ūüáļūüáłWe Need Your Supportūüíú


Let’s cut to the chase, no one likes to read something long and drawn out (or so my husband tells me ūüėä). ¬†Or maybe you do, and if that’s the case, please feel free to scroll down to my other blog posts and get caught up to speed!

I am participating in the Take Steps Walk for Crohns and Colitis. ¬†I have attended the Take Steps walk the last two years with my husband, and as it turns out his military obligation will prohibit him from being able to attend the walk with me this year. ¬†I am lucky enough to have a few of my other close friends walking with me, and I couldn’t be more grateful to them for their continued support from the beginning of my UC diagnosis in 2014. ¬†With that being said, Team JD will have one less member walking–which means I really do need your *extra* support! ¬†My husband is a strong supporter of me, my illness and he’s there to encourage me and challenge me everyday. ¬†My husband is a fit marine and having him there to do the walk with me the last few years has been extremely encouraging. ¬†This year, I will go to San Diego with a little less pep in my step–as having him there really does help ease different anxieties and fears. ¬†Since 2010, he’s never let me fall. ¬†I mean this quite literally-in 2015, after what was believed to be a drug induced seizure, caused me to seize up and posture for an extended amount of time. ¬†As the sezuire started, my husband caught me before I fell to the ground. ¬†My husband, in a way, has been my security blanket throughout this illness. ¬†If I need something, he is right there to help and catch me when I was falling. ¬†I, luckily, have no recollection of that seizure–however I can’t say the same for my mom and husband. ¬†Although, this blog post wasn’t intended to be about that day or my seizure–but rather about how my biggest support system won’t be there on May 20th. ¬†I have been a marine wife for 7 years, and I’m capable of handling a lot…but I will miss the support of him for this walk. ¬†I know, almost certainly, that he will feel bad or guilty if he reads this post–(which is not my intention babe). ¬†I am beyond proud of him for his continuing sacrifices- for me, my illness, and our country. ¬†As sad as I am to be going to the Take Steps Walk without him, the feeling of pride I have for him as my husband far surpasses any sadness. ¬†So please, Donate for me and the 1.6 Million Americas suffering from IBD–But also, donate for my husband who will be working to keep you safe and relying on me to be the strongest version of myself On May 20, 2017. ūüíúūüáļūüáłūüíúūüáļūüáłūüíúūüáļūüáłūüíú

 

http://online.ccfa.org/goto/TeamJD

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Take a step with me…ūüíú

For the last two years I have attended the Take Steps for Crohns and Colitis fundraising event in San Diego, CA.  I have inspired and encouraged others to partake in this walk in other major cities as well.  I couldn’t be prouder of my friend Stephanie for her continued effort and support for the CCFA!  At this time I would kindly appreciate any donations-even the smallest amount can make a difference.  My husband and I usually do this walk together, it’s symbolic and emotional for us both.  He has taken every step with me from the beginning and I couldn’t feel luckier to have him by my side again this year to walk and reminisce about all we’ve been through with this disease.  There’s something empowering about being with such a large group of people who understand all that your going through.  We’ve all walked in each other’s shoes and on May 20th the IBD community of San Diego will come together again to show the world…we need a cure.  We need a cure, we are all suffering until that cure is found.  So let’s fundraise and find it!  From the bottom of my ūüíú….thank you for your donations!!! 

Follow the link below and donate! ‚§ĶÔłŹ

http://online.ccfa.org/site/TR?px=3142464&pg=personal&fr_id=6816&s_src=boundlessfundraising&s_subsrc=:sub_source

