Welcome to My World

hey everyone. my name is Ash and I have ulcerative colitis – or to be more specific, pancolitis – which means my entire large intestine is diseased. I’ve had every medication and experienced and tried almost everything known for the disease.  here’s my story.

I was diagnosed back in February 2006.  some people have symptoms for many years before finally seeking medical attention, but for me, it was more of a sudden onset that occurred within 2 or 3 months.  I had always been the picture of health, just having a random cold or strep throat here and there. out of the blue, I began just feeling really tired all the time and was having these stomach pains that I had never had before.  then I started noticing some blood whenever I had a bowel movement – which also started increasing in frequency.  at first, I didn’t know what to think and I didn’t tell anyone – not my parents, not a friend, not even my boyfriend I had at the time.  over the course of 2 months, things kept progressively getting worse and I had lost so much blood.  I was feeling really ill and would lay on the couch and sleep… sleep for hours and hours.  I also noticed a weird thing – I craved ice cubes. I was eating them like they were going out of style, and I didn’t know why this weird symptom came about until later – it is a sure fire sign of anemia. I had also started running fevers, really high fevers like 103 and 104 degrees. obviously by then my parents were aware something was wrong so they took me to the neighborhood clinic after my temperature had skyrocketed. the clinic did a blood test and immediately sent me to the hospital.

the hospital that I was sent to was a complete mess. I sat in the ER for hours and after passing out in the bathroom, they brought me back to a room.  the hospital took so much blood and never once acknowledged anything about it.  they were SO sure that the problem was with my reproductive system. I went through hell having all types of gynecology tests run on me, which all came back normal – so they sent me home. after getting back home, I kept feeling worse so the next day we went and saw our family doctor. he also did a blood test, and immediately was admitted into the hospital – luckily, a different and much better hospital than what I had dealt with previously.

after getting admitted, they rush up with 2 huge bags of blood. they had not even filled out all my information yet. the next thing I know, I’m getting a double blood transfusion.  the doctors didn’t know what was wrong, so I had several specialists attending to me at once. all of them said my blood was toxic, red levels were next to nothing while my white blood cells were dangerously high.  i went through a battery of tests and one by one, the doctors dwindled as the possible illnesses diminished.  finally, the gastroenterologist doctor concluded that I had ulcerative colitis. I had not even heard of this disease. the hospital printed out all sorts of information about UC and I laid in the hospital bed and read every last word. after spending 2 weeks in the hospital, I was finally discharged.

the GI doctor that originally diagnosed me, Dr. Charles Owen, is still my doctor today and he’s one of the greatest people I’ve had the honor of knowing.  I was fortunate in coming across such a doctor – and believe me, having the right doctor makes a HUGE difference in how your treatment will progress.

when I was hospitalized, my doctor tried to do a colonoscopy on me, but was unable to because my intestine was so inflamed and enlarged, the risk of perforating a bowel wall was high, therefore making the scope impossible to do.  the next 6 months I was doing alright. I was on 12 Asacol a day plus a multivitamin. then 6 months later, in July 2006, I wind up back in the hospital for another week –  same symptoms as before. the difference this time, they started giving me very high doses of steroids through my IV – they did this because they were trying to get the inflammation down so my doctor could actually perform a colonoscopy.  the scope was a success this time, and the pictures that he took and gave me are incredible to look at – definitely NOT normal. the scope was performed that morning, and afterwards I kept having pain and discomfort in my abdomen.  it’s not uncommon after a scope because they blow air through the bowel to see things better and the pain was supposed to subside. at 2AM that night, I was still having the pain so they did an emergency CT scan to check for any perforations. luckily, everything was fine – I just had a ticked off colon.

