Ulcerative Colitis Tips


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Re-Telling my story on the eve of my Takedown Surgery!

Introduction:

Tomorrow is the end of one era of my life, and the beginning of the next. I look back on these past 9 months and can’t believe everything that I’ve been through.

Here is a walk through my journey with UC….starting with diagnosis through the first surgery:

To say this year of my life has been like a roller coaster would be an understatement. If years ago I had been told that in 2011 I would have to go through this, I would have never thought I would have had the ability to get through it all in one piece. I have never been the best at expressing my feelings and I am beginning to learn how to be better at that, and I have always been more of the reserved types. I can safely say that this whole experience has changed my life, and for the better at that. Those first couple of weeks towards the end of December 2010 and the beginning of January 2011 were weeks of pain, confusion, weakness and helplessness. My body was telling me things that I couldn’t figure out on my own and I was starting to get really scared because when I had my first couple of doctors visits, they couldn’t help me find out what was wrong either. I still remember the morning of January 14th when my parents finally took me to the emergency room. I had never been to the ER but after weeks of not being able to eat anything and being doubled over on the bathroom floor in pain, I knew it was the only option. I think this was the day where I started to make the switch. I had doctors putting things places where things weren’t supposed to be put and I had no control of anything because I was on the road of trying to find out what was wrong. I couldn’t tell the doctors “no” because I felt uncomfortable, I just had to suck it up and do whatever they told me to do because I was scared out of my mind about what was wrong with me. After an entire day without eating, a CT scan and learning that I would be admitted to the hospital that night because I would have to undergo a colonoscopy the following day, I knew that I wouldn’t be getting any sleep that night because of that nasty stuff you have to drink to clear everything out.

The next day came and I had the procedure done and then came the words that would change my life forever….”You have Ulcerative Colitis.” At that moment, I didn’t really comprehend what I was being told. I had no idea what Ulcerative Colitis was and it freaked me out because my ENTIRE life I have been a healthy athlete and I don’t even drink alcohol and have never taken any drugs for crying out loud! It took me a while to process the information, thankfully my parents were there because as the doctor started explaining the next step to treating this disease, I stopped paying attention because I was still trying to wrap my head around what he had just told me. I managed to catch some words that he was saying here and there and they were all negatives. It was either that the medications I would have to take could in the long run cause me to contract other diseases or that scary “S” word….Surgery. Now I don’t know about you, but I NEVER thought that people could continue to live without a large intestine…but maybe that’s just me, but I had no idea it could be possible. Luckily, surgery was the LAST option on the list. At that point I was on board to try anything to get this disease under control so I could get back to living my life like I always had. Little did I know, it wouldn’t be as easy as I thought.

The first round of medications consisted of steroids and anti-inflammatory pills. Those kind of helped the first couple of days then I started going back to the same old routine….making trips to the bathroom about 15-20 times a day while in excruciating pain every time I went. The next round of medications included the same ones as before, but with the addition of a drug called Remicade. Now Remicade wasn’t made for people with this disease, it’s actually a drug used to help people with arthritis, and there are some pretty gnarly side effects that can come with it. It’s a drug that people aren’t meant to be on for an extended period of time because it can really cause some other big problems so i didn’t want to be on it for very long. I was released from the hospital after 10 days and was instructed to have these Remicade infusions (infusions= where they pump it directly into your veins over a 2 hour range) once every 2 weeks. They gave me my first infusion in the hospital before I left and over the next couple of days I was feeling pretty good.

It felt good to be home because the hospital is not a fun place to be unless you’re really sick. I had done research about this new disease that I had never heard of that apparently I had, and found information about people being able to help the disease just by changing their diet, so I made some diet changes right away. I was eating gluten free, no carbs and pretty much everything that is super bland….fun diet huh? Not really! The first couple of days after the second infusion, I noticed little improvement in my health and things started to make a downward turn. I was losing my appetite, losing lots of weight and losing lots of blood, so it was time for my 2 week check up with my gastro doctor. The moment I went in to the office and sat down to talk with him he told me that I he was going to re-admit me into the hospital that night. I was shocked. How could he know so fast, I just walked in. He saw how pale I was, how skinny I had gotten and was able to tell by my fingernails that I had lost way too much blood. So, change of plans, I was admitted straight to the hospital that day (Feb 15). I was immediately given 6 blood transfusions because I had lost so much. This is when I really started to get scared because the medications obviously weren’t working so I kind of knew the path that I was going towards, surgery. The doctors came in again to talk about the possibilities. They were going to try a higher dose of Remicade to see if that would help at all, but deep down I knew that surgery would be the only answer, I could just feel it.