A Hair Milestone ūüíĀūüŹĽūüíáūüŹĽ

We’ve all heard the hashtags #longhairdontcare but for me it was #shorthairdontcare-except I did.  Almost a year ago to the day, I decided I had had enough of my hair falling out all over the bathroom floor.  It was not only a nightmare to clean up after, but the feeling of my hair falling down my body in clumps while in the shower brought me to tears almost daily.  As if I hadn’t gone through enough, I was now losing so much of my hair.  I always tried to maintain a positive attitude and thought to myself, it can always be worse and at least there’s regrowth.  Recalling my feelings, even now, brings tears to my eyes.  Until this point I had been able to hide what was wrong under my clothes-but when my hair all fell out I couldn’t hide the true torture I was enduring anymore.  Anyone who has ever known me, including my hair stylist of nearly four years, has known me with long, thick beautiful hair.  I was blessed with great genes (thanks mom!) and my hair has always been my thing, my pride.  I have my cosmetology license and have always been into styling and doing my hair.  Even as a middle schooler, I can recall waking up early to curl or straighten my hair.  It was always my thing.  That is, until July 1, 2015 when I had no choice but to have it all cut off.  I always knew I’d write about the experience of losing all my hair, until now though, I haven’t felt comfortable enough to do that.  Even after I got the pixie cut, which everyone in my life admired but me, I always reminded myself that at least I have hair.  I was never bald, and I can’t even imagine what that is like for other’s who’ve endured losing every bit of hair they had.  However, at moments it made me feel less feminine and very insecure.  Every time anyone would compliment my hair, I felt compelled to tell them why it was so short.  Usually I would be vague and say something to the effect of, “I didn’t have a choice, but thank you.”  As I was reminiscing with my hair dresser last month, I reminded him that a year ago was when we chopped it all off (or what was left of it).  I have come so far in a year, and although I have a hell of a long way left to go-pictures are a reminder of how far I’ve come.

I wanted to share, how I feel, my hair has grown so much because I do believe it is in large part to taking the vitamin, Biotin.  You can get it anywhere, any store that sells vitamins-it has helped me tremendously.  I was blessed with a thick, dark, Italian head of hair.  My mom would remind me often, that she had so much heartburn while pregnant with me.  And as a result I was born with a full head of hair.  Genetics are key, but biotin (I feel) was also the key.

After I cut my hair, I was devastated (to say the least)-and my mom’s friend who has known me nearly all of my life sent me this message and I wont ever forget it.  She said, “Hi, Jerica-when your mom first told me about your hair falling out I was completely heartbroken for you.  So much of who we are is literally tied up in our hair (unfortunately).  Then your mom told me that you were thinking about cutting it short & I couldn’t imagine how devastating that must have been.  But knowing what a beautiful face you have, I was certain that you could pull it off.  Well, your mom just sent me a picture of your hair (the one with the bangs).  Jerica, you look AMAZING, GORGEOUS, I love, love it! I knew you would be beautiful! Xoxo”  Throughout the year, this text is something I’ve reread because it is so true-so much of who we are is LITERALLY tied up in our hair.  I gained a confidence I didn’t know I had, and I appreciate so much more the little things- like being able to put my hair in a half ponytail (as I’m still not able to fully put it all up yet).  I feel blessed, and I’m so thankful for the hair that I can pull up.  In fact, the day I was able to use my old ponytail holders again, was one of the most exciting days I’ve had-it was a hair milestone!

Today, I wanted to share with you (a year later) my hair milestone and to say thank you to everyone who reminded me that throughout the process of growing it back that I was still beautiful.  Especially my husband, who continuously told me he loved it-and meant it!  We don’t always love the hands we’re dealt in life, but if you can learn to love and enjoy the game it makes the bad hands easier to handle.

ūüĆéūüĎĀūüźĚD

Today is world IBD day…a day to educate one another about the different types of inflammatory bowel diseases.  I stopped to think about what world IBD day really means to me.  Some of the words that came to mind were brave, purple, strong, support, steps, courage, fear, strength, pain, and awareness.  What I write, the world might read.  Words are powerful.  The day I was diagnosed-with just one word, my world changed.  Colitis.  I’m going to do my best to get through this blog post without a tear today-and so far so good.

 

What I believe a few of my IBD friends would want me to say…we are strong.  Mentally and physically we’re fighting all the time.  We’re fighting to make it through the day, and in a way we’re magicians too.  We hide the problems so no one else can see.  We pretend most of the time that everything is ok-when really we are counting down the hours until it’s an acceptable time to crawl back into bed.  In fact, most days-my biggest accomplishment might be staying awake all day long (usually this doesn’t happen-which is why it’s an accomplishment).