the next year and a half was relatively uneventful – I was able to go 6 months without a GI doctor appointment! I was still taking Asacol (12 pills a day), Bentyl (or Dicyclomine – an anti-spasm pill) as needed, and promethazine (a nauseau medication) also as needed, Hyoscyamine (another type of anti-spasm pill), Hydrocodone (as needed for pain), Prednisone (steroids) and the multivitamin. but then things started going downhill.  the next course of action was Imuran (or Azathioprine) which required getting blood tests every couple weeks or so to check my liver levels and make sure it wasn’t causing another problem. I was on the Imuran for about 5 or 6 months I believe, and it didn’t help me.  I had another colonoscopy in October 2008, which showed my intestine was still diseased and in bad shape. that’s when we started discussing Remicade.  I had my first Remicade infusion in July 2009.  after the first infusion, I felt GREAT. I had more energy and felt better than I had ever felt in the past 5 years. when I went back for the next infusion, that feeling did not return – and it hasn’t returned since, which is distressing.

in September 2009 I was admitted back into the hospital for another week. I was given more steroids, antibiotics, and everything else under the sun.  I didn’t have a colonoscopy this time, because I had one a year before, and I was already on Remicade, so more or less I was in the hospital to help get me through the flare up.  after the start of 2010, my GI doctor referred me to another doctor, just to get confirmation he was following the right course of action. after seeing this specialist, he recommended that I bump up the Remicade to the maximum dose allowed, and increase the frequency of the infusions from every 8 weeks to every 4.  if that doesn’t work, they would admit me back into the hospital and administer a drug called Cyclosporine – it’s an anti-rejection drug also used in chemotherapy.  it’s best if it’s administered as an in-patient procedure over the course of about a week and under the careful watch of the doctors because it’s very powerful and can cause a whole array of problems.  my doctor, and the one he referred me to, also said I am a perfect candidate for surgery.  we are in the course of setting up things for the surgery as I type this.  the surgery would be a J-Pouch. it’s a 2 part surgery. the first part would be a total colectomy – or removal of the large intestine. then they would pull my small intestine down, form it in the shape of a J and attach it to the rectum. then, an ileostomy is made to bypass the newly formed pouch so it can heal.  I would have an ileostomy bag for about 2 – 3 months while the j-pouch healed, then I would go back in for the second part of the surgery, called the “take down.”  this is where the stoma and ileostomy bag are removed and the intestine is reattached to the pouch.  the next day or two after the take down is supposed to be the hardest, where you’re having to re-awaken your bowels and get them functioning again. but, more on that when it comes down to it. :)

that’s my story in a nutshell… a really large nutshell. i’m very open about my journey with UC and will always answer any questions anyone might have. I’ve sort of seen it all and had first hand experience with it all. I’m really close to my family and I’ve found that family support is essential in keeping a positive attitude. I plan on posting more about different diets I’ve tried (that didn’t work for me, but hey – hopefully they can for you!) as well as going in depth more with the medicines and their side effects I’ve experienced.

i wish everyone dealing with this or knowing someone dealing with this the best of luck. and also remember, it’s not the end of your life, it’s just a new chapter.

8 thoughts on “Welcome to My World”

  1. Your blog is wonderful! Thanks for sharing your story and I look forward to following your journey. I have Crohns and I can relate to a lot of the things you have experienced. I also have a niece who was recently diagnosed with UC. I will keep you in my thoughts and prayers. I hope your surgery goes well.

  2. I am 45 years old and I have uc also.Just started imuran 21 days ago.I feel really tired all the time.Any tips on getting my energy back would be helpful.It has stop my bleeding which is a great thing.please e-mail back with any tips you may have.Mine is so much like yours you would not belive.Thanks again Sandi.Will be waiting on your e-mail.

    1. you’re so lucky that Imuran has stopped your bleeding. mine keeps spiraling out of control.

      any tips though… definitely get as much rest as possible, especially if you’re getting up in the middle of the night repeatedly to go to the restroom, because the sleep disturbance is bad when you have limited energy anyways. when i’m having my own “bad” days, i try to limit my activity and just lounge around. and whenever i’m having a “good” day, i don’t overdo myself in any activities because i know i’ll feel worse the next day. it’s all about trying to find that balance.

      i also take a multi-vitamin every morning. it helps replenish any nutrients and electrolytes that are lost when you’re having bowel issues. i use women’s one-a-day. and make sure you’re doing your blood tests every couple weeks while on Imuran so they can monitor your body’s blood and organ levels – mainly your liver. when your levels are out of balance, it tends to make any symptoms worse.