Life in the hospital continued…making trips to the bathroom now about 10-15 times a day, again in excruciating pain and not being able to eat or sleep. Since I wasn’t able to eat, I had to have a PICC line inserted in my arm to get nourishment. A PICC line is a tube that they put through a vein on the inside of your bicep and feed it in so that the end of it is dripping into your heart so that when it drips nourishment, it can be spread through the body quicker since it’s going right into your heart. Even with this feeding line in my arm, I was still losing weight because let’s face it, it wasn’t food. I had little energy to get up and walk around, but that’s what you have to do when you’re in the hospital since you’re lying down all day and night. These walks are a necessity because you have to keep the blood flowing to prevent blood clots.

After the Remicade infusion, I felt a little better again with the higher dose maybe for 2 days, but eventually came back down to my state of depletion. I was going downhill fast. I had dropped from 160 pounds in January to a frail 118 pounds in February. Most people that know me know that I’m a lean guy to begin with, so all of the weight that I was losing was muscle. I was unable to walk without assistance, hardly able to talk, my teeth were starting to disintegrate and my hair was falling out. We finally got to the point where surgery was the ONLY option and the longer we waited to do the surgery, the better the chances that I wouldn’t make it out. They upped the amount of nutrition I was being given to try and put some weight on me so I could be stronger for surgery, even though I had withered down to a skeletal frame at that point so a couple of pounds seemed like it wouldn’t make a difference. Finally scheduled the surgery for Thursday Feb 26 (Afte r a sigmoidoscopy, a could of enemas and a couple more CT scans thrown in there.) There was a miscommunication so I was now postponed for surgery until Friday morning. With each hour that went by, I was starting to think that this was the end, and everything was out of my hands. I felt helpless in the fight for my own life…now that’s not a good feeling. Friday morning comes around….another miscommunication…postponed until later that night…..the last surgery on Friday went too long….postponed until first thing Saturday morning. At this point I didn’t care. I didn’t care what had to be done, I just wanted them to do it so I wouldn’t have to suffer any longer because I wasn’t sure how much longer I could hold on.

Saturday morning came…again with another sleepless night. I probably slept about 15 hours in 2 weeks. Finally time for surgery. You start out in the pre-op room where they hook you up to the IV and check your vitals, but I already had IV’s and tubes coming out of every which way that I didn’t need any prep. They had taken my vitals about 200 times in 2 weeks, but they still checked those…can’t be too sure. As they wheel you from the pre-op room to the operating room they give you a drug that is supposed to calm you down and make you feel relaxed. I can safely say that it does just that. I have never felt more relaxed in my entire life. Everything was in slow motion and I didn’t have a care in the world. Hours earlier I was probably as close to death as you could get, but at that moment, everything went out the window and I didn’t have a care in the world. I felt like there was nothing wrong and that surgery would be no big deal. They wh eel me into the operating room and it’s really bright and really cold. The lights in that room remind me of those stupid fluorescent lights in Wal-Mart that hurt your eyes, but BRIGHTER. I shimmy over to the operating table, not a care in the world and ready to go. At this point I’m talking to the nurses and surgeons, most likely talking jibberish (that’s how crazy this relaxation drug is) but I was just so happy about life. They did the whole, “Ok we’re going to put the oxygen on you, just take deep breaths and we’ll see you soon.”

9 hours later.

“It hurts and I’m freezing.” “It hurts and I’m freezing.” That was all I could say in the recovery room. I was only awake in there for about 2 minutes, but I clearly remember saying that repeatedly, only to get a response from the nurse that they couldn’t put any blankets on me because I had a temperature of 103 degrees.

I wake up in my room and I see my dad. He says that everyone is waiting outside and they want to come in and check on me if I was up for it, but I declined. I needed my rest.

The next time I wake up, I can’t remember anything that happened the past day or 2 and again it’s just my dad. I ask him what happened. He tells me how during the surgery, as the surgeon was removing my large intestine, it was falling apart in her hands. It was THAT close to exploding inside of me, and that would have been bad bad news.

I take a look for the first time under my gown to see the new attachment that I have and I see the end of my small intestine for the very first time….

to be continued….

