How it All Began…

The year was 2007…the time was 4:37 p.m….I was alone in the bathroom…nervous…it had been a while…I breathed in…I breathed out…as little beads of sweat formed across my forehead…I walked over to the sink and splashed some water on my face…I looked into the mirror and gave myself a lil pep talk as I patted my face dry…YOU CAN DO THIS!  I whispered to myself…JUST DO IT, For GOODNESS SAKE!…although I knew only seconds had passed since I went into the bathroom…it felt like…hours.  I realized it was now or never…and I had to take the plunge at some point…so…I walked towards it…its light blue abyss taunting and haunting me…beckoning to give it…ONE…MORE…TRY!  I sat down on the cold porcelain…and tried. Nothing.  I scrunched down tight…my eyes brimming with tears as I closed them as tightly as I could. Nothing.  I shifted around…did some Lamaze breathing…gripped the sides for leverage…and prepared myself to give birth to a masterpiece. Nothing.  So…I sat straight up…looked over at the full soft roll of white toilet paper…and realized…Nothing.Had.Changed. How ironic to know now…that I was so mistaken…because at that moment….Everything.Would.Change…and my life would never be the same. Ever.

So…I realize as I am sitting on the toilet…that it’s NOT going to happen THIS time…just like it hadn’t happened the last time…It had been a good 4 weeks…I was running out of ideas…and I had tried everything…stool softeners, prunes, colonics…upping my fiber…with Kashi cereal and black bean soup…and nothing was working…So…I went to the Doctor. Paid my co-pay. He saw….me… I surrendered to every test imaginable. “Probe me here?” Um, Ok!…Ouch! “Probe me there? …oh my gosh…really there?… um, ok.”   I let them take every test imaginable.   I didn’t fuss. I didn’t fight.  I just wanted a solution. And the answer I was told finally… in February of 2008…shook me to my core… I was told…you have idiopathic gastroparesis…Um, ok….and what is that exactly? and…WHAT DO I DO ABOUT IT?

Not much could be done with me…none of the medications prescribed to me helped…I changed my diet as much as I could…until the only thing on my diet…was Altoids.  I would eat tin box after tin box all day…usually going through 10-12 boxes a day…yeah, I was buying in bulk at Costco…I sold the tins on Ebay for a nice little profit…to people who needed them for crafts and such or as one buyer told me…”It’s for storing my weed”…um, ok…whatever…just make sure your Paypal account has funds in it.  I felt miserable usually everyday in early 2008…I was tired, bloated and depressed…but at least my breath was minty fresh.

Late April 2008…I vomit in the shower…I come out shaky…my mother (who was visiting) looks at me and says “You are having a gallbladder attack”…I am, really Mom?  “Yes, you are”…uh, ok cause I have never had any problems with it before…We go to the hospital…I pay my deductible. I am seen…Wow, Mom…you WERE right…pretty cool psychic powers, you got there…a week later…my gallbladder was out of my body and stored in a jar and labeled TOXIC…three incision scars mark my body.

The days…weeks…months began to run together…I did the same thing everyday…eat Altoids, watch my belly bloat, watch Golden Girls while eating Altoids, watch my belly bloat more…change into pants that had elastic at the waist to accommodate my belly…eat more Altoids and finally and thankfully…sleep.  I was getting worse nutritionally speaking, my iron was low, I was always dehydrated…my doctor said he was at the end of his medical knowledge about my condition…I thanked him for doing all he could…got my medical records and went home.

Googling about my condition and where I could go to get help became an all day thing. There wasn’t much information out there about Gastroparesis…even people in the medical field would say, “What is that?” or “How do you spell that?”…when I told them that I had it…I finally searched around and found a teaching hospital nearby…I call. I got an appointment to see a more knowledgeable GI doctor…it was July 2008

More tests were ordered.  Results came back. Suspicions of me getting worse were right. Something had to be done…the Chief of Gastrointestinal Surgery steps in and says to me in a kind voice…”We need to remove your stomach.”

I look at him…I see his mouth moving…but I hear no words…Excuse me? What was that? But I knew he didn’t need to repeat it…I had heard it the first time.

