For your Moment of the night…..a small sampling of artists on the playlist I am listening to while I write this post.
Culture Beat Joy Division Dead Kennedy’s Meatloaf
Ini Kamoze Bad Religion The Misfits Interpol
K7 Oingo Boingo My Chemical Romance The Offspring
Skeeter Davis Katy Perry Simon & Garfunkel Billy Joel
and many more!!
First off let’s get this out. No this is not a post or even a blog about what’s wrong with me. I am NOT trying to get attention or collect sympathy. I am simply trying to find a way to be able to have a central location for my thoughts and rambles and so I can stop repeating myself to every single person I meet.
So I guess with that being said it took a long time to decide what or how to actually start writing today. One thing that will become abundantly clear the more you get to know me is that processing what is actually going on in my mind into cohesive thoughts everyone can understand is not intuitive for me. It takes LOT’S of practice.
This week I got some crazy news (see the Ulcerative Colitis section for this news) and so I decided this week I would blog about some of the conditions I have (mystery and diagnosed) and some of the challenges these conditions pose for my daily life.
I have some challenges that most people don’t even realize are actual things that happen to “young people”. I hope this helps inform you (whoever you are) about some common conditions with uncommon presentation or behavior. Being informed can save a life in some cases. Doctors do not know everything.
I have had such a hard, bizarre life. Mix in the medical “rarities” I have experienced I feel it my duty to share my story with whoever is willing to read along with me.
This blog is my memoir of sorts. I won’t live forever but hopefully my blog will continue to inform and inspire people long after I am gone.
One of the main challenges I face daily is the fact that I am in a constant battle with my stomach. I have many GI tract issues. Some have been lifelong, others have developed over time. Nausea, vomiting, bloating, gas, cramps, constipation, diarrhea, blood, mucus to name a few.
It has long been suspected that I suffer from Gastroparesis.
Let me guess….
Taken from The Mayo Clinic:
“Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally. Ordinarily, strong muscular contractions propel food through your digestive tract.”
I need further testing to confirm this. I had an endoscopy on November 18; a couple of weeks ago. Everything was as expected, physically normal with some erosion from my GERD. Next on the agenda is the “Gastric Emptying Test” which I have yet to schedule.
Another GI disturbance is in my lower GI tract. I have always been prone to getting “clogged” and even had a mineral oil and OJ regiment I drank as a kid.
*makes face of disgust*
Taken from The Mayo Clinic:
“Ulcerative colitis is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly.
Ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications. While it has no known cure, treatment can greatly reduce signs and symptoms of the disease and even bring about long-term remission.”
Since the mid 2000’s I have been suffering from symptoms of Ulcerative Colitis which is an autoimmune disease. I was diagnosed with this condition pretty quickly after my symptoms began, within 2 years or so after first noticing bleeding which was my only symptom initially.
After diagnosis and treatment began I was chugging along my new status quo for about 3 years. Then things went wildly out of control for many many years and because of that has given me increased risks for complications down the road. Finally now, after many years (2009) I seem to be mostly in remission.
Remission is a fickle word.
Don’t ask me why anyone would choose GI doc as a profession with all the colons they have to examine. Ulcerative Colitis is diagnosed by a colonoscopy and biopsy of the tissue in your colon. When I got my diagnosis I was only 26 years old, and I was diagnosed with Pan-Colitis. Pan-Colitis is diagnosed when active colitis is observed either with a visual from a camera during the procedure or from pathology results from biopsies of tissues collected during the procedure. Ulcerative Colitis is actually a COMMON disease and very similar to Chrone’s Disease.
When I had my endoscopy on November 18 my doctor did a Colonoscopy also just to establish, a.k.a “see for himself” what was going on in there. My GI doctor actually said…..
“Everything was as expected. If you hadn’t told me about your history of colitis I would never have known by looking. It looked great and we only removed one small polyp from your colon”
Well a single small polyp didn’t seem too concerning because usually these procedures show a lot more than a small polyp.
BUT looks can be deceiving.
I found out last week (the last week of November) that the polyp removed was benign PRECANCEROUS!! This was the first time I ever had precancerous cells detected from ANY biopsy.
The scariest part of this particular finding? I had just had a colonoscopy in early 2014, not even quite 3 years ago. I was not supposed to need a colonoscopy right now. My last colonoscopy looked a mess and I had several benign polyps removed.
When my doc told me he wanted to do the procedure I even thought to myself “This is so dumb, I just had one of these and I am not having symptoms right now”.
