Nobody likes you when you’re 23: what in the world has been happening with my life
Posted on March 19, 2015
I’m just going to leave that video there because “What’s My Age Again,” by Blink 182, while it is not the most appropriate song for my current life happenings, it does reference being 23, which I turned shortly before my body decided to give up on me.
I suppose in that vein, I have found myself asking, “How old am I? Should this really be happening to me?”
“What has been happening since January, Hannah?” you may ask yourself, not that I would expect that from anyone. Y’all have busy lives and I should be just fine with my job and cat and apartment, but alas, February brought in some difficulties and I am here to write about them for any and all concerned parties.
This post is long. I am sorry, but for the sake of clarity and for future short posts, the detail is necessary.
I was diagnosed with your standard-old-run-of-the-mill influenza on February 2. My doctor said I had likely started being sick well before then so it was too late for me to take Tamiflu. I was told to head home, rest, take Tylenol and that I would be able to go back to work at the end of the week.
Well, the end of the week rolled around and I was still having a fever, so no work and more doctoring for me. Went back to the doctor, got some antibiotics and again was told to keep resting up. Now, if you know me well at all, you know how much I love working. I have especially loved my work of late and was getting restless. Some may remember me working sleepless nights probably also delirious from fever at The University Daily Kansan, well, it seems as though I have not broken that habit because after a few days of antibiotics I went back to the office.
It about killed me. I barely remember those two days except for demanding that a video about coffee be shot in actual coffee shops and not on the green screen (which I hate with a passion that burns hotter than the sun). The video was not shot on a green screen. You can, and should, watch it here.
I continued to deteriorate over the next couple of days under the guise of working from home — the work I created was nonsensical and useless except for this David Bowie-fied Jim Bowie. Finally, at approximately 3:30 a.m. on Friday, February 13, I texted my parents saying I had a 102.5 degree fever and needed someone to come and take care of me.
I went to my normal doctor, who took some of what would become much blood for tests, she said she would call to tell me if I needed to head to the hospital.
Hospital stay number 1
My boss at The Dallas Morning News is good people. My entire working group there, just straight up good people, and they are the only people I have in Texas. No family available whatsoever except a 1 hour flight or a 6 hour drive away. So, my boss took me to the ER.
We hung out there for a CAT scan, more blood tests and a doctor named Kamali (like Tamale) to admit me to the hospital. Meanwhile, Dad’s flight was delayed by two hours, but he walked into my room right as they were wheeling a very tired me in to get situated for what would become my seven day stay.
So symptoms during all of this: high fever, diarrhea, lack of appetite, exhaustion. (I know, talking about stomach stuff or other stuff is unpleasant but it has now become a main part of my life, please hang with me.)
The doctors were concerned I had an infection or a virus, so for the first few days no one could enter my hospital room without a face mask, which was amusing for about five minutes until my poor Dad’s glasses kept fogging up. I was given two antibiotics, Flagyl, which is specifically targeted for gut-related infections, and Levaquin, a very strong antibiotic I’d had before.
After my fever went down the doctors wanted a flexible sigmoidoscopy, which is essentially a half colonoscopy. Same concept, but the doctor only takes a look at half your colon, or in my case, as far as needed to see ulcers!
Now, you may think the prep for a colonoscopy is the worst thing ever and that they idea of a camera being stuck up your butt is also unpleasant. In the grand scheme of things, both are untrue. I drank 300 mL of magnesium citrate. It tastes like a lemon and is acidic and that was the worst part. At times the acid was just too much for my stomach to handle, but overall, not bad.
For the actual procedure, they use Propofol. It is administered through an IV and you essentially go to sleep soon as it begins and wake up 5-10 minutes after the flow stops. Not bad at all if you ask me. You may recognize it as one of the drugs Michael Jackson was on when he died, and that is because he was not monitored during the administration of it, which is crucial!
Ultimately, the doctors said I did not have an infection, but believed that I had ischemic colitis. It is a loss of blood flow to the inner lining of your colon, which can cause ulcers like I had. Treatment? More rest, and a low-fiber diet. After a few more hospital days, I was sent home with pain medicine and antibiotics to finish up with word that I would be better soon.