August 2008…I am prepped on how my life would change…no more milk based anything…”Lactose intolerance may be a side effect of this surgery.”…who cares, I never liked milk anyway..”That means ice cream too.”…oh, wow…that does kinda suck…”You will also probably have to get iron shots too.”…it’s cool…I rather deal with shots then being bloated all the damn time. “Ok, so let’s get started.”…anything you say, Doc. I am prepped for open stomach surgery…as my eyes close…no longer able to fight the drugs that will soon put me in la la land…my last delirious thought was…Will they put my tummy in a jar like my gallbladder? I breath deeply..Stillness and Blackness envelops me.  I am sleep.

I wake up without a stomach…but with something new.  A long vertical scar across my body.  I wake up without a stomach…but with something new….Hope.

I leave the hospital 15 days later…I am on mushy foods…I no longer, “technically” had Gastroparesis…I was happy…I wasn’t bloated…I pushed my luck the next day by eating ice cream at the mall…I vomited…I guess Doc was right.

Days…turned into weeks…weeks turned into  months…things were good…I felt good…started running again…watched my eating…then something didn’t feel right…maybe it will pass…A couple of days went by… I could hardly eat…I was bloated…I was tired…I was really constipated…I went to the ER…it was May 2009.

“You need a blood transfusion, but with your history, we called your GI doctor…he will meet you at the hospital.” I was told…I left…I went right away…I didn’t pack a bag…who needs a bag for just a transfusion, anyway?

“I am sorry, but we are going to have to admit you…we aren’t exactly sure of what is going on here.” Doc says as I am receiving my goody bag of blood…the nurse fiddling with my IV gives me that “pity” look and pats my arm, gently.  I half smiled back…and thought…Damn it, why didn’t I pack a freaking bag?…I sat in silence as I watched some nameless person’s blood become one with my own.

Days pass. Tests are run. I can no longer eat.  I can barely drink. 9 days later, I am released with a PICC line in my arm…I will get my “food” from a bag…TPN…a liquid source of vitamins and minerals…oh boy!  I cried when I got home.

7 days a week for 12 hours a day…I ran my TPN meter…I fed on liquid.

I kinda don’t like the PICC line…has to stay dry at all times…

7 days a week for 12 hours a day…I ran my TPN meter…I fed on liquid

“Are you a recovering drug addict?” I was asked while in line at Walmart…um, no…”Oh…I saw your PICC.”  As she walked away…I looked down at my arm…and suddenly despised Patty…I had named my PICC… Patty…out of love…but now all I could think about was hate.

Weeks turned into months…I was going crazy…my meter beeping like Poe’s Tell Tale Heart…I made a decision…no more TPN…I needed Google.

I researched night and day…trying my luck…and ended up with an appointment with one of the “Best Doctors in America”…I explained about the TPN, he agreed…and worked with me to establish a liquid diet I could deal with…he then sent me to the “Clinic” where I could receive more help.

The “Clinic” specializes in certain tests.  I take them all.  They are not fun nor pretty.  They deal with poop…I can’t poop…I had not pooped for about 3 weeks…tests came back. “You have what we call Colon Inertia.” Um, ok, what is that?…and… WHAT DO I DO ABOUT IT?

Colon Inertia means you have slow motility in your colon…you eat an apple on Monday…chances are it will still be in there on Saturday…that’s kinda gross.

So I go home…I have my plan of action…I know removing my colon is not an option for me…so, I will learn to manage this condition…I will try to be positive…I will take my excessive amounts of laxatives, do my 1,000 ml enema and do liquids everyday…and I will wait to poop…I will wait…and wait…

I wait until I can no longer wait…it is too exhausting and stressful…”Get off the laxatives, and stop doing the enema…they are not helping you, they are hurting you at this point.” Doc says one day after I tell her I am on 10-15 laxatives a day…and managing two bowel movements a month…I stop. I have my liquids and I don’t worry about when or how many poop poops I have…I am less stressed…and I am managing…

And I know there will come a time…when I will be back in the hospital…because my body can only take so much…but I know when that day comes…and decisions must be made…that I did all I could do to keep my body as healthy as I could…so I wait…and wait…

I am still waiting  🙂

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15 thoughts on “How it All Began…

  1. Triple wow! I’m thinking of starting a chronic illness blog (I have AIDS and breast cancer) and was searching through examples on WordPress. I love how you write with no self-pity, how courageous you are to show your photo (of course it helps that you’re stunningly beautiful 😉 … how well you write (clear, concise, easy to read, informative). Wishing you nothing but the BEST of luck on your journey!! Cyber-hugs to you.

