Tubie Adventures!

As I've been adjusting to my feeding tube & nifty pump that I have to keep on me for 20 hours a day, 7 days a week, I've experienced a plethora of issues with my tube. I talked to several "tube" experts about the rainbow of colors that leaked out of my tube daily but they thought it was normal. So, I thought it was normal. 

Last night I went to a fellow IBDer's wedding. It was beautiful, elegant & simple. On the way home the pain around my tube kept growing and growing. By the time I got home, I took off the gauze around my tube only to discover yellow and green pus leaking out of my tube as well as a ulcer in the stoma. After 6 hours in the ER, I left with a script for antibiotics for my nasty tube infection and got home at around 3:30 this morning. My tube still hurts(duh)but I'm hoping antibiotics will clear up the source of my pain!

My First Flex Sig

Early this morning around 6 I was woken up for bloodwork, vitals and my nurse with a clipboard in her hand asking my mom to sign the release form for my flex sigmoidoscopy. 

Not too long after I was woken up again by transport. I sleepily walked to the wheel chair when my pawpaw came in to walk down with me(my mom had to go to work). They took me to the waiting area where I tried to sleep some more before the procedure. Then they rolled my bed to the GI lab where I met my nurse for the procedure. She was very kind and knew I was exhausted from the night before so she let me keep my pink fuzzy blanket I bring to every hospital visit , turned off the light and let me slide down my pants and stay in my Tshirt since I was already comfortable. She even put the blood pressure cup on my leg. My new GI walked in and asked how I was feeling. I told him I was having a lot of lower right pain and was tired from the steroid induced insomnia, night terrors and constant bathroom use. He patted my leg and told me he'd get me comfortable. Then before I knew it I was out like a light.

I don't know too many details because I was in recovery but from my understanding he didn't get to see everything he wanted to see with the flex sigmoidoscopy because I had some stool in me(shocker) but that the little he did see didn't look too bad but not too good either. It had a few patches but he could definitely tell that the mucosa has been damaged but it seems to be slowly healing with the IV steroids. He started me on Entocort again(a steroid made just for the GI tract and has less side effects than prednisone) and some other medications. He's tapering the prednisone also. He left today to ge out of town but he'll be back by Monday and tell us more of what he saw & what the long term treatment plan would be. He told my pawpaw that he gave me a lot of drugs during recovery so I could sleep all day and catch up on some rest which is very sweet of him. Today I've been in and out sleeping but that's a good thing because my bottom is still sore from the procedure and using the bathroom. 

He warned us that the on call GI this weekend isn't pleasant but to just ignore him lol. I am so glad to have a nice GI.

Today my IV started leaking but the nurse thought it was fine because it had blood return even though the IV antibiotics were leaking everywhere. When I woke up from one of my naps my arm was drenched so I called the nurse and she said "Well I guess it is bad." It took 3 people and 6 sticks to finally get an IV. If this one goes out our nurse said I need a PICC but we're thinking a port may be better. Hopefully soon we can get a port consult because I'm tired of being poked and prodded.

I think I'm going to start some more school work later before I get my vitals and evening meds. I'll update more later but hopefully the next time we found out more news it will be Tuesday and I'll be discharged :)

Medical Update

Sorry y'all. I've been busy, and sick from being busy and tired from being sick. 

I've updated twitter & the Queen of Crohn's page briefly on what's going on but this is my platform for where I can go in detail without feeling judged, or like a burden or anything that makes me feel like less than my healthier counterparts.

Well Friday I had an appointment with my new(and I use that term loosely) local adult GI. I saw him once before when I was losing weight like it was going out of fashion and dying seeking a DX but he wasn't of any help to me in that area so I had no choice but to move to another doctor that could help me. 

He met me with a genuine handshake and an exclamation of "Wow you're all grown up now." He flipped through my chart and we told him about my journey to getting a DX in 2010-2011 and his eyes kept getting bigger and bigger with each turn of the page on my chart. He asked me how long I have been on prednisone and I told him I just got back on it when I was in the hospital. "No. I mean like period. How long have you been on it since your first dose?" I felt kind of ashamed when I told him since 8th grade. 

