My Journey To J-Pouch Surgery: October 2012

So, my previous story has left off at December of 2011. You may be wondering what has been happening in the last 11 months or so to lead me to J-Pouch surgery.....well here is where the story leaves off.

As you may recall I was taking Humira which was making my hair fall out. It was also giving me some other minimal problems, such as flaring at the injection site, headaches, and extreme tiredness after injection. So Feb, of this year (2012) one whole year on Humira, my Dr decided to take me off of it. Even though it was working the best out of all the meds I had been on in 6 years, he felt that sooner than later my body was going to build up an immunity or have a very severe allergic reaction to it. He told me that I would coast without meds for about 6 months or so then I would "crash" and my symptoms of UC would return. If he wasn't right on the money!

In late July, my stomach pain was returning and I started to notice small increases in my trips to the bathroom. I was also becoming more tired at this point and was sleeping most of the day. Then about the first week of August, my UC hit full force. 30 trips a day to the bathroom, bloody diarrhea, severe stomach pain, not being able to eat hardly anything, and some weight lose. I knew what was happening to my body and I was an emotional wreck because I also knew that I had exhausted all forms of medicine to treat my condition. I laid in bed for about a week hoping that my symptoms would go away and my UC would calm down with rest. But that was not the case. So finally the last week of August I took myself to the emergency room.......and of course, earned myself an all inclusive one week stay in the hospital. It was not as bad as it was December of 2010. I had listened to my Dr.'s wise words that waiting only makes it worse! I was put on a liquid diet to let my colon rest, and given the standard Morphine shot every 4 hours to ease the pain, intravenous steroids being given to me to stop my UC from flaring, the constant saline solution to rehydrate my body, an ultrasound of my colon and also a colonscopy a few days later.

At this point it is hard to even describe how I felt while being in the hospital, extremely sick, yet again. Defeated is the first word that comes to mind. Angry is a close second. I believe that everything happens for a reason. Me getting sick at the time I did and going to the hospital at the exact time and day that I did, played an important part in meeting a man that was about to change my entire life; granting a wish that I have made over countless birthday candles, North stars, and shooting stars.

I must admit that I do not remember alot of his and my convo. If I knew what he was about to say I would have been sure to record it! It was 8 am Sun Sep. 2, I had been in the hospital since Tues, so 5 days. A surgeon comes in, who I don't know, and starts to ask me about my journey with Ulcerative Colitis. Completely loopy off of my Morphine, I try to give him a play by play of the last 6 years of my life. From all the medicines I have taken, to all the Dr.s I have seen. All of the hospital stays, needle pricks, blood draws, humiliating bathroom situations, changed diets, allergic reactions, things I have put on hold indefinitely, and so forth and so on. I remember him being by my bedside and holding my hand because I was crying so hard. I remember telling him I was "just tired." He asked me what could he do for me. I was a little confused, I don't think that I truly understood that he was a surgeon or why he was in the room with me and not my regular Dr. So I answered, "I need a glass of water please, and could you please turn the light back off when you leave." I'm sure he was confused by my request, but being a Dr. he also understood that I wasn't in my right mind due to the Morphine. He asked me how I felt about surgery......I lit up! I told him I had wanted it 2 years ago but that my Dr. wanted to try some more invasive drugs before we went that route. He then said, and I quote....."I don't think your colon likes you, and I don't think you like it either, I think it is time we get it out of you, what do you think?" In that moment I cried like crazy....yes of course, how soon, etc!!! I called everyone I could think of at 8:30 on a Sunday morning to tell them the great news!

I was released from the hospital the following Tues. with pain meds and more steroids that I would have to take for a month to try and get my colon as healthy as possible. Surgery was not going to come quick though! I had to do steroids for a month so I could hopefully have the standard 2 part surgery instead of having to do 3. I had my consult on October 4, and everything was pretty good. I had to take steroids for a few more weeks to get my colon where they wanted it and my surgery was scheduled for Nov. 26 at 7:00am!!!!!!! I am now waiting an anxious ball of nerves! I am excited, scared, apprehensive, nervous, terrified, happy, sad all at the same time!

Until the next blog post....................

