Colitis-y and Confused

recent picture of me!

recent picture of me!

Intro:

Hi I’m Ellie. I’m 18 and from Ireland. I was only diagnosed with UC about 7 months ago when I finally went to the doctor after my nearly 2 years of denial. I’m a university student so getting better and having the time to get better is tough but hopefully I’ll get there.

Some more about me:

God…something interesting? Ehh, I love swimming, does that work? It’s the one kind of sport that I suppose is more relaxing on the body and doesn’t effect my stomach/colon. I do amateur drama and love reading and going to plays as well :)

Symptoms:

It’s bad at the moment. Not as bad as it has been but by no means good. Cramps and going to the bathroom about 5 times a day. But again, working hard to fix it :)

Colitis-y and Confused

I suppose maybe because I’m young I had this whole ‘invincible’ misconception. UC made me realize that I’m really not and that I’m far more fragile than I thought. I get so jealous of my friends and peers who seem to have no cares in the world while I silently battle with my colon. My doctor is lovely and always asks me how I am emotionally and how I am coping but that’s his job and I suppose we know each other quite intimately at this stage, 2 colonoscopies in. As I’m 18 and in university alcohol is a huge part of social life but I have started to realize that the harm it could be causing me due to my UC outweighs any enjoyment from it. Ireland has a drinking culture, we deny it but it’s there and it’s really difficult trying to explain why I don’t want to drink and why I can’t really. The prospect that frightens me the most about colitis is surgery. I was diagnosed young and will have this condition for the rest of my life and I worry that no matter how much I change my lifestyle and focus on my health I won’t be able to escape surgery. My family are quite supportive though. Well, my dad was very ‘Get some fresh air, you’ll be fine’ at first which really upset me because if that was the case why did I have to get a camera up my bum? Eventually though he realised colitis was serious and started to respect it a lot more.

Questions to other UC sufferers:

  • Is 18 very young to be diagnosed or is that just the general impression I got?
  • Have any of you given up alcohol and how are you finding it?
  • Am I being incredibly na├»ve about surgery by ruling it out already?
  • Diet change is really difficult for me at the moment just because I’m always on the go, does anyone have any suggestions on fast healthy food that would sit well?

Medications:

My medication at the moment isn’t great but I have another meeting with my specialist in the next month that hopefully will sort it out.

written by Ellie A

submitted in the colitis venting area

12 Responses to “Colitis-y and Confused”

  1. AdamJanuary 26, 2014 at 6:09 am #

    What up Ellie,

    Hey, thanks for writing in, and you’ve got some great questions.

    Here is my view on them:

    1) 18 too young for UC…
    - definitely not. lots of UC’ers get diagnosed in their late teens and early twenties. Same goes for people getting diagnosed a bit later on as well. Getting diganosed at 50 is a bit rare, but I hear from people all the time who fit that deal as well. So don’t trip at all about your age and diagnosis, there’s patterns but no definites on when it happens.

    2) Alcohol…
    - A much talked about topic ever since I started the site many moons ago.(I sure hope you weren’t drinking tooooo much when the site started Ellie… But, I’m a big backer of the alcohol is NO good for UC. Others disagree and/or think there are ways to get your drink on while still keeping the colon happy. I just don’t think its a great idea. There’s a heavily commented story on it here http://www.ihaveuc.com/can-you-drink-alcohol-when-colitis-is-acting-up/

    3) Surgery…what to think when newly diagnosed…Tuffie question Ellie. It is for sure not what newly diagnosed UC’ers want to be thinking/talking about and/or dreaming of. But, yes, surgery has helped many upon many who have had little or no other options. I’ve never had surgery so I don’t know for sure, but there’s quite a few stories on this site (and the new surgery.ihaveuc.com sub-section that will for sure make you more comfortable with the whole idea. WAY better than hearing about it from a doctor who has no first hand experience with actually GETTING surgery). here’s a link to some of them stories: http://www.ihaveuc.com/category/colon-surgery/

    4) Fast healthy food that shits well (I mean sits well)
    – Chicken! Here’s how you do it, go buy 4 chicken breasts. Bake broil, or BBQ them. Add a little salt and pepper and maybe some “herbs de provence”…or something of that sort, parsley if you like. Anyways, eat one, put the three others in the fridge and pull them out when you’re hungry. Yeah, takes some start up time to prepare, but then you have 3 quickies. As for “FAST FOOD” Mickey D’s style…. negativo, don’t mess with those places. If I had to, I do a grilled chicken salad from Burger King, but that’s about it (no dressing). If you like making soups, and have a thermos or way to heat/reheat….crank out a big pot of soup, stuff with meats and veggies, and chow that easily and quickly and rocks some hard poops afterwards too.