His eyes got really wide then. He tucked his head in between his legs and rubbed his fingers through his hair and went off on his entertaining tangent that began with "Geez Louise how are you still active?! There's only 3 medicines on the entire planet used to control this disease. You had a reaction to Remicade. Humira never did it's job. And after two years on Cimzia your still flaring. I know you've had more than enough radiation so I'll spare you but I want to scope you." I nodded my head in agreement but couldn't resist asking "Can I please get off prednisone?" He said "Well yeah I bet you are ready to get off of prednisone! Me too! But it sounds like your still active so, for now, no. If the scope shows you have active inflammation then we're adding Imuran but if your disease is not active and it's just thickening then we need to talk surgery. You've been dealing with this for a long time now." Then he turned to my mom and said he promised not to do surgery unless it's absolutely necessary but sometimes you have to. 

Not excited about all that. Ughh. Every GI I see keeps saying the word surgery and Imuran and both those words scare me. I just don't want an ostomy, even if it's temporary. I don't want to even think about a permanent ostomy. Or the sewing up of my butt. Like that will just make me feel inadequate as a woman. I'm way too young for this nonsense. You always hear 30 something's with Crohn's Disease say they are too young for this DX but ohhh noooo sir. I as well as the thousands of others under 18 are too young for this. 

Ok enough tears. So that's the plan. I'm getting a colonoscopy after Spring Break. Pray for my mental health as well as physical until then. 

Fortune Cookie

When we were 13 we had to write a letter to our future self that we would open before graduation and I'm really not looking forward to opening it. We wrote the letter a month after I got my gallbladder taken out; the surgery that changed my whole life and ruined my health. God, I was so naive but also slightly skeptical. At that point I started questioning doctors. Part of me genuinely thought and believed the doctors who told me I was crazy and the pain would go away if I just "think it away." but the other part of me took it upon myself to look into if it was "normal" for a 13 year old girl to cry herself to sleep every night in pain. Unable to get out of bed some days because my legs simply did not work. I have mentally blocked out some parts of my 8th grade year. It comes in flashbacks in my dreams though. Especially on Prednisone. I wake up screaming because it's so real. It's like I can see myself holding a razor in the bath tub contemplating taking my own life. It quite frankly scares the hell out of me that I experienced all of that at 13.

I vaguely remember asking myself if I accomplished any goals, if I dated that cute boy I had a crush on in home room, if I got my black belt and if I was happy. I'll get to take great pride in answering yes to some of the questions but for the others I won't and knowing that really pains me. I know it's of no fault of my own but I imagined high school to be so different in 8th grade. I imagined going to wild party's, kissing really cute boys, becoming a certified Taekwondo instructor, sneaking out and so much more but now all I do is sit in bed like now thinking of the could've would've and should've's, going to doctors appointments, taking medicine every day of my life, and losing friends left and right. So I just want to take time to write to my 8th grade self. 

Dear beautiful Elizabeth, 

I'm not God or a doctor but I have a lot of answers to the questions you've been asking yourself & some advice from the older you, the 17 year old you.

This probably isn't what you wanted to hear first off. I'm sure you want your bazillion other questions answered first but I must tell you that you were right. How is this bad you ask? You were right that the doctors are wrong. You are seriously ill. Physically. Not mentally. Although, you're mental health could need some uplifting. You have this thing called Crohn's Disease with related arthritis as well as Endometriosis and a host of other medical problems. Unfortunately you will have to endure literal hell for a few years because stupid doctors don't believe you but just grin and bear it and play their stupid games. Dr. Scroggie. Remember him. You'll meet him in a few months & although he'll mis DX you at first, he's a great guy. He'll fix you up for a few months and you'll completely forget you were ever sick. But after 4 months of a semi "remission(where symptoms are gone)" you'll be sick again. You'll finally cave and go back to seeing him your sophomore year of high school. Be nice to him. He's on your side. I know he sounds like a smarty pants but it's not personal. But all the other doctors? Dismiss them. They literally do not care if you live or die. Don't give them the benefit of the doubt. Let them earn your respect. Anyways, Crohn's Disease. It is a inflammatory bowel disease. You have inflammation in your digestive system as well as ulcers. A precursor to Crohn's can be extreme joint pain known as Crohn's arthritis. That's why your joints feel like they are being wripped from your limbs. There's no cure for it. Endometriosis? Well you know what that is because mom had it. Good news though? Crohn's can go into remission. You haven't been in remission yet but we're working on it. I won't waste time talking about the treatments. It's nothing compared to what you've already been through. Oh, and put the razor down. Don't hurt yourself anymore than you already are. I know that no one understands and you're only 13 but that won't solve anything. I know you're smart and won't act on it but still. Just don't do that baby girl. You have to be strong.

