28 and Newly Diagnosed

Alexis having a drinkIntroduction:

I am 28 years old and recently diagnosed with UC within the last 6 months have been battling the disease for almost a year now. I am married with a 156 lbs. Great Dane for a child. Future plans to start a human family lol as soon as I can get my UC into remission. I currently work in the industrial chemistry research and development field so yes I’m kind of a nerd. I enjoy riding motorcycles, hanging on the lake, crafting and gardening.

My Symptoms:

Bowel movements 3+ times per day.
Blood in stool
Stomach cramping and pains
Weight Loss
Joint and muscle pain
Fatigue
Urinary Tract Infections (suspect fistulas as cause)
Mouth Ulcerations

My Story:

I am recently diagnosed with UC within the last 6 months, have been having active symptoms for almost a year now. Symptoms started with frequent bathroom breaks per day that contained blood, stomach cramping and extreme fatigue. After a couple of weeks of hoping it would just magically disappear, I saw my primary care physician for the issue who sent me for my very first barium enema (total embarrassment to say the least). After inconclusive results from that test, a round of antibiotics and persisting symptoms, I was referred to my current G.I. Specilist. An extensive round of testing was ordered by her involving fasting, drinking horrible unmentionable things, stabbing and poking. A positive diagnosis of Inflammatory Bowel Disease (no surprise considering I have a family history of it) was revealed from the tests. I am currently recieving treatment for UC but it is strongly believed by my doctor based on my current symptoms that I may in fact have Crohn’s Disease. My treatment plan began with Rowasa a nightly enema and multiple doses per day of Asacol. After seeing no results, I was put on my first round of steriods in addition to the above meds. I immediately began to see symptom relief from the steriods but after coming off of them relapsed instantly with symptoms even more severe then before.

After much debate of what would be best for me my doctor and I decided to bump up the meds and put me on another round of roids and an immuno suppressant called Imuran. I was very nervous and hesitant about the Imuran considering the list of potential side affects including CANCER, but ultimately I decided that feeling better now was my main concern. I had reached a point where I had felt bad for so long that I forgot what it was to feel well. I have been on the steroids and Imuran for about three weeks now, I initially felt great however in the last week I have started to have intense joint and muscle pain during the evening hours of the night through to the a.m. hours. My doctor suspects that I may be having an accute reaction to the Imuran and has taken me off of it for the next week to see if I improve. If it is in fact the medicine causing the joint pain than I unfortunately will not be able to remain on it and will have to be switched to another immuno supressant drug (Remicade) that will be administered via I.V. infusion. This literally scares the crap out of me considering I hate needles, but on the upside I won’t have to take a pill everyday at least. If it is not the Imuran however I will be referred to a Rheumotologist in addition to my G.I. specialist to addresss this new and very painful issue.

Alexis with her friend

My family and friends have been extremely supportive throughout and have helped me to keep things in perspective. I think in some sense it has brought my husband and I closer together more than ever. Teaching us not to take each other for granted because the things we always thought were guaranteed in life not always are. If someone would have told me a year ago that I was going to be diagnosed with an uncurable disease I would have called them a liar. It’s difficult to think that at 28 years old I now have a disease that will affect me and my family for the rest of my life. I try to stay focused on the positives and the good days that I do have, it makes getting through the really bad days much easier. There are still many questions that I have surrounding my diagnosis including treatments, living with the disease long term since I was diagnosed at a fairly young age and how UC and the meds used to treat it effects pregnancy. In fact that was the main reason I decided to join the website. I hope to not only get answers for the questions that I continue to have but also provide insight to other people who are battling the same daily struggles as me.

Where I’d like to be in 1 year:

Living a happy and symptom free life :)
Possibly starting a family.

written by Alexis




8 Responses to 28 and Newly Diagnosed

  1. Sharon September 14, 2012 at 9:35 pm #

    Hi Alexis.
    Welcome to the group. You’ll get a lot of info and support here. The folks in this group are really great. I was diagnosed a year ago at age 57 and am currently coming into remission after my 1st flare which started a few months ago. I’m on Asacol and steroids again, but my G.I. doc keeps pushing remecade and telling me that I can’t maintain on seroids. I hate the idea of being on any medication at all. To me, they are all poison. But that’s just me, I guess. To keep my joints from hurting so much, I do yoga and stretching. If you have any questions, feel free to ask. I hope you feel better soon.
    Sharon

    • Alexis
      Alexis September 15, 2012 at 7:57 am #

      Thanks for the yoga suggestion Sharon!

