I was diagnosed with ulcerative colitis back in July of 2011 and didn’t take it too seriously in the beginning because didn’t realize what a flare up was, just thought I had to use the restroom a lot was the extent of this disease. I’m 27 years old living in Maui, HI.
My current Symptoms:
Inflammation, abdominal pain, uncomfortable, blood, urgency, fatigue
My UC Story:
Ok, so I got diagnosed in July 2011 and for the first 6 months made small efforts to look up the disease and tried to eat a little better, but didn’t see the extremity how this disease can take over you. I was working alot, always on the go and just always thought seeing blood and diarrhea was going to be my reality of this disease, which I had come to grips with and accepted. Last month, March, my flare up got more extreme and I realized the extent of how this disease is something you can’t take lightly in which I was doing before. The biggest symptom for me was abdominal cramps and fatigue in which I could not go to work or function at all which is something I don’t like to do. I workout almost everyday, (crossfit) and it really made me realize how tired and fatigued I was. This is when I realized that I needed to seriously start researching, getting recipes, talking to people, and making this a focus. During this time, I was able to get a colonoscopy to ensure it was only ulcerative colitis and I will be starting additional meds tomorrow, a month later….
I’m writing cuz of my frustrations I have with this, on how up and down it is…I will start to have physical pain, which I don’t take lightly cuz I feel like I’m a pretty strong woman, then I will eat well and rest, take care of myself and then test something new when things get better and I’m back at square one again. Then if I just stick with the foods I know, I get bored and annoyed with them, then have this starvation for more food. I have been talking to my family about this and it seems like they just don’t understand. It’s such a trial and error process that it can be hard to keep staying positive all the time.
Then today, I feel like I ate pretty good food, I think anyway, cherrios (I have read certain places that cherrios are ok during flare ups and they seem to help with my pain aspect plus I enojoy them too), gluten free pasta with shrimp (light on spice), scrambled eggs and while I was heading to my class I ended up having an episode that really just broke me down. Made me have to pull over twice, miss my class, clean up, and just feeling embarrassed by how I lost all control.
I think my acceptance to having a chronic disease is what I’m trying to deal with. I feel like I do have a good support here in my home but it still is hard to really open up to them I guess. Dealing with the fact that I’m constantly going to the restroom, constantly hungry, constantly going through ups and downs of being fatigued, emotionally embarrassed by the constant conditions, constantly dealing with doctors, prescriptions, medicine bottles and feeling alone.
I have always said that this was bittersweet for me to get this because before I got diagnosed I was in the process of trying to get healthy, trying to get sober, trying to eat better, having healthy habits of excercise and just being healthy. I quit smoking after 9 years and a couple months later got diagnosed. This bittersweet feeling makes me try to stay positive but I have my bad days, I guess. Today is that day.
I’m writing today because of my not one but two accidents back to back that really just crushed my positive spirits and don’t feel I can really talk to anyone because:
- I’m embarrassed
- feel like friends and family, lover is annoyed with me of constantly mentioning it or venting about it
- feel like no one really understands how it can bring you down and make you second guess you’re overall thinking
- Feel like people don’t really think it’s that big of a deal
I’ve been reading plenty books that some are contradicting each other but just trying to just eat anything that I know will not give me abdominal pain. That is my biggest wish this could stop. I’m hoping this next month of enamas and suppositories will bring it down but just trying to just accept and deal with it and remembering that it is CHRONIC is what I’m working on. If anyone has any feedback I’d really appreciate it. Thank you for reading.
Where I’d Like to be in 1 Year:
I would like to have a strong recipe food health ROUTINE, of being healthy, more knowledge of what this disease is, and a structure of my vitamins, supplements, medicine so I can go back to working on my other life’s goals and aspirations.
Colazal I have been on for 6 months and see it work but feel like it’s worthless during a flare up. Enemas too are hit or miss as well during a flare up. I have trouble holding it throughout the night.
written by Kelly