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One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Anyone Else a Newbie in Their UC Diagnosis?

Erica m fIntro:

Hi, I’m Erica and I have UC. I’m 23 years old and have been diagnosed for about 7 months. First off, let me offer a forewarning; I am currently on the “prednisone makeover” from my first flare up, so if I either ramble with something along the lines of pointless rage or exaggerated frustration, you all know why! (apologies in advance!). I started to get sick last July, and then steadily got worse until I reached a point where I had to seek more specific care. After a failed trip to the Immediate Care Center, Emergency Room and attempting to make an appointment in the GI department (which was damn near impossible) I felt hopeless and sicker than I’ve ever been in my life, with no end in sight. Then I was introduced to the angel God-send that is my current GI doctor. He got me in right away, scheduled me my first colonoscopy (first time too, and let me tell you, what a pain in the butt [pun intended!]) and diagnosed me a lmost immediately. Instead of feeling initial terror and shock, all I could feel was relief that I finally started to feel better!

Some more about Erica:

Hmm, why does this feel like I’m filling out an online dating profile? -_- Anyway, I’m surprisingly good at parallel parking, I’m a pretty funny gal and I love baseball (watching it, not playing it!) If you want to know anything else, just ask :)

Symptoms:

Well, this will be quite the list! A shorter questions would be ‘what symptoms don’t I have?’ There’s the physical symptoms, the bloody stool, frequent and bowel urgency, abdominal pain and then there’s the fatigue, stress, and the feeling of being constantly drained, on every single level. It’s an interesting contribution when you think about how being on Prednisone makes you feel like you can bulldoze an entire house with your fist. And girl, don’t even get me started on the side effects! **Que the “ain’t nobody got time for that” meme**

Erica’s Story:

Is there anyone else out there who’s in the mid 20s and relatively early in their diagnosis? I’ve been searching for a UC buddy to connect with, and have had no such luck. I’ve joined a support group, but I must admit I was hoping (and expecting) to meet more younger people since this is generally diagnosed between the ages of 15 and 30. The individuals in my support group help, but they are mostly Crohn’s patients and much older. Although don’t get me wrong, this can have its perks too; like their ability to offer any insight that has helped them get through the initial adjustment phase of having IBD, what medications/treatments have worked for them, etc. I’m appreciative just to be able to talk to some fellow IBD patients, but it doesn’t really satisfy what I am really looking for. I just want to find someone relatively close to my age who is pretty early in their diagnosis (and someone UC – not Crohn’ s). Is that really so hard? Gah! It feels impossible sometimes.

As an individual living with UC, I try to stay positive as often as I can.

I’ve always wondered why people I’ve read about in blogs who have UC/IBD are at such a high risk for depression. Now, I am finally starting to understand where this comes from. After only getting to enjoy remission for about 2 months, and now going on my 3rd month of a flare up, let’s just say the depression is starting to sink it. I’m cranky, depressed, alcohol-deprived and thus have not gone out socially in ages. I don’t feel like myself anymore, because I’ve been on this stupid prednisone. Sometimes it feels like I will never get off of it! Alas, I must keep telling myself there is a light at the end of this bloody tunnel.

My family has been as supportive as they can be, but none of them have really taken the initiative to understand what it is (except my wonderful mother). I’ve had it for over 6 months, and around my family it almost feels like something that shouldn’t be talked about! That’s the thing about invisible illness; everyone assumes because you look fine on the outside, you’re not really sick. Of course, they know you have it, but they forget because you don’t “look sick”. I cannot begin to tell you how frustrated this makes me. I just want my family to educate themselves, so they can get a better understanding of what I go through and how they can support me (for example, the top 10 things NOT to say to someone with UC). I’m not saying I want sympathy and people to feel sorry for me, but would it be so bad to have my family ask me once in a while “What do you need? How are you doing/coping? Is there anything I can help you with?”

At the moment, my biggest concern is getting back to remission (if I’ll ever get there! No, Erica, don’t go there…stay positive, you will get through this!) My medication hasn’t worked too well thus far, so I will be adding the Humira shot to my daily doses of pills (not including prednisone). I’m hopeful it will speed up this darn “prednisone makeover” crap and elongate my remission. :)

Okay, that’s enough of the negativity. I swear, I actually am a very positive person. Time to count blessings! Well, of people I’ve read about with UC as well as individuals stories from my support group, I quickly realized how lucky I was that A)I found the perfect GI doctor on my first attempt, B) the time from when I first got sick up to my diagnosis was much shorter and apparently less painful than many other stories I’ve heard and C) that for the most part, my medication has helped and I’ve responded fairly well to it.

