I really didn’t intend to take a little break after my remission post, but I was exhausted. Instead of napping after my colonoscopy I stayed up and ate myself into oblivion, and was exhausted and constipated for days. Didn’t feel better until New Year’s Eve and of course I wanted to go out, but due to me just recovering from a cold and a colonoscopy, I was starting to think it was not the best idea. And since plans were still undecided it was starting to stress me out; made my stomach hurt lol, I decided not to go out. So my mom invited me to go to church, and I initially hesitated because I am not the most religious person, but why not start the New Year in a positive environment. I went to church on New Year’s Eve and it was one of the best decisions I made. I left feeling better, mentally, and more optimistic about my future . . . I kind of wish I would’ve made an effort to go to church more often last year when I was really depressed, but I spent many Sundays in bed.
I was very excited about the news of remission, it means we found a drug that works!! Since I’m still fairly new to having this disease it was hard for me to grasp that in order to stay in remission I have to continue to take this drug (Humira). . For some reason, I thought remission was “Yay! no drugs” But remission doesn’t mean cured, these meds can’t cure IBD because there is no cure, and once that sunk in; I’ll admit I felt kind of sad.. I have come to accept that I will be on medications for the rest of my life? . It’s kind of scary, and is it safe to be on Humira for a long period of time? Will it continue to work? As usual i like to stress myself out over all the possibilities . . . . I just hate being surprised. . .but I have no control over this disease. Like my friends and family have said in the past few days, “Krystal take this as a positive, and tackle the issues when they come” . . . . This is something I will train myself to do!
Living one day at a time and remaining hopeful! Happy New Year!
Day 6 – Spoiled Guts
It was my last day in Texas and I was sad because I had fun and it was a beautiful sunny day. Even though the weather was nice I still had not gone to the bathroom in 2 days! I was suffering! Completely bloated, nauseous, and the symptoms only got worst on the airplane. I looked like the guy from the fiber one commercial. As soon as the plane landed in DC, I was completely exhausted.Before getting on metro to go home, I decided I should stop and eat before I pass out and ate at the first place I saw. OF COURSE it was Mexican food lol
Didn’t see another food spot close by, so I just accepted it and ordered a taco salad with cheese and beans, hoping it would make me “go” . . . . and it did not. By the time I got home my late night snack was a bowl of oatmeal and lemon water, I was trying to find anything to clear me out!
Day 7 – Cleansed 😉
I went to the bathroom and for the first time in 2 days I did not feel bloated, it was a good feeling! Unfortunately, that good feeling did not last because work was very stressful. Purposely took a short walk during lunch to ease my stomach pains. Didn’t leave work until 6:30pm and with the horrible commute didn’t get home until 7:15pm which isn’t too bad, DC/NOVA traffic is horrible!! But I went home with work on my mind and barely any food in the fridge. My dinner was a sandwich with gluten free ham & turkey, cheddar cheese, and a glass of wine. YES a glass of wine, I don’t care how much it’s going to hurt later, all I know is that I’m gonna sleep well tonight 😉
I don’t know if these past 7 days have been interesting, exciting, or helped spread IBD awareness, but I was happy to participate and read other #7daysofIBD experiences. I love my blog and will continue to spread IBD awareness is my own quirky way 🙂
Spent the day in the museum district in Houston and had an interesting experience in the museum of Fine Arts. I had a bottle of water in my hand and I was told to either toss it or give it to coat check. I wasn’t willing to do either. It was a closed bottle and the main reason why I had it was to take my pills throughout the day. At the coat check I explained how I need my water to take my pills, and how you can be in a museum for hours. The woman in coat check stated they either take it or put a “medical permit” sticker on your bottle, I chose the sticker. Didn’t realize how hardcore having a bottle of water is in a museum.
In honor of Crohn’s & Colitis awareness week, December 1-7, I decided to participate in the #7daysofIBD campaign sponsored by Crohn’s & Colitis UK. You take a picture for the next 7 days that display your life living with IBD. Since we are a very visual society these days, a photo can speak a thousands words. So below is my Day 1. For my fellow IBDers if you wanna participate click here for more information.
Day 1 – December 1, 2015
Below is my daily morning routine, filling my pill box for the day. I used to do it for the week but been lazy lately. 10 pills a day is not bad, 7 months ago I was taking 14 pills a day, at least one pill every hour I was awake. That was a very depressing time for me .
Look at what I got in the mail! It is my ‘can’t wait’ card. I’m so grateful to have it, but hope to never use it. It is stored in my wallet, right behind my insurance card. I also need to create a medications list/card for my wallet too. I’ll admit I have more cards in my wallet relating to my health than a good ole credit card. It’s silly to think, but if my wallet was ever stolen I hope the person would feel so bad that they return it lol
I have an appointment with My GI on Monday. I am worried. Just realized I haven’t seen Aunt Flo in a while and according to my app, my period is 10 days late. I know for sure I’m not preggers . . . yeah I’m a little worried lol
I found the above picture from crohnsandcolitis.org.uk. A very active group that I follow on Facebook, check them out when you get a chance 🙂
In honor of World IBD Day I am wearing purple and made a donation to the CCFA. It’s not a lot but something is better than nothing right? 🙂 This world of IBD is still very new to me and writing this blog and being connected to so many fellow IBDers in the blog-sphere has been a wonderful experience. I hope this little blog has opened people’s eyes and increased IBD awareness. It’s a shame there is so little awareness about this disease, because many do suffer and suffer in silence.