      basically, just take each day as it comes. keep in mind you have a limited amount of energy you’re able to use so use it wisely. i hope this helps, always feel free to email me :)

  3. Thank you for your story. My 14 year old son was diagnosed at age 6 with UC. I am wondering how old you are now and if they only suggest that surgery after a certain age?? Thanks again

    1. I was diagnosed at 21 and I’ll be 26 in less than a month. I’ve been through every course of action to fight this disease, all to no avail. All the GI doctors I’ve seen have told me I have one of the worst cases they’ve seen. I’ve been on Remicade since July 2009 at the highest doses possible (10mg/kg every 4 weeks) and it’s not working so my only other option at a normal life is surgery – which will be sometime here in the next few months.

      Doctors say that after you’ve been living with a severe case of UC for 3-5 years, your risk of colon cancer triples. If you have a minor case, it doubles after 8 years. I just hit my 5 year mark so my risk of developing colon cancer is very real.

      Best of luck to your son! Having an awesome support system of friends and family is SO important in dealing with it. If you ever have any questions feel free to ask… I’ve been through and seen it all.

  4. I have UC and have such a hard time keeping a job with my symptoms. Do you still work and if so how do you manage to work?

    1. I was working at a place where I worked before getting sick. They were pretty lenient with me and understood when I was having a sudden flare or when I’d get admitted to the hospital for a week. After I got sick, I had to quit college in my junior year because I was so weak and the disease was so new to me. After about 2 years of recovering and recuperating I decided to go back. I’m still in school now and the only available times for the classes are at night. The job I had was working for the Texas Rangers baseball team, who plays at night. So I had to quit that job in order to get my education, and that was back in March that I made that choice.

      I haven’t been looking for a job too heavily because sometime this summer, I’ll be having my colectomy surgery and won’t be able to work anyways. I had to move back in with my parents, who have been such a rock for me to fall back on. But the jobs I have looked at are ones that would allow me to sit down (standing makes my stomach hurt worse) and jobs that would allow me to run to the bathroom if needed. The other hard thing is having to disclose this information during an interview because the employer will just think you can’t work or would be a liability so they don’t hire you. It’s tough…

  5. You’re story is eerily similar to mine. I was in perfect health, actually a health nut and ex personal trainer that worked out 6 days a week 3 days twice a day. I ate perfect, read all the labels never ate sugar or even microwaved food. Then almost 3 years ago I noticed blood in my stool, then over the next month and a half I lost 60 pounds. I got so violently ill. Literally going to the bathroom 15-20 times a day. Couldn’t eat anything without excruciating pain and throwing it up. I didn’t sleep more then an hr or so a night for literally 2 months. I finally got admitted in the hospital after I was near death. Was in the hospital for two weeks. I had a blood transfusion and was put on a steroid drip of a 100mgs a day. I also couldn’t have a colonoscopy for a couple months my colon was so bad. I’ve been on the max remicade for 2 years now.

    I had a colonoscopy Aug 3 and my colon looked great. Although I’m nowhere near as sick as I was when I first flared, I still feel sick All The Time. I feel like my Dr thinks I’m a total hypochondriac too. He said my colon looks good I shouldn’t be having all these symptoms, but I do. I feel like i have the flu right now. It’s like Chinese water torture. It’s the fact that this feeling never goes away that is so mentally tough. I can only stream together maybe 2 or 3 days of feeling good before I get sick again. It’s not bad enough to have surgery or be admitted to the hospital, but they’re enough to keep me down and miserable. My life was going perfect right before it happened. I had a body I worked on for years. I haven’t been to the gym since I got first sick almost three years ago. I almost never see my friends because I never know how I’m going to feel day to day so I don’t want to put myself out there and then have to flake.

    I’m sorry I sound like a total whiner, but I haven’t vented to anybody in a long time. This is the first and it feels really good to know that I’m not the only one going through this, others can relate. Although I wish none of you had to go through it.

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