In generalities though, from a day to day basis, I feel like I am functioning pretty well. I work a full time job, don’t find I need to wake up in the middle of the night due to UC symptoms anymore, and don’t feel any pain (or even remember I have it). That’s just it though, I’m “functioning”. I don’t want to be just “functioning” I want to live a full quality life!

Medications:

My doctor and I have tried Lialda, but it doesn’t seem to be doing a spectacular or good enough job, since I am now going to be starting the Humira injection in addition to the Lialda. We’re hopeful this will be the kick to t I need to be this colitis and flare up into control again. I have mixed feelings about the new medication, but for the most part I am trying not to over think it because I just want to feel better. I’ve forgotten what that feels like.

written by Erica M

submitted in the colitis venting area




23

29 Responses to Anyone Else a Newbie in Their UC Diagnosis?

  1. Beth E
    Beth Emory March 23, 2015 at 6:00 am #

    I was diagnosed in January. I got a little better in February. Actually went out with my friends a few times. I went down hill through March and can barely leave the house for more than an hour. Raised the prednisone dose and taking Lialda as well. My GI is also talking Humira. I am 40 but have never felt this old. I too am usually very optimistic and outgoing. That is slowly fading too. I don’t think anyone understands why I can’t leave the heating pad. I have IBS on top of the IBD right now.
    I hope you find a friend close by you can connect with. Best wishes to you.

    • Erica M
      Erica March 23, 2015 at 6:26 am #

      Thank you for your reply. I have just started Humira in addition to my Lialda, and so far so good. It is taking forever to get off this prednisone, so now that I finally reached 20 mg.

      Good luck to you! If its any consolation, I would also encourage Humira. I have heard a lot of positive things about people who take it.

    • Jessalyn March 27, 2015 at 11:50 pm #

      I’m 21 and was diagnosed when I was 20. I’ve had a few flare ups since the diagnosis and am still not completely back to normal. I also take Lialda and prednisone when I need it. I hate the side effects of prednisone but it’s always been a life saver. I’m still kind of learning about this disease, but I’m always open to talk to people if needed!

  2. melita March 23, 2015 at 6:04 am #

    I’m 21 diagnosed in 2013

    • Erica M
      Erica March 23, 2015 at 6:22 am #

      Really? Its encouraging to finally find someone who’s also young around the time of diagnosis.

  3. Tom
    Tom March 23, 2015 at 7:18 am #

    I was 22 when i was diagnosed in 2011.

    I now have a permanent ileostomy and no colon but we don’t all end up like that!

    Have you tried on Facebook? I’m no longer on FB but when i was, i was a member of about 10 UC related groups. worth checking those out.

    All the best

    • Erica M
      Erica March 23, 2015 at 5:15 pm #

      Hi Tom,

      I have tried Facebook, but maybe I’m just not searching it right. It can seem a little intimidating when there are so many out there.

      Thanks for the advice, I’ll give that another try.

  4. D'Eria March 23, 2015 at 7:28 am #

    Hi Erica,

    First off let me say how good it feels to finally hear about someone my age and going through what I go through. I am 23 years old and I was diagnosed with UC last year in February. I am also functioning pretty well, but with the occasional flare up. I choose to stay positive that I will go into remission one day (soon I hope). I was just on a two-month break as well until recently I had another colonoscopy and went into another flare up :/ My GI has me on Apriso and I am taking probiotics. Please let me know how the Humira works for you. This is something that we can get through.

    • Erica M
      Erica March 23, 2015 at 5:18 pm #

      Yes, that’s exactly how I feel! Let me know if you ever want to chat, its so good to hear from someone who knows what I’m going through and is someone I can relate to.

      • D'Erica March 24, 2015 at 7:12 am #

        Yes and the same for you as well!

        • Erica M
          Erica March 30, 2015 at 7:53 pm #

          D’Erica! I just canceled your friend request forgetting this is where I know you from. Sorry! Can you send it one more time? I don’t know if I will be able to find you.

  5. Yasmin
    Yasmin Bond March 23, 2015 at 8:24 am #

    Hi Erica,

    Sorry to hear you are going through such a tough time. I’m 25 and have been diagnosed for 3 years. 2 years of hell and 1 year of not so bad. The last few months have been pretty nice!

    You sound positive and outgoing much like me and that will shine through no matter what. Try and stay focused and make little goals. Read into diet changes and lifestyle changes rather than focusing too much on trying to be better. If it helps only allow yourself to look into the toilet once a day and go by that marker. Obsessing on what is and what isn’t in the toilet will only make anxiety worse.

