Figuratively…and well, literally.
I know, I know…It’s bananas.
Sometimes it hits the fan and it can get pretty deep…
Some days we just feel like it and some days we gotta get it together.
Everyone deals with it…Some more so than others.
Today I introduce a friend of a friend who is now my friend, Kimberly Dykes–a girl I liked the minute I met her a few years back. A resilient, strong, beautiful person who was dealt a pretty sh*tty hand healthwise but chose to face it head on.
She’s gonna let you borrow her shoes for a bit to take a little walk in them. Whether you make it the full mile before giving them back, I’m not quite sure. You might just find yourself up sh*t creek.
I have to admit – when Claire asked me to write this guest-blog, I was a bit nervous and apprehensive. I say this because in the back of my mind I knew which topic I would most likely choose to share. A very personal struggle I’ve had to face. A huge part of my daily existence. A battle I did not choose, but was forced to fight. A (sh*tty) diagnosis for which there is no cure: Ulcerative Colitis.
What the heck is that, you may ask?
Well, Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis), as defined by The Mayo Clinic, is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. It affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly. Ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications. While it has no known cure, treatment can greatly reduce signs and symptoms of the disease and even bring about long-term remission.
By the way…This debilitating diagnosis came at age 30. Awesome, right?
There I was, a young single woman, who just started a new job at a local hospital (the job I really wanted when I was fresh out of school, but I had to take another job in a mental health facility – that’s another story for another time for sure). Anywho, 4 months into my ideal job role, I began to notice that something was not quite right with me. And when I say “not quite right” that is me understating the red flag that was waving.
I’d like to think that I have a relatively high tolerance for pain and discomfort, but lemme just tell you, the pain I was feeling was something I had never experienced before. I could not eat or even drink water–Whatever I took in, quickly came back up by way of violent vomiting and subsequent dry heaving. This was a daily occurance for a few weeks and I couldn’t take it any longer. My sweet parents loaded me up and drove 90 miles to the nearest hospital, with me in the passenger seat, sick as a dog.
Once we arrived at said hospital, I was immediately admitted. They ran test after test…attempting to figure out what the heck was going on to no avail. Days went by (actually weeks), and the doctors were puzzled – no idea what was causing me to vomit. Nothing they were doing was helping and there is nothing more frustrating then feeling excrutiating pain with no diagnosis.
I felt helpless and hopeless.
After weeks passed with no definitive answer, the gastroenterologist asked me if I would be interested in transferring to Ochsner (another local hospital) for their team of specialists to evaluate me. I think I shouted YES!, before he even finished asking the question!
I needed answers.
I took my first ride in an ambulance that night, and it was quite the experience. I got to Ochsner around midnight, and they had not received my discharge information, so I was unable to get ANY medications initially. AND, to top it off, I had a roommate in the hospital room! A lady within arms reach who liked to blare the television to the highest setting and then fall asleep. Real comforting when you are throwing your guts up…lemme tell ya! Not to mention, I was NPO (nothing by mouth) and had to sit there smelling her fried chicken while she complained about the food she was getting to eat!
More tests determined the only thing this ‘hell’ I was living could be was a little something called Ulcerative Colitis. I was initially excited that they finally figured out was wrong with me – a specific diagnosis meant a specific treatment plan, right? This meant they would eventually be able to find a cure for it…
The doctors told me the treatment plan basically just involved a slew of medications. And the (potential) cure for this disease you ask?
Removal of my colon. YES, removal.
Are you kidding me?! There was no way I was ready for all that. Anytime someone mentioned it, I immediately burst into tears and was unable to even speak.
As soon as I was stable and had the ability to eat/drink again, I was discharged home with a satchel of medications I would have to take daily. I would also have to endure multiple infusions at the cancer center every eight weeks to aid in my recovery.
For the next year and a half, I was doing really well. But then, all of a sudden, my symptoms came back – with a vengeance. I’m talking severe diarrhea, stomach cramps, and the vomiting all over again.
With each of the four hospital visits from January-April, the GI doctor kept asking if I was ready for surgery yet. Each of those times, I adamantly replied, “No, I am not”.