We take pills, and meds and more pills until we’re blown up on prednisone.  This is the reality of an IBD patient.  Since no one knows what causes it–truly–and everyone’s body is unique, there isn’t one clear cut way to manage IBD patients.  So typically, I’ve found, doctors treat the symptoms instead of the disease (but not before giving  Apriso and Lialda whirl).  You’re bleeding-try Prednisone.  You’re tired-take iron.  You’re nauseas-take Zofran.  You’re in pain…now wait a minute…how much pain..on a scale of 1-10.  Ok, so my answer is usually 7/8…because in my opinion there’s what we call “tolerable” and “intolerable pain.”  IBD patients know, pain is inevitable –it just is.  Therefore, if we’re in pain and we’re actively seeking out help it’s for a reason.  If we had a slight pain, we’d be out doing something we enjoy.  Ok, so the pain is a 7…take Hydrocodone or Dilaudid.  Your back hurts… try Lidocaine patches.  Things still aren’t going well…let’s try 6MP..it’s a chemo pill but it’ll be ok.  All the while, we keep swallowing pills and trying to keep the symptoms at bay.  Have you ever met those people who say, “I don’t like to take pills”–and you think…they don’t know how bad a pill is until they’ve tried to swallow a potassium pill.  Those potassium pills are no joke!  We’ve also met those people who cringe at the sight of blood or getting an IV put in…and again we think…they don’t know pain until they’ve had to have potassium intravenously pumped into them (which burns like fire in your veins).  Oh and by the way, I’ve had/used all of the above.  So you can’t sleep because you’re up going to the bathroom in conjunction with the Prednisone that (had I known in college keeps you awake-I might have been able to pull an all nighter better–kidding mom)…but seriously…Prednisone is the devil in pill form.  It keeps you wired…so…try Ambien they say–it’ll help they said.  HA!  If I had a dollar for every time a doctor told me to try something, I’d have enough money to have a lab created colon made.  I could go on for days, the point is…IBD is hard.  They can pump all these miscellaneous drugs into our veins but at the end of the day–we’re stuck.  We’re at the mercy of all these doctors and specialists.  At times, it feels like the blind leading the blind.  Oh…you’re also feeling sad/miserable/depressed because you have a disease that you didn’t plan for and you’re life now revolves around where the closest bathroom is…take Zoloft, Lexipro or Wellbutrin (dealer’s choice really).  If you think I’m utilizing humor mixed with a side of sarcasm to lighten this blog up–you’re right.  The funniest things are true…and I am by no means even stretching the truth.

Awareness is crucial to the success of discovering a cure.  One day, one step at a time we’re all trying to help solve what seems unsolvable.  Through support groups I’ve made friends, we all have similar symptoms have taken similar drugs and understand the affects–but we’re all different and we don’t understand how this happened to us.  All diagnosed before the age of 30 with different backgrounds, different genetic makeup, yet we all have one thing in common-IBD.


 

 

It’s not ok…and that’s ok.

You feel like no one understands, and the few that do won’t make you explain.  It has been 73 days since my last blog.  A lot has happened, a lot has changed.  I’ve never been one to put my entire life on Facebook or social media-and I only do it now to help and educate others.  No matter how much I explain my situation there’s always so many layers of confusion for my friends and family.  My best friends know, don’t ask me “how are you”…if it’s bad..I’ll tell you-other than that we need to discuss something else.  I had my last surgery (for now) a month ago.  I’ve learned my strengths and I’ve learned my weaknesses.  I’ve literally had moments where I don’t think things will ever get better…and I’ve experienced a loss of apetite that no Italian should ever have to endure. I become so frustrated that I feel like lashing out-but I don’t.  I’ve become silent these last few months because I wanted to be the positive “it’s ok” voice that everyone around me needs to hear.  It’s not ok, it’s very very hard to be sick.  Any kind of sick.  I’ve also never wanted anyone to feel bad for me-in my opinion I feel bad enough…no one else needs to feel any bit of how I do.  I often think about blogging this or that-and I know what I should say and what I actually feel couldn’t (at times) be any more opposite.  I also feel like at this point, people are wondering…is she better…or is she still sick.  No one asks me, but I can only imagine the thoughts.  If I post a picture…a picture captures a moment in time.  In that moment, I might be ok-in the next…I might not.  It’s been 73 days since I’ve posted my last blog…I’m trying my absolute best to get back to where I was mentally, physically and emotionally.  Everyone is dealing with something…everyone…and for that reason I don’t feel special for my feelings. All I ask is that when anyone sees me out-you don’t say “how are you”-my answer will always be hesitant and I will probably lie to you.  When I’m great, you will know…but until I’m back to me…instead I’ll just be this.  I’m frozen for now- waiting, praying and hoping for a day when the pain mentally, physically and emotionally will cease.  It’s not ok…but it’s ok.