    I’ve actually had FMT – it’s not for everyone – but after about 1 year of being on medications by body started to reject them and I had to try a different more natural approach. I’m happy to say I’m doing pretty damn good (not perfect) and I feel like I’ve come full circle.

    If you fancy a UC buddy then let me know. I’m on facebook if you want to chat.

    I’ve posted on here a few times and will send them to you if you like for a read!

    With regards to your family, honesty is best but they might take a bit of time getting used to the idea. Maybe they are finding it hard to see you poorly, rather than deal with the actual UC itself. My mum still gets upset when I talk to her about certain things and when she saw my concoction of vitamins and supplements that I take the other day she started to tear up. Your family will get used to it and your mum will be your rock :) Good luck! x

    Yasmin

    • Erica M
      Erica March 27, 2015 at 5:07 pm #

      Thanks for the encouraging words, Yasmin! I’d love to chat sometime, it might be nice to finally have someone to relate to who really does understand what I’m going through.

      Here’s my facebook if you want to add me : https://www.facebook.com/erica.murillo.370

  6. Cheyenne March 23, 2015 at 9:19 am #

    Hello Erica,
    I really hope you go into remission soon and feel better. I was diagnosed when I was 24 and I am now 28. I live in southern California and would love to be here if you need to talk. here is my FB page if you would like to add me https://www.facebook.com/cheyenne.salcido.7

    A little about myself is that I’m currently on Pred and weaning down from my second flare. My first flare was around the same time last year. They tried a bunch of different meds but I ended up on Pred that time and then Imuran after. I was fine for about a year and then went into this current flare. I am on Imuran, Pred, and started Humira. Doing ok “so far”

    Best of luck to you!!

  7. Ashley March 23, 2015 at 2:14 pm #

    Hi Erica

    I’m 31 and live in western Canada. I was diagnosed with UC about 11 years ago HOWEVER up until 2 years ago it was so mild I was Never on any medicAtion except the occasional suppository when I’d have a minor flare. After I had my son at the beginning of 2013 things went to hell and I ended up hospitalized for a few weeks trying to get things under control. I went on Remicade and Imuran and they have been miracle workers. I had a minor flare in July last year (just a tiny amount of bleeding but it stopped as soon as i added the salofalk suppository back in the mix) and since then I’ve been really good and in technical remission since October.
    I hope the humira does the trick for you!

    Ashley

  8. Adriana de São Vicente March 23, 2015 at 3:50 pm #

    Hi! I was diagnosed 2 years ago this month actually. I was 17 so it wasn’t a rather pleasant experience but it only took 3 months to diagnose
    Well now I’m 19 but have not been on remission for almost 7 months
    But I kinda learned to live with it, I just always have to know where is the nearest bathroom and learn to make a good sprint :)

  9. Eric March 24, 2015 at 8:19 pm #

    Hi Erica/everyone. I’m now 28 and was first diagnosed 5 years ago. Would love some people to chat to about UC that know what each other is going through. Let me know and we can exchange emails/Facebook. I live in BC Canada if that matters to anyone:) Hope everyone gets the relief they need, I know I could use some right about now!

    Eric

  10. Greg March 30, 2015 at 1:59 pm #

    Hi Erica,

    I’m 27 was just diagnosed with UC at the end of last month (February) and it’s surprising how good it is to read about someone else in there 20’s dealing with this, and everyone else’s comments. I’ve probably had this issue for more then a year but I thought it was something I got from being in mexico (water maybe) and would go away turns out not so.

    At the the GI doc’s I’m always the youngest and I thought that being on the other side of my 20’s I would start being around people my “own age” seems not (not that that is anything new for me really).

    I have been taking Lialda since I was diagnosed(not true I waited a week to talk with my doc after I found out the cost $$$) but so far it hasn’t done anything noticeably better so I’m actually procrastinating calling my doc to ask for a new alternative prescription which is how I found this site googeling alternatives and other info on UC. Which of course has the side effect of making me a bit down at all the information I’ve been reading.

    I connect with a lot of what you said but the functioning part really hit home for me and as far as living life. I’m not a super extrovert or anything but I do like to have some fun and go out with friends and UC has killed a bit of it for me. I could probably keep typing about more connections but I’ll stop. Regardless I’m trying to stay pretty positive about it and hoping I will get to a more stable state.

    Thanks for writing the post its just what I was looking for. Now to make that call.

