Finding My Breath 🧘🏼‍♀️

Posted on by JER

It can be extremely hard and overwhelming to talk about my story. I never wanted to be inauthentic with the reality of my situation, but it’s a fine line between the truth and complaining. People who are sick hate to complain about it. We don’t enjoy feeling like the burden, nor do we enjoy defending our illness and limitations. Explaining to someone new in your life all that IBD encompasses can be extremely challenging. The question for me is how do I tell people without scaring them into thinking at any moment I could just die. It’s the reality and challenge I feel constantly. How do I let them know how significantly this has impacted my life without making them feel some kind of way or pity?

As of lately, finding my breath through all the anxiety and daily stress has been challenging at times. I started a yoga journey back in January. Per my therapist’s suggestion, it wasn’t to “get fit” or to “get in shape” but to bring a calming effect to my life. As some may know, or may not, I was 70 pounds when I got out of the hospital in July of 2018. I had no muscle tone and was using a walker to get around my house. Although it was devastating in its own way, I knew (because I had been there before) that time heals everything-and it would only be a matter of time before I regained the weight I had lost. As the months passed, from July to January, I was eating everything and anything in an attempt to gain back the weight. It took time, but by January I felt as though I could do some slight exercise. I wasn’t ready to run sprints, as during my last hospitalization I had a tear in my ACL. The tear was due to the hyperextension of my left leg while on the paralytics. While my body was at rest and I was on ECMO, I had very heavy medical boots placed on my feet to keep me from getting “drop foot”…all the while creating extreme pain and additional issues in my left knee when I was taken off of the medical sedation. I worked with physical therapy both in the hospital and when I got home and like everything else in my life, it was just going to take time to heal.

Several people had suggested Yoga as a way to release stress. Currently I’m going through personal life changes and challenges which prompted me to try Yoga at all. When I had the bag, Yoga was never an option. Due to the placement of the bag and the constant skin irritation I endured, bending in poses would have only prompted a leak. So, when people were suggesting Yoga I thought, if nothing else I’m going to try it because it’s something I could have never done with the bag. So, I walked into the local Yoga studio and signed up-with the strict intention of relaxation.

After my first hot yoga class, I fell in love with the feeling. My lungs, which had been severely compromised felt better after being in the heat for 60 minutes-I was impressed. The motions were slow, and the modifications were helpful and I felt like I was sweating out all the toxins from my body. I felt cleansed after each hot yoga session. The best part was I didn’t have to talk, I could go in and do yoga and not think about anything but the pose I was being instructed to do. For weeks I would go to hot Yoga, it was my escape from so many things that were transpiring in my life. I was learning to breathe through the discomfort and I was able to reflect on what I was grateful for. After every Yoga practice there is a moment where we’re asked to reflect on what we are grateful for, in my head I am always grateful for being alive and present.

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4/25/18-6/28/18 From the Beginning to my Near End

Posted on by JER

I’ve been told I’m easily one of the biggest miracles the ICU nurses of UCSD has ever seen. I had doctors come in my room often in awe of how well I was doing and how far I had come. They told my husband it was likely I’d be in ICU for months and be on oxygen (possibly) for the rest of my life-that was if I made it out of there at all. Let me back up to the reason I initially went into the hospital.

I went in on April 25, 2018 to have the reversal surgery of my ileostomy. I prepared myself the best I could for this surgery-both mentally and physically. I had gone through EMDR therapy for PTSD and was doing my best to wrap my head around what was to come. Little did I know, I had no idea what was coming. Having a lung collapse and having (3) lung surgeries in addition to an intestinal reconfiguration was not what I had ever envisioned myself going through. Several days after the takedown of my ileostomy I began to get very sick and was vomiting almost uncontrollably. My doctors thought that I should have a dilation, which could help reduce stricturing-and could be the culperate for why things weren’t flowing as freely as they could have been-causing a backup in my stomach-hence the vomiting. I remember very little details of what happened next.

During the dilation procedure I aspirated under anesthesia and the acid had gotten into my lungs. I had gone through this same dilation procedure several times over the last 2-3 years without any major complications.  It just so happened that this last one, would almost cost me my life. My body reacts unlike anyone’s and tends to overreact- and that it did. I remember looking at my Doctor, post procedure, and asking her if I was going to die-she told me no, but I saw the worry and tears in her eyes as she explained what had just transpired under anesthesia. I held onto that “no” and eventually slipped into a state of disarray.  All I remember was a woman named Donna who held my hand as I nearly slipped away and she said “I’m going to stay with you, my name is Donna and I’m not going to leave you.” It was her words of comfort in a moment of panic when all of a sudden I had more than 20 doctors and nurses piling in front of my face-and in that moment I knew I was in trouble.  I slipped away and woke up in June-just a few days before my 32nd Birthday.

I don’t remember a lot, but what I do remember isn’t great and some of it isn’t even what actually happened. I had strong hallucinations from the harsh drugs that put me into a paralytic state. My body had been at rest, unbeknownst to me, for more than a month and I woke up unable to speak and barely able to move. I had a tracheotomy, which left me with a temporary trach-and I thank God everyday it was only temporary.  I didn’t realize how much I liked to talk until I couldn’t. Having the tracheotomy was a humbling experience and I gained a new outlook on how lucky I am to be able to speak. I felt like the little mermaid when she lost her voice. I had to spell out words in sign language using the little bit of the alphabet I could remember with nurses and when that failed I had a piece of paper with the alphabet pre-written out and I had to spell out what I needed or wanted from the nurses. Admittedly, this was challenging at times given how much the brain relies on autocorrect when we spell nowadays!

The day they put the purple speaking valve on the trach, I remember saying “hello” and being overjoyed just to speak. For the first time the nurses, who had learned to read my lips, heard my voice and they were all overjoyed with my progress. I remember asking the nurses not to tell my husband because I wanted to surprise him that night-I’ll never forget the look on his face when I said “hey, Babe.”

The nurses would continue to filter in (even if they weren’t my own that day-just to say hello and I continued surprising them with my ability to converse with them). Some of these nurses had never heard my voice but had come to know me so well and when I spoke their faces lit up. I was told, that in the ICU, there’s a lot of death and sadness looming in the halls-so when a miracle happens it’s what brings back hope and joy to their profession.

When I awoke, I learned a lot about what had transpired over the last month.  I had, in addition to being put on paralytics, been utilizing an ECMO machine.  All I understood at the time was that my lungs weren’t well enough to provide me with oxygen.  Therefore, I was put on ECMO in order to give my lungs a break so they could heal.  I was given very little details while in the hospital, none of which made sense at the time.  All I could focus on was my inability to communicate-which now makes perfect sense.  I have a degree in communications.  Communicating is essential to me, and all I knew was that I needed to be able to advocate for myself.  So for several weeks, it was the goal to size down the trach so that eventually I could regain my voice.  I write, even now, as communicating my story is important to me.  I feel extremely greatful for the opportunity to be able to share my story so that others don’t feel so alone.  Having IBD isn’t easy, and because having IBD is an autoimmne disease, sometimes that alone takes on a life of it’s own causing separate complications within the body.

Never in my life would I have guessed I’d need to use sign language as a way to advocate for myself. I commend the nurses for their patience with me, not only did I have to spell out words but they had to remember and put together the letters I was desperately trying to remember how to sign.

My progress was “slow and steady” a nurse would write in “my ICU stay book”. This book was one of the best things I had to help me understand what I had been through. This book, was essentially a written diary the nurses kept on me-letting me know about my progress. It was amazing to read all the positive vibes from my nurses. I’ve said it before, nurses are special people, but mine were exceptional. I became the talk of ICU quickly and when I awoke I had many nurses and doctors telling me how lucky I was to be alive. With the positive vibes came a few negative. One night, after a few weeks in ICU, I had a trach nurse (I’ll never forget) come onto the night shift and her bedside manner was less than helpful in my already confused head. She said, “I was happy to see you made it, I thought you were a goner.” She was not young, she was likely a mother herself…but to be told in such a blunt manner was extremely hard and I called her out on it several minutes later. I explained to her (through tears of frustration), that I’m sure she wasn’t trying to be harsh but it came across that way. She apologized profusely and I truly hope the next tracheotomy patient she assists will benefit from my discomfort with that nurse-as letting her know what not to say to a patient was a critical lesson that night.

While I only had a handful of Doctors and nurses who didn’t understand me, I had so many that did. When I awoke I was told repeatedly “it was good to see my eyes and to see me awake”-I was treated like a miracle on the ICU floor, because I was. To see the pure joy on their faces regarding my recovery was rewarding-but I feel I have a lot to live up to now.

I had a PT girl who’s spirit I will never forget-her name was Amy. She pushed me hard everyday-she would bust into my room ready to get me moving with so much energy and I couldn’t help but like her! During my last session with her, I remember going outside to the 4th floor terrace …with my unwashed hair and feeling defeated-she had me “doing squats”. I’m using quotes there because it was really me just standing and falling (without cushion to my bum I might add) onto my butt which landed on the hard cement seating that was built into the terrace. I cried that day, and she hugged me and said I know you’re going to get there and walk again and before you know it you’ll be running. I sometimes hear her cheerful voice inside my head, and I hope she realizes what a vital role she played in my recovery and will continue to be the cheerleader that many patients so desperately need.

Writing is hard, walking is hard, being sick is hard-but knowing I had a team of cheerleaders made it worth it. Many people don’t know, but I so badly wanted to sign a DNR prior to this last hospital admission. I never wanted to have to fight so hard for my life again, but I did-which can only be a true testament to my character. I am a fighter, I’m an IBD warrior, I’m a wife, I’m a mom to fur pups, I’m a daughter, granddaughter, a sister, and a friend to many. I’m all of these things still because of something I didn’t sign. I let the fighter in me lead, and knew in the end-when the end is-isn’t up to me. It’s only my job to keep fighting, and spread awareness of all that I’ve learned from this illness.

There’s a lot to my story, and I continue to learn about things that I didn’t even know happened. I have always said some scars tell a story, but mine tell a novel. I’ve never been ashamed of my scars, I’m actually really proud of them. It’s so much a part of my own history.  I have to say going into surgery on the 25th of April I was prepared for my ileostomy scar. I had seen many pictures from other brave jpouchers-but the scar that has left an even bigger impression on me is the Trach scar on my neck. I look at it everyday, multiple times a day-and remember the struggle. Initially, I wanted to hide having the trach, from anyone that I could. The first person to see me with it (outside of the hospital setting of course) was my little brother-I’m convinced I scared the shit out of him. His big sister was weak and broken-and without a doubt for nearly all of his life I’ve wanted to maintain the facade of being secure and strong, and it’s only now that I realize by me showing him myself at my most vulnerable time was indeed showing him my strength as an IBD warrior and as his big sister. He has seen me at my worst, and knows now (I hope) there’s always a light at the end of a tunnel if you just keep going…

I had several blood transfusions as a result of my lung bleeding which eventually led them to removing a piece of my lung. I’ve said it before, if ever you can donate anything and you’re healthy enough to do it–it’s one of the most selfless acts. People, like myself, rely on blood, platelets, and even stool. Yup-that’s right, even stool. I have needed platelets, blood and I have underwent a fecal transplant over the course of dealing with IBD. I’m thankful everyday that there are selfless people in this world who donate all sorts of things that assist people like me.

At this point, I’ve had more surgeries than I can recall and I can count the number of scars on two hands.  When people ask me how I am my response will always be “even my worst day is a better day without the bag”–and that response will never change.  Having the bag weighed me down in a way most people will never understand.  The skin irritation and constant worry of springing a leak was a four year long distraction from everything I ever did.

I have tried to be transparent through the diagnosis of ulcerative colitis, having my ileostomy and through the horrific ordeal of bringing me back to a state of normal. It’s sometimes hard and overwhelming to talk about-but I never wanted anyone to guess what’s wrong-which is why I put myself out there and do my best to explain. I want to be the example of strong to anyone who needs some inspiration and the friend to anyone who needs guidance.

I continue to push through and celebrate the little milestones as they come. I appreciate the normalities of a day and know the struggles I’ve overcome are extraordinary. I try not to take myself too seriously and understand how lucky I am to have survived. Mentally it’s a struggle at times, but I continue to work through them in therapy each week and learning this new normal will only make me stronger. They say God doesn’t give you more than you can handle.

“Some things just happen and we don’t get to know why…”

Taking it One Bag at a Time

Posted on by JER

The hardest thing in the world is to learn to accept that you can’t change or control what happens to you.  Today, I’ve gained some good news–and although it’s not something I’m totally comfortable sharing with everyone today, I hope to eventually be able to share all that I’ve learned through the process of being sick.  I’ve learned that I have to be my best advocate for myself.  If I don’t think something is ok, I say so-especially when it comes to my medical care.  If I think I should have an IV in my arm versus my hand-I will say so.  Where as, in the beginning, I was more timid and unable to voice my thoughts for fear I wasn’t right. When it comes to your body and your life-whatever you think is best for you -is.  It took me many surgeries and years to come to this conclusion.

The Stress of living with this illness can be almost unbearable at times-I’ve said this before…I have to concentrate to concentrate.  It’s hard, this disease is one of the worst situations I’ve ever had to deal with.  There are days when I feel like I can do this, and then there are days when I know I can’t do it.

Lately, I’m struggling to keep weight on.  (I know, I know…poor me.)  But it’s not fun to have your clothes hang off of you–espeically when you like the clothes you own.  I’ve never known the struggle of being “thin” until I got sick.  Then I learned quickly, the grass isn’t always greener on the other side.  Even the smallest ostomy belt doesn’t fit because it’s pulled as tight as it will go-but it’s still not tight enough.  The struggle is real, and my real point is–the struggle is real for everyone.  Everyone has something, or many things they don’t like about themselves.  I’ve become extremely insecure with my body since gaining a bag.  I know most ostomates are proud and wear their bag as a symbolic badge for courage–and I commend every one of you who see it as a strength.  I unfortunately, see it as my weakness.  I’m not comfortable with it and it constantly feels foreign to me.  I’m not writing this as a “poor me” blog-but I’m writing this for everyone else who also hates their bag today.  It’s ok to hate it, and it’s ok to love it–and it’s even ok to have a love/hate relationship with it.  The bag saved us, but it also replaces a piece of us that could no longer manage to survivie in our bodies.  In a way, every day I mourn the loss of my colon and the representation of what it meant for me to have it.  Normalcy.  Having a colon is “normal”-so it would only make sense that having that creates a sense of normalcy.  On the flip side, I feel this is also why so many of us are desperate to pop any drug into our mouths that may even offer a slight chance of hope for normalcy.  The hardest thing is rembering and reminding oursleves everyday that we are a version of normal–our normal-but it’s taken me years to convince myself of this and I’m still working on it.

Along the way, through anal manometry testing, dilations, pokes and probes I’ve learned that no matter what curve ball life throws-I can do it.  I’ve had procedures that would make you squeemish at the thought, and I’ve been so close to death’s door that almost anything else seems trivial.  Yet somhow, I push through.  Sometimes it’s hour by hour and sometimes it’s day by day-but I keep pushing through.  I’m setting goals and achieving them, and I’m remembering the important things about life once again. Taking it one bag at a time, we get by with a little help from our ostomies.

🇺🇸We Need Your Support💜

Posted on by JER


Let’s cut to the chase, no one likes to read something long and drawn out (or so my husband tells me 😊).  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. 💜🇺🇸💜🇺🇸💜🇺🇸💜

 

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

Take a step with me…💜

Posted on by JER

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 💜….thank you for your donations!!! 

Follow the link below and donate! ⤵️

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

A Hair Milestone 💁🏻💇🏻

Posted on by JER

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.

🌎👁🐝D

Posted on by JER

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.

Posted on by JER

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…

Posted on by JER

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 façade 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.