In honor of Crohn’s and Colitis Awareness week, Let’s make #IBDVisible, make what’s under water visible!
In honor of Crohn’s and Colitis Awareness week, Let’s make #IBDVisible, make what’s under water visible!
At spin studios throughout the US, people will be spinning for a cure on December 8th. Check out their promotional video below and click this link for more information. Please share 🙂 The more awareness and money that is raised, the closer we are to finding a cure!!
I’m surprised I just found out about this event even when I’m a CCFA member . . smh . . there really needs to be more publicity for Crohn’s an Colitis in the US. .
I think I have finally calmed down after my prednisone rage, and hope to finally get some sleep tonight. I’ve been wired and walking around mad for the past 3 days, scary stuff lol Anyway on to something positive.
This weekend I’m visiting my mother who lives in the suburbs of Baltimore to discuss our upcoming trip to California. Yes, we both decided we needed a little break from our lives and will be heading west for a much needed short vacay. A vacation . . . . something I thought I would not be able to do this year, I’m glad I’m taking a break. While discussing our trip details, she mentioned how her church will be participating in the CCFA Take Steps walk in Baltimore on June 6, and how she registered and planned to walk. I asked why didn’t you tell me about it? She stated “You’ve been sick lately and I wasn’t sure you would have the energy to walk, I decided to walk with my church in your honor”. Awww . . . *tear, tear* I said thank you and that’s very sweet of you, but I would love to join you and the church, so I am now registered! My mother told me how the Bishop’s son was diagnosed with Crohn’s disease many years ago and he has been an advocate for Crohn’s & Colitis research since. I no longer live in the Baltimore area, but I might consider joining this church. I have never been a religious person, but lately I need all the positive vibes I can get.
My mother is a strong woman, I can count the times I have seen her cry on one hand. Me being her only child, I have wondered how my illness has affected her because she doesn’t show it. Maybe she’s being strong for the both of us, I guess that’s what Mothers do. 🙂
Check out the event! http://online.ccfa.org/site/PageServer?pagename=TS_homepage
I believe I jinxed myself in my last post. The pain returned the next day, and I have been on Tylenol extra strength ever since. I was able to make an appointment with my GI this Wednesday so I just need to survive until then. Over the long holiday weekend instead of enjoying the beautiful weather, I ran a few errands and parked myself in my bed or the couch, this is the 2nd weekend in a row I’ve done this, it’s frustrating.
In the past 3 months I have noticed a pattern, I have one good weekend every month. The one good weekend is when I have the energy to be social, but I’ll admit, my “shell” has been very comfortable in the past few months. Going out to a bar/club or just being around a lot of people has made me more anxious than relaxed lately. When I walk into a public place the first thing I’m looking for is the restroom, and waiting to see how long it takes to feel the stomach pains.
After that “good” weekend, I have two weekends of exhaustion. Basically two days in bed, and barely seeing the outside world. When it was cold it was easy to stay in bed, but since it’s getting warm maybe it will motivate me to at least sit outside. The main reason why I’m so exhausted during these weekends is because of what my body went through during the week. For example, the past 2 weeks I have had abdominal pain, diarrhea, and a loss of appetite everyday. Those symptoms are not energy inducing or healthy, and you become exhausted. By going to work everyday, I was forcing my body to move when all it wanted to do was rest. But who can afford to take off for weeks . . .
Lastly the weekend of hell, aka Aunt Flo visiting. To be a woman and have an IBD, you are a VERY strong woman, menstruating and having an IBD for me has been a flare-up to the max! I’m very irritable, not just from the symptoms but I can’t even eat chocolate because it irritates my stomach . . it sucks!
So . . . if I cancel last-minute or decline an invite, it’s because I’m training myself to listen to my body. I’m still adjusting to my “new normal”.
My primary physician referred me to a nutritionist whose expertise is gastrointestinal disorders. I have never been so excited to see a doctor, but I believe it will be bittersweet. I’m pretty sure I’ll walk-in smiling and leave frowning . . . we shall see 🙂
I am currently experiencing my first BAD flareup. After 3 days of hell, I am now starting to feel better. To have intense cramps all day and going to the bathroom at least 10 times a day, I feel so relieved that the pain has stopped. I also feel safe to eat again, earlier today I was scared to eat anything just to avoid any more pain. I prefer hunger pains any day over severe abdominal pain.
But even though the past few days have been horrible, it could be worst. I found the below video of a young woman’s struggle with Crohn’s, please watch.
Remaining hopeful 🙂
I am so sick of seeing white walls . . . the walls of my doctors’ offices, walls of my pharmacy, walls of my job. I’m so sick of paying for co-pays, prescription re-fills, and medical bills. I’m so sick of medical assistants with bad attitudes, I’m just done lately.
I went to see my primary physician the other day and she also wants me to get blood work done. My doctors are like vampires . . . this disease is like a vampire, sucking the life out of me. I’ll admit, I have allowed this condition to “stop” my life. I try to travel somewhere at least once a year, but a vacation is not even on my radar right now. Because when I think of a vacation the following things come to mind in this order:
In the past, having fun was never last.
The one thing that stood out for me during my doctor appointment was when the medical assistant asked if I was depressed? After a long pause, I responded. . . .
Maybe I am?
The one thing I can confirm about my diagnosis is that I do have an IBD. Which one? I’m not too sure. I was originally diagnosed with colitis, but now I might have Crohn’s.
Since I have devoted all of my research to UC, I now need to educate myself on Crohn’s disease. I found this great video on YouTube that explains the differences between the two types of IBD. Check it out below 🙂
All rights go to Health Knowledge Works and Mercury Films Inc.
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.
Every since I was a kid I have always had “low energy”. According to my mother I was the perfect child 🙂 . . . . Not because I was an only child ;), but I was never hyper. I was very shy and reserved, and also anemic as a child. I remember in elementary school going to the nurse office every morning to take my iron pills.
As a child I do not recall feeling tired, but I do remember my lips bleeding. I’m pretty sure that’s the reason why I’m obsessed with lip balm/gloss to this day. I have this fear of my lips being chapped that they will split and bleed. Prior to being diagnosed with colitis, I noticed my lips started to bleed again and I was tired. . . . a lot.
I had a feeling something was wrong just by looking at myself in pictures from last year. I had a very active lifestyle in 2014 but when you look at my eyes in photos, they were always heavy and sometimes red. I immediately thought, maybe I’m just getting older and starting to look differently, gotta get used to the bags under my eyes. . . .But my second thought was, maybe i’m sick? And even though I’m very active and eating healthier, I am always tired . . . . . .
This week has been a true test for my condition, not only do I have colitis, but its been a very stressful week at work and Aunt Flo came to visit. “Pmsing” is the worst, and with Colitis it feels like a flare-up x 100 for me. At a staff dinner last night, I remember sitting at the table in pain and in a daze, completely absent and exhausted. And when I got home today, my knees buckled right before I collapsed on the bed.
My goal this weekend is to sleep as much as I can, but even when I do, I don’t feel rejuvenated. I guess it’s something I have to get used to.
I was very curios to know if having an IBD affects your menstrual cycle. I found the below fact- sheet from CCFA.org titled Women and IBD, very interesting. http://www.ccfa.org/assets/pdfs/womenfactsheet.pdf