posts> personal > 38 calls later

38 calls later

September 17th, 2017

People don’t like to talk about their shit, both literally and figuratively. I am 46 years old and I have been diagnosed with collagenous colitis. It’s not cancer, I know, but it’s no way to live. My 76 year old mother has as well, one would say I am genetically predisposed.  My 12-year-daughter said recently after I had been sick for 4 months (being honest with myself I would say it has been a 5 year struggle) “ Mommy I think you are sick so you can help other people”...and so again she teaches me. I write this post for all the people out there too young and old to be suffering. I write this post to build awareness and offer hope to those who suffer. #vulnerability

How could this be happening? I am am the healthiest unhealthy person. I eat well, I am gluten-free, sugar-free, dairy-free, coffee-free and alcohol-free.  A boring 46 year old is what I am, finding myself in the bathroom 12 times a day. I take enzymes, probiotics, vitamins for women over 40 (reality check: I am over 40), fish oil and I am still sick. I am exhausted physically and mentally. I take naps almost every day and I am freezing all the time. I take 1-3 baths a day, so the bathroom has become my place to retreat for comfort.  It has become my haven to cry, where I find quiet. It’s lonely. #insidemyhead

I went to the doctor after having diarrhea, cramping, bloating etc for a month. I had tried many alternative routes over the years but I hit a dead end. Actually, my alternative practitioners said “you need to go to the doctor.” The doctor suggested the obvious, a colonoscopy and an endoscopy. Already being so physically fragile, I requested to use magnesium citrate and coconut water in preparation for the procedure, but he flat out told me I couldn’t. I so wish I had....I did not think things could get worse but they did.

Google colonoscopy and immediately it’s an advertisement for miralax and gatorade. Question, why is it that a person who weighs 250 pounds takes the same amount of miralax (240 oz) and gatorade (64 oz) as a person who weighs 105 pounds? (how to naturally replenish electrolytesmiralax dangersmiralax linked to mental illness and disease). I was told the colon and intestines are the same in each individual, hmmm. I reluctantly obeyed desperate, scared and probably a little intimidated - follow your gut. Even though it went against everything I felt. #research #followyourgut

I needed help, I needed support, I needed someone to understand. What I really needed, I didn’t get.  My doctor briefly came in before my procedure and said so far my test results from my blood work and stool sample were normal. I know normal is good but when you have lost 8 pounds and can barely eat, you need to know why. So I asked him in my vulnerable state (lying naked in my Johnnie) what do I do if everything comes back normal? His response was “take imodium.”  “Are you fucking kidding me?” is what I wish I had said. But being raised to be polite, I didn’t. Clearly something is going on and it’s not going away and this doctor’s only solution is to take “IMODIUM.” That is what he gained after 4 years of medical school. #speakyourtruth

Before going into the scopes ( the painful procedure where they take a closer look at the intestines) they have you sign your life away and tell you that immediately following the procedure, the doctor will come give you the results. Furthermore, they state you may not be able to respond but you will be able to hear him-WTF. So what this really means is that I will have … no ability to ask questions, advocate, and no follow up appointment?  Am I being roofied? The icing on the cake was when the procedure was done, the doctor came in briefly stated that everything was “normal” to which I couldn’t respond because I was sedated. He left just as quickly, then the nurse arrived and asked if I am ready to get up. I respond “I need a minute.” I hear two other nurses say “just tell her she needs to get up and you want to go home.”  Thankfully, she didn’t, she waited probably the extra 5 minutes I took.  What is wrong here? Why are patients being spoken to while the are still under sedation and rushed out? #educate #advocate #compassion

A week later I received a phone call from the nurse, NOT the doctor, that I had collagenous colitis, an inflammatory disease of the colon. This is routine for him, but not for me. Honestly it felt somewhat like a death sentence as I watch my own mother suffer.  The nurse explained how they would like to put me on a steroid 3 times a day and what the side effects are.  At some point I stopped listening, I said, thank you I was not interested. Again no follow up just fix it, why is my colon inflamed, what’s causing it? I am thinking, SCREAMING in my head can we talk this through and what are the other possible choices? Nothing. I am on my own, unless I want to take steroids. You know what steroids do “they suppress the infection deeper into the tissue.” #askwhy #treatthecausenotthesymptom

I have no judgement if one chooses to use steroids because some days I am so desperate, I think, screw it. Maybe my next post will be “I had to take them” but first I will do my homework and ask why,  examine the pros and cons? Some days I want to call in the script because I can’t get out of my own way. I go to bed at night thinking tomorrow is a new day. I wake up in the morning sometimes going to the bathroom 5 times before 7 am.  I am so thankful for my children because without them I don’t know if I would get out of bed. That’s my new normal. I have learned ways to clench my butt together to get through a conversation without shitting my pants and sometimes I don’t make it. I am trying to stay positive that, 38 calls later, I will find the person to help me, to talk to me, to treat me as I deserve, to answer questions without judgement or a demeaning response… Do I have a parasite, bacteria, Lyme?  to care enough if not for the profession of helping others, but out of interest and study. Are we no longer interested why people are sick? #gratefulformyfamily

Four months later I am left with no new answers and no change. I was still rushing my children out of the car at school for fear of making it to the bathroom in time…I am 46 years old. Friends say “Oh I know my grandmother or my mother had/ has that”  and I would think, yeah but I am 46 years old, I have my life to live, I am in my prime, I have 4 kids, I want to travel with my husband and nothing is sexy about shit. Truthfully, it makes you not want to do anything, never leave the house for the fear of not feeling well. Am I going crazy? #mynewnormal

GI issues are becoming an epidemic. There is a reason they call it the “gut brain”  because our gut directly connects to the brain. Some people believe the gut is actually the first brain(Parkinson’s disease may start in the gut and travel to the brain). So it is not surprising that  you become anxious and depressed. My mother was first diagnosed with colitis, then a few years later she was diagnosed with Parkinson’s Disease and now dementia - gut to brain. Of course being on so many medications cause side effects: including constipation and diarrhea. WHY are we so sick? Why are we overprescribed? #gutbrain #overprescribed  

Tomorrow is a new day. I will wake up and the sun will shine. I will be grateful for the day. I will take my kids to school, walk the dogs to return to my new job, sitting down to tackle the various phone calls to the various doctors, and the insurance company trying to find a needle in the haystack. I may look normal on the outside but I feel like I am dying on the inside. #resourcesforcolitis #noregrets