On the 5th visit, I was beyond tired of the excruciating pain. It was not going away and I couldn’t take it anymore. When he asked me that time, no tears came.
I was ready to have my colon removed.
I was no longer feeling afraid of that moment. After all, any potential for relief would be welcomed at this point.
I was ready to have a life again.
The next day, I was transferred back to Ochsner. Once I arrived, I continued getting fluids and medications through a PICC line, along with TPN since I was unable to eat. Because I had been sick for so long, they were trying to get me as healthy as possible, so that I would be strong enough to handle the major surgery my body would endure and the recovery process that followed.
Oh, and did I mention that this surgery was going to take my ENTIRE colon and leave me with a temporary ileostomy bag? Because, yea, that’s what I was up against.
I was a bundle of nerves… the fear of the unknown was super real as I dealt with the uncertainty of what my life would be like after this procedure.
I wheeled into surgery, and six hours later I was in the recovery room, colon-less and in extreme pain.
I felt as though I was dying – literally.
And they only prescribed me oral pain medications. . . After they just sliced me up like a thanksgiving turkey! All during that night, I was writhing in pain.
It took another day or two to get relatively comfortable. Once my pain was tolerable, I had to will myself out of the bed to walk. I had to take all medications by mouth, and the kicker – I had to care for my ileostomy MYSELF. The first time I looked at my stoma (which I named Ilene), it was just this strange out-of-body feeling. It felt like my stomach belonged to someone else– Just an overall weird feeling. Not to mention, there was actual poop coming out of the side of my belly.
Single and 32 with an ileostomy bag, I was discharged home with my parents to begin the recovery process–Which was quite the struggle, to say the least: Gas pains, difficulty getting up and down, I basically needed assistance with everything. Adulting was damn near impossible–I felt like a middle-aged toddler.
After a few weeks, I was finally able to get back to work and back to “normal” life. I say “normal” but, let’s be honest – life carrying your poop around with you is far from normal.
I tried to maintain a sense of positivity as much as I possibly could throughout the whole ordeal which was far from easy.
Dating was a challenge (I mean it’s already awkward when you are healthy!) It was hard and often disheartening to have to meet a new fella, then somehow try to explain what I had been through.
Somehow (by the grace of god and some really awesome peeps) I made it through the year and I was able to schedule my take down/reversal surgery (another step in the process).
Words cannot describe how excited I was, going into this surgery! I had the biggest smile plastered on my face!
This was supposed to be the second of three surgeries I would have to endure. However, once they got in there, they discovered that I had too much scar tissue to perform the surgery laparoscopically. The surgeon also figured out that there would not be enough room to form the J pouch and leave me with the temporary loop ileostomy, so he decided to go ahead with the total take down and J pouch formation. (They initially wanted me to have the loop ileostomy for about six months, in order to allow the J pouch time to heal before actually being put to use.)
Because they were unable to do the surgery laparoscopically, I had an incision from my belly button clear down to my nether region. Yikes!! However, my pain was much more tolerable this go round, since they were kind enough to give me a PCA pump. Every fifteen minutes, I could give myself a little dose of pain medication, which really helped keep the pain at bay and also allowed me to get up and move around a lot better.
About four days after surgery, they were just about ready to discharge me home, when I began vomiting this nasty thick green stuff – again with the violent vomiting; it felt like I was throwing up my toenails. I vomited so much that I popped some internal stitching that caused my incision to begin to become infected.
So, what do they do?
They OPEN MY INICISION – AT THE BEDSIDE.
I was beyond terrified at this point. Like hello, don’t you need to take me down to surgery or something to do this??
Nope! At the bedside.
Thankfully I was still somewhat numb, so I couldn’t really feel or see what was going on. But when my parents came back into the room and burst into tears at the sight of my belly, I realized that this was super serious. I asked my mom to take a picture, so I could see it when I was ready. When I finally mustered up the courage to look, I almost threw up again at the mere sight of it. I will save you all the trauma of a picture, but let’s just say it resembled raw hamburger meat. Barf. They applied a wet-to-dry dressing while I waited to be fitted for the wound vac.