Now to the good stuff: You aren't fat. I know that's one of your primary questions. Curvy & puffy from steroids(will come to that later) but not fat. I know you said in the letter to me that "You are beautiful even if you're overweight." Well I'm actually not lying to you. When you wrote that later you were over weight and I know you really hated yourself for it but I'm not lying to you. You ARE, presently, in shape, beautiful, funny, smart and quite frankly lovely. So, take a sigh of relief. 

You quit Taekwondo. I don't know how else to tell you but yeah. You're too sick to do it anymore. You will miss it every day of your life. You WILL get your black belt though before quitting. I hope that makes you happy :)

You did not date that cute boy. You actually haven't dated anyone at all. But the cute boy you liked? Well y'all are too much alike for your own good. A lot of drama will take place between you two and you both have too much pride to apologize but do me a favor and please apologize. That's my biggest regret of high school. Y'all will become friends again eventually but y'all have lost precious time as friends. 

I just want to give you a list of positive people that will heavily influence your life so be on the look out for these angels in disguise:

• Kassady

• Meredith

• Madison

• Brylee

• Mrs. Anderson

• Mrs. Stanford

• Mrs. Beason

• Dr. King

• Dr. Scroggie

All of these people will help you tremendously when it comes to getting through tough times. Some more so than others. Some will leave your life but that's only because God knows you no longer need them. Kassady, Meredith, Dr. King & Mrs. Anderson are the people that you will love unconditionally and they will love you unconditionally.

I don't want to tell you much more because I feel like I've taken out a lot of big surprises for you but I will tell you one last thing: Put your faith in The Lord and not people. People will disappoint you, use you, and abuse you. The Lord will not. 

With much love,

17 year old Elizabeth.

The Healing Series

Tonight my mom got a text from her friend inviting us to go to her church because she had a feeling God had something good in store for us. The church was a physical stranger to me but I have heard great things about the church because some friends from school go there. My freshman year of high school I found out the preacher was a friend of mines dad after he spoke at a school chapel. Although I was feeling absolutely miserable I drug myself to their church with a slightly closed mind that it was just going to be another church. 

Much to my surprise the church was more than I imagined. It wasn't a good church service. No, no it was much more than that. The service opened up with a very modern praise and worship band jamming out to some of my favorite songs. A guest speaker spoke about leadership and being a missionary. He was so encouraging and just made me think: No matter what I major in I will make a huge difference as long as I become obsessed with living life unto The Lord. I will be a world changer. Sure, some doors have closed and I made the sad realization that going to medical school is not practical & neither is PA school and it will probably be the best for me to be *just* a nurse. I have been struggling with the idea of being a nurse because I've always dreamed of being a doctor and thought that was what God wanted me to do. I also have always had issues with nurses during hospital stays that are mean, rude and just flat out hate their job but after tonight I think I am coming to the realization that, just like how I wanted to make a difference in patients life as a doctor, I can do just that and more as a nurse(and future nurse practitioner) one day. 

After the sermon was over praise and worship ensued again and no matter how hard I tried to continue to worship, my body was just dead and writhing in pain. A young lady came up to me and asked me what my name was. I told her I was Elizabeth and she said "You know that's a strong powerful name. That's royalty." To which I thought "Well I am the Queen of Crohn's" Hahaha! She continued to tell me that God was going to heal me and slightly implied that the reason why I wasn't healed was because I didn't have faith. That made me a little mad. Ok a lot mad but then I just took a deep breath and said "Elizabeth keep an open mind. She's not making snide remarks. She has no idea how spiritual you are and how much faith you have. You are chaplain at FAITH Academy for gooses sake!" I just wish I could tell her that I already know god is going to heal me & that the reason I'm not healed is not due to a lack of faith it's because God is still using my pain as a ministry to others & he will heal me in his timing but, alas, I didn't. & I am oh so glad I didn't because what happened after that was amazing. She called over the pastor and an elderly couple that were prayer warriors and they prayed over me in a way that no one has prayed before. They prayed in JESUS name for no more inflammation in my body or polyps or any discord and for my cells to multiply and then they anointed me with oil from Jerusalem(which is a first) and something crazy happened. My intense stomach pain went AWAY! It lasted just for an hour but still for that hour the pain was gone and the pain is no where near as bad as it was going in the church now. 