This Too Shall Pass…

The excruciating pain I felt after my first surgery was like nothing I had ever experienced before.  Prior to this surgery, I had never broken a bone or needed any kind of major internal surgery.  When I woke up, I remember asking for my family.  The nurse told me that she would call them down soon-but first we needed to get my pain under control.  I actually think in my delirious state I even joked around about my dog Gibson.  I can’t recall the joke, but can only tell you that I think my gibberish had the nurse laughing.

It quickly went from jokes to internal pain and torture.  I can’t recall a lot, and I usually only remember things in flashes and they are in no particular order.  However, I do remember-quite vividly-when they pulled the drain tube out of my stomach and had to sew my stomach back up (all while I watched).  In conjunction with that, they also decided to change the bag for the first time at this point.  I was so freaked out by the fact that an organ, that is usually never seen by most of us, was now protruding out of my stomach and moving.  I cried at the sight of it and felt like an alien.  It was like something you’d see on a medical show or a horror film.  In that moment, I felt as if my life was one giant horror film.  I remember feeling extremely embarrassed, and thinking that if anyone knew-really knew- what I had gone through and that this was the outcome…no one would ever look at me the same.  My husband had seen me at my worst, but I was most embarrassed to have him see what his wife had become.  I would begin to make jokes that helped deal with my insecurities about having a stoma and the bag.  I’d say things to him like, “Don’t be jealous, just because I can do the dishes and take a poo.”  I constantly remind him that I’m always multitasking.  He found it humorous and although not everyday is laughs and butterflies with the stoma, this was how I communicated to him.  I would respond to some of his sarcastic jokes by saying, “I’m the perfect woman, I really don’t poo out of my butt.”  I think that’s an inside joke most girls will understand.  In front of our husbands/boyfriends/significant others we pretend for the first few months (while dating) that we don’t fart, poo, or do anything of the sort.  Obviously, we all know differently-however it’s a fa√ßade I know most woman try to maintain for as along as humanely possible.  I think people would be surprised to know that after the first surgery I did not go to the bathroom rectally.  Not a fart, not a poo-nothing.  It was as if nothing existed.  However, for a while I would get what we jpouchers call phantom poops…this is what happens when you feel like you should be going but you can’t.  You could sit there all day long, and still end up without any results at the end of the day.  But the sensation in your stomach makes you feel as if you need to go.  It’s a strange concept to imagine unless you’ve dealt with this yourself.

At this time last year I was just beginning to accept the snail as a part of my life.  It’s similar to being in a relationship. You’re unsure if you like the stoma or not-you know in your head that you kind of should…but you still find ways to complain about it.  The pain from the UC was gone but you just don’t know how to feel about this new invasion.  I was never fond of the stoma and I’m still not.  It’s annoying and has a mind of its own 100% of the time.  I have no control over when the bag will leak/break.  Or when I decide to change the bag if it will allow me to do so.  I’ve described changing the bag to a friend in this way-it’s like trying to play the game jenga and wipe your butt at the same time.

I remember the very first time the seal broke like it was yesterday.  I was sitting at the kitchen table, Josh was sitting to the left of me and my mom was pouring herself coffee.  The seal had broken-which now I can attribute to more than likely the swelling going down.  When you first have surgery your bloated and swollen, however as the days pass and you still have the same appliance on your body-and your body changes but the molds have already formed to you.  I think it’s important to remember this-for all you new ostomates reading this.  It could be nothing you’ve done, but your body changes and the appliance doesn’t always catch up.  Nonetheless, I was sitting at the kitchen table eating breakfast when I felt the seal come undone.  I was beyond petrified.  I’m so lucky that I had my mom and my husband both there to assist with the changing process.  I became so overwhelmed and nervous I nearly passed out (no joke).  I had to lay on the bathroom floor while together my mom and my husband tried their best to remember the order and the steps in which every part of the appliance belonged.  The first time the bag breaks its frustrating and you probably won’t be prepared but-it will happen-it will pass and it will be ok.  Easier said that done though.  As I laid on the bathroom floor, and they put all the pieces to the ostomy bag puzzle together, I felt embarrassed.  It was the first time I needed help at home and it just so happened to be Labor Day weekend when I got out of the hospital.  So, of course, that meant that the at home healthcare agency wasn’t able to come out to my house to assist with the changing of the first bag.  I got through it though, that’s what I remind myself of everyday.  I’ll get through it, this too will pass and it’s a mountain now but it’ll only be a grain of sand tomorrow.  In the moment, we all get frustrated with this lifestyle.  Changing the bag is the equivalent to a volcano.  No one can predict when a volcano is going to erupt, you can guess but you can’t be sure on the exact moment-well folks….having an ileostomy is the exact same thing. It’s unpredictable and at times it feels unmanageable.  However, during these moments of despair and defeat it’s important to remember that this too shall pass.

