ulcerative colitis ebook

Living with UC – A Teenaged Girl’s Perspective

Intro:

I was diagnosed with Ulcerative Colitis in 2012 when I was 16. I’m on my second year living with UC. My last colonoscopy was in May.

Some more about me:

Something interesting about me… well I used to be really into volleyball (I had to stop playing because of my condition). I also model for some clothing companies in Boston/Providence, which is so fun and I would love to continue to work with fashion in the future! I’m from southern Massachusetts.

Symptoms:

I currently go to the bathroom about 4-5 times a day. My stool is totally loose and it hurts pretty bad. I only bleed when I’m in a flare. I have stomach pains constantly; it sort of feels like when you’re really hungry (passed the stomach growling stage) but it hurts more when you eat. Dealing with this 24/7 for 2 years gets old pretty fast, as you can imagine.

Living with UC – A Teenaged Girl’s Perspective

I was diagnosed with Ulcerative Colitis in 2012. I was only 16 at the time and, as a teenaged girl, saying it was a nightmare would be an understatement. The first week that I showed symptoms, (liquid/bloody stools and incredible stomach pains) I didn’t tell anyone. I was embarrassed and thought “I probably just ate something funny”. I remember thinking “imagine if this just never goes away… that would suck”, but I had no idea what was in my future.

I finally couldn’t handle the pain any more or the urgency that I had to always go to the bathroom. I told my mom what was going on and how I was pooping straight blood for the past couple months. We went right to the emergency room, which was exactly why I didn’t want to tell her (I hate hospitals). I was a sophomore in high school and I had a big volleyball game that night, which made everything worse because as I was sitting in the hospital bed all I could think about was how bad I wanted to play in the game. Anyway, at the ER they gave me an IV which immediately gave me my old energy back and I felt so much better mentally. But I still had pain so the doctors referred me to a local gastroenterologist. Being 5’11”, I have an adult sized body, so they sent me to an adult doctor. I didn’t at all feel comfortable with this doctor, so my mom and I decided that we would rather drive an hour to Children’s Hospital in Boston.

My doctor at Children’s tried me on a ton of different medicines to treat UC, all of which I was unresponsive to. My mom started to do research on holistic treatments and diets that others found relief in. I found that the Specific Carbohydrate Diet helped my comfort level a great deal. Again, being a teenager, this also sucked, not being able to pig out on junk food with my friends:(. But after getting sick enough times, I decided I would rather eat healthy and make my symptoms more bearable.

My doctor at Children’s didn’t seem to believe me when I said I was feeling better from diet changes and he kept saying that “there are no studies that prove diet helps UC”… which is bull because I clearly felt better with the lifestyle changes I made. He said since I was unresponsive to everything, the next step was surgery to get my colon removed. At the time, I didn’t feel like we exhausted all other options, so surgery wasn’t even on the radar for me. We changed to a doctor at Mass General who is so much more open minded to other treatments.

My mom and I are curious that I may have Crohn’s Disease in my colon. I seem to find more relief from Crohn’s treatments than ones for colitis. My current doctor at Mass General firmly believes, based on my most recent colonoscopy (which showed the disease had spread greatly since my first scope), that I have UC and that the only thing that will make me feel better is surgery. He knows I am really apprehensive about getting my colon removed, since my uncle got his removed and still had symptoms after, so he is respecting my wanting to try every possible option first.

Now, the next step for me is an antibiotic, Vancomycin, which I started yesterday. It has shown some positive results with others, but my doctor warned me that he doesn’t believe it will put me in remission. If I don’t feel any better after a week, it isn’t going to work (so fingers crossed). If that doesn’t work, surgery is next. My doctor warned me that if I continue to have symptoms and continue to be unresponsive to treatments, this could develop into colon cancer in future years and I will need to get my colon removed anyway to save my life. That’s really all I needed to hear to get me to actually come to terms with the fact that I am going to have surgery.

With me going to college in September, I would rather get this done sooner rather than later. So over Christmas vacation, I will be meeting with a surgeon at Mass General to learn more about the procedure. Saying that I’m terrified is an understatement and I’m not in a good place mentally. Writing has always helped me cope with things and when I found this website I knew I had to share my story (which clearly isn’t even close to being finished yet). I find a lot of comfort in knowing that I’m not the only person going through this so I would just like to thank everyone who shares on this website because it has gotten me through some pretty rough nights. I would greatly appreciate any advice or acknowledgments that anyone has. I’m a really open minded person and I hope to make connections with other people like me. At least we have each other! :)

Medications:

I currently take 6 Asacol a day, (3 in the morning, 3 at night) 3 Vancomycin a day (1 in the morning, 1 in the afternoon, 1 at night), 2 VSL3 a day (morning and night), and a cap full of Miralax a day (whenever I feel like it). This combination of medicines has gotten me to feel the best (still not good though). In the past I have tried a lot of different medications… I did get some relief from Lialda and Mercaptopurine, but just not as much as I do with my current medications. I was on Remicade for a couple months and was totally unresponsive, but it did give me new moles and skin tags which freaked me out so I no longer get the infusion.

written by Kelly H

submitted in the colitis venting area





8 Responses to “Living with UC – A Teenaged Girl’s Perspective”

  1. LindyDecember 23, 2013 at 5:57 am #

    I was diagnosed with UC in college, and I remember thinking, “Thank God this waited until I was finished with high school.” I too, am very athletic, and if I had been diagnosed in HS, it would have robbed me of so many things I loved!