I am so happy I went to their church tonight it was phenomenal!

Dr. Why?

So today I had another big infusion after senior breakfast(which is a big get together fellowship thing with all the seniors and their parents and we eat and yeah).

My face looks so chubby; gotta love that prednisone!

Anyways, yesterday we tried to get an appointment with a GI that sees adults that I've heard good things about that's in the same group as my Rheum only to find out today that we got an appointment with a GI today, right after my infusion, who is in the same group as my Rheum but not the doctor I wanted to see. I got the guy that I've heard bad wasn't so great. Oh Joy.

In the mean time my mom finally got a call back from my GI specialist in Gardendale after we left messages saying that my not only did my Rheum not admit me yesterday like he asked him to because of my low immune system but he also put me on freaky high prednisone infusions at a place that was not....sterile to say the least(trying to abide by HIPPA y'all). My GI was not happy with him for not following directions but it was too late.

We met the new local GI in the same group with my Rheum and my first impression went as followed: he marched in the room, slung his clipboard on the table(the bed looking thing you lay on) and plopped into the chair and quickly spewed out questions without missing a beat. The questions weren't as accusing like other mean doctors do. I guess he at least has some sense that it's not my fault not all of my doctors can agree on meds and which ones will put me in remission. He threw meaningless jabs & random questions at me to the effect of "What year and date where you DX? Why did you take that medicine? Do you even know what meds you are on?" and I threw the jabs back with my quick accurate responses. He simmyed down after that and didn't relay any eye contact. It all went so quick it was like he had a set amount of questions in his mind to ask and didn't let me ask any myself. Basically what happened is he stated: Assuming your DX is correct, and you are flaring and have yet to get in remission and from what you are telling me about your disease location we can put you on Imuran/6 MP. If you are still feeling bad in a few weeks even on steroids I can scope you but there's no telling how skewed the results can be. If you do have a lot of scarring and ulceration in the small bowel then you probably need to get surgery so we can start over. If I scope you and you are in remission that doesn't mean you don't have Crohn's it just means you have another problem.

So basically he had all these ideas that he didn't put into action and he didn't and neither did ANY of my doctors set up a long lasting plan if I still continue to have problems other than "Call the office" crap that, as I've come to know us a cop out of "I really don't care at this moment come back when your on your death bed."

I'm just so emotionally drained from all these doctor's appointments. I just wish I had a small set of doctors in the same practice which is what we tried to do today but the GI acted like he has never talked to my Rheum before. I just want a doctor compassionate like my GI doctor in Birmingham(and his personality), who is well respected(like my old GI) and who has some sort of plan(like my rheum) & who doesn't accuse me of being a pill popping drug seeker. I haven't had a script for pain meds since my post hospital stay 2 freaking years ago. I'm so tired and drained and I'm just ready for someone to save me. God can only do so much from afar & I don't know. After barreling this crap for 5 years you wander if God has already used your life allowance of miracles.

I just really want to cry and eat a lot of junk food and call Dr. King and sleep until I wake up and I'm not throwing up, nauseated, crapping 10x a day, having severe joint pains and OH GOD the pain. 

Why does this all have to happen my senior year?

Big overdue update

Hello everyone, I hope you all had a great weekend! I have a big health update and a big spiritual update so I'll start with the most important update.

At church camp on August 1, my little brother got saved! I am very proud of his big decision to join our heavenly family! It feels good going to sleep at night knowing that I don't have to fear that I won't be with him for eternity. I got saved a while back the summer of before 8th grade at a mission trip. Since then my walk with God has been rocky but at the end of the day my relationship has grown above and beyond what I ever imagined. The thing is though when I got saved I didn't get baptized. I never understood the point of it. Is it not enough to say I'm a christian and act like it? To this day I don't completely understand it other than it being a public profession of faith. I think that's something I'll never truly understand until I do some intense over due studying. Anyways, back to the point. As a family we all decided(with the exception of my father) to attend a big church event that only comes once a year called "Baptism at the beach" we all officially joined my church(again with the exception of my father because he's been part of the church longer than us) and got baptized! I feel weird. Like a huge weight is lifted off my shoulder. I've waited so long. I got saved a few months before all my health drama began and I hate to use that as an excuse for not getting baptized immediately but I really think the reason why I didn't was because no one explained to me what baptism meant and how big of a deal it was. Heck, I'm baptist! Either way, I'm glad it's over and done with.