Happy Anniversary ūüźĆ

They say a picture is worth a thousand words. ¬†I tried my best to write a blog entry but was unsuccessful (multiple times). ¬†You see when I share my story…it sometimes causes me mental distress to do it. ¬†I relive the situations so others understand and become aware that this can happen to anyone at any time. ¬†I also do it to avoid those awkward conversations that could frankly take hours for me to really tell you how I am or how I feel. ¬†Today is the one year anniversary of my snail and although I get mad at it often…and hate the pain it causes me on a daily basis it has saved my life more than once. ¬†I couldn’t write a long blog this time..because my tears got in the way. ¬†I usually try to only post positive, upbeat and heartfelt blog posts. However, the truth is…I’m sad, mad, grateful, and beyond blessed today. ¬†Thank you to all my friends and family who help remind me everyday that I’m still me. ¬†I’m a wife, a daughter, a granddaughter, a sister, a cousin, a niece, a daughter-in-law, a best friend, a friend, and someday I hope to be an inspiration to others.

Picking “The Snail” Spot ūüźĆ

As I sit here, in an itchy and uncomfortable amount of pain I wonder what a day would be like without any pain or discomfort.¬† Those days are a faint memory to me and I complain less and less because I don’t want to appear as weak-when truly I am emotionally and mentally the STRONGEST person I know.¬† I know, I know..sounds a bit boastful right?!¬† When you’ve endured seven surgeries to date and live in a constant state of skin burning and irritation-then you can judge.¬† I won’t go on about the pain, but here’s a comparison for you all.¬† Ever taken tall socks off after a long day, and when you take those socks off you can see the indentation mark from the socks…and it begins to almost itch from the restriction all day.¬† That’s what it’s like wearing a bag with an ostomy belt 24/7.¬† Except you can’t take the bag off, but for short periods of time.¬† Welcome¬†to my itching, burning, painful hell with what I have referred to as “the snail”–which mostly is because it is constantly moving.

The entire day and night before my very first surgery, I was beyond sick.¬† Everyone who knows about colonoscopies¬†understands you have to take, what I refer to¬†as¬†“colon blow”–the name speaks for itself.¬† At this point I weighed about 117 pounds and I was weak from my two months in ICU and the¬†Remicade reaction.¬†¬†From the time I got out of the hospital to the day before my surgery, anything I ate would go right through me-literally.¬† So, when it came time to take the colon blow…there wasn’t much left to blow.¬† However, my mother insisted that I try to drink some of it.¬† I also was given¬†an antibiotic to take with the colon blow-which created the perfect storm within my body.¬† I was a mess, I was puking and sicker than sick (as if that was even possible).¬† I have never been able to drink that stuff and by this point it was my third round of bowel prep in just five months.¬†I truly¬†hope they develop some kind of alternative that tastes way better for you future Crohns and Colitis patients, because this stuff is no joke.¬† It tastes absolutely¬†terrible going in and it’s equally as terrible coming out (via vomit or otherwise).¬†¬†Even writing this now, and thinking back¬†to that last day of taking the colon blow, my throat clenches and¬†my stomach does a flip or two.¬† If¬†you’ve never experienced it, consider yourselves extremely lucky!