    And actually, it had for a long time. I didn’t think I was going to get married or have kids…who is going to want to be with someone who has to run off to the bathroom every hour or gets anxious everytime the bathroom is occupied? But I did, and I have three awesome daughters. And my UC is under control. I’m not proud of how I control it (smoking), but it works and I am able to live a normal life right now.

    I don’t know if I’ll ever get to the point where I need surgery…but best of luck to you. I’m sure you’re very anxious, but make the best choice for you and don’t let this disease prevent you from doing all that you wish to do!

  2. AdamDecember 23, 2013 at 6:02 am #

    Kelly,

    Thanks for sharing your story with us. I’ve read and now just re-read it again and I’m pretty confused.

    Did you see and feel your symptoms get better when you started treating your UC with diet?

    It sounds like the medications you’ve tried (and yes indeed, you’ve tried a whole bunch which you know) are not doing anything for you other than making you feel ok or “the best, but still not good though…”.

    So, hey, if some diet work is what’s worked THE BEST for you, I’d tell your doctor to go pound sand if they feel diet has nothing to do with UC. That’s ridiculous.

    There’s too many people who are getting major help from diet changes, and way too many people being told it has nothing to do with it.

    In the end, I’m sure you’ll make the best decisions for yourself, and I’m sure college will be a blast. And lastly, you can read tons of stories on this site from other UC’ers who have had surgery and are perfectly fine (and happy) as well.

    Best to you, and I wish your docs would get real and wake up,

    -Adam

  3. JDecember 23, 2013 at 11:12 am #

    Hi Kelly,

    Sorry to hear that you also have UC. I recently turned 30 and had surgery to remove my colon in March 2013 and have had an ileostomy since then. At the time, surgery was really the only option I had left, but after surgery, I immediately felt 1000 times better and have felt almost completely normal since then. I still go to the bathroom to empty the bag about once every 3 hours or around 8 times per day on average, but there’s no urgency like there was before surgery.

    Best wishes to you with whatever route you choose!

  4. ErinDecember 23, 2013 at 4:25 pm #

    Hello!

    I am fairly new to UC but I have been following the SCD with success for about a month.

    Since you’re in MA, I’d encourage you to try to see Barbara Olendzki at UMass Worcester. She does a lot of work with the SCD. I met with her for the first time last week and she gave me a major boost of confidence with regard to controlling UC with diet and lifestyle changes.

    Certainly, I’m no one to give medical advice, but you seem so young to be considering having an organ removed!!!! Don’t mean to sound ‘down’ on the surgery option, but you don’t sound like you’re gung-ho…more like it’s an option being pushed toward you that sounds like a magic bullet. Good luck, and I’m sorry you’re faced with this decision.

  5. Dede CummingsDecember 23, 2013 at 4:47 pm #

    Hi Kelly,

    I haven’t been on the site in quite a while, but it’s an amazing sight and Adam is fantastic! I’ve met so many friends on this site, too.

    I’m so sorry, because it sounds like you’ve been through quite an ordeal. I would really like to help. Sounds like telling our stories to each other is a good way to start. I went on the site, and started telling my story, then I wrote a book! But, I have to say, that the book has been amazing, because I get emails from people I don’t even know thanking me. So that is really worthwhile. I like to help people, because I know what it’s like to have pain and urgency and to be dehydrated and to throw up all the time and feel so lethargic you can’t get out of bed.

    Whatever you do, don’t give up. It sounds to me like you’re doing the right things. You were working on the diet, as Adam said that is really important. I gave up wheat and dairy right away. Also, no sugar! I know that’s hard, because your teenager.

    They put me on an antibiotic for my Crohn’s – colitis. It was Cipro. I took it for two weeks, I think. I felt great when I was on the antibiotic. I’m convinced my disease started because I got some sort of food poisoning.

    While you’re on the antibiotic, you should look into taking probiotics. I take probiotics every day, and since my surgery.! Which was in 2006. They removed my terminal ileum and a big part of my sigmoid colon. My disease was in both the large and small intestine so it is Crohn’s – collective. I have been in remission ever since! However, Crohn’s doesn’t really go away. And it is still there, in now what is called the neo-terminal.

    To stay in remission, I have a very strict diet like I mentioned above the SCD., but no grains whatsoever. My diet is more like the Paleo diet. Have you heard of that?

    I, too,, went to the doctor at the Brigham. They were not very helpful to me there! I wonder if that is true for the hospital, because then I went to Dartmouth, and I went to see Cory Siegel, who is one of the best doctors in the country.