On another, weird, note here's an update on my health. 

Last time I left off I was weary & a tad indifferent and that's how I still feel. I have a date at the mayo clinic for September 24! It's so real and it makes me so nervous. This is literally the final step. If anyone can help me it's these guys. Truthfully I'm scared for a number reasons. What if they make me have surgery? What if they take me off medicine and I get sicker? What if? It just makes me anxious thinking about it. I'm trying to avoid thinking about it in hopes it will go away but I know it won't. After I found out about the Mayo Clinic we went to see my gynecologist to update him about all my Crohn's related issues and hospital issues. My mom did some research and wanted to discuss other potential diseases that could be causing my pain in addition to Crohn's. She thinks I have Endometriosis because every time I flare I'm either on or about to start my period. My periods are always irregular, I've always had vaginal involvement with my Crohn's and I could go on and on about reasons why but it's kind of awkward blogging about this so I'll leave it at that Hahahaha. There's also the possibility of intestinal endometriosis which can occur in the ileum and rectum which is where a lot of my symptoms are. After talking to him he agreed that it's a possibility so I am getting surgery to check for it on September 12(or 13 I forgot). I will have a preop ultrasound & doctor's appointment the week before and a post op ultrasound the week after. He will be checking my reproductive system and if Mayo clinic wants to, they can check my intestines. So I will be getting my post op ultrasound literally 3 days before I leave for the mayo clinic. It's crazy timing and we'll be cutting it close but it will be good to have a definite "yes" or "no". 

That's it for now; stay tuned for the next episode of my journey. To get daily updates follow me on twitter @Curlycrohnie or "like" my Facebook page Queen of Crohn's

God is good all the time!

This is really random but I feel like God has really blessed me throughout this journey with my Crohn's Disease. I may not always know why bad things happen to me but eventually God reveals to me the meaning behind my suffering.

I'm adopted. If you know me personally this isn't a shocker. My parents adopted me at the age of 18 months after they were only married for two months. My biological mother knew she couldn't give me financially what my adoptive parents could so she made the brave decision to give me to my birth parents. Do you think it's a coincidence that I just so happen to have a diseases that requires a lot of money to maintain with expensive medications and alternative therapies? I think not. One time my mom had a revelation moment in church when she just balked because she realized God put me in their life for a reason. God IS good. All. The. Time.

In 8th grade I met Dr. S a rheumatologist because after my stay at the hospital to remove my gallbladder because I woke up with horrible joint pains after surgery. He didn't help originally but soon my joint pains went away for a few months. & I didn't need him anymore. Then I had my first real symptomatic Crohn's flare my freshman year of high school. The joint pains came back and I revisited Dr. Sc. Now we know those joint pains and that gallbladder problem were related to my Crohn's.

When I was jumping through hoops to get a DX and to find a doctor who believed me and who would actually care enough to DX me I asked God to show me a rainbow before meeting the GI that would DX me and I also asked for him to be sarcastic and just understand my personality. Literally that same day I was released from the hospital and was on my way to meet my current main GI Dr. King and I saw a rainbow. I met him at his office and we just clicked. He DX me within two months with Crohn's Disease. I literally love that man to death. He is funny and sarcastic and just an amazing man. I recommend him to everyone! He was a god send. I pray for him all the time as well as his family. He really means a lot to my family & I. Okay done gloating. He may see this and I don't want him to get a big head ;) 

I also met a Dr. last summer when I was in the hospital down here locally and couldn't make it to B-ham to see Dr. King. I saw him as a baby because I had "IBS"(now we know it was Crohn's the whole time) but he left for years and came back to my hometown coincide tally the same summer I got admitted to the hospital. He helped immensely and although we recently fired him from being my Dr. because he overstepped his boundaries by being accusative and just plain mean he did help when I needed him. God knew I needed him in my life for a set amount of time. He got him out of my path for a reason that I may not know till a latter date.

