Yeah . . . I had about 4 WTF moments today!! Job stressed me out and now I’m completely exhausted. Instead of spring cleaning this evening I’ll be heading to bed shortly smh . . . I gotta do better
I cannot believe its been a week since last Sunday when I was discharged from the hospital. It was not until last Thursday that I started to feel normal again. The medications I’m currently taking are working and hopefully will continue to work *fingers crossed*. The one thing I’ve learned about being in the hospital is that after you’re discharged everyone wants to talk about it. It’s totally understandable and I am grateful that so many care, I’m not complaining but, it can be exhausting. I find it a lot easier to write about it. Or it’s easier to talk to others that live with an illness because its normal to talk about multiple prescriptions, side effects, and cost without receiving that look of shock, sympathy or sadness. This past week I googled the differences between IBD and IBS since I knew it would be the most popular question, and luckily there are many articles to prepare you for “that conversation”.
During these conversations the most popular response was “Well you look really good!”, you don’t look sick, which I say thank you and don’t feel the need to tell people that I’ve barely eaten anything in the past few days. Then hearing my grandmother say, “i hope you don’t die from this” and I responded, “No I should be fine, it’s not fatal thankfully” lol Or “This disease has really taken over your life”, which I totally agree. It’s been 5 months since my diagnosis and I’ll admit I don’t recognize myself anymore. I’ve always been a quiet person, but lately I feel like I’m not “present”, can’t remember anything, brain fog, extreme fatigue . . . I feel like I have aged. Someone told me this weekend, “You’re too young to have the body of an old person”. My only response was, “it is what it is!”, I do not have control.
When I was first diagnosed I’ll never forget when someone said how a family member’s dog has colitis, is it similar? I did know a little about Canine IBD, but didn’t really appreciate being compared to a dog lol. Ugh . . . maybe I’m just too sensitive ;). I also learned early on to not start “the conversation” with “I have a disease! . . ” I’ll never forget how their eyes got wide and they slightly moved away like i was contagious, not joking . . . I had to bite my cheeks to stop myself from laughing, but I guess I might have reacted the same way, can’t be mad. In both cases their intentions were good and they genuinely care, it’s just funny. I had “the conversation” with my roommate last night, she was more distraught than I was. I ended the conversation very awkwardly by saying, “I’m gonna go to bed now” lol . . .I refuse to cry anymore over this disease.
Since my current medications are working, I plan to use public transportation for the first time in weeks to visit an old friend in DC. I’m nervous, but i know I will be fine. Can’t allow my anxiety to make me fearful of everything. And prior to my meetup, I will review my notes on “the conversation” about my IBD which is now like a memorized script.
I remain hopeful, taking one day at a time 🙂
I was finally discharged yesterday after almost 5 days in the hospital. I’m glad I left when I did for my psyche, because I had not reached cabin fever yet, and was still slightly uncomfortable “living” in a hospital. I got along with the nurses and the food staff, helped out new patients in getting their toiletries, and was very comfortable walking around in a gown while pushing my IV . It was becoming a normal routine, it was scary. My first ever hospital stay was an adventure.
The ER is horrible, and I believe the nurses looked just as miserable as I felt. When I “checked-in” I had to tell the nurse at the front desk why I was there and my symptoms. I told her I have Inflammatory Bowel Disease and going through a bad flare-up. I have bloody stools, cramps, on several medications including prednisone, and my GI told me to come. She gave me my papers and told me to sit in the waiting area. As I sat down, I immediately became irritated when I read what the nurse wrote “On prednisone, IBS” . . . . . I didn’t realize that irritable/inflammatory and syndrome/disease were the same words??!?! . . . . .I was sooo mad and felt disrespected, I was very surprised by my reaction. So when they called me back for an EKG and blood and urine samples, I quickly corrected them and stated I have IBD not IBS, they are NOT the same!
I was sent back to the waiting area and sat for another 3 hours and quickly noticed how crowded and uncomfortable the ER really is by being surrounded by crying babies and foul smells coming from the 1 restroom! Thank goodness I barely ate that day and did not need to use the restroom. When my patience was wearing thin and I started to think they forgot about me, I was finally called back. They put an IV in my right arm (worst place to put it!) and then told me to change into a gown. An hour later I saw the ER doctor, she tells me my blood work looks fine and we can send you home tonight. I looked at her like she was crazy and immediately thought, I did not waste 5 hours of my day in this horrible ER to be sent home because my blood looks good!! In my best attempt in a calm voice I told her, “I have called out sick this week at work, barely worked a half day today, and if you send me home tonight I’ll probably be back here tomorrow, so I would suggest that you get in contact with my GI since he told me to come to the hospital, so please check, thank you!” 45 minutes later she returned and told me I was being admitted. She got in contact with my GI who told her that I needed to be admitted because we need to find out why the meds are not working. I had never been so excited to be admitted, I was just glad to no longer be in the ER.
Unfortunately, after almost 5 days in the hospital and seeing 3 different GIs, none could agree on my diagnosis. After a CT scan, scopy procedure which included my first experience with an enema, HORRIBLE! and my blood being drawn everyday, the only thing that all 3 can agree on is that I have active Inflammatory Bowel Disease and that’s its not severe. It’s frustrating to still not know, but my symptoms have gone away, so I’m happy. My pill intake has decreased from 14 to 8 pills, and now taking 40mg of prednisone daily. . . I’ll take it. I have a follow-up appointment with my GI in two weeks and I am very curious to know what will be the next step in my treatment.
IBD is a crazy disease! My case is not considered severe, but it put me in the hospital for 5 days?!?!? That’s kinda crazy.
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
Have you ever stared at the ceiling to prevent tears from falling on your face? To avoid letting someone see you cry? That was me today. It wasn’t like I was shocked by the news, but I felt like I reached my breaking point.
After two weeks of horrible symptoms I finally got to see my GI, he said two words that I hoped I would never hear, “Prednisone & Remicade”. He stated how my condition is getting worst and in order to force my symptoms into remission he prescribed me prednisone (aka “the devil”, the name many IBDers call it). Thankfully its not a high dosage, and I was told to take it until I start feeling better and eventually stop. Once i’m off the prednisone, he would like to start remicade in order to maintain my remission. Unfortunately, Remicade is not an oral prescription, it can only be done through IV infusion, which means a trip to the hospital for 3-4 hours, every few weeks. . . sighs . . . I don’t like hospitals.
Before my follow-up appointment in one month, I have a lot of lab work. More blood work, testing for tuberculosis and hepatitis, and a stool sample. The process of collecting a stool sample is hilarious to me, but I won’t gross you guys out lol Also today, I got a call from my primary physician about my blood work results, she stated I have Vitamin D deficiency, and wants me to buy over the counter Vitamin D supplements. I’m not surprised, in the past week I have had no energy and my body aches all over. So . . . with the addition of prednisone and Vitamin D pills, my pill intake has increased to . . . 14 pills a day!!!
It was truly a sad moment in my GI’s office, we both looked at each other with sad eyes 😦 I would write more, but I am completely exhausted. Really hoping I feel better soon.
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 🙂
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:
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:
- I can’t afford it or it’s not smart right now to make a big purchase because who knows what my condition will be like 3 months from now.
- Will I have enough medication to take on the trip? What if I forget or lose my meds?
- What do I eat?
- Will I have access to a bathroom if I’m having a flare-up
- Fears of a long flight/bus ride. Probably won’t eat anything prior to be safe.
- Oh and have fun!
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?