A picture can say a thousand words. My medicine corner has turned into a ‘meds drawer’. Don’t be too alarmed a few bottles are empty, saved them for traveling. Sighs . . . .
I found the below video on my Facebook news-feed and it’s story of Brian Greenberg, President of Intense Intestines Foundation, and his story about his life with Crohn’s disease. After watching his video, I decided to check out his foundation, it’s look like a way to connect IBDers through education, support, and social events. Check it out when you get a chance 🙂
The Intense Intestines Foundation Mission Statement:The Intense Intestines Foundation’s mission is to help patients in their journey with Crohn’s disease, ulcerative colitis and ostomies by connecting, supporting and educating those with IBD and their loves ones by promoting a healthy lifestyle. (http://www.intenseintestines.org/)
Kudos to Brian Greenberg for spreading IBD Awareness!
Disclaimer: Strong language ahead, it’s about to get real lol
Sighs . . . . . . . . . . . . . . . . I am still confused about what happened this morning at my GI’s office. I knew coming in that I would be meeting with his physician assistant (PA) instead, which I was not too thrilled about. My last experience with her was interesting. When the bloody stools first returned I sent an e-mail via the patient portal stating “My period started earlier this week and I noticed for the first time in a month bloody stools have returned” I was trying to find out if there was a connection between menstrual cycles and flare-ups. Her response was, “are you sure it’s not blood from your uterus?” . . . . I guess she never used a tampon? . . .
Anyway, I was not excited to meet with her and I quickly realized there had been no communication between her and my GI on the follow-up I had with him last week. I told her everything I told him, but she was thorough. I told her how my GI wanted to know of any changes in my bowel movements since the start of taking the Apriso again. I said no diarrhea, but I have had a few bloody stools since my hospital discharge. The PA wanted to know the date and time I had these bowel movements, and luckily I am just as anal as she is and tracked every bloody stool I have had since being discharged, which has only been 3 times! A BIG improvement! I am not complaining! Prior to my hospital stay, it was 6 weeks of bloody stools multiple times a day . . . I am a much happier and healthier person right now.
So after telling her every symptom I have had since being discharged, she leaves to report all this information to my GI (who already knows!). She brings him in, he looks completely flustered and stressed, and I honestly believe he didn’t recognize me. Maybe it was because my hairstyle changed? last week it was straight and this week it’s big and full of curls (trying to give him the benefit of doubt). As she tells him everything and even mention the FODMAP diet I started, he looks at me and said “You’re getting better, you’re looking better, don’t worry so much, you’re fine!” I gave him a stern look, and quickly shut my mouth and didn’t say a word! I was mad and wanted to say “What the fuck is going on?” You were the one who told me that you needed to see me EVERY week!, Don’t treat me like I’m an hypochondriac, or that I’m worrying too much, you told me to come back! Okay asshole” That’s what I wanted to say, but I didn’t . . . I just sat there and wanted to get the hell out of there.
For the past couple of months I have praised my GI for his services. I value doctors that prefer to have a conversation with their patients, and we always had meaningful, in-depth, and great conversations about my health and I could tell that he cared. So I was very surprised and disappointed by his demeanor today. And I think he could tell, because when I was leaving, he tapped me on the shoulder saying “Krystal we’re going to get you better” I gave him a half smile and thought, Oh now he remembers me!
To be continued . . . . sorry this is a long story lol Will post part 2 tomorrow.
I’m starting my weekly follow-ups with my GI this week, something I never anticipated, but I guess it needs to be done in order for me to get to remission. During my appointment last week when my GI asked if there is a possibility I could be pregnant or plan to have kids anytime soon, I quickly said no, but it scared me. These upcoming treatments will be more intense and I assume will have long term effects on my body. The idea of not being able to have kids has never crossed my mind. But now it weighs heavy . . what if I can’t have kids?
I feel like I have been numb for a long time even before I was diagnosed, showing little emotion, thinking what is the point of wasting energy on something you can’t control or fix, just let it be. But being numb is not healthy, what is the enjoyment in life walking around like a zombie? . . .
Ever since I have been diagnosed there has been many nights I have cried myself to sleep, thinking Why me? What have I done to deserve this? And no matter how hard I have tried to control every aspect of my life, as I grow older I have finally accepted that life is unexpected. Life is a roller-coaster, life continues to go on . . . I found the below video on my Facebook news-feed, one young woman’s story of her depression and living with Lupus. I decided to share because I can relate to her story in many ways and admire her perseverance and strength. Please watch and share this powerful video.
To my fellow IBDers, Stay Strong!
I saw my GI on Monday for my post hospital follow-up. I think my GI is a hard working man, he looked just as tired and stressed as i was or maybe because it was an 8:00 am appointment? 🙂 Anyway, he reviewed my clinical summary from the hospital and was surprised that the hospital GI removed Apriso from my medications. Since it was the only mesalamine medication I was taking, he stated we will need to put you back on that medication. I immediately asked why since the GI at the hospital stated it didn’t work. He responded, “I think you have Ulcerative Colitis, and you’re currently taking 40mg of prednisone, I want to get you off the prednisone sooner than later. We need to do a trial and error and find your long term drug.” So far 2 out of 3 say I have UC , I feel like I’m getting closer to a confirmed diagnosis, yay!!
Then we talked about future treatment. He brought up Humira and Remicade again, but stated he wants to try an immune modulator instead. In the meantime he wants me to get tested for Hepatitis and see me every week?!?! I said “What!” He said we have to tackle this head on, I don’t want you to go back to the hospital.
Sighs . . it’s bittersweet. I’m fortunate to have a GI that cares, but my PTO hours are getting low. And I can’t afford these co-pays, but I am getting closer to my out of pocket maximum with Cigna!! So once I hit that amount it should be easier? *fingers crossed*
As always I remain hopeful, taking one day at a time 🙂
I went grocery shopping yesterday and was so excited when I found the gluten-free section. Unfortunately, because it’s gluten-free does not mean it is FODMAP friendly. I have discovered that soy, onion, and garlic is in EVERYTHING!! Did you know soy is in kool-aid packets? I could not believe it! And yes I have removed kool-aid from my diet 🙂 After my 1-hour grocery shopping experience where I read the label on every item I put in my cart, I was exhausted and very grateful that I do not have food allergies.
Since I will be on this diet for the next 4-6 weeks I believe I bought enough food to last for the remainder of May. I bought a variety of foods that included snacks and even desserts. Out of my half full cart I found the below items most interesting:
Gluten-free bread is the most unappetizing food I have ever seen. It’s look and feels like plastic and I feel foolish for buying lettuce and tomatoes thinking I can make a sandwich. But, I later discovered it’s not bad when toasted.
My most exciting purchase was white chocolate peanut butter that was under $4. No trans fat or high fructose corn syrup. I could not believe that pure peanut butter was selling for $6 or more, umm. . . no thank you!
So chocolate ice cream. I know I’m testing the waters with this product, but it’s no dairy, sugar, or soy, just coconut milk and coco. Haven’t tried it yet, but I hope its delicious.
Since I like to cook meals for the week, I cooked boiled eggs and quinoa for breakfast and baked a whole chicken for lunch and dinner. I’ll share my recipes later this week. The chicken came out well, but I will say without the garlic and onion it taste like it’s missing something 😦 I’ll just add more salt and pepper.
I met with the nutritionist yesterday and I thought she was great. She looked over my medical history, asked a lot of questions and even suggested ways to reduce my stress in addition to a new diet. When we were discussing my recent bloating, she stated it could be a result of the iron pills I’ve been taking. She recommended that I try a product called “Pur-Absorb” for iron intake, and since I do not have a gallbladder she also suggested that I should start taking digestive enzymes. “Now Foods Super Enzymes” is the product she recommended. I’ll look into both products.
For the next 30 days she wants me to try the FODMAP diet. It’s a diet that she recommends for her IBS patients and in some cases it can help people with IBD. It’s a strict diet, but luckily I have already incorporated aspects of it into my current diet.
FODMAP stands for: Fermentable, Oligosaccharides, Disaccharides, Monosaccharides, and Polyols. I would define each term but this posting would be an essay, so check out the links below.
Basically the nutritionist told me for the next 30 days all I can eat is gluten-free, trans fat free, and no processed foods. Also to avoid the following:
- All Dairy (only coconut milk is okay)
- Garlic and Onions (can only consume onion and/or garlic infused oils)
- Honey and artificial sweeteners
- Soda, especially diet
- Apples, mango, raspberries, watermelon
- Raw vegetables
- Wheat, beans, soy, rye, barley
- Any frozen foods
Most of the things above I have already stopped eating, but giving up garlic and onions will be difficult. The one thing she said I can eat is tomatoes. I was surprised because I do have GERD and I had to stop eating any type of pasta because of the sauce. She stated it probably was not the tomatoes itself, it might have been the garlic, onions, mushrooms, dairy, etc. that was in the sauce. It would be best to make my own sauce. In regards to meat she stated I should have no problems as long as I cook it myself, because a lot of prepared meat is cooked with garlic and/or onions.
So basically I will be cooking everything that I eat for the next few weeks. I will definitely share my recipes. The nutritionist also recommended that I download the FODMAP diet app, it cost $7 but I think its worth it. My favorite features so far are the food guide where you enter any type of food and it tells you whether it’s FODMAP friendly. The app also has recipes for breakfast, lunch, dinner, dessert, and snacks. This diet will be a challenge but I’m somewhat excited because I love to cook, which is something I have stopped doing because I have had no energy in the past few months.
Since my appointment with her was going so well I decided to challenge her. My appointment was at 12:30 pm and I did not have time to eat lunch beforehand. I told her when I leave I am most likely going to get fast food what should I get? She started laughing thinking I was joking, and I told her “No I’m dead serious” lol I mentioned how a Wendy’s grilled chicken sandwich has never bothered my stomach. She stated its good that I know it doesn’t irritate my stomach, but would not recommend it. But she did admit its bound to happen that you will eat fast food when you’re on the road. She suggested instead of fries or salad for a side, to order a bake potato and eat it with butter and salt/pepper. Which was exactly what I ordered and I had no stomach issues after eating that meal. I think I like her 🙂
I have a follow-up appointment in two weeks and I plan to officially start this diet on Sunday after I go grocery shopping. Wish me luck! 🙂
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 🙂