My name is Kelly and I am a mother to 2 wonderful and high energy kids. I was diagnosed in Feb 2009, shortly after the birth of my first child. I work full-time and love my job, although it can be very stressful at times. I am desperate to find a way to begin living a normal life. I want to be able to enjoy my children and spend time with them while they are still young. I want to have the energy and love for life that I used to experience before this horrific disease took over my life!!!!
Some more about Kelly:
I love to travel and would do so more often if I had more energy and time. And if my kids were a bit older. My daughter is 5 years old and my son is 3 years old, so it isn’t easy getting time away right now.
I also love photography and am trying to learn more about the different ways to take more “creative” pictures.
I HATE cooking, although baking is okay. Our crock pot is my best friend most days since it requires little effort in the kitchen.
My current symptoms are abdominal cramps and blood/mucus in my stool. I can have an extreme variance in my bowel movements from month to month. One month I may only poop once a week (severe constipation and bloating) and the next month I may go several times a day. I tend to have nausea during a flare and most foods sound terrible to me. I also experience extreme fatigue and joint aches. Currently my flare has caused me to run a mild fever for 10 days straight.
My Body is Trying to Kill Me
My story begins with noticing blood in my stool during my first pregnancy (around 5 months). I didn’t have any other symptoms outside of this. After I gave birth, I had a colonoscopy that showed what the culprit was-Ulcerative Colitis. My symptoms have progressively become worse as each year passes. 2013 has been absolutely the worst yet with 3 ER visits associated with the disease. Most recently I have noticed extreme fatigue that is making it hard to work- or do anything for that matter! My joints ache and the best way I can describe the feeling is that it feels like the aches that you get with the flu. I am looking to find others that are experiencing similar symptoms and how they are currently handling their normal day-to-day tasks.
Some questions I have about UC are:
- What have you done to ease flare ups with UC?
- What foods do you typically eat that seem to soothe your stomach during a flare?
- Has anyone experienced a fever or nausea with UC?
- What medications have you found useful?
- What medications have you found to have the worst side effects?
- How can you get some of your energy back and what do you do to help control joint pain associated with UC?
- ***How do you tell your boss when you are experiencing UC symptoms and are struggling to work?
- How do you tell people around you without giving out too much information?
- What are some ways that have helped you stay positive when you are feeling your worst?
- How do your kids/husband/family/friends feel about your disease? Do they express a feeling toward you of being a burdensome part of life now with UC?
- What foods tend to cause the most gas/bloating?
- Has anyone experience a different smell of their stool/gas after being diagnosed with UC?
I have tried everything except the IV Meds. Most meds have not worked very well, if at all. Asacol, Sulfa, canasasuppositories, enemas, and prednisone. I will never take Prednisone again as I was borderline psychotic while taking this drug.
written by Kelly
submitted in the colitis venting area
UPDATE (January 29th, 2014):
Thank you ALL so much for the useful information you have sent to me over the past few weeks! It took me some time to get back with you as I have really been struggling with some recent news I have received from my GI doctor. I had been VERY sick for a large part of December/January with the worst abdominal cramps I have ever experienced. For 2 weeks straight, I had a fever of 99-101 and terrible joint pain. The only way I can describe the joint pain is that is felt similar to having the flu(body aches, pains, etc.). I ended up in the ER due to the pain, and after a scan of my abdominal area, they sent me home saying that it was just inflammation due to my UC and that they would send the results to my GI doctor. After receiving the ER results, she (my GI doc) scheduled me for a colonoscopy right away. This was my 3rd one in 5 years! Happy New Year to me, right?!! There was concern that my UC had spread to include my entire colon…and the y were right. My condition is no longer considered UC and I have since been diagnosed with Chrohn’s disease. My entire colon and part of my small intestine are now inflammed and the doctor said my disease has speread very quickly and aggressively. They also found a small ulcer that and are trying to treat it with oral meds. I have been in complete shock since my recent diagnosis of Chrohn’s and have been taking some time to try to “wrap my head around” all of this craziness. I have a wonderful and supportive husband that is always willing to help me out– and great family and friends that have been eager to help out in any way that they can.
Moving forward, my doctor is recommending biologic meds to control my symptoms and if I agree, I will begin to receive these treatments at the beginning of February. I am currently considering Remicade as this has been around longer than the alternative biologic options, but wanted to reach out to anyone that has had experience with this.
Thank you for all of your supportive and helpful comments over the past few weeks. I feel fortunate to have found such a great group of people to help me in this journey!