    Best to you Ellie, thanks for your story and picture and big what’s up to Ireland,

    -Adam

    • Nikki HJanuary 26, 2014 at 7:19 am #

      I COMPLETELY agree with Adam. I was diagnosed at 17.
      Alcohol? Some red wine. Maybe. Not when in a flare.
      Surgery? Mine was an emergency, I had no choice. I was a little too wain to even consider it, even at 24. Everyone receives this info differently.
      Fast food? NO. You won’t miss it, promise. Always keep something to snack on, if you HAVE to eat fast food, go for the grilled chicken on a salad. Make the healthiest choice. You have to live with this body for the rest of your life.

      Nikki H

    • Ellie A
      Ellie AJanuary 26, 2014 at 1:23 pm #

      Thanks so much for your reply! Finally feel like I have people who understand where I am coming from. My friends are great but sometimes they just don’t get it. Thanks especially for the advice about the food (and by fast food I meant quick to make :P). I’m really excited to make the change and all that jazz so hopefully I’ll have a new post up soon to tell you all how I am :)
      Thanks so much again!
      Ellie

      • AdamJanuary 26, 2014 at 2:39 pm #

        You Go Girl!

        Keep us posted!
        best to you Ellie!

  2. KateJanuary 26, 2014 at 10:31 am #

    Hey Ellie!
    I was diagnosed in 2010, right after my 20th birthday, and I definitely felt the same way, that I was easy too young to have to deal with this, especially when colonoscopies seemed reserved for the geriatric. But after finding this site, I realised there is no norm for this disease.
    As for drinking, I found that as long as I wasn’t in the middle of a flare, and I didn’t go crazy, I could enjoy a drink or two every now and again. But it can be a trigger if I’m already not feeling great.
    Eating is something I still struggle with after 3 years. Since I was also diagnosed in college, finding a way to stick to a diet was near to impossible. I generally ate a lot of sandwiches, grilled chicken, like Adam said, and not much else. When I feel well, I eat whatever I want, but if I don’t feel well, I’m back on my restricted eating.
    I know how difficult it can be to explain to people what you’re going through, but to be honest, it helps so much to tell people. I’ve gotten a lot more comfortable about it, referring to it as irritable bowel disease, people don’t seem to ask many questions after that. And others are interested and I like to talk about it, the struggle gets easier when it’s not a secret anymore. You have other people who can remind you,”aren’t you supposed to avoid that?”
    I hope this has been helpful,I know this site helped me a lot when I was at my lowest with this.
    I wish you all the luck!

    You’re friend in UC,
    Kate

  3. SherJanuary 26, 2014 at 11:52 am #

    Ellie,

    I also was diagnosed in early 20′s! I kept telling myself if this doesn’t make me a strong, independent adult I don’t know what will! I was horrible with the “alcohol” thing and still don’t know if it made my existing condition worse or not. Sometimes when I’m in a flare it doesn’t matter if I don’t drink at all I still flare bad. Just be careful, if it seems to be bothering your symptoms then your body is telling you stop. Some people have no tolerance to it at all, some can stomach it once in a while, or when flares are settled down.
    My advise with telling people is this, I never told anyone.. I wish I would have. Not everyone that passes by, but a few close friends, insted I was too embarrassed. I would recommend if you don’t want to label you have a horrible disease, just say you have an extremely sensitive stomach, or food allergies… I realized when I expressed these things people are empathetic or they can relate and you had no idea!!!!
    Fast food, like a resturant? I can do like grilled chicken, salads, chicken fried rice, etc. I can’t do any bread, or sugary… That’s probably why alcohol bothers people, doesn’t it turn to sugar in the body? Anyway, I practice gluten free and it seems to help. At home when I want a “fast meal” I do steamed white rice.. boring I know, but it doesn’t bother my tummy. I also do dmoothies with bananas, kefir, and all natural peanut butter.. The health section at the grocery store gas become by best friend! I always grab a banana and a gluten free breakfast bar on my way to work, in case I get hungry and my only options are donuts and chips at work!

    Good luck! Keep pushing forward… Oh and a good book to read ” the gifts of imperfection” by Brene Brown. It has nothing to do with colitis, just about embracing who we are!

  4. bevJanuary 26, 2014 at 3:03 pm #

    hi Ellie…

    No way do I nor would I drink alcohol now that I have UC. Alcohol actually causes intestinal bleeding in everyone, although in normal people, without UC, it goes unnoticed. In we UCers, however, such is not the case. We notice it!

    It bites, but the cold hard truth is, unless you want to remain in a flare, alcohol should be completely avoided….sorry to be Debbie downer…

    Cheers, and welcome to this site.
    :)

  5. SebastianJanuary 27, 2014 at 10:47 am #

    Hello Ellie!