Mrs. Anderson. I had a teacher my freshman year of high school whose personality fit mine like a glove. I have never met a person who just got my sarcasm other than my family. She was going through personal struggles and God laid her on my heart to reach out and support her. Little did I know a few months later she would be supporting me more than I could fathom helping her. She was(still is)like a mother figure to me as well as a friend to me when my first Crohn's symptoms appeared. She supported me through my journey to get a DX and visited me in the hospital when I was still largely unDX. God knew I needed someone to minister me because God knows I doubted my faith many times during that period of time.

Mrs. Crutchfield was my History teacher my junior year of high school. She is just so weird and precious and I just ADORE her. I just so happened to of had her as a teacher her last year teaching at my school before moving. She is a cancer survivor and was very sensitive to my personal lacking a and failures due to but not limited to my Crohn's Disease. She inspires me to keep the good fight. She was recently DX with cancer again around the same time as my flare up of my flare up that I'm currently enduring and she just handles it with such grace and courage! She makes me realize it could be so much worse. She came into my life when I needed her most and God knew she would touch my life in a way no other person has.

I mostly posted this for me to realize just a few of many people God has blessed me with. Goodnight y'all and I hope you have a great day at church tomorrow. 

Peace & love

-E.

Worse week and day of the entire year

I just feel so lost and need to write and get all my emotions out before I have a breakdown.

Well, let's start with this week. This week I've had very bad vertigo. It has interfered with everything. It started on Monday after school. I was on my way home when all of a sudden I had a massive headache; I was nauseated and just felt yuck. When I went home I took a pill that was a left over from my previous treatment of vertigo last year. The next day I felt wonky and found myself asleep in Chemistry. Which, to me, was no big deal considering I have an A, but my teacher disagreed with me so I got called out. After class ended I phoned home because at that point I was so sleepy and dizzy I didn't care. I slept for the remainder of the day. On Wednesday is when my whole world flipped upside down, literally. I was taking a shower before school and as I leaned my head back under the nozzle and massaged shampoo in my hair I felt a swift jolt in my lower abdomen followed by a feeling of doing a complete 360 in my head. I fell to my knees but I eventually stood up again. After standing I felt a series of tiny but powerful punches in my stomach that hurt enough that I screamed at the top of my lungs. My younger brother raced in the bathroom an asked if I needed his assistance. After that, everything is blurry. I believe he may have helped me into the bed and I told him to relay these series of events to momma and tell her that I was not going to school because three hours later I woke up naked in a fetal position, with soap suds still in my hair. Later I went to school and finished out the day. That day my mother phoned my GI doctors(my GI doctors are pretty much my pediatricians, internist, neurologist and super man wrapped into one big package). Dr. King didn't answer for whatever reason, neither did Cacyn or Vivi. Dr. Gremse nurse eagerly answered the phone though and I got an appointment with him asap the next day. He wasn't even in clinic that day but he was sweet enough to meet us there at 2:00.

By this time I was averaging 12 hours of asleep a day due to various factors. When we met Dr. Gremse my mother decided that she wanted him to admit me but he didn't seem to think that was necessary(thank GOD) so my mother randomly decided that she thought it was best to get a colonoscopy. After that everything happened so fast. I'm still in shock. Dr. Gremse had an opening Friday(today) at the GI lab so he and my mother put together a game plan for trying to diagnose my strange symptoms. They scheduled me to have a CT scan, blood work and a colonoscopy immediately. So that day I went to lab corps and got blood work done then after that I went home and started the colonoscopy prep! I don't eat much so it wasn't that big of a deal for me to of had a liquid diet that day.

I got my colonoscopy at 10:00 AM. I absolutely hate colonoscopys especially at that hospital because of their unique protocol. I was already upset because one, I didn't want the colonoscopy and upper endoscopy and two, it took three painful tries to get an IV. Then it came time for anesthesia. Other than the pooping non stop the night before, that is the worse part of getting scoped, at least for me. I have a sensitive nose so the smell of anesthesia makes me want to vomit. I would rather smell feces then that god awful stuff. I even aspirated on myself one time because I was so nauseated by the smell but that's a different story for a different time. They put on the "oxygen mask"(which was really anesthesia. This isn't my first rodeo peoples) and I almost had a panic attack and punched the nurses. The smell was just...ugh. I did twist and turn and held my breath for a good while. Finally the IV sedation hit and I was out!