  11. Erica M
    Erica March 30, 2015 at 5:51 pm #

    Wow, it is so good and relieving to find that my words have encouraged so many others to come forward and empathize with everything I’ve been feeling! I can’t tell you how thankful I am at all of your comments/replies.

    Sorry to hear your having such a rough time. This is definitely an adjustment, that’s for sure. I know I’ve had some struggles myself in dealing with this on so many different levels. Yea, meds can get expensive, though with insurance it doesn’t cost me more than $30. Best of luck to you.

    If you ever want someone to chat with, look me up on Facebook! Us UC people need to stick together! :)

    https://www.facebook.com/erica.murillo.370

    • Greg March 31, 2015 at 10:42 am #

      Sent a request, and I’m super jealous of your med costs. Mine came close to 1k for a month but I’m going to trying something new and cheaper. Thanks for the response!

      • Erica M
        Erica March 31, 2015 at 10:57 am #

        Really? That’s what my Lialda costs me, without insurance, for a month of doses. if you don’t mind my asking, do you have insurance? because the 1k is the retail price without insurance coverage. anyway, talk with your gi doc. mine told me to call if i ever couldn’t afford the meds i needed. Maybe they can help you work something out, because you shouldn’t have to miss out on treatment (especially if you found one that works!) just because it’s too pricey.

        Thanks for your response too! It really is a huge relief to finally find some other 20 somethings with uc and relatively early in diagnosis. are you taking prednisone at all? when i first got diagnosed, i had to start on 4 Lialda and 60 mg prednisone/day.

        • Greg March 31, 2015 at 1:00 pm #

          The exact cost is around $750 and I do have insurance. My Doc was quite surprised when I told him about the cost. I’m in the saving plans which takes off $100+ which is better then nothing. He did talk a bit about some alternatives but I only knew about one or two other alternatives at the time.

          I figured I would just bit the bullet and see if it would even work since at the time I didn’t know much of anything about UC. I’am taking 4 Lialda but no prednisone. I actually just found out about that recently doing some searching. I might bring that up with my doc next time I see him. It hasn’t really worked so I’m hoping the next one I try will and will be cheaper.

  12. D'Erica March 31, 2015 at 5:56 am #

    Hey Erica, check your FB! I sent a request

    • Erica M
      Erica March 31, 2015 at 10:58 am #

      I saw it, but I think I accidentally deleted it and now I can’t find you. can you send it again?

  13. Helene April 2, 2015 at 9:59 pm #

    Hi I’m Helene! I’m currently 18, but I was diagnosed last November when I was 17. I’m still so new to everything, and confused about most of it. I take Lialda too but only two tablets a day. I had no symptoms since December but just started a flare up two weeks ago, unfortunately. My doctor started me on 4 pills a day, but no change. It sucks having it in college my freshman year and is really hard to handle with a social life, but I try anyways. Luckily my college friends are very supportive since I live so far away from college, and I’ve been very fortunate to have them. I wish everyone luck, if you have any advice let me know!

    • Greg April 3, 2015 at 11:43 am #

      Hi Helene,

      Good luck going to college and dealing with everything. I’ve been taking 4 pills a day and nothing so far and going to suggests something else to my doctor. I’m glad you have a good support system with you friends. My 1hr30min+ commute to work is not fun and I always know or ask where the bathrooms are on the train… I hope your first year of college goes as well as it can.

    • Erica M
      Erica April 3, 2015 at 1:25 pm #

      Hi Helene!

      Thanks for your reply! Sorry to hear you’re having such a rough time. I can totally relate. Having it in your freshman year of college sounds like it would be so tough, but luckily it sounds like you have a strong support system (which I think is key!). My doctor always tells me not to give up on my social life. Even if you’re feeling down on yourself, or stressed about your symptoms, don’t ever turn down a night with the girls (or guys, as long as you’re around friends). Stress correlates to our symptoms, and if we run ourselves into the ground with anxiety trying to control our symptoms we miss out on a lot of stuff. Let me know if you ever need anything :) I want to be just as much of a support for others as they have been for me, because we of all people understand how much we need it.

  14. Chantel C May 6, 2015 at 9:01 pm #

    Hey, Erica!

    I’m probably as much of a newbie as they come. I’m 24 and was just diagnosed last week! I took a prednisone pack thing for a week (finished yesterday) and am on Lialda currently. I’m still learning all about this (which is completely overwhelming) and adjusting to the lifestyle changes (which includes no more coffee….help!! :( haha), so I’m not sure how much help I would be, but I’m definitely here if you need someone to talk to! :) You can hit me up on facebook if you’d like! https://www.facebook.com/chantel.carusone

    Chantel

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