    We do have an increased chance of getting: cancer (30%), so it is a very serious disease, and if the doctors think you should have your colon removed then probably you should. But, I do think it’s a good idea to explore all of your options. And to get a second, and maybe third opinion before you do anything.

    If you have any specific questions post them here, and maybe I can help. I am doing really well, but I first had the disease when I was in college (it was the 1980s)— No one knew what it was, and I had these weird bumps on my shins (I was an athlete also), and they sent me to a skin doctor! Turns out I had erythema nodes em, which is very commonly have ulcerative colitis.

    Anyway, stay with SCD diet!, And maybe you can start some yoga and meditation, and other holistic lifestyle changes. Sounds like your mother is getting into that, too.

    Hang in there, and I’m glad you’re on the site!

  6. shelly in maineDecember 24, 2013 at 11:16 am #

    Hi Kelly…UC is a very long journey. Like Adam and Dede said…keep working with diet, supplements…please read the surgery stories and other natural meds we use on here…that will help you mentally to see all perspectives. It is important to know that ALL meds have side effects as well as some many herbal medicines. Sometimes you may be having side effects causing similar UC symptoms!! For real…make sure you read all the potential side effects of everything. Try and keep a journal of meds, bm’s, foods, etc…you will be an expert in all the related medical fields!

    As Adam always says…things will get better and yu will get to do the things you want and maybe you will have a new “normal” but yu are an athlete so I know you will kick UC’s butt, your competetive spirit will keep you focused forward, no matter what you decide..just be informed-knowledge is power.

    Just fyi…I was a soccer player(softball and bball and played volleyball for fun/competition as adult…no volleyball up here and I’m sure short so i dive a lot!.gave up for knees and back!), I’m 45, diagnosed by 15 with symptoms long before that..currently Med free for 2 1/2 years, allergic and/or intolerant to meds…I use probiotics, scd-99%, vit d, fish oil, some Chinese herbs from licensed chiro,herbalist.

    Best to you, Shelly

  7. AllisonDecember 26, 2013 at 8:06 am #

    Hi Kelly,
    I was probably diagnosed with UC only a few months before you- I was 20 at the time. I’ve also gone through the list of medications with no luck- Pentasa, Cyclosporine, Imuran, Remicade, Humira, Uceris etc. The only thing that gave me any relief was Prednisone, which is dangerous to take long term, and I’ve been on it for two years now. I also tried the SCD diet. It helped me symptoms- reducing nausea and headaches, but overall didn’t help the disease.

    On December 19 I had my colon removed, the first surgery towards getting a Jpouch. I can already tell it was the right decision.

    Still, I strongly encourage you to keep seeing professionals and to make sure you’ve exhausted your options (within reason). But, don’t sacrifice your overall health. Even half a year ago I was very strongly opposed to surgery, the very mention of it made me burst into tears and become very upset and angry. But, when my doctor tried me on a new medication and I tried dropping the prednisone and became so sick that I almost missed my first week of Graduate school, I realized that I had to come to terms with it.

    I ended up making the decision to manage my UC with prednisone for the semester and go in for surgery at the beginning of my winter break, and I think this was key. I had time to fully think over and process everything, to do research, and yes- to be upset and angry. By the time the morning of surgery came I was ready for it.

    Another piece of advice- be careful with the internet. I ended up stopping reading blogs and researching because I found that happy people don’t tend to post things. You read more horror stories and stories about complications and infections than success ones. (I included the link the the blog I started last week to keep people updated on my recovery, if you’re interested- no horror stories on there yet)

    Good luck with everything! I hope you start feeling better

  8. Jennifer WrightDecember 27, 2013 at 5:27 pm #

    Hi there!
    I was recently diagnosed about 6 months ago now. I am 33 years old and at first just thought I ate some bad food, or had giardia since I work at an animal hospital. After about of month of pooping blood also, and was a shade of gray from lack of food, etc. I went to the doctor. (I did not have health insurance, so I had to purchase some quick!) That’s when I had an urgent colonscopy and found out I have Pan Ulcerative Colitis. I have been and am on many medications, but nothing is 100%. I too live in discomfort and pain (even taking pain meds almost every 4 hours). Sometimes to the point I am in tears. Also my eyes get super itchy and I get tired really easy. However I have found that eating foods that are related to the Paleo diet does help! =0) My doctor too told me “I wish I could say diet would make a difference but it won’t”. However I have found when I eat small meals (basically snacking all the time) at least every 3 hours it helps. Also I do drink lemon water, or put ginger root in my water because I do get nauseous a lot. I tried keeping a food dairy too but soon realized that I eat the same thing all the time. So I only write down when I try something new, which is hardly ever since I live in fear of what new food will do to my stomach…. very frustrating when food looks and smells so good! But like you said “I would rather eat healthy” Hang in there though! You are NOT alone and it does make me feel so much better talking with others like me who can relate and understand. I am always willing to listen and communicate! =0)

    Best,

    Jennifer

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