The colonoscopy showed very little inflammation, surprisingly. I just had a patch or two in my colon and ileum. The upper endoscopy showed that my gastritis was back with a vengeance and they found a new little surprise: a Hiatal Hernia. Although it is small, it's still a freaking hernia. I don't need surgery just yet though. My CT was clear and my blood work showed vitamin deficiency's! again. Which is strange because he kept saying I had malabsorption but I don't understand how I have that if I'm in endoscopic remission???? The GI believes that is what's causing my vertigo.

Currently, I am sitting in my dark bedroom typing 12:00 AM and meditating to the sound of clicking of the keyboard. I am really upset and angry and I don't know why. I guess because I feel like I'm undiagnosed again. Attempting to justify my symptoms with nothing to back it up. With every twitch of pain I feel like crying because no one really knows why I'm feeling this. I hate the ole "Maybe it's muscle cramps" because by now I know my body and I know something isn't right. I know the low grade inflammation could be causing this but I doubt it. I know something is going on with my body and someone is over looking it. I had this same feeling last year at this same time of the year, right after my colonoscopy. My doctors over looked it and thought it was nothing. Then one month later I ended up in the hospital for a week. I think that's why I didn't want the colonoscopy. Ignorance is purely bliss. So here I am debating if I want to look up this medical jargon he told me or will it only make me more upset. People keep telling me "Oh that's good news that your CT is good and that your inflammation is down". How is that supposed to me make me feel better? I'm still in pain. I still can't hear from the vertigo.


I just need a cure. I am determined to find a cure for this freaking disease. I'm tired of it taking away my life and making me miserable.

A Night Fit For a Princess

Last night was the night I dreamed about since I was a little girl-prom night! I have been counting the days down and it did indeed arrived! The whole day leading up to prom was a nightmare but m friend came through for me and the night ended on a light note.
It started out last sunday when I went to New Orleans with four other friends to buy our masks for Junior/Senior. Yes, the theme was masquerade! On the way over there I was very nauseated but I thought that it was car sickness. The next day was when everthing just went wrong. My neck was hurting, my stomach was cramping, my hips ached and my head was spinning. I thought it was the flu so my mom made me go to the Urgent Care. Okay can I get off track for a second and then I'll go back to the story & then to prom?

The PA was young and of course was a little overwhelmed with my medical history. When questioning me about my symptoms she said "Is there any chance you could be pregnant?" I shook my head and and said no. Then a few minutes later she abruptly asked me to go outside alone into another room with her. She closed the door quietly and said "I know you said you weren't pregnant but you're 16. You're an adult. Are you pregnant?" I looked at her in complete disgust. First of all, you JUST took a urine sample. If I was pregnant it would be positive and second of all I already told you I was on my period. I'm not a doctor but aren't those two things indicative of me not being preggo? ! I just looked at her and said "If I'm pregnant you're looking at the next virgin Mary." Her face was a mix of shame, disbelief and an awkward smile. Let me tell you guys, I walked out of there so triumphantly. I then called back to her as I walked out of the room, in front of the doctor who asked her to ask me again if I was pregnant "I've never had sex by the way."

Okay back to the story. My urine sample didn't show anything so that was good enough for me but luckily my mother wanted it cultured which lead me to get my problem diagnosed. The next day my mom got a call from Urgent Care and either they or my GI scheduled me to go to the OBGYN asap, which was thursday. My culture showed infection so we needed to see what was going on. I did have to miss my band trip the next day which was disappointing. It turned out I had a bacterial infection so I'm now on medicine to treat it. A rectovaginal fistula wasn't found. I am still progressively getting worse and I know something isn't right but I can't put my finger on it.