I was still violently vomiting throughout the traumatic experience of being ripped open at the bedside. My surgeon came in and told me that because he was unable to get the vomiting to stop with the nausea medications, he planned to insert a nasogastric (NG) tube into my nose, which would go to my stomach to basically suck out all of the stuff that was building up in my stomach. He said that my bowels (or what was left of them) were slow to wake up and were taking their time digesting everything – causing a backup.
So yea, now I had a tube DOWN MY NOSE!!
I instantly began to cry and freak out. One nurse tried to get it – no dice. They would get it just past the opening, and then it would not go any further. OUCH!! Another nurse tried to get the other nostril; she got it past the opening, but it came out through my mouth, and also cause the most intense nosebleed I have ever seen in my life. I was passing blood clots out of my nose – Gross.
So finally, one of the GI residents came into my room and said, let’s try this again, also stating that if it came out my mouth again, she was going to reach her hand in there and guide it down my throat. Again, yikes! So there we were, trying for the third time and she got it!! But once it reached by stomach area, I began vomiting EVERYWHERE – Exorcist style.
They were finally able to clean me up and get me calmed down enough to rest. I ended up having the NG tube for about one week, and let me just tell you – it was the most uncomfortable thing ever!! My nose hurt, my throat was so dry, and I tried to stay as still as possible since any small movement irritated my entire nose, mouth, and face area.
Meanwhile, the wound care nurses came in to fit me for the wound vac, which would speed the healing process for my wound. Again, another uncomfortable experience. But hey, that thing had my wound healing and closing up in no time! So after 19 days in the hospital, I was going home – FINALLY!!
Home-health nurses came to assist me with changing out my dressings and making sure everything was going ok. However, after about 4-5 days, I began to feel nauseated, again with the vomiting. I swear, throughout this whole process, I have thrown up enough for a lifetime!!
Since I was unable to get the vomiting under control YET AGAIN, back down to Ochsner we went – where I was admitted. After another 11 days, I was finally stable and ready to go back home.
After ten long weeks, I was able to return home and back to work!!
It has been eight months since my last surgery, and I am happy to report that I am back to some semblance of a normal life. I am able to eat what I want (for the most part – certain foods affect me, but I still choose to eat them sometimes). I am sleeping better (still having to get up a few times at night), and most importantly, I able to use the potty again (probably TMI, but hey, that’s how I roll).
Although I still have to deal with my stomach often singing the song of its’ people (sometimes at the most inopportune times), I would not change one thing about my life. Although my journey has been considerably bumpy and trying, I wouldn’t trade it for anything. Even now, this far out from my surgery and recovery process, I still deal with symptoms with which I would prefer not to be bothered. But through all of my obstacles, I KNOW that my God has a plan for me! And I am starting, little by little, to make better and more positive choices to live this life that He has gifted me.
I am and will forever be grateful to my surgeon (Dr. David Vargas – seriously, an angel on earth), the nursing staff, the housekeeping staff, even the kitchen staff at Ochsner– although they weren’t really bringing me anything good to eat.
Clear liquids are for the birds.
And also to my parents – ugh where do I begin?!?! I NEVER would have made it through this entire ordeal without them!! And I also want to thank my sissy, brother-in-law, nieces, friends, and coworkers/work family for checking on me and holding it down!
I hope that this wasn’t a boring read, with too many gory details about my digestive system. But hopefully, above all else, this will bring about some awareness for Irritable Bowel Diseases and also help to decrease/erase the stigma associated with these diseases. I have found that people (myself included, prior to this experience) just do not know about digestive diseases and are often afraid of things they do not understand. There are so many people suffering with various gastric diseases and due to the embarrassing nature of it all, they suffer in silence.
Hopefully, my story helps someone. There is no cure, but there is hope.
My body tried to kill me. But, I survived.
I know what it’s like to see your reflection in the mirror and feel unattractive. I used to be disgusted at the very thing that restored my health. But then I realized –
“Anything that has the power to save a life can be nothing but beautiful.”
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