I was in the ER for about five hours and then admitted to the hospital. This was my first experience being hospitalized and I hope I don’t have to repeat it. It wasn’t a nightmare and I loved my nurses and the fact that I had a room to myself (that made it so much more bearable) but never again.
For three days I could not have anything by mouth. This was to facilitate bowel rest and it was absolute torture. I am someone who drinks the recommended amount of water per day. I have to. I seem to always be thirsty. Not being able to sip on water throughout the day was a constant nagging annoyance that drove me crazy. Also my lips began to get really chapped and they would stick to my teeth. So I would smile sometimes and then try to close my mouth and part of my lip would get stuck. It was pretty funny/creepy looking. I did catch up on a lot of sleep though. Every time the nurses shot me up with steroids I would get really sleepy and drift off to la-la land. The stress on my body was greatly reduced while in the hospital so that’s why it wasn’t so horrible. My body was hydrated for once, not having anything by mouth really gave my bowls a rest, and pain medication made it possible to sleep.
I had to record all the times I went to the bathroom. Once the number fell to an acceptable level (I can’t really remember, I think three) they let me have liquids again. Hallelujah. I went through the same process to prove I could have solids too. I started to notice that I was swelling up though. The wrist band was getting really tight, my hands were swollen, and my knees were gargantuous. When I would get up to walk around I felt like a water bed. I was finally released on the fifth day mid-afternoon. The whole rest of the week I slept and lost all my water weight.
Moving On
At first, I did not notice any symptoms from the Prednisone. But by the second week, my brain would not shut up. It moved a mile a minute and I had so much excess energy. My family got exhausted watching me. I would sleep for two hours and then be back up, mind and body racing a mile a minute. This blog actually started with all that excess energy. I researched blogging and photography non-stop for a month or so and then started creating recipes, photographing food, and writing.
It was a great outlet for me because even though I had excess energy, the Prednisone turned it into a complicated obsessive and emotional stew that was constantly boiling over. I could not for the life of me direct the energy and drive to other aspects of my life (THESIS THESIS THESIS). I HAD to work on blogging period. I was extremely sensitive and would have emotional break downs, instigated by something that interrupted my routine (grocery store not having a specific ingredient, not being able to finish a project, being unable to run the errands I needed to, etc.). I would walk around looking for what I needed or I would stare into space and the pressure would build and build and I wouldn’t be able to talk. I would choke on my words and have to just step back, cry in my room, breathe deeply, and then rejoin the world.
You can’t be on Prednisone for a long time because of the side-effects but you can’t go cold turkey on it either. So as my doctor reduced the amount of Prednisone, I was put on a new drug to bolster the Remicade and serve as a permanent addition to my medication routine. When you go into a flare while on Remicade and have to take steroids to get better, more medication has to be added. Once the steroids are taken away, your body struggles to maintain remission. I was put on Mercaptopurine (6MP) and eventually on Allopurinol as well. 6MP can cause uric acid levels to increase and Allopurinol helps the body metabolize the toxins faster so that you don’t get a toxic build up.
So there I was, blogging, creating recipes, and taking pictures while healing and monitoring my health through food journals and bi-weekly blood tests. I was focused on the positive and again, sometimes it is hard to see the truth about yourself. My parents record my current downfall as starting as soon as I took my last Prednisone pill. And if I flip through my food journals (I record both food and bowel movements) then I guess they are right. But hindsight helps in making that call.
November through January I felt good. In February I started having some problems again. I wasn’t having bowel movements everyday (which I liked in the beginning) but a pattern started to develop. For a week and a half I would have somewhat normal bowel movements but then I would have a very painful day where I would be going every 30 minutes for 6 to 8 hours. I described my symptoms to my doctor and she thought I was experiencing constipation with painful overflow every 2 weeks. Both of us did not think it was a flare yet because even though I was occassionaly having painful bowel movements, my joints weren’t hurting, I would recover and feel perfectly fine the next day, and my inflammatory markers were still at acceptable levels. She suggested I start taking a dose of MiraLAX every day and 25 grams of fiber like Metamucil. The Metamucil made my gas really bad and I was rushing to the bathroom a lot in fear of going in my pants (which I am sad to say, happened a couple of times). Eventually I felt like it was maybe (??) working a little. But I was still on a strange two week schedule so it was always hard to judge the results.
