28 and Newly Diagnosed

Introduction:

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.

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
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