before ever removing more intestines, etc. He stated that when one practitioner closes the door, seek help from the ones who are willing to take on the complicated case, this is how the rare, success stories are heard and solved. Having had to be my own patient advocate throughout this whole journey, I decided to research and study more renowned gynecologists. After all, if I eventually ever want to have kids I figured I needed to get this area of my body analyzed. I stumbled upon the Endometriosis Association page and decided to be schedule an appointment in Milwaukee, WI after much research, different references, opinions, and personal stories. I do not want to go the route of having more life-changing intestinal surgery if there is a possibility the diagnosis is not fully correct or if there is another piece to the puzzle (that tends to be the case with me; finding out more issues after having surgery).
A current and on-going symptoms list for the past 1.8 years at that time follows: painful/inconsistent bowel movements, severe abdominal constipation, gastrointestinal issues, painful/inconsistent periods before and during menstruation, fatigue, allergies, chemical sensitivities, frequent UTIs and yeast infections, intestinal dysmotility, and severe pelvic nerve 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 them 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 at UW-Madison, 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. I have spent countless hours volunteering and giving back to others during my healthy years (it has been difficult giving up the daily physical activities that fed my mind, body, and soul). 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, and even being able to build a lasting relationship with a significant other (as my pelvic issues are so severe that I never want to be near a male intimately). I have never been one to ask for help because I have always been a strong, independent woman; sometimes thinking I am superwoman and I can do it all (some might even call this being stubborn).
But I am here telling you my personal story today because I am admitting that I finally did need some help. 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, my medical bills and debt have added up. Specifically traveling to and from the Cleveland Clinic in Ohio alone has racked up expensive out-of-pocket costs due to the approximate 12 hour drive there and another 12 hours home (my family and I have made this trip 6 times because Cleveland Clinic has truly been the only hospital addressing my medical issues). Not only this, but we have incurred hotel costs, gas expenses, toll fees, out-of-network insurance fees, emotional tolls, etc. And since I am still going through issues after the surgeries, there will no doubt be more medical expenses to come. I am by no means asking for a pity party, I am simply requesting donations (large or small) to help me and my family out financially; anything at all will be deeply and greatly appreciated beyond words! Every little penny counts and even just some kind thoughts and prayers are always welcome!
Please visit my donation page at the following address: https://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. You have to find that appropriate medium where you can convey your symptoms without coming across as crazy basically. I could really go more in depth about patient advocacy here, but I will spare you the lecture. 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 and that it wasn’t just “IBS.” I do admit that at first upon meeting classmates, academic advisers, professors, and physicians, that explaining and revealing my issues of not being able to eat or go to the bathroom normally wasn’t the first thing I wanted to say when introducing myself. However, I am not ashamed or embarrassed about admitting any of this story now because I know that I did/do have a medical condition. I even recall at one point during the summer of 2013 while visiting with a friend that I was going to write a story about my health journey one day when I finally got a diagnosis so others with this condition would never have to suffer the way I have. I then proceeded to tell her that maybe I would eventually even try to get on Dr. Oz, The Ellen DeGeneres Show, Dr. Phil, or The Doctors as these are some of my favorite shows where unique stories are shared. I do know who thing for sure, finally sharing a little about my personal story feels uplifting!
Light and Love,
Kymberly Ludwig
1 Comment
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March 25, 2015 at 3:06 pmMay I simply just say what a relief to uncover an individual who actually knows what
they’re discussing online. You certainly know how to bring an issue to light and make it important.
More and more people ought to check this out and understand this
side of the story. I was surprised that you aren’t more popular
because you definitely have the gift.