  2. KK-SCDer September 15, 2012 at 8:40 am #

    Alexis,

    Hopefully you have seen some of my comments on other posts, but if not I will repeat them here. I really recommend that you try the Specific Carbohydrate Diet. No matter how many times you GI will tell you diet has nothing to do with your symptoms, I think it’s clear to anyone who has tried altering their diet in any way that this is false. The testimonials on the web from people who have had success with SCD speak for themselves, and if you really have only have UC for about a year, then SCD may be able to help you a lot faster than some of the people who have had it for a while (this is not a guarantee though). It is undoubtedly a difficult (and expensive) diet, and you’ll probably say, ‘Well, I could never do this!’, but I really believe that this diet works. Commit to it for a month and see for yourself.

    • Alexis
      Alexis September 16, 2012 at 12:47 pm #

      I am strongly considering this diet in fact I am thinking of seeing a nutritionalist to help educate me about some different diet options out there specifically the SCD. Have you or anyone else seen a nutritionalist found it to be helpful?

      • KK-SCDer September 20, 2012 at 1:12 pm #

        Seeing a nutritionist is a good idea, but a lot of them have their own methods of approach. I went to see one a few months back who was all for me starting a diet, but tried to get me to take some homeopathic meds which were not SCD legal. Just be careful with nutritionists. If you decide to start SCD, you need to stick to it 100%. I guarantee it will help.

  3. Bev September 15, 2012 at 1:22 pm #

    HI Alexis,

    Ain’t that the truth! A stupid disease that we get to put up with for the rest of our lives! Lucky us…

    Your story really reminds me of my own. All the drugs…and eventually, they either stop working, or, make us sicker in one way or another. I like the way you said ‘this new and very painful issue’ regarding the joint pain…..Right? It’s like, what else can we stand or be put through….I too have this horrible joint pain that I never had before. I just power through it, because I don’t want to have yet ANOTHER drug prescribed…I wonder sometimes if people like us keep the pharmacies up and running. I don’t want to think that way, but I can’t seem to help it…The doctors seem to just LOVE prescribing more and more meds to us. Mine anyways.

    I am off all the meds now because they made me feel terrible. They all only worked for awhile, and then stopped. When the doc recommended steroids, imuran, and remicade, I said NO MORE! I had startted taking a really good 50 billion strain probiotic, and after a few weeks, was feeling so good (cramping, urgency, nausea, atc were gone), that I decided to stop the asacol I had been taking for 13 years straight. I felt even BETTER after I stopped the drugs! I was amazed. I took asacol for so long, I thought I was just feeling how a person with UC is supposed to always feel Shitty in a million different ways!

    Anyway, I have been med free for 7 months now, and am taking 1 probiotic capsule per day along with L- glutamine, which healed the mucosa of my colon and took the bleeding away! I have not felt this ‘normal’ since before I was diagnosed with UC, in 1999! I also take one 4mg capsule of astaxanthin, a natural anti-inflammatory, once per dya, just for good measure.

    Cheers for now…and thanks for sharing your story. It brought it all back to me. I really hope that you can get where I am now I am thrilled these days!

    Bev:)

    • Alexis
      Alexis September 16, 2012 at 12:54 pm #

      Thanks for sharing your story with me Bev! It’s encouraging to think that someday I may too be able to get off the meds however with being newly diagnosed and still in the middle of an almost year long flare, I fear that a drug free life is a ways in the future for me. Still focused on getting into remission and hopefully being able to maintain it once I do get there. I am making an appointment with a nutritionalist soon, looking for other options besides the meds. I was just switched to 6 MP to see if I have joint pain with that instead of the Imuran, hopefully not because I really do not want to be put on Remicade which is my next option, it is quite scary to me.

  4. Marce September 20, 2012 at 1:58 pm #

    Hi, sorry you have UC…I hate IBD. My 10 yr old son has been trying to figure how to stay in remission since 2010. I wish you the best…I agree with your statement about how this stupid disease can bring a family closer. The ray of sunshine when we feel we’re under the dark cloud. We play the “3 things that could be worse” game. It really helps right before the Rem infusion. Good luck with your treatment! Hugs !!

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