Positive vibes . . . :)

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.

http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/

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 🙂

Follow-up with GI part deux . . .

I finally had my 3-month colonoscopy follow-up with my GI yesterday. As I sat waiting, I pulled out my notebook and re-read my notes.  I wrote out my current symptoms, questions, and things I needed from this visit. When my GI arrived and asked what’s going on? his eyes glanced at the pink notebook opened on my lap and the pen in my hand. He asked, “Do you have questions?” I responded, “Lots!” He said “Well, Let’s begin.”

Even though its difficult to make an appointment to see my GI, I think he’s good at his job. I briefly mentioned all of my current symptoms and it turned into a conversation where he asked more questions than I had.  During the conversation I realized majority of my questions had already been answered. He stated how he was glad that a few of my symptoms have gone into remission and because of that he wants to keep me on my current medications for another 3 months, no additional prescriptions for now. I then asked about the steroid medication and why I wasn’t informed. He stated, “the dosage that you’re currently taking is very low and the only side effects that you should experience is light weight gain.This drug is for reducing inflammation. I didn’t want to prescribe you Prednisone because I felt your condition was not as severe and this drug has caused bad side effects for some patients.” He also stated that since your condition has gotten better since you’ve been on Budesonide, it is possible that you have Crohn’s, so let’s keep you on the this medication for another 3 months”  Great . . .

As a result of the visit I have to get blood work done and depending on the results it could possibly change my treatment. When i asked about the constant bloating, belching, and how my hand swelled he stated it might be my diet and for me to avoid carbs, sugar, and salt. Puh! lol I laughed, but he said to at least reduce my intake. I can do that, but i have an appointment with my primary physician next week,  I rather wait for her opinion before I start a new diet.

One positive from the visit is that  I can have a drink now and then!  I am allowed a (one) glass of wine. He stated drinking alcoholic beverages with my medications is possible, but alcoholic drinks is bad for my GERD, so I have to drink wisely. . . I’ll only have a glass for a special occasion or a really bad day (non-flareup).

In regards to my constant fatigue, he hopes it will eventually go away in the next few months as I continue to take my meds and the blood work might show that I’m anemic which might be the reason, we shall see.

Another symptom I mentioned was my recent big appetite and late night cravings and asked could that be a side effect of the steroids? He chuckled and said “the steroids can play a factor, but you are also a lot healthier. When you first came to see me, you were very sick and was in fear of eating anything because it irritated your stomach. It’s good that you’re eating now, and sounds like you no longer have that fear. ” Touche Doc . . . .  touche 🙂

Overall it was a pleasant experience. I left more hopeful and not afraid of what my blood work results will reveal.

Youth and IBD . . . .

Through my research I was surprised to discover that many “IBDers” are young, like very young, under the age of 18.  According to CCFA.org, approximately 1.4 million Americans have either Crohn’s disease or ulcerative colitis. That number is almost evenly split between the two conditions, and one in ten IBD patients are under the age of 18.

I’ll admit having an Inflammatory Bowel Disease can be somewhat embarrassing. Even what IBD stands for might make people chuckle and I’m okay with that, but I am 28. Can you imagine being a teenager and always having gas, the fear of having an accident, or just having people laugh in your face when you explain what IBD stands for? I couldn’t imagine . . . but luckily they are not alone. Camp Oasis that was established 10 years ago by the CCFA, is a summer camp for children that suffer from an IBD.  This co-ed residential summer camp program enriches the lives of children with Crohn’s disease and ulcerative colitis by providing them with a safe and supportive camp community. For more information  please visit http://www.ccfa.org/get-involved/camp-oasis/ and check out the video below.

Another great outlet for young IBDers is the website, “Me and IBD” http://www.meandibd.org/ by Crohn’s and Colitis UK. it’s an online community  that provides support  for young adults on how to deal with image, friendships, relationships, and many other issues they might face living with an IBD. Check out her story below.

After reading stories of young people with an IBD and how they cope daily with this disease, I can only be positive. Remaining hopeful 🙂