As always I remain hopeful and taking one day at a time 🙂
I took a sick day and I’m grateful to say I do not regret it. We accumulate sick leave/ PTO for a reason. But unfortunately, when you have an IBD your sick days can add up, which will eventually worry me. Thankfully, I have a very understanding boss, which I’ve learned is very rare.
I posted a question in a crohn’s/colitis support group on Facebook aimed towards young professionals, asking do you fear your disease can impact your professional life? Should you bring up your disease at your job? Would you ever leave a job even if you had a very understanding boss? The responses were mixed and I noticed the older you are the more pessimistic. “No, I would never leave because finding an understanding boss is very rare”. Some even stated, “bringing up your condition or leaving is just stupid”. The younger people that responded were totally different (millennials! smh), they stated you should not allow your disease to hold you back or impede your professional growth. “If the job is not flexible,then it’s not the right job.” The one thing that both sides agreed on is that you never mention your disease firsthand, because it’s a big possibility that you will be discriminated against, and I totally agree.
In my situation, I had been in my position for over a year before I became sick. So my manager knew about my many doctor appointments because she approved my leave and when I finally got a diagnosis of course she was curious. At first I was afraid to tell, but I’m glad I eventually did. Since I’ve been really sick lately, I don’t know how I could have kept it a secret. My situation is rare, and I’m very grateful for the support I have, but there are resources out there if you do not have support, you do have rights.
In the US you might be able to file for disability. According to the CCFA.org you may be able to apply for social security benefits if your condition is found in the list of disabling impairments, the CCFA pointed out 3 conditions where IBD would fit:
- Disorders of the Digestive System
- Malnutrition or Weight Loss
- Surgical Diversion of the Intestinal Tract
Read more at this link: http://www.ccfa.org/resources/applying-for-social-security.html
CCFA also has an employee accommodation letter template that ask for office placement located near a bathroom; allowed to start work an hour later each day; and other accommodations. Letter may be given to healthcare provider to complete and provide specific needs for the employee. Letter is then provided to the patient’s employer.
Review the accommodation letter here: http://www.ccfa.org/resources/employment-accommodation.html
The CCFA also provides a summary of disability laws and even job search engines for persons with disabilities, CCFA is freaking awesome lol Check out the info here: http://www.ccfa.org/assets/pdfs/employment-and-inflammatory.pdf
The past 3 weeks have been a new low for me, but I am happy to say for the past 24 hours it has been a good day! And this beautiful weather is totally matching my mood. I’ve been out running errands and even attended my first crohn’s/colitis support group through the CCFA. It was a very positive experience, and to meet other young people of difference races with this disease, it was very comforting. It was also great to talk about symptoms in graphic detail without grossing people out, that was pretty cool. I plan to keep attending and the facilitator stated how today was a smaller turn out, so it’s exciting that it might be a larger group next time.
For my fellow IBDers or parents that have children with IBD, I highly advise that you look into CCFA local chapters and their support groups. Writing this blog has been a wonderful experience and my online community has been very supportive, but I will admit, meeting people in your area that have the same disease is even better. Check out the link below.
In regards to my blog, its being featured in a new online blogger magazine titled “Twenty Somethings” which is freaking awesome! And if you’re a blogger in your 20’s, they are looking for new bloggers for the summer edition, so check it out! https://issuu.com/twentysomethings/docs/twenty_somethings_-_edition_1/1?e=0
Lastly, I have the song “Whistle while you work it” stuck in my head. I heard it on Pandora recently and it put a smile on my face this past week. I think it’s an uplifting song and I love the beat. Just wanted to share 🙂
℗ 2015 Atlantic Recording Corporation for the United States and WEA International Inc
As always, I remain hopeful 🙂
Prior to being diagnosed with colitis I was very active. I would jog 3 times a week and attend a body-pump class every Saturday, which was a mixture of aerobics and weight lifting. It was for my training for the Mudderella, my first ever mud run. It was a great experience and I’m glad I did it. After the race I had hoped to continue running, but the pain in my hip increased and I officially had a hip injury. After seeing my doctor, a chiropractor, and a physical therapist for weeks, I went cold turkey and haven’t done high impact exercises since September. Now that its getting warm again, I really want to start running, but knowing me I have to be motivated.
After browsing CCFA.org I discovered “Team Challenge”. It’s a 16-week endurance training program where you get the opportunity to raise money for Crohn’s and Colitis research by running a half marathon, marathon, or triathlon. You can join a local team and members can be fellow IBDers or people that know someone with an IBD. Since I live in the DC metro area, I attended an information session for the Greater Washington DC/VA team. I decided not to sign up this year since I’m newly diagnosed and still adjusting to this new lifestyle, I didn’t feel I was in the right place to take on such a commitment. Maybe next year 🙂 The cool thing about the information session was that I met the team’s coach, mentor, and manager and they all had an IBD and shared how Team Challenge changed their lives for the better, it was very inspirational.
I’m not doing team challenge this year, but for those of you looking for an endurance challenge and have an IBD or know someone who has an IBD, check out the info below.
More details about Team Challenge can be found at http://online.ccfa.org/site/PageServer?pagename=tc_home and check out the video below: