The experience of living with a chronic illness doesn’t just effect the patient, but also their parents, spouses, friends, family, caregivers and children. Everyone is trying to figure it all out and wanna help. And for the most part, the patient is grateful for the support. But with the everyday pressures, pain and surprises of living with a chronic illness, certain things you say can only add more stress. Here are a few examples of aggravating things an IBD patient just doesn’t wanna here.
Top Five Things You Should Never Say To An IBD Patient
5. I don’t think you should/I don’t think you can eat that.
Food is such a personal and sensitive thing for each patient. I have friends with UC that get TORN up for gluten and dairy products. Dairy products made me sick, but not gluten products. I cannot eat too many salads, but I know people that can’t eat salads at all. I also know that more than 7 kale chips will make ME, personally, nauseous. Not everyone with a Jpouch has that reaction. So, I say all this to say that the patient knows what they can eat and when. And sometimes the patient may be willing to deal with the consequences the next day for a taste of something they want. That’s their prerogative. Don’t embarrass them by asking out loud in front of a bunch of people if they can eat that.
4. Be Positive
Chronic pain can bring depression. It can range from mild to severe. It cannot be helped and it can’t be predicted. But aside from that, sometimes you just get frustrated with the pain, limitations, body deforming, and injustice of it all. And that is okay. It’s okay and natural for someone to have a bad day! It’s very hard to hear someone with all their organs, able bodied and has gone most of their adult life without pain or challenges tell you to get over it and be positive and grateful. You see we are grateful. You know it could be worse or you could be dead. But sometimes when you are feeling perfectly fine but suddenly find yourself pooping on yourself in your car while trying to drive your kid to school, you find yourself being a little frustrated.
3. I Get Bad Stomach Aches Too
Having a chronic painful autoimmune disease like Crohn’s or Ulcerative Colitis is more than just a bad tummy ache. Not only does it effect your digestive system, but joints, eyes, teeth, taste buds, hair follicles, skin, memory, sleep and moods. It can also open up your system to other autoimmune diseases such as another form of IBD (if you have Ulcerative Colitis, you could develop Crohn’s), Fibromyalgia, Arthritis, Lupus, Cluster Migraines and more. And as far as your tummy goes, imagine feeling like you’re being stabbed by hot rod iron spikes fresh from the flame that also brings needle scraping in your back and nausea. I would hope that you don’t get the same stomach pains I get.
2. But You Were Fine Yesterday or You Just Did_____, Why Can’t You Do _______ now?
The most annoying part about having a chronic autoimmune disease is you NEVER know when it’s gonna strike and how long it will last. And while you are in pain in one area you try to utilize other parts that don’t hurt so bad. You are also making constant decisions about what is worth it. Was it worth it to take your son to the beach yesterday and putting off the grocery store today? Perhaps…maybe you know you won’t get the chance to spend that kind of time with your kid for a while. The groceries can get delivered or you can just put it off one day.
1. Didn’t You Just Go To The Bathroom?
No matter how outspoken someone is about their IBD, they still don’t like to answer or feel like they have to advertise when they go to the bathroom. Especially if it’s back to back. Not only do IBD patients HATE going to the bathroom because it is sooooo painful, but also, sometimes it can be a bit embarrassing and take a while.
Now while your intentions are good, just know that having something like a chronic disease can leave you very vulnerable and sensitive. And basically, you just don’t want to more attention brought to your disease than necessary when you are trying to live a normal life. I decided to post this because, sometimes it can be hard to express yourself without getting moody, sensitive and angry when someone says one of these things. I hope this helps some folks out! xoxo
So, hopefully you all read the part 1 of my advocacy trip to D.C. yesterday. The objective of my trip to D.C. was very personal and the outcome was fulfilling. BUT how could I have a trip without a “pulling a Brooke” (As my mom says).
First of all, I need to give a shout out to The Liaison Capitol Hill & it’s restaurant, Art And Soul DC. It’s very rare that I can go to a hotel, have a comfortable room AND a yummy modernized home-style reasonably priced meal with atmosphere and great drinks! The bell hops were amazing with directions and breaking the area down for me, and super sweet. Loved the ladies at the front desk and they were very helpful with trying to get me checked in early so I could rush off to the legislation agenda meeting. The room was comfortable and cute. The location is great because it’s literally within walking distance of Capitol Hill AND The White House! Yes, these old arthritic knees walk down the street to Union Station to The White House. Then I walked from The White House to The Washington Monument to Capitol Hill and then back to the hotel. The day after the snowstorm there was still Ice and snow, so it probably took longer than it normally would, but the hotel was still centered in a great location. Cute, chic and modern, but still kid friendly!! So yes, Jax and I will be staying there in June. If not for anything but, the biscuits!! Oh sweet baby jesus, have mercy on my soul, those biscuits!!!!! The food at Art and Soul DC is AMAZING!! Was it IBD friendly…not really. But it was just what the doctored ordered for a mommy looking for a little atmosphere and not having to share her portions with a little hippo. I had the boudin balls, homemade chips, Beet & Baby Kale Salad, Hanger Steak and the chicken & biscuits. Not all on the same night…but I did have to unbutton my jeans half way through both meals! The bartenders are awesome and make amazing drinks. Shout out to Chef Wes Morton & Lee the bartender! There was also a blonde bartender that recommended the boudin balls, whose name is escaping me at the moment, but she ROCKED my food life that night! LOL!
Okay so jump flash forward to Monday, our day on The Hill. I rush out and find myself in the middle of beautiful falling snow. So I take the short walk from The Liaison to The Phoenix Park Hotel for the DDNC’s morning breakfast and briefing. As I’m walking, it seems pretty cold, but it’s not all that bad. Okay, so I’m make it to the Phoenix Park Hotel, walk inside and don’t realize that my nose has been running the whole time I’ve been walking. Basically my face is frozen. Jump to, its time to make our way over to The Hill. So, Laura and I walk out to the front door and find that there is so much snow falling in such random directions that the short walk to the Senate offices could be challenging. Luckily, for a price someone offers to take a bunch of us over in a van. I get in the back next to Laura, move to say something to her and realize that in that 5 minutes I was standing out in the mini blizzard, my face froze. I have to over work my jaws just to get a few words out! THAT WAS ONLY THE BEGINNING!!!
After we visited our two Senate appointments with Senator Feinstein & Senator Boxer , Laura and I met up with IBD advocate & Blogger, Carly and her mom. We all went downstairs to get coffee and snacks when I realized I had left my wallet back at my hotel. But it was no problem, I thought because my hotel was right down Constitution to New Jersey! Super easy and simple. I told the ladies I would be right back, said goodbye to the Capitol Police officers at the door and headed out. Now…when I got out the door on C st. the snow actually didn’t look that bad. But then…then I turned the corner on First St. and BAM! THERE’S SNOW EVERYWHERE!!! It was coming from the sky, from the side, from the Dirksen Building and hitting me in the back of the head! I didn’t even know snow moved like that! I figured the best thing for me to do was to act like I knew what I was doing and get back to hotel before it was time to head over to the Longworth & Rayburn buildings. So I just start walking. Can’t really see, so I decide to pull out my phone and put the address in my GPS. I didn’t know that the cold would have an effect on my phone battery. Well, it didn’t matter because my GPS was just as lost as I was in this vortex of snowflakes. But I kept saying, just get to Constitution Ave., you’ll be alright. I walk down Delaware and see a road block which looked like a parking lot or something so I kept going because I knew I wasn’t near Constitution Ave. Constitution Ave. and the source point of direction, The Capitol Building. I just kept glancing at the Capitol Building as if it was the north star and just kept walking…but wait…wasn’t the Capitol building on the other side of me a minute ago? Everything is very white and very quiet. Wait…where is the street? A snow plow goes by…hmm…that must be the street, let me head over…wait…is that The House? Did I pass the Supreme Court? Where the hell are the sidewalks?! Then I hear, “Ma’am? Is everything okay?” I turn around to find a Capitol police officer. Long story short and a wild working of my frozen jaws later we concluded that I was very lost and was far from my destination. LOL! Yep! Well the kind officer pointed me to the direction of another Capitol Police officer who referred to me as, “California” and he was kind enough to point me in the right direction of New Jersey Ave. I made it to the hotel and upstairs. And it was at the door that I remembered I had put the wallet in the inner pocket of my purse to keep it from getting wet! YES! YES I DID! I pulled the ultimate Brooke! In fact when I called my mother hysterically laughing at myself she actually said, “Can you not pull a “Brooke” in 10 degree weather?” I made it downstairs to the lobby of the hotel where the kind Art and Soul bartender, Lee made me a very yummy, very hot, body warming adult hot chocolate and sent me and books back into the blizzard. On the way I encountered my old pal from the Capitol Police Force who pointed me back to direction of the Senate Office buildings. When I opened the door (50 minutes later), the security guards were cracking up at the California girl roaming the snowy streets of DC. Apparently I gave the good officers of The Nation’s Capitol a nice chuckle!
Then the time came for me & Laura to head over to The House. Unfortunately, we weren’t able to take the underground shuttle so we headed back out into The Abyss. The guards did make sure I had a buddy before I left again! Good looking out guys! Half way through our walking through mounds of snow and ice, we took a break…er uh…a picture! I mean we took a picture in front of the Capitol Building with our frozen fingers. yes, I was wearing gloves but STILL couldn’t feel my fingers (or my toes for that matter and I had on socks and my super warm leather Ugg boots). When we walked into The Longworth building, you would have thought we were aliens the way the guards were looking at us. LOL! We each had snow piled onto our coats, faces red and frozen and runny eyes and noses! HAHA!!! Yes, we are here to see our local representatives! Legs were hurting, shoulders sore and fingers stiff…but we made it. After we were all done, we had some time to sit and chat. I have to say, I love me some Laura Wingate! She is a true patient advocate and just a sweet soul! I felt honored and privileged to be able to speak with such a great human being. I mean, you know when you meet someone and they are just super cool and compassionate and they really listen to what you’re saying. She is that person! She’s the perfect spokesperson for CCFA or any non-profit and I look forward to re-connecting with her again in June.
That’s one thing I love about being apart of this community. There are some people who are not so positive and warm, but for the most part you can connect with some amazing amazing souls! Terrell, Dale, Priyanka & Dr. DeGerome from The Digestive Disease National Coalition were absolutely amazing and persistent, which only made you want to keep pushing. And then there were just some AMAZING people I fell in love with from different parts of the country because of their strengths, talents and perseverance. And now that I’ve seen change and things pass, I know that all this was worth the effort. I’ll be back in June and then next year…well…I’ll be packing an extra pair of long johns!
Ps. Yes, I did go by The White House. Yes, I did geek out. Yes, I did try to call Jaxon while standing in front of the White House. Yes, I did cry a little at the fact that I was standing in front of the White House where a black man was sitting in the Oval Office as Commander In Chief. Yes, I did recite the preamble, possibly in the school house rock song melody…WHATEVER! You know I’m a nerd! Oh and yes while I was taking a picture of the Pennsylvania/Executive street sign, I heard the chirp of the police cars and looked to see THE BEAST turn the corner!!! And yes, I did proceed to call everyone in my phone to tell them I had seen the motorcade. I was like a kid at a One Direction concert Fa-Reaking out!!! HAHAHA!
I’ve always been an outspoken person when it comes to standing up for what’s right. I’m a black female in America, growing up I knew there was a lot to stand for. But, to fight and march and walk…not completely necessary. I was very grateful to those trailblazers during the civil rights and women’s movements for breaking down the barriers and creating a formula for us. The groundwork was done, we are just maintaining the foundation and building onto the structure. But when it came to IBD…I found myself having to come out of my comfort zone…a comfort zone I didn’t even realize I had. Well, I had to come out of it and stand up for myself and others. Others being adult patients, pediatric patients, caregivers, spouses, children, friends…they needed a voice too. A voice for what? Awareness, healthcare, research, funding, a cure…a better quality of life.
In March, I had the opportunity to let my voice be heard on Capitol Hill. The Digestive Disease National Coalition had their Public Policy Forum on March 2-3, 2014 and I joined Laura Wingate from CCFA on The Hill. What an AWESOME experience! Unfortunately, because of the snowstorm (the snowstorm that prompted CrazyCreoleMommy Lost in Snow & The Adventures of Laura & Brooke! Posts to Follow), we were unable to meet with the Legislative Aids that were scheduled to meet because no one could get to down to the capitol. However, we were able to hand over materials face to face, so it led to some progress and response when I followed up. So I look forward to making legislative head way in June when Jax and I go back with CCFA’s IBD Day On The Hill. What was amazing and motivating for me, was being able to be in a room full of people with Crohn’s, Colitis, Ostomies, J-Pouches and Celiac taking the time to advocate for themselves and each other. Being sick myself and knowing that these people were in as much pain and more than me, and were out there making sure that IBD & Celiac awareness was on the minds of every representative gearing up for re-election. Since re-election is a big motivator, I know that right now is such a great time to reach out to your local Congressperson & Senator(s) to talk about the legislative issues facing IBD patients.
For instance, did you know that there is a Crohn’s & Colitis Caucus? It’s a Congressional Caucus that is co-chaired by Rep. Ander Crenshaw (R-FL) & Rep. Jim Moran (D-VA) dedicated to legislative issues regarding IBD. Rep. Crenshaw is a parent of a Crohn’s patient, so his compassion for IBD patients is greater than most sympathizers. The Crohn’s & Colitis Caucus works closely with The CCFA to ensure that patient’s needs are being represented properly to The House of Representatives. It’s because of the work of the Crohn’s & Colitis Caucus & Sen. Majority Leader Harry Reid (D-NV) who has presented the Inflammatory Bowel Disease Research and Awareness Act to the Senate Floor several times before S. Res. 199 “A resolution supporting the goals and ideals of Crohn’s and Colitis Awareness Week, December 1-7.” was passed in 2011. It’s because of people like some of the folks I met March 2nd & 3rd, taking the time out of their lives to speak to government leaders about what we need as patients, parents, caregivers, spouses and daughters & sons.
June 11th, CCFA is going back to The Hill. Join us! If you can’t join us, sponsor someone to go (email me and I’ll direct you to someone at CCFA who will help you sponsor a patient). If you can’t do that, sit down and type out a letter to your local Congressperson & Senator(s) and let your voice be heard. If you need a little help, CCFA has a great advocacy kit to help show you how to do it. Jax and I will be going. And I will continue to go and advocate until IBD is a household name with ready information for newly diagnosed patients, until patients have an easier better quality of life, until research funds are comparable to those of most deadly diseases and there is a cure! I guess I’ve found a new full time job!
Clear here for my Flipagram.mp4 2 on my DC trip!
When you make the decision to have a baby there is so much information to take in. There are so many variables you try to predict and situations you try to prepare for. The mound of responsibility from choosing what foods to eat when you’re pregnant, what name to give your child when they’re born to choosing a place to live in a kid friendly neighborhood with good schools. So much to do and prepare for…and it never ends. As you grow and evolve together, life will continue to pack it on. I was one of those read up on everything, try to prepare for everything, five year plan pregnant ladies. Even with my Ulcerative Colitis I didn’t think my life would be so different. And what I thought I should expect was not at all what I got!
My UC turned into (what felt like) a mutated form of Ulcerative Colitis. My body was doing things I didn’t know if could do and didn’t know it was even related to my IBD. I did not expect to give my son a sick mommy. But that’s what he got. Looking back, I’m not sure how I survived with the amount of daily pain I was in. I guess, I didn’t really think I just knew that things around my house needed to get done and there were two people that needed me. So I just did without thinking. And then suddenly two people turned into just one and life got way harder. I’m talking hard! It wasn’t just the lack of support, but the emotional toll it took on both me and my son…more so on him. He just didn’t understand what the hell was happening around him. And then I began to change. I was thinner. My skin, grayer. My hair shorter. My energy, non existent. And then before I knew it, a doctor’s visit turned into two weeks in the hospital without being able to hold my baby boy. His whole world flipped upside down. Where was mommy? What was happening?
Then mommy came home with a funny thing on her tummy. But the funny thing was a good thing, right? Yes, I told him. I told him even though mommy couldn’t pick him up right away, having the boo boo on mommy’s tummy was gonna make mommy feel better. When I walked into the house from a month stay at the hospital, my brother held Jax up to me so I could hug him. Jax hugged me around my neck so tight, I wasn’t sure if I was breathing…but I was happy. I thought he was gonna burst from joy and I shed the tears he wouldn’t let fall. But what was wrong with mommy? My two year old was smart. Some say brilliant. He knew something was up and he wanted answers. Why does mommy go to the hospital so much? Why does she run to the potty? Why can’t she eat? Why does she have that boo boo on her tummy and why can’t she pick me up?
I told him. I told him that Mommy has something called Ulcerative Colitis. It made her stomach and her boom boom (my kid term for butt) hurt really badly. In order for it to be fixed, I had to get a boo boo on my tummy and then the doctor made a pouch inside of my tummy to help me go potty better and not make my stomach hurt so much. We talked about colitis for about 45 minutes. He asked what it felt like and did other people have it. He asked if he had it and how can you get it. He asked if I had it when he was in my tummy. And then he asked God to take it away from the planet! The next day we were out to dinner and the waiter asked me what I wanted to drink. I told him just water. Jaxon stopped the waiter and said, “My Mommy has Colitis. And now she has a pouch and soon she will feel better. Can I have water with no ice with lemon, please?” That was the day having Colitis became normal. All this time I had felt a certain way about my condition…and don’t get me wrong, I still get a little frustrated… BUT…at that moment, me having colitis and J-Pouch was as normal as ordering a glass of water. It happens. Some people have it and some people don’t. My kid’s reaction to his mommy having colitis was not what I expected. THAT was definitely NOT in the book!
As my Uncle Adam would say, Well…Well…WELL…!! Here we are, marking year 2 of the total colectomy. My colon has been out of my body for two whole years now. Crazy! You’re probably wondering, how am I feeling, right? Well…right now at this very moment, physically, not so great. But I am optimistic that something will break through.
They told me that it would be ABOUT 2-3 years before I would start feeling normal again. But, I was a pretty sick kitty. It could take me a little bit longer than that and I’ve finally come to terms with that. I think they said, CURE, to the wrong person. Because I literally took that word, put it underneath my arm and took off like the Road Runner. Beep Beep! LOL! And then reality stop up to me like a big fat STOP sign and suggested I take a breath and sit down somewhere. So far, I’ve only had one case of pouchitis. I have two ulcers in my J-Pouch and a Hiatal Hernia. Still have Arthritis and some Uveitis symptoms. Then there are some other little things here and there that we are trying to get control over. I’ve also developed a very fun subconscious fear of the hospital. I’ve been told that my symptoms are very close to those of patients with Post Traumatic Stress Disorder. FUN!
So, the “Cure” isn’t so much a cure as it is a solution for one Inflammatory Bowel Disease issue. IBD is such a complicated disease because it is autoimmune and it effects so many different parts of your body and your life. There isn’t really a cure all for it. So, no I haven’t been cured. But I’m alive. I made 30. I’ve gained weight. I can eat a lot of great food (and I taste it). I’m not taking 20 pills a day. I have a lot more energy than I had before. Fewer days of arthritic pain. Little to none painful bathroom visits. My hair is long! I mean LONG and still growing! And all of these things have led to my induction into “Jaxon’s Beyoncé Girls” Club! That’s right ya’ll I made it! And really that’s all that matters.
Still takes me a little longer to get around a store. I’m in the bathroom quite often. And sometimes it’s very hard to get Jaxon to school…but I’m better than I was. And for that I’m grateful. I am also so grateful to everyone who has been there supporting me and Jaxon through all of this. Without everyone, I don’t know what would have happened to us. A big thanks to Dr. Gingold & Dr. Fleshner who took my case and took a chance when it didn’t really seem like I had one! I am eternally grateful to the nurses who were patient, swift, sweet and understanding. And all my love to Ms. Claudette & Ms. Anne, the ET nurses at Cedars Sinai. My few months with my stoma were some of the hardest in my life…but that’s a whole different post. :-) I’m eternally grateful to be here.
This week I am dedicating each post to education, gratitude and the IBD journey. Stay tuned!