Two weeks at home
I returned home, took my antibiotics, rested. Then suddenly my left knee swelled to approximately the size of a honeydew melon! Back to the doctor, where they thought I had an infection in my joint (very very very very very bad). After three attempts to tap my joint, my normal doctor and her colleague decided my knees are too weird and made me an appointment for the next day at the orthopedic guy across the hall’s office.
That doctor, Dr. Quinby, quickly became my hero. By this point the fluid had increased and started covering my leg muscles so I could not move my leg without help — sort of an unsettling realization at age 23. But, my pal Quinby tapped my joint no problem, drained the fluid then gave me a pain shot and sent me on my way to get an MRI.
Ultimately, the MRI showed that I had a ligament pop off and allow my knee cap to float over and be rubbing against my bones and be breaking down my cartilage (not good). I already had multiple injuries to this knee, but it seems a very severe side-effect of the Levaquin is issues with ligaments loosening, so that helped my injury along and I will at some point this year be having out-patient arthroscopic knee surgery to repair the injury. I should be right as rain for the next few decades post-surgery!
Unfortunately, through all of this and for the next week I was still having yo-yo-ing fevers, exhaustion, diarrhea and minimal appetite. By the following Friday, we went back to the doctor to get more blood work done. She took 13 vials of blood to test for everything under the sun because 23 year olds should not be this sick.
Monday blood work came back and I had a 102.5 degree fever so it was back to the hospital.
Hospital stay number 2
Back to Presby! I was in much worse shape this time around. There were lots and lots of people in line at the ER triage area to be checked in, who in my opinion could have taken their sore ankles to an immediate care center rather than the major hospital’s ER, but who am I to decide where they take their medical needs.
Eventually I was triaged. My heart rate was 140 beats per minute. For some perspective, I was sitting down and my heart was going as fast as during a really good work out. Not ideal. On the plus side, I got moved up to the top of the list past those ankle pain jabronies.
I was given two liters of IV fluid, more blood work done, another CAT scan taken and after a few hours of waiting for some elevator problem to be solved, I was shipped back up to the same floor of the hospital that I was on two weeks before.
Since I had returned with the same symptoms and clearly not improved since my last hospital stay, my gastroenterologist suspected I had Crohn’s disease. Another flexible sigmoidoscopy was needed to diagnose, so more magnesium citrate. My first procedure was at 6 a.m., so I woke up and went to the procedure, no big deal. This time around however my procedure was scheduled for noon, meaning no food or water from midnight until after we were done.
My game plan: sleep. Sleep all morning. Sleep through the phlebotomist coming at 4 a.m. to take my blood. Sleep through the nurse change. Be confused and asleep when the preacher came to see if I needed to talk about my feelings of being young and in the hospital. By and large, besides being perhaps a little snippy and nonsensical with the preacher, success!
Results: My colon was FILLED with ulcers. My condition had clearly worsened and the doctors were all but certain that Crohn’s disease was the correct diagnosis. The pathology report would take a few days — checking for colon cancer again and such, but they were certain enough to start talking about what being diagnosed with Crohn’s would mean for the rest of my life.
What is Crohn’s disease?
Crohn’s disease is an inflammatory bowel disease or IBD. (I think of the movie lady killers every time I say this. Here’s a video clip from the film to explain.) In the case of Crohn’s compared to other IBDs, it is a “chronic inflammatory condition of the gastrointestinal tract.”
There is no cure.
The inflammation commonly is accompanied by ulcers, like my poor colon is filled with at the moment. Crohn’s is most commonly found in the small intestine, but can affect any part of the gastrointestinal tract (think from entrance to exit, friends.) My Crohn’s is in my large intestine, which is the part of the body that helps to squeeze the liquids out of what you have eaten and finish up the digestive process so you can make cute poop emojis.
Symptoms include: diarrhea, bleeding, abdominal cramps and pain, fever, loss of appetite, weight loss and many more.
Doesn’t sound fun, does it. Well, to be honest, it hasn’t been, but I am so grateful for my fantastic family, friends, doctors and nurses who have all been of great help during this.
Likely you’ve seen a commercial or two that mentions Crohn’s and describes it as debilitating. I’m going to stand up on the Internet right now and say that I disagree with that assessment.
700,000 Americans have Crohn’s disease. Personally, I don’t imagine 700,000 Americans spending all day in the bathroom feeling sorry for themselves — I know that is not my plan.
So, what is the plan?
As I said above, there is no cure for Crohn’s disease. I am going to have this FOREVER. But, there are treatment plans to manage the disease. Remember those 700,000 Americans? They have lives because there are treatment plans.
At present, my doctors and I are working to get my Crohn’s into “remission,” meaning that my major symptoms will subside and I can feel more like myself. This is done with high doses of steroids, which over a course of time are tapered off. I am taking prednisone.
After remission is reached, then the disease is managed through a combination of medications, diet, exercise and stress relief. It takes dedication and self-awareness from what I’ve heard to be successful with Crohn’s. It is not impossible. However, there is always the risk of complications (generally from not following your treatment plan) requiring surgery to remove part or all of your bowel.
My doctors say that we caught my Crohn’s early and we are beginning and aggressive treatment plan so that I can keep all of my colon (yay!).
Back to the plan:
Steroids tend to pump you up (read in the Arnold Schwarzenegger voice, please). I’ve been on my dose for about a week and, bless my father, but I’ve definitely been a roller coaster to hangout with because I am even more manic about my insistence for us to make detailed lists and focus on single tasks until they are completed according to the completely arbitrary schedule I’ve created for my own sanity. (Not being able to physically be in the office all day everyday may be taking a tole.)
Along with the prednisone, I am taking my usual allergy medicine (praise Claritin and the rose-scented Flonase!), pain medication about every 6 hours and more medication to make sure that I fall asleep. We found out a couple days ago just how long I can stay awake on the prednisone — I do not advise.
Along with all of this, I am on a low-fiber diet. This at first was definitely the hardest adjustment to make.
The nutritionist visited me in the hospital to go over the restrictions of the diet and essentially address that in two months I have lost 40 pounds in a very unhealthy way and am pretty malnourished because of it. To gain that nutrition back? I am drinking a Boost nutrition shake every morning — generally, elderly patients drink these, so the tally of things making me a 23-year-old geriatric woman continues to grow!
The diet, which I will discuss momentarily, is pretty limiting so I am working on a regiment of vitamins to take as well. Unfortunately, right now they all end up making me feel like what I imagine a nauseated pregnant woman feels like during her first trimester — not something I know anything about, but it is not encouraging me to find out more. Time will tell with the vitamins if we can work those out, but so far when I have taken them at various times of the day, no matter with food or without, I feel like I want to just lay on the floor and die until my body figures out what to do with them.
Diet and Crohn’s
As mentioned above, this has been the biggest adjustment for me. The nutritionist gave my Dad and I some papers on the diet they recommend for people who have a flare up of Crohn’s. I was too loopy to read, so Dad started going through the no’s on the list.
Literally everything I had in my apartment to eat was not allowed.
No fresh fruits, no raw vegetables, no whole grains, no nuts, no dairy, no alcohol, no caffeine no, no, no, no and more noes.
I buzzed the nurse for an anxiety pill.
*Deep breaths* “So, what can I eat?”
- Canned or cooked vegetables, examples green beans and green peas. Nothing leafy or with skins like tomatoes.
- Canned fruits or melons (watermelon, honeydew melon, cantaloupe) or grapes
- Breads or grains made with white or enriched flour, think Wonderbread, oatmeal, potato bread, white rice-based things
- Hummus (Huzzah!)
- Smooth peanut butter
- Low-fat meats, mostly turkey, chicken and tuna right now, grilled. No fried things.
- Potatoes without the skin
- Non-dairy products like Lactaid (I haven’t even bothered.) This is mostly for people who have had lactose intolerance issues in the past, which I haven’t. I am slowly trying things with diary to see how I do, but I don’t want to push my luck.
Generally, if I am going to eat processed foods or pre-packaged things, they need to have 1-2 grams of dietary fiber per serving because anything else would make my colon work too hard while it is healing.
If anything, the diet has caused me to become more creative and think about food in a different way. Also, the idea of “healthy food” in a very different way.
I’d been very into making giant, filling and wonderful kale salads with chicken, apples, nuts, goat cheese and a light balsamic dressing for a lot of my meals. I felt so healthy and happy! Kale! Salad! Where could I be going wrong?
But with this diet, I have had to come to accept that Tortino’s pizza rolls have 1 gram of dietary fiber and they have more flavor than a piece of bread with butter, so they might be a decent lunch option during a flare up (I’m not mad about it.) Also on the approved list some how? Pringles chips. Who knew?
To be perfectly honest, when I realized I can go to Chipotle and order a white rice bowl, chicken, guac and a tiny bit of cheese, I about cried.
I absolutely hate being that person to ask restaurants to change an item on the menu for me. This I acknowledge I am going to have to get over very quickly.
I am also keeping a food diary for the rest of the foreseeable future to help me track what I am eating and help pinpoint things that don’t work so well for me. It is green and cute, please remind me to write in it if we eat together!
Overtime, the doctor says that I will be able to slowly re-introduce foods that I used to eat into my diet and see how I do with them, but it will be a trial and error process. There may be some things that never sit well with me again and then I will have to choose to eat them and feel miserable, or not eat them and keep on keepin’ on.
How can you help?
I definitely underestimated the emotional toll that having to constantly be examining restaurant menus and ingredients in things is going to take on me. I’ve always thought that two heads are better than one, and over the past week I’ve found if I can discuss a menu item or strategize a couple of things I can put together to make a meal with another human being that I know and trust, it makes me much calmer about the whole ordeal.
If I look like I feel rotten, I likely do. I am still going to try my best to be my cheery self and do whatever I can for you, but I may work slightly slower or be less focused when I am having abdominal pain. It is distracting and also very frustrating for me. It is especially frustrating because most of the time I just want to get things done and work on another thing for you! I am also TERRIBLE at asking for help. Let’s work together to break me of this habit. I promise, Internet, to admit when I need help and to ask for it, if you in turn can be a warm friend and help me out.
If you have questions, please just ask me. I am happy to talk about my diagnosis and how things are going. One of the most frustrating things I have found so far is that there are lots of support groups online for those with every extreme cases, but very few resources for those who have just been diagnosed or who are looking to manage their disease without surgery (which, by the way, does not get rid of Crohn’s. Surgery only removes extremely damaged parts of your GI system that would cause further illness.) Odds are, especially my journalist friends, if you have a question about something, I probably either have had it and have an answer, or should ask my doctor about it. Help me by learning more with me!
Thank you for reading. Thank you for understanding. Thank you to my Dad, who has stayed with my over a month in Dallas helping me get on the road to remission and to outfit my apartment for the changes I have to make. Thank you to my Mom, who despite needing to stay home in Kansas and work has only been a text or call away for support or explanation of medical insurance. Thank you to my friend and colleague, Will Pry for being the most amazing of humans during all of this and making sure I am taken care of and that others who care about me are informed and know what they can do. Thank you to all of my colleagues at The Dallas Morning News who have continued to make sure I am in the loop on our work as we’ve re-launched GuideLive.com (look at this now and love it.) Thank you to my friends and family near and far who have Facebooked, tweeted, texted, called to check in and make sure I am doing OK. Thank you, thank you, thank you.
In the making of this blog post and with the help of my pain medication I fell down a YouTube blackhole of music from middle school. For your pleasure, or maybe horror, I here are links to some of the videos I watched all the way through. (They will open in new tabs for y’all.)
“All the Small Things” — Blink 182 (I missed out on all of the Backstreet and N*SNYC references during my youth. LOL-ing extensively now.)
“Mr. Brightside” — The Killers (Dat eyeliner.)
“I Write Sins Not Tragedies” — Panic! At the Disco (Again, eyeliner. Full disclosure: High school me wrote a passionate article about how this band getting rid of the exclamation point ruined their music. Oh how my career began… I will admit they hooked up with some solid video production people)