Plus I am only 37, the likelihood of any cancer threat is still low enough, even with my history. My diagnosis of Ulcerative Colitis required me to get a Colonoscopy every 8 years (I have had 4 of them in the last 11 years). I have had 4 Colonoscopies my most recent just under 3 years ago and I could have easily ended up with cancer!! Had I waited my RECOMMENDED 8 years??? Who knows?? I wasn’t due for another exam for 5 more years.
GET A COLONOSCOPY PEOPLE!!
Another GI Tract inconvenience is severe GERD. GERD is something I am sure 99% of people have heard of.
Taken from The Mayo Clinic:
Gastroesophageal reflux disease (GERD) is a chronic digestive disease. GERD occurs when stomach acid or, occasionally, stomach content, flows back into your food pipe (esophagus). The backwash (reflux) irritates the lining of your esophagus and causes GERD. Both acid reflux and heartburn are common digestive conditions that many people experience from time to time. When these signs and symptoms occur at least twice each week or interfere with your daily life, or when your doctor can see damage to your esophagus, you may be diagnosed with GERD. Most people can manage the discomfort of GERD with lifestyle changes and over-the-counter medications. But some people with GERD may need stronger medications, or even surgery, to reduce symptoms.
My GERD was in the form of horrible heartburn for many years, then it seemed to be “silent” for a long time. It was actually diagnosed as “Silent Reflux” by my ENT in 2013. He put me on an antacid and said “you’re good”. SOML (Story of my Life) I was not “Good” I ended up on a full on acid blocker (it’s just a more heavy-duty PPI).Then my current GP had this brilliant idea to take me off some of my meds over the summer to see if some more homeopathic approaches might help. My doctor’s practice focuses mostly on “Functional Medicine” which I am actually not opposed to. HOWEVER in this particular situation it was a disaster and was doomed from the start. Needless to say my brief stint with the holistic GI remedies ended when I finally gave into the pain of the firey flaming disaster erupting in my gut. I threw in the towel after only 4-5 weeks of trying. BUT I learned something and so did my doctor so it was worth it.
All of this was made even more frustrating because any of these conditions separately usually cause weight LOSS but coincidentally I also had undiagnosed insulin resistance for many years and couldn’t lose weight with ALL these problems no matter how much I ate or how often threw up or pooped.
Taken from The Mayo Clinic:
Polycystic ovary syndrome (PCOS) is a common endocrine system disorder among women of reproductive age. Women with PCOS may have enlarged ovaries that contain small collections of fluid — called follicles — located in each ovary as seen during an ultrasound exam. Infrequent or prolonged menstrual periods, excess hair growth, acne, and obesity can all occur in women with polycystic ovary syndrome. In adolescents, infrequent or absent menstruation may raise suspicion for the condition. The exact cause of polycystic ovary syndrome is unknown. Early diagnosis and treatment along with weight loss may reduce the risk of long-term complications, such as type 2 diabetes and heart disease.
In August 2015 I was diagnosed with insulin resistance. I had been trying to convince any doctor who would listen that I had something wrong since long before I tried to have kids or even started to gain weight uncontrollably. It wasn’t until October of this year that I had confirmation of my official diagnosis. I have PCOS, I knew this in my heart all along.
You might be thinking….
“PCOS? Why did it take almost 20 years to diagnose that? It is a common and treatable condition.”
Well let me tell you. Unlike most people who get an easy diagnosis I had to go through a long drawn out almost 2 decade long argument with the medical professionals I trusted to help me. You see I had no “proof” I had PCOS and my labs were “Normal”. This is a very long story that is continuing to unfold and I don’t want to get too far into it today. I am getting sleeping. Long story short. I was diagnosed with insulin resistance based on my symptoms, appearance, and “normal” insulin result. It was an 11. Normal range for insulin is 3-14. My doctor said it should have been no where close to even a 7 if I was fasting (which I was). So I started Metformin. The weightloss came fast and it came in spades. Vindication was finally mine. Finally I could prove that my diet, exercise level and everything else didn’t play a role in my weight. There was literally nothing I could do to get it off until I had this diagnosis.
I am happy to be heading down a new road every single day. You see, if I didn’t go through all these things I wouldn’t be who I am today. I love myself and I love who I am today because of my experiences. I don’t see value in being angry and bitter and thinking about this as something that “happened to me”. I prefer to look at this as the hand I was dealt and it’s how I choose to LIVE that shows my strength & true character.
I choose to share these experiences. My hope is to reach someone who feels alone and ignored by the medical community or anyone else and to inspire them to not give up on themselves. You are worth the fight.
I am not even close to finished with laundry list of medical and mental health shenanigans but it is almost 1am and I need to go to bed. I will try to get another blog post in next week. Who knows when THIS topic will continue but one thing is for sure…..it will.