This is a story I shared on Facebook almost a year ago! I will follow up with another story of the past year so you can know what let me to J-Pouch Surgery :-)

My pledge to share my UC story no matter how hard it may be! Here goes.......

by Brianna Ramsey on Wednesday, December 7, 2011 at 10:51pm ·

DISCLAIMER: If you are queasy in any way shape or form, you may not want to read this as some parts may not be pleasant :-) Also please excuse any spelling errors. I was not worried about grammar, just trying to do this as fast as possible.
Everybody on my FB page or even some of my aquantinces have probly heard me talk about Ulcerative Colitis (from here on out will be UC) and maybe wondered what it was. Well here is what UC is to me.....this is the story of my struggles, my achievements, my down falls, my pain, my suffering, and my tears over the last 5 years. This is my story that I am telling you in hopes that it may make just one person more knowledagable about an illness that is often kept silent....it is not an easy story and I have not shared it with alot of people, let alone in a forum as puplic as FB....so here goes :-)
In 2006, when I was 21, I was just your everyday average girl....working, going to school, hanging out with friends, and just trying to find my footing in this world as a grown up. In early May I noticed that I was starting to lose weight...just a couple of pounds at first, and I thought to myself GREAT my metabolism must be kicking in because I def wasnt doing anything to lose any weight and I was eating the same....then it became rapid....3-5 pounds a week, and I noticed that I was actually eating MORE than ever (I would eat a FULL meal and literally be starving 2 hours later as though I hadnt eaten anything!), but was losing SOOOOOO much weight...I couldnt figure it out....but I didnt feel bad, so I just shrugged it off.....for the next 3 month (until August) I progressed at this rate until I was defending myself against anorexic remarkes (really!!! because I was eating upwards of 6 times a day) and all my clothes were hanging off of me! I also realized in this time that my energy was becoming less and less...instead of working 50+ hrs a week, I was barely making 40, and I was sleeping EVERY chance I got! I finally bought a scale and when I weighted myself was shocked!!! 109 lbs....I hadnt weighted that since middle school, before I hit puberty! My average weight was between 135-140 and I had maintained that weight since High School.
At this point my mother was becoming VERY concerned and was urging me to go the Dr.'s....well before I did that, I decided I was going to diagnos myself (after all....what is Web MD for!) Sooooo per my diagnosis, I had a tape worm! I mean it made PERFECT since....I had this tape worm that was eating all the food I was eating, which is why I was eating SOOOO much but why I was losing so much weight, I was basically feeding this tape worm. So I thought I was going to go the Dr.'s get some strong meds and show this tape worm who was boss....well if only it were a tape worm :-(
In early August of 06 I went to my Dr and told him my symptoms as well as my diagnosis, lol! He looked rather concerned and said he needed to do a colonscopy (as I will learn later my first of MANY to follow) to find out what it was, but there was def something up with my colon....could be a tape worm, though! So after my colonscopy which was torture.....not the colonscopy itself, but the prep the night before. Just to break it down a little for those who dont know, you have to drink an entire gallon of this fruit flavored, salty, thick liquid that pretty much makes you run to the bathroom every 5 minutes, to make your colon all nice and clean so the camera can see it :-) You also can not eat any solid food all day and can only eat and drink a few liquid things. Anyways...after my colonscopy, my Dr called with the results....but I had to go to his office, he wouldnt tell me over the phone...strange, I thought. So off to his office I go, he sits me down and.....drum roll please......you have......not a tape worm....but......Ulcerative Colitis and there is no cure. What?????? What the hell is that???? Web MD NEVER said anything about Ulcerative Colitis! Strangely, it was sorta like a tape worm in what it was doing to my body...when I eat food my body sends out a mass amount of white blood cells to attack it because it thinks I ate something bad (UC is an auto immune disease, which means your bodys immune system attacks itself, so it makes my body end up in a state of malnutrition) which is why I was always eating, but never gaining weight, actually losing it. Needless to say, I was a lil bummed but I still didnt fully understand what I was up against.....He put me on a breakfast lunch and dinner of drugs (I was seriously taking about 17 pills a day) and I also had to insert a suppository into my butt every day....seriously??? Who does that at 21....but whatever, I just wanted my energy back and I wanted my weight back as crazy as that may sound to some.....my body wasnt built to weigh 109!
And so it goes for the next year or so.....I realized more and more everyday what UC was and that this lil ugly disease was only starting to wreck havoc on my life......some weight loss was only the surface scratch to what was about to unfold. I stuggled daily with horrible stomach cramps (I have a pain tolerance level that most people wouldnt even be able to reach before they were crying for drugs) bleeding from my rectum when I would go the bathroom (UC causes ulcers in the stomach that pus and bleed) and i was going to the bathroom up to 15 times a day, at my worst. My weight stayed down for a few years and then I gradually strarted to gain it back. In this time I was not only learning to deal with the physical aspects of UC but the emotional and mental aspects as well. I already had to change jobs and put school on hold to accomadate my growing needs with UC and this was taking a toll on my emotional well being. The added stress of trying to manage a disease that was very costly upwards of 350 a month between meds, blood draws, and specialist visits as I now had a Gastrointeroligist (GI) to help me in my journey with UC, was weighting heavy on my limited income. I could not work more than 40 hrs a week, so overtime or a second job were out of the question, I was on a very strict diet, no fastfood, or junk food of any kind, and we all now that to eat healthy means you spend more money!