  2. Your blog is so awesome. I love how strong you are. I definitely need to take lessons! Thank you for writing about your life. You are an inspiration.

  3. I will admit, I almost cried. These words are so touching, that I put myself in your position for a few seconds…you are a very strong willed girl.

  4. Thank you for sharing. I have gastroparesis. I was diagnosed three years ago and even though I have made HUGE lifestyle changes it seems to still be getting worse. I have days where I have hope that it is getting better and then get knocked down. I am sorry that I am not alone, but I am also encouraged by the comradely association. Best Wishes.

  5. Wow. I’m so happy to have found your blog…I’m sorry this has happened to you of course, but it may very well help me. I won’t go into my whole long story, but I’ve had 16 abdominal surgeries due to a perforated bowel, leading to ostomies, resections, mrsa, flesh eating virus, adheions, mesh failure, hernia, etc. I was on TPN for a year in 2006 with nothing by mouth mostly. Then in 2007 I got closed up and could eat again, although docs said eventually I would be on babyfood…I barely listened….now I am listening. I have to be very careful what I eat. No raw veggies/fruits, no red meat, no beans, no gassy foods, no dairy, no fiber, no nuts/seeds….things have gotten worse over the past year. I am so bloated I appear ready to deliver a full term baby, the pain from the scar tissue pulling during peristalsis is horrid, I can only poop about once or twice a month, after taking daily stool softners, laxatives and suppositories…

    I have bowel blockages here and there, but can handle them at home…but in September I hadn’t gone poo in about 6 wks, I was so bloated my belly was a balloon ready to burst, I was so nauseated, couldn’t eat…so they put me in hospital…said cecal infarction…but no huge blockage…they kept me there a damn week first not eating, then full liquids…at the end of the week they said I could go home and just eat what I could tolerate and continue the laxatives, softners, suppoitories, pain meds etc…but no new answers as to whats happening other than the adhesions and slow motility…and I heard one doc say something about gastroparesis and colonic something…but now after finding your blog, I’m gonna get my records…I have considered finding a “good doctor” at a big hospital like Mayo or something…because I have no life now. I’m in bed 90% of the time, the pain is unbearable. I have tried acting normal for a couple years….tuff it out…suck it up…push thru the pain…smile…but I can’t anymore…..

    Maybe with this new knowledge I can get a doc to do something to help me! At one point they gave me actizia or something like that, to speed up peristalsis, then 2 wks later bently to slow it down…same doc…this made no sense to me…then hospital added something for gerd, and hyoscamine for bowel spasm…..

    All I eat when I’m being good is mashed tatos, ensure, rice cereal..like cream of wheat…pureed baby food type stuff…but so many days I just say, oh well, this one bowl of macaroni or spaghetti or hot dog wont hurt…oh hell yes it does…I will suffer greatly for eating normal food…as I am tonite for eating a cookie, mashed tatos, gatorade and the thing thats tryin to kill me now…4 bites of a subway turkey sub.

    Thank you for sharing your story. I’m gonna be a new fan for sure….I’ve been in a deep depression…how do you give up eating? I can’t do it…how do anorexics do that? I love food! I love to chew..I love flavor! This is hard…and I know its gonna get harder…I’m scared.

    Tammy

  6. I am at a loss words. Between the tears and inspiration, I am amazed by you! I can’t say I have heard of your condition. I’ve had my share gastrointestinal problems and it was very difficult to deal with. I wish you the vey best with everything… keep the faith and keep telling your story!!! 🙂

    -Onelifethislife

    • One more person knowing what others face is a win win for awareness! It just one person to start the ball rolling in order to find a cure…I might just be a pebble, but you have start somewhere. OO
      Thank you…

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