I didn’t have a lot of choices, as my previous blogs stated…it was lose the colon or live with the excruciating pain.¬† Obviously a no brainer for me, but even the¬†most certain person has doubts.¬† I had doubts up until the night before, when the nerves started to set in that tomorrow I would lose my colon.¬† At this point my nerves set in and began to overwhelm my stomach.¬† I remember sitting on the toilet (as if I had anything left in me-which I did not) and my colon was spasming.¬† Colonic spasms are extremely painful¬†and are known to be brought on by internal stress.¬† Which, no doubt, I was having the night before the biggest surgery of my life.¬† So as I’m sitting on the toilet, not going, but in excruciating amounts of pain-my mom came in¬†the bathroom.¬† By this time I¬†was in tears and I remember her words to me like it was yesterday, “Jerica, after tomorrow you’ll never have¬†deal with¬†this much pain again.”¬† I took those words to heart, and replay them over and over in my head even today.¬† Weather it was the truth or not, it was¬†what I needed to hear in¬†that moment.¬† Also in that moment, Gibson¬†(my¬†little Morkie puppy) who is no doubt the light of my life…came strolling into the bathroom with his little blue blanket attached to his bum!¬† He could tell I was upset, and he too, knew I needed his little personality to make me laugh and temporarily forget about the pain.

The next morning I woke up, and tried my best to mentally prepare myself for what was to come.¬† There’s no words to describe the fear I felt.¬† There just is not.¬† I knew things¬†would change and I hoped for the better.¬† I knew I’d have challenges ahead of me and that life would be different going forward.¬† Very little people knew the details of the surgery I was going to undergo-and in the beginning I didn’t want anyone to know anything.¬† In a way, I looked at it like this, the people who needed to know did and everyone else could wait.

As I laid in the hospital bed, waiting for the stoma nurse to come in and draw¬†the spot where “the snail” would make it’s debut¬†I became very nervous.¬† I remember the¬†nurse asking me¬†where¬†I would like the stoma to be.¬† I had no idea that the spot I chose¬†would be there for nearly two years-but I¬†pointed and said how about here.¬† I mean did it really matter?¬† At the end of the day, a scar is a scar and it wouldn’t make a difference to me.¬† She could tell¬†I was nervous and said that sometimes people name their stoma’s-I immediately thought that was insanely weird but smiled and said, “Oh, really?”¬†¬†I think it’s odd that we name our¬†stoma’s…but I understand why people do.¬† I suppose that’s why I¬†gave mine the name “the snail”…it’s weird looking…it moves and is almost always slimy.¬† Thinking back to that awkward conversation with Denise (my stoma nurse), I’m sure¬†she was trying her best to make me feel¬†confident and comfortable with my decision.¬† Nonetheless, it¬†was a huge decision I was making and I don’t think anything or anyone could have made me feel at ease.

Even today, almost a year later as I’m writing this, the thoughts that come flooding back to me are those of fear and uncertainty.¬† I often cry when¬†I have to relive these memories-but I do this to help others.¬†¬†I think about what other’s want to read, what they need to hear, and what the world needs to know about me.¬† I have a unique case, and I have from the beginning.¬† I never intended to share my story with the world, and most certainly didn’t expect to write about my story for all of social media to read and experience.¬† I had no idea how long this road would be. ¬†And still today, I don’t know where the road leads.¬† It’s as if I’m walking without a map, without an end in sight.¬† Each step seems like a mile and I’m thirsty for answers.

We all endure pain…but in the end-it is how we handle that pain which builds our character…

I often feel as if I’m stuck in a body I no longer recognize.¬† It’s as if my insides are winning, and my body’s appearance on the outside now displays all¬†the¬†damage¬†from Ulcerative Colitis. ¬† Whoever said this was an invisible illness was wrong.¬† If you have Ulcerative Colitis and live with the pain on the inside and behind closed doors, eventually your outside appearance will reflect what your insides are yelling at you.¬† The pain will ultimately¬†wear you down so much, beating every last ounce of energy you had, until there isn’t any other options left but to choose the inevitable.¬† We all suffer in silence and deal with the embarrassment¬†and daily struggles of living every single day.¬† What happens when you realize you have nothing left and no other choice-you fight some more.

The weeks after getting out of the hospital I remember feeling the withdrawal of the pain medicine, and being extremely sick and fatigued-to say the least.¬† It was a hard transition, as I was still taking meds for not only the pain, but also for the C-diff I had acquired while in the hospital.¬† I was sent home with a bunch of medicines and also a limited amount of pain medicines, as Toxic¬†Megacolon (TM)¬†was also a worry for my doctors.¬† I remember being warned repeatedly, while in the hospital, that if I asked for too many pain medicines¬†that TM was a likely possibility.¬† Obviously, the pain far surpassed anything I could tolerate, and without much thought I continued to¬†take the pain medication. ¬†¬†I took Dilaudid in the hospital and Hydrocodone when I got home.¬† After being on the pain medicines for so long, my body became used to having those drugs, and I experienced what I would later realize was a withdrawal.¬† I¬†remember laying on the couch tossing and turning and feeling as if I was going to puke.¬† I did a few times, and it took days of feeling not well to feel¬†“better” again.¬† That feeling of unbearable pain¬†mixed with prednisone, and about half a dozen other medications didn’t help much during the withdrawal process.