As all this was going on, I still had to explain to my friends, co workers and family why I was "diffrent" not the same Brianna anymore. Family was the easiest, co workers next, friends were the hardest and I lost alot during my journey over these last few years because I simply shut down or just didnt want to deal with the embarrasement and humiliation at having to explain why I couldnt make it to this big function or that important event. So for those of you wondering why...here you go.....I was either, to tired, to weak, curled up in bed in the fetal position in excruating pain, running back and forth to the toliet every 3 minutes, deppressed and feeling sorry for myself, or as crazy as it sounds I just didnt have anything to wear, as I have a wardrobe that spans a size 0-11, to accomadate my weight fluctuations that can happen weekly.
Last year in December, my UC let me know how serious it was and who was really boss. Now I had been to the hospital on several occasions, but usually just to get some fluids and nutriunts (dehydration & malnutrition are my biggest battles with this disease) and only had to stay overnight one time. And besides my two colonscopys that I get every year, and my visit to my GI every 3 months, I stay out of the hospital. Well In December of 2010 that changed, and my world, my strenght, and my whole being were tested to a measure that to this day, I am having a hard time overcoming. The day after Thansksgiving last year, it hit.....my stomach was in knots and I had no energy. I called into work and layed in bed in pain all day, the next day, the same thing, and the next day, and the next day...this lasted for over a week. In this week I had lost 15 pounds, I had not eaten more than a piece of bread or a cup of yougurt about every two days, my fluid intake was next to nothing, because even drinking water would send my stomach into horrible spasms . After 9 days, my mom came in the room and said come on I am taking you to the hospital. I busted out crying because I already knew what time it was....this was not good, and the little pedistal that I had been precariously perched on for the last four years had been kicked out from under me. I probly smelled horrible, I had not showered, brushed my teeth or changed clothes in about a week. I was just in to much pain and to tired to care, all I wanted to do was sleep. My step dad carried me out to the car and we drove to the ER.....there I was admitted right away. My blood pressure was low, all my nutrients were way below any normal levels, my hemoglobin was a 7 (the normal female matains a 13 or 14, and it was so low because I had lost so much blood during the last nine days) my temp was a 104.3 and my liver, kidneys, and pancreas were on the verge of shutting down because of the strain of trying to carry this enormous load. I had to get an emergency colonscopy and the results were devestating. My UC was worse than ever....my colon literally looked like it had been through a meat grinder.
Needless to say I was devestated, but happy to finally be in the hospital with the morphine numbing the pain that I had become so accustomed to. I didnt realize just how quickly things can change and how all of this was a result of my UC. I learned a valuable lesson that day.......at the moment of not feeling well, I need to call my DR!!! Waiting did not help my case, but I honestly just thought it was a flare like all the others and would go away soon. I spent 3 weeks in the hospital, I had to get a blood transfusion because my body wouldnt make its own blood to make up for all the blood I had lost, I got pancritis from some of the meds that I was on, I had a constant IV of salin solution and nutiuents to try and replensih my body of what it had lost. Those 3 weeks were a worl wind for me and now my greatest fear is being in that situation again. The thing is.....there is nothing I did....you can do EVERYTHING right, and because this is a chronic disease, it can just rear its ugly head whenever it wants......it can snatch your life away from you weeks at a time, and there is nothing you can do, but try to find your footing and hold on for the ride.
I owe my life to Dr. Clarke, and his Nurse Practioner Sue, they worked endlessly and wereat my bed side day and night while I was in the hospital making sure everything was right and that I was getting everything I needed. After my stay in the hospital, I was realeased....having lost a grand total of over 30 pounds...back to 109 it was, taking more meds than ever, looking like death (I was sooooo pale it was scary!) and being weak from laying in a hospital bed for 3 weeks, walking for 5 minutes was exhausting and my legs would be on fire! I then started my relationship with Humira. After trying remicade (twice) and ending back up in the hospital for a severe allerge reaction, we settleted on Humira, the most invasive, strongest drug yet. The end of the road for me, as all other forms of medication had been exhausted and my body had built up resistants to them. Started Humira in Feb of this year. It is an injection that I have to give to myself every two weeks....medicine wise, its the miracle drug for me. It has worked better than anything else I have ever taken. It did come with one BIG side affect, though, one that caused me to take a HUGE blow to my self esteem.......my long, beautiful hair that I loved sooooo much, that I always got so many compliements on, was falling out. Yes, falling out, at a rapid rate. I would run my hand through my hair and have probly 50 strands in my hand! It was every where...all over all my stuff, all over my car, it would be all down the back of my clothes, literally every where!! It got so noticable that I had bald spots on my head that you could see, my hair was very thin and wispy looking and just looked down right unhealthy. Finally in May IO couldnt take it anymore........so for all you wondering and asking why I cut my hair....here is your answer....I couldnt take it anymore! I figured if all my hair was going to fall out it would be easier to deal with if the strands were only 7 inches long, vs. 17.