    I totally understand your fears and feelings. I had the same problem in my first year of UC. I was diagnosed when I was 16 and it was five years ago. In fact, after I heard diagnosis and that I will never get rid of illness I was really depressed. I was ashamed when I had to explain why I can’t go out with friends, drink alcohol etc. Believe me, there are not many young ppl who can look at UC with maturity. Some was making fun of me, others didn’t want to see me again. I am lucky guy, because I have friends and family, who were great help and somehow I managed to learn how to live with UC.

    I am second year student now, there were many problems, but in fact, many of my classmates don’t even know that I am sick. Only those, who are often with me knows the truth ;)

    About alcohol… I live in Poland and there is HUGE pressure on drinking. Even though I always say that I can’t drink, because I have UC. If somebody ask me about UC I explain as much as possible. It is important to show your confidence to others, so they won’t think anything bad about you. Show them, that you are very strong person and don’t be afraid to refuse. Of course it is good to explain reasons, but if you are shy, simply “I’ve health problems” should be enough.

    Don’t worry about surgery. There are dozens of things you can try before that. I’ve tried about 20 different ways of healing, many of them helped me a lot, some are still helping. I am not taking any medicines for one year already. It doesn’t mean that I feel good all the time, absolutely not! I have better and worse months, but I know what to do when I don’t feel alright. In the near future I am going to try fecal transplant… I hope that it will help me to say goodbye to my UC ^^

    Good luck and do not worry! ^^

    P.S pardon me my language mistakes :)
    Sebastian

  6. Tim B
    Tim B.January 28, 2014 at 8:26 am #

    Binge drinking is definitely off limits for UCers. Having dry wine in moderation (i.e. 2 – 3 glasses) typically does not bother me. Also, hard cider as long as it is pure (i.e. no added sugar or other random fillers). Most health food type grocery stores carry this you just have to check out the ingredients label. I only drink at social events where I feel awkward not to and only do it once or twice a months tops.

    Regarding food I encourage you to start tracking everything you eat and try to figure out what foods set you off. Carbs are not a problem for me, but seem to be for some people. I know some folks eat a lot of salads but raw vegetables because of their fiber set me off. Nothing good out of actual fast good restaurants, but if I ever have to eat there I simply get a grilled chicken sandwich with a fruit cup. Greasy foods such as fries or pizza will make me hate life for sure the next day.

    The main thing is to understand that UC impacts everyone a little differently. Start with a very limited diet and slowly add in foods to see how it effects you. Good luck and know that we all are behind you.

    Tim

  7. Morgan P
    MorganJanuary 31, 2014 at 8:10 pm #

    THANK YOU! We are almost in the same exact position right now! I’m also 18 and was just recently diagnosed with UC, as well. It’s so tough being in college with this condition, surrounded by constant drinking and bad eating habits. My only flare ups since being diagnosed have been the couple of times I consumed alcohol and they are usually pretty intense.
    I’m nervous about the life-long future dealing with this condition, as well. So I don’t know if I can offer you advice as much as I can offer you companionship in the fight against diarrhea and abdominal pain. Let me know if you learn some new tricks because it seems like we could relate a lot!

    • Ellie A
      EllieFebruary 1, 2014 at 4:13 am #

      Thank god someone else knows exactly where I’m coming from! I’ll be sure to let you know how things are going and if I stumble across anything worthwhile in the whole colon fighting department! :)
      Ellie

  8. Olivia D
    OliviaMarch 7, 2014 at 3:24 pm #

    Hello Ellie :)
    i was diagnosed with UC at 17, im now 19, i had to quit sixthform, and my job and my whole social life was just non existant. No one really believed how bad i was because i looked fine … anyway I got an allergic reaction to the medication i was given so that was completely ruled out and the only option was surgery. i was completely against this and said no. It was very scary but i completely went against the hospital and it was hard as you always think the hospitals would know best. I went down the chinese herbal route but not just any one! its best to try and find a more traditional chinese herbalist than a more modern one if you understand what i mean. I live just outside of London and luckily i found one about 20 minutes away from me (recommended by a girl who had ME- also cured by the herbal teas!) Anyway, i went to this lady and i had accupuncture, chinese massages (ouch) and herbal teas that she made up and gave to me every week. 4 weeks later all pains and diaohrea had gone! i Managed to get back into skiing which i hadnt been able to do the past 2 years!
    http://contemporarychinesetherapy.com/ this is where i go. There is also one in Harley street in London. I see you’re from Ireland so im not sure where there is one there but there must be someone who is just as good!
    i just urge you to look into other options instead of relying on your doctors because unfortunately they are not always right.

    Oh and I didn’t drink for those 2 years, i have had a couple drinks and they didn’t seem to do anything to me, but if you are still having symptoms of UC maybe its best you didn’t or just stick to a couple. I also went through a stage of eating from the book ‘breaking the vicious cycle’ i did this for about 20 days. I then ate normal again … but i never eat take aways anyway, also i completely stopped any fizzy drinks or energy drinks out of my life.

    All i can say is never give up and you will be ‘normal’ again :)
    All the best!

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