I remember being at home and feeling absolutely miserable, everything was getting to me, and¬†unfortunately for my family-no one was safe.¬† Life wasn’t fun for several weeks, and continued¬†even beyond when I¬†began to deal with the trauma of losing my colon. ¬†It was an emotional roller coaster, to say the least. ¬†¬†I was lucky enough¬†to have had my family around during such a difficult time, and it was a hard process. ¬†A decision I had to make that wasn’t easy.¬† In my mind, I had exhausted all of my options.¬† I had tried the¬†holistic route, I tried the medical marijuana route, and I had tried every¬†drug imaginable.¬† After my¬†Remicade ordeal, I was no longer a¬†desirable candidate for Humira or Imuran nor was I brave enough to experiment with the drug Entyvio that was approved by the FDA in May 2014.¬† The road was¬†narrowing with less and less options¬†and¬†the only path left, or so it seemed, was the road that would lead to the removal of¬†the diseased colon from my body.

During my first meeting with my surgeon Dr. Ramamaoorthy (in mid August-2014), she explained everything and it all sounded relatively routine.¬† She explained the three step surgery to me in relatively simple terms.¬† Step one, go in cut out the diseased organ (colon)¬†and create the stoma.¬† Step two (three months later)¬†go in and create the “J Pouch” while rearranging my insides completely-in conjunction with tacking up my fallopian tubes out of the way (as to not create more scar tissue and keep them out of the way of the J Pouch).¬† Step three (3 months later)¬†the final surgery and “the takedown” of the stoma and the reconnection of¬†my stoma back on the inside.¬† It all sounded simple, straight forward, and as I mentioned earlier, routine.¬† However, I should have known I would be the extraordinary case that wouldn’t go as planned.¬† From the beginning of this entire diagnosis of Ulcerative Colitis I have been given a hard time-from the Doctor’s misdiagnosis, to the lack of proper medical treatment at Balboa Naval Hospital, to my stay at Pomerado Hospital¬†that, certainly did not¬†go as planned.¬† It took me awhile to understand the process and what would be happening to me.¬† In fact, I feel like I was in such a whirlwind of pain and anticipation that I couldn’t even recall what she said to me-lucky for me…my¬†family was right there to remind me.

I can’t¬†describe the pain well enough to help any of you who don’t have UC understand what it’s like.¬† All of my life, I’ve eaten whatever I wanted…without much consequence- be it weight or anything else…and now I could only eat bland food.¬† As everyone’s suggestions were taken under advisement-the message my body was giving me¬†was clear…there wasn’t anything I could eat and no magical recipe of foods that would make the pain stop.¬† Coffee, my love for coffee, was a distant memory¬†in the weeks leading up to my first surgery.¬† So on top of the physical pain, and¬†the continuous embarrassment, was the¬†daily emotional stress of figuring out what to eat and when to eat it.¬† If I had to leave the house (for a doctor’s appointment), I would refuse to eat anything several hours before and while I was out of the house for fear of an¬†accident.¬† At times I considered starving myself, hoping that would help my colon relax and feel better.¬† Emotionally, I was a wreck.¬† I¬†was angry, sad, fearful, hopeful—but angry.¬† The prednisone didn’t help my¬†anger (that’s for sure).¬† Everyone in the world can think they understand…but until you’re walking in the shoes of someone who has UC…you have no idea the pain we’re enduring.¬† Depression usually follows a diagnosis of UC (and I wasn’t the exception).¬† You realize that a part of your life is over; the part where you can eat and not worry-have a drink and not worry…or do anything and not worry.¬† Car rides became scary,¬†and even trips to Target became scary (as it’s a huge and overwhelming store).¬† Anywhere¬†I went, where I didn’t know if there would be a public restroom close by¬†would send me into an anxiety filled panic.¬† There’s a saying, “You know you have UC when you choose where to shop and eat based on their public restrooms.”¬† This was how I lived my life for¬†8 months¬†before I realized, this wasn’t the kind of life I wanted to live.