Submitted by Curtis it the Colitis Venting Area




surgery, takedown

10 Responses to Re-Telling my story on the eve of my Takedown Surgery!

  1. Israel September 21, 2011 at 3:16 am #

    Hi Curtis,

    Incredible to read about how fast your UC progressed!!!

    Looking forward to part two :-)

  2. Paul M September 21, 2011 at 5:19 am #

    Reading your story Curtis took me right back to when I was in the hospital, all these crazy things going on and that out of control feeling, helpless in the hands of the doctors, and all the pain and sleepless nights. I’m fortunate that I didn’t have surgery in the end (pun not intended).
    Here’s hoping you’re feeling good now and on to new and better things.

    Paul

  3. S. Joseph September 22, 2011 at 3:26 pm #

    Curtis I wish you the best of luck. Please be sure that you arent alone & your parents were with you every tep of the way.

    Hope you have a speedy recover

  4. Jamie December 23, 2011 at 10:55 pm #

    Hey Curtis, that’s a crazy story…I have mild proctitis and find it a bit of a pain to deal with at most. I can’t even imagine going through what you have been through. Stay strong brother. Your an inspiration to us all!!

  5. Christine December 30, 2011 at 6:23 pm #

    Curtis, I’m so sorry for everything you went through. I’ve had UC for 3 years, and can relate to many of your experiences, but the speed at which everything happened for you must’ve been absolute hell. I have contemplated, and sometimes wished for surgery, and I’m so glad you had it done (I know you didn’t have much of a choice). I’m also looking forward to Part II of your story…I really hope you are doing well.

  6. Milka December 30, 2011 at 7:39 pm #

    Wow thats an amazing story… I think we are all waiting for part 2. Your story brought tears to my eyes remembering the uncertainty of what it means to have UC and all that can be involved. Good luck with everything!

  7. Bev January 9, 2012 at 1:21 pm #

    Hello Curtis,

    I am on the edge of my seat waiting to hear the rest of your story and how you are doing now.

    You certainly are a brave lad. Everything went 100 miles an hour in your case. Un believable…but believable because it really happened to you!!

    Please take care, and don’t forget to let us all know what has transpired since.

    A friend in UC, (university of colitis…lol)
    Bev:)

  8. Sheila January 12, 2012 at 9:06 pm #

    Inspirational story Curtis. I’ve been diagnosed since 2006 . My 21 yr old son also has UC. He found out his freshman year in college. Scary for me since he was in Ohio me in Virginia and knowing the pain he was going through all on his own. His also came on quick with trip to the E R room. Mine on the other hand was a 3 battle of being told it was IBS. He is on Asacol and doing well and I have been on remicade for a year after asacol, Lialda, predinisone and GI says my gut is good but my joints are painful. It is nothing compared to your story. I am interested in your soccer shirts because I love soccer. Glad to hear you are doing well and enjoying life. Take care!

  9. Christina January 17, 2012 at 10:08 am #

    Amazing! You are incredibly strong for going through all of that. So glad you were able to hang in there. I understand your pain! I sincerely hope that you are doing MUCH better and are able to enjoy life as it should be =) ((thank you for sharing with all of us))

  10. George January 19, 2012 at 11:44 am #

    I had the same diagnosis when I was in the 9th grade…but I was afraid of surgery, it was not as well regarded in those days(1987). Horror stories of patients having toxic fluids seeping into their abdominal cavity gave me even more fear and stress, and excruciating pain. Stress, represented as that knot in your abdomen is your enemy, learning to control this reflex is the most difficult thing you will ever attempt. I knew removing my colon would remove the colitis, but not the cause, or the triggers. Guilt, fear, anxiety…overbearing well-meaning parents that drive you to the brink of your very sanity. I have discussed my illness with other patients and we all had these things in common, why we react this way and others do not may be genetic predisposition or any number of things. But taking control of your life is critical to healing…I have come to believe this is a physical manifestation of a mental illness looking for an outlet. It must be addressed before it can find another way to manifest other than colitis. I have lived with this for 24 yrs. I have found a method that works for me, but we are all different. I wish you the best and the pain doesn’t last forever, physically anayways. George Phiniotis If you have any comments or questions or whatever…bcgrapes@gmail.com is my email. PS I have not been on regular meds for 18 yrs, Asacol briefly during a flare only.

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