My Dr put me on Folic Acid, and my hair loss has become a thing of the past. My hair is recovering, and I now have to defend all my "baby hairs" that are growing back by the thousands and sticking up EVERY WHERE, as everyone always thinks its breakage :-) I miss my hair and it may seem small, but when you feel as though you have lost so much beauty on the inside, when you start to loss it on the outside it becomes unbearable. I can make my self look normal on the outside, and now this disease and the invasive medications that come with it were taking away the last solice that I had. I think my hair loss was the last straw for me and has officialy sent me over the edge into a deppresion and self loathing that I wish I never had to met.
I can accept the physical things that are happening to my body, or I can at least try, but the emotional things that are happening are hard to accept. I have watched family and friends cry for me because Im not the person I used to be, I have cried for the person I used to be. I always say there are two Brianna's....the one before UC.....she was the best...fun loving, always ready for an adventure, full of life, full of optimisim, ready for her life to begin, and most of all full of energy :-) Boy how I miss my energy!!! Then there is the Brianna now.....who does nothing but fight and struggle, who has lost all since of what makes her happy, whos life is ruled by UC, who is sad, negative, and for the first time in her life clinically deppressed. The Brianna who feels like her life is falling apart and who cnat make it stop. That is the Brianna I am today. At almost 27, I am mourning the loss of myself, of the person i used to be......and I hope and pray for the day that me and that Brianna are reunited again, because I sure do miss her, and I know everyone else does too. I always say people who got to meet the before Brianna are lucky, and I feel bad for the people who have to meet this Brianna for the first time because I feel like its not me. Perhaps thats something I need to learn, to accept who I am now in order to be who I was before. But I will never be who I was before, for this disease has shaped me and made me who I am today. I have faced fear, pain, and adversity, that the Brianna before had never experienced. Even though this disease has taken so much, it has also given me alot, and I would be lieing if I didnt give it some credit. I have met some other strong and incredable people, I have learned that I am stronger than I ever thought I could be, and I have learned that know matter what knocks you down you can always get up and try again. I can only hope that if I ever have children I can pass these great strenghts on to them.
Now I say all of that, and try to be positive, but in truth, life is far from positive. I struggle daily with my own inner demons, at being mad at the world for the hand I was dealt, to being soooooo sad at all I seem to be missing in life. For when I was in school Freshman year and they asked where do you see yourself in 5 years, this was not my answer. People have often told me that God doesnt give you more than you can handle....and my response has always been the same....i wish he had a little less faith in me. People say dont let UC run your life, dont let it define you....but how is that possible when it has a hand in everything you do in life? When everything you do has to be catered around your UC? When it ruins great things in your life, because you become so weak from all the fighting that you dont know how to be strong anymore. I feel like I look the devil in the eye everyday and it manifests itself in me. But I am learning, and one day it will come full circle. I dont know why I was chosen for this disease, I dont know what my life will be 10 years from now. Will I ever be able to have children? Will I ever be in remission? Will I ever be "normal"? So many questions that I dont have answers to, and I probly never will. All I can hope for now is that a cure be found, because thats the only hope I have now. Even if I am ever able to have children, I fear that I will pass this "bad gene" on to them. So little is known about this disease, so that may be possible. I know what a struggle it has been for me and I cant even imagine how I would feel if I had to watch someone I love go through the same struggles as me. I wouldnt wish this upon my worst enemy.
I am now at the lowest point of my life and I have lost all fight I have in me.....I know I will get it back soon....I am just tired, I need a break. Nobody can fight a war agasinst there own body for 5 1/2 years and not be expected to give up at some point. My close family and friends will fight my battle for me now. They will be my laughter, my strenght, my soul until I can get it back.
I will sign off with this....thank you to everyone who took the time to read this! I did it for Crohns & Colitis awareness week....December 1-7...Our first one yet :-) So now YOU know someone with this disease and you know what my life has been. We often suffer in silence because our disease isnt socially acceptable. While no one is ever aware of something that hides in the dark and is never spoken about! So now you know my deepest darkest secret! Dont feel sorry for me, just pass the word along, and educate others. Help me and everyone else in the movement to find a cure!!!! Log on to www.ccfa.org and read about it! And if you ever come across someone with Crohns or Ulcerative Colitis, please dont judge, just understand.