Well, this week has also been a very bad week for other family members. Everything from the pink eye to sinus infections are blooming in the Schmidt house. My mom was in bed till 2:00, it was raining, so I did pretty much everything by myself. My friend came over to do my hair and makeup which was a life saver. I was stressing out so much and I knew I was going to be a hot freaking mess but alas, I was not. I looked kind of decent. Since everyone was sick none of my family members saw me all dressed up. No pictures with dad. Nothing. I went over to my friend's house with about 10 other girls and we all took pictures together there and then went to prom. Our prom isn't like a real prom. It's actually called Junior/Senior Banquet because all we do is sit down and eat. It's pretty lame but it's the closest thing to a prom we have. It was still beautiful though! The 'prom' was at the Mobile Museum of Art so it was very elegant. After the banquet my friends & I went to an after party that a senior was throwing where we actually danced. It was kind of lame in some ways but maybe if I was feeling better it would've been better. I still had fun & was grateful I got invited.

Here is some pictures of me (:

Mrs. C- I'm going to miss her so much when she moves. She has taught me so much by saying so little. She always hugs me and pats me on the back when I feel so bad at school. She's the only teacher who has ever truly understood my pain as she's a cancer survivor. She is so beautiful & I can only pray that I can be like her one day. She is the weirdest person I've ever met but through it she has taught tolerance and love. I'm sad that our short time together is going to come to an end but she is going where God leads her and is going to bless other kids like me. This isn't goodbye but see you soon.

 

Peace, Love & Aliens

 

Crohn's Remix to Magic: Written by Elizabeth Schmidt(Yours truly)

I got the Crohn's in me. 

Every time I touch that Big Mac it turns into throw up

Everybody knows I got the Crohn's in me 

When I hit the floor the nurses come running to me

Now everybody wants some presto

Ensure, ensure, ensure 

Ensure, ensure, ensure

Ensure, ensure, ensure

I've got the Crohn's in me

These shots that I'll inject 

Will blow your mind

Pick a medicine any medicine

I'll hypnotize you with every picc line 

I'll need a nurse practitioner how about you. With the NG tube?

Come on down to the front and stand right here don't be shy!

I'll have you injectin

Have your mind spinnin'

Doctors tryin' to understand my genetics

Even Burill Crohn had to go and take some classes

And I see the surgeon like

What's up man? What's happenin'?

So come one, come all

And see the show tonight

Prepare to be astounded

No dietician or nutrition

You know I'm no hypochondriac 

I've never told a lie

So call me Mrs. Bowel girl 

I stay in room nine

I got the Crohn's in me!

Yeah I was feeling like complete crap so when i wrote this so maybe this can brighten someone else's day who also feels like crap?

Dr. King

Has my doctor appointment today with the FABULOUS Dr. King(don't tell him I called him fabulous-it's not a manly adjective and he'd probably think I was being sarcastic)! It was great seeing him & I was excited that he was excited to see me. We pretty much just caught up about and talked about how he was stressed out about switching to paperless with new computers but he'll be okay. It'll be a good experience for him. His new office he's building is beautiful! Love, love, love the theme! I know some of y'all are his patients so if you hadn't seen pictures- You'll love it! Anyways, we didn't talk a lot about medical stuff but the appointment went alright I guess. Can't blame him for not being all there because other stuff is on his mind. I've lost about 5 pounds and I sense a flare coming. I'm not happy but it's life I guess. Cimzia has been working great but I'm noticing a subtle decrease in effectiveness. My hormones have been crazy lately. Not just emotional but it's effecting my reproductive system. I'm not going to gross you out but it has to do with possibly cysts on ovaries and my cycle. Me stressing out about stupid guy issues doesn't help either. I'm never like this. I guess I'm just ultimately scared about my future. I yearn to be so normal and think of could've would've should've when there is no such thing. I wish I could've vented but everyone is going through crap. Anyways, Dr made a funny analogy about how our eggs are in a race in our Fallopian tubes to see who can be released and sometimes things go wrong etc etc. Sorry if it is medically inaccurate. I can't remember because I feel like crap. Dad & I went out to eat & I couldn't finish my kids meal because of nausea and pain. It's giving me bad flashbacks to freshman year. I wish my bloodwork would show my issues but that's too much to ask for obviously * insert sarcasm * I'm glad I got to get Dr. King a little "goody bag" of V- day junk food (: I wish the appointment went better so I could remember to tell him other symptoms but oh well. Life goes on. I guess I will remind him again next appointment. Loved seeing Ms. Cacyn & Dr. King! Love 'em to death! They inspire me to keep on keeping on and pursue being a doctor. I will be a good doctor. Y'all watch me! (: