I just wanna start out by saying thank you, because I have struggled with all this stuff for almost 4 years, and never felt the impulse to ask people who are dealing with the same horrid stuff i am dealing with for help all this time! So...here it goes. I am only 19, and first got sick when i was 15. I woke up one morning for school and felt nauseous, vomited a few times, and had a low-grade fever, so I stayed home from school. I stayed like this for a few days, and had also started to develop pain in the lower right section of my abdomen. the pain kept getting worse, and by the end of the weekend i was screaming and writhing in agony. they rushed me to the ER, where they were 99% sure without even doing any x-rays that it was my appendix, but did one just to be safe before surgery. It turned out that the x-ray came back completely clean. So, they kept doing more and more tests (small bowel follow through, MRI, etc...) all while pumping me full of pain meds to try and control it. after keeping me in the ER for 3 days, they decided that they could send me home with tons of pain meds, and that i was suffering from IBS, despite my regular for the previous 15 years. Scarily enough, the pain did not cease for almost 4 weeks, and I still to this day don't really remember anything from that time (the pain meds really knonked me out). But, miraculously, the pain faded away, and i went to the doctor for a follow up appt. When he was asking the usual routine questions (when was your last period, bowel movement, etc...) I had to stop and think. It turned out that I had not had a bowel movement in almost 4 weeks! So, he prescribed some easy otc laxatives (ex-lax, sennacot, miralax), and sent me on my way. Unfortunately, these meds did not work at all. This caused some concern, so they did a colonosopy after emptying me with golytely and found nothing.
I just realized that instead of writing an entire novel of my life in the past four years, i should just skip to the important info :) for the first 3 years, my only symptom severe constipation (along with the nausea and discomfort that provides). Honestly, I have tried EVERY single laxative available (trust me my medication history list for the past 3 years is over 11 pages long!), and traveled the country in seek of help from the best doctors. Last year, i started having unexplainable chronic urine leakage (has nothing to do with sneezing, laughing, standing up, etc...) and chronic nausea/vomiting (pretty much daily). Ive lost a ton of weight, and really have no appetite. I have been to Georgetown, Hopkins, Cleveland Clinic, University of Iowa, UNC, Temple, nationwide childrens hospital, and mayo clinic. I have had every test you guys mention, which all show that i do have colonic inertia and pelvic floor dysfunction. recently, my doctors have been interested in the possibility of something neurological going on (i've been having blurry vision, missing areas of my field of vision, i walk strangely, and NEVER get the urge to have a bm). whenever they do the balloon test, they always blow it up to full capacity, and i still can not even feel it in me. I am also not able to squeeze or bear down for unknown reasons. they tried biofeedback for a year and it didn't help. I've also tried countless forms of eastern medicine and supplements, changed my diet, physical therapy, osteopathy. Currently, the only thing that makes me have a bowel movement is drinking GoLytely, although after just having an x-ray the docs said that even after taking 10 hours to even start having BMs from it, i was still clogged up. I have been to several colorectal surgeons, who suggest either an illeostomy, colectomy, J pouch, or K pouch at this point.
I am so sorry to make you all read that much, but I am truly writing this out of desperation. I am so blessed to have a wonderful support team of family and friends to get me through this all the time, and also made a choice when i first got sick. I could either have become known as the "sick kid", or continue to be the zany, bubbly, colorful girl who can do whatever i set my mind to (sorry for the cheesiness!). I finished my freshman year of college majoring and double minoring in theater, dance, and music, started a club, held a job, took 8 classes, and got deans list, all while working through all of this. But, now that my symptoms are getting worse, its just getting harder to keep up with everything and uphold my "always happy and healthy" personality around everyone.
So, i guess after just writing that entire essay (i'm so sorry for the rambling!), I am just looking for any suggestions/thoughts on what to do next, and just really want to thank each and every one of you taking away my constant feeling of loneliness, like no one understands what we go through every day, and like i have a place where i am safe to talk to people about what I am really dealing with every day. :)
Thanks again and wishing that all of you are feeling well and had a super happy July 4th,