Ulcerative Colitis Tips


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My Ulcerative Colitis Journey

Introduction to My Life:

Hi, I just turned 21. I have had UC for almost three years now. I was officially diagnosed in March of 2009, but had been having problems since December.  It has been a roller coaster ride for sure. I thought all I was gonna have to do was pop a few pills and it would go away. Was I wrong! I had never heard of Ulcerative Colitis before so I had no idea how much it would affect my life and the lives of those closest to me. My mom is the one who encouraged me to write out my story, and has been my biggest supporter through all of this. My brother and sister are great, too. Especially when shopping and I thrust my items into their hands and rush off to the bathroom. :P

My Colitis Story:

Here is what the last few years have been like for me. First colonoscopy and diagnosis March 2009 started Asacol got back to a functioning life, but far from normal.I started college in June and road-tripped from CA to AZ in August for a friend’s wedding pretty sure they won’t ask me on a road trip again lol. I started Fall semester, made it halfway and flared again. My GI gave me prednisone to be tapered off in December. In January, I went into another flare and the Dr. just gave me Prednisone again, so I decided to seek a second opinion. After meeting the new GI and his PA, who are really great and more up to date on recent meds., I switched over permanently. I had my second colonoscopy in April and started 6mp. There was little improvement so I went in for a Sigmoidoscopy in June and they put me on the max dose of 6mp. They told me to be patient as it doesn’t always work quickly. So while I was being patient, one evening a t the end of July I was going upstairs a little faster than usual and pulled my Inguinal Ligament. The pain meds that they gave me for it did not help my recovering intestinals one bit. Oh, and running to the bathroom while trying to drag one leg is not fun, those days were pretty crappy….A few weeks later I started having some strange, compressing, pain higher up in my abdomen and ended up with a high fever, my very first trip to the ER and my first hospital stay because of acute pancreatitis. I flared up again very bad during my hospital stay and my GI insisted on a sigmoidoscopy, one of the most painful that I’ve had. I also had to have a ct scan, not fun. My GI discontinued 6mp as it was determined that’s what caused the pancreatitis. Two weeks into September I had my first Remicade infusion. I did the usual routine 2-4-6-8 weeks. It took a few infusions to see a little improvement, but I still wasn’t feeling as well as I expected. So after the New Year my GI kept pushing for another colonoscopy which was done in February ’11. I woke up to a piece of paper that said, “Healed Ulcerative Pancolitis, recommend colonoscopy 3 years”. My family was getting all excited, but I didn’t want to get my hopes up. I just continued with eating my “safe” foods and meds. In March, I was doing great and feeling much better so much so that I was working out at the gym 5 days a week doing cardio and weights. Then I got sick at the beginning of April, I went downhill fast and by the time they figured out what it was c.diff and I finished the horrible antibiotics I was in another major flare. A friend of the family had recommended I speak with her nutritionist who has extensive knowledge with UC, Crohn’s, and other illnesses. I did so at the end of April and started following her plan I did see some improvement, but again not like I wanted, so after 10 weeks and 3 tonsil infections(I did not take any antibiotics because they really mess up my gut more.) I took a break. I knew I was in another flare, I asked my GI for prednisone, but of course he insisted on a sig.scope first so off I go in the middle of July when I should have been laying by the pool to have another painful sig. I wake up to “Oh yes, you were right you are in a flare here is your prescription for pred and some hydrocortisone enemas.” Great! Second week of August rolls around, I’m still not doing good so they bump up my infusions to every 4 weeks. Today is the end of August, I’m doing ok. I’m working with the nutritionist again and seeing some improvement, but you know UC it has a mind of it’s own.
It’s just really frustrating. It has taken a toll on me mentally, physically, and emotionally. Especially because people don’t know about UC and they look at me and they’re like, you look fine why are you faking being sick?! Even some of my family and it hurts. They don’t understand why i don’t want to leave the house or go places with them or why I care if their bathroom is clean when they invite me over or how embarrassing it is when you don’t make it to the toilet, even if no one is around it’s still embarrassing. Car rides are the worst for me, I just freak out. I try to listen to music or think of other things, but sometimes it just doesn’t work. If any of you have any helpful hints, I’d love to hear them. :)

Also I wanted to say “Thanks!” to Adam for starting this site I have actually been following for a while, but I just wasn’t brave enough to post my story until now. It has been a great resource and it’s just nice to know that they’re other people going through exactly what I’m going through and actually have felt the same pain.

My Colitis Medications:

Asacol Max dose March 2009-present
6MP– April 2010-August 2010 caused pancreatitis
Remicade infusions– September 2010-present I was doing every 8 weeks they were just moved up to every 4 weeks because my flare was so bad and my last one actually helped right the next day
Prednisone: I’m currently on my 4th round of pred at 40mg and will taper.
Rowasa and Hydrocortisone enemas: I have done these on and off through out the flares and have used them more than I would like to think about.

 

This Story was submitted by Pricilla in the Colitis Venting Area

 




pancreatitis

3 Responses to My Ulcerative Colitis Journey

  1. .D. September 4, 2011 at 1:01 am #

    I have been through very similar situations, I was also diagnosed in march of 2009. Its not easy, and its definitely a big toll, physically and emotionally. People don’t understand what we go through, but we gotta be strong and win. I’ve been going through a flare up, and i have been through a few.

    My advice; When we are experiencing a flare up we need to heal the open sores, HOw? = Aloe Vera, Cabbage Juice, ALWAYS LOTS OF Healthy Fluids EX: ( Water & Herbal Tea) Absolutely No MIlk!, and Soluble Fiber.

    *Pills which help me: “Marshmallow root, Probiotics, Enzymes, and Very important when you are in a flare, you are loosing vitamins so take a safe multi-vitamin to absorb the nutrients you have lost.

    Once we heal and get over the flare, we change our diet to a high fiber “Insoluble fiber”. Theres much more to it, and its different for everyone. It really helps writing a journal and thinking back to what you had ate and what the results were. Watching funny movies help you mentally and having dogs that you pretend understand your pain helps too.

    .D.

  2. Adam
    Adam September 4, 2011 at 10:46 pm #

    Hey Pricilla, thanks so much for finally posting your story. I can’t agree with you more that UC has a mind of its own. It so crazy a disease because sometimes you feel you have it figured out, and then a week or two later it gets all crazy on you again for no apparent reason.

    I wish you the best with your current treatment program, and I hope the end of 2011 goes well for you and your family.
    All the best, and please keep in touch, Adam

  3. Pricilla September 5, 2011 at 12:27 pm #

    @.D.: Thanks for commenting it’s really nice to hear from those who know what I’m going through. I’m sorry your going through a flare.
    I have tried Aloe Juice unfortunately it made things worse for me.I do drink lots of water. And I learned very early on that milk was a big No. I have started my soluble fiber back up again and it seems to be working so I’m keeping my fingers crossed.
    I’ve also tried quite a few herbal pills and such, but they just didn’t work for me.
    I have kept a food journal in the past and it was helpful. I’m just not very good about keeping up with it.
    When I’m not in a flare or in pain, I do find that a regular fitness routine helps me quite a bit especially with stress. I love to watch funny movies and my family actually has 3 dogs :) Quite a few times when I have been totally overwhelmed I just spend some time with them and I feel better.

    @Adam: Thanks for the encouragement. I’ve been doing better so I’m keeping my hopes up that this nutrition plan will work for me.

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