Hello ER Again…
I had been taking the MiraLAX and Metamucil fiber supplements for about a week and on February 12, I had a Remicade infusion. The day after the infusion, I got a head cold that lasted for about 4 days (Feb 13-16). I took Mucinex night time cold and flu once each night and recovered pretty quickly. Around Feb 17 my bowel movements got progressively worse and by the 23rd I was rushing to the bathroom 15 to 20 times a day with extremely painful cramps and spasms or bowel movements. Because my symptoms continued, my doctor ordered an x-ray of my abdomen to see if I had an obstruction or large stool burden in my colon. On February 27th the results of the x-ray came back. It showed that 50% of my colon had stool in it. My doctor asked if I wanted to try a flush over the weekend to get most of the stool out and I said yes. I figured, better out then in. I did the dreaded MiraLAX-Gatorade flush over the weekend, which is when I started experiencing other symptoms such as fevers, chills, and joint and muscle aches and pains. By Monday March 2nd I had a 101 fever, was going to the bathroom every 30 minutes with either bloody mucus or fully formed stools, my anus/rectum was burning and there was a constant pressure from my lower back to my anus, and my lower abdomen hurt to touch.
Summary: PAIN PAIN PAIN PAIN. The last two weeks of February and the beginning of March I was basically a quivering mass of raw nerve endings. The fevers made everything even more painful and at one point, I was huddled in my layers of clothes and electric blankets crying that I just wanted to be normal. It is not often that I break down to self-pity and despair but I had about all I could take. I went to the ER on the 3rd but unfortunately I did not get much help. I was there all day and even though I was set up to receive IV fluids (my blood was spectacularly splattered everywhere because the nurse dropped some part of the set-up after she stuck me) I was never given any fluids. Each time someone would come into my room they would say, “Oh you don’t have an IV, we’ll have to get you one.” Throughout the day, my blood was tested, urine and stool samples were taken, I got a CT Scan done, and last but not least, I was fully awake and conscious during a proctoscopy, where I got to see all the white ulcers all over my colon (the nerd in me has to admit that actually seeing it live was kind of cool even though it was extremely uncomfortable-especially whenever they took biopsies).
The blood results (which came back after I was released) showed that my inflammation markers were way off the charts. When it comes down to it, these results were the most annoying because they contributed to me not getting help sooner. I had been getting my blood tested periodically every two weeks. The last blood test I had, two weeks before-during the time when things were starting to get bad, my inflammation markers were still within an acceptable range, which to my doctor meant that I was not in a flare. I should have gone to the ER earlier and being hospitalized would have helped me greatly (bowel rest works wonders but can’t really be done without being hospitalized). It wasn’t until I was in the ER that my condition became more clear. The CT Scan showed that my whole colon was inflamed and I saw the ulcers myself during the proctoscopy (the GI doctor who did the procedure said, “Yep, you’re in a flare.” I said-in my head- “NO SHIT-I HAD NO IDEA!).
I was released soon after with directions to go on a low residue and low fiber diet, drink plenty of electrolyte fluids like Pedialyte or coconut water with some iodized salt, and to take 60 mg of Prednisone a day. I was ready for the Prednisone to work but I forgot that the last time I had the benefit of getting it injected straight into my veins for four days while in the hospital. I could still hardly eat or drink anything without suffering intense pain. I did not want food at all and was basically force feeding myself for 2 or 3 days until the medicine finally started kicking in. Luckily my follow-up appointment with my GI doctor was on March 5 and she sent me to Infusion to get two bags of IV fluids and an extra dose of steroids to help me out.
I’m still on 60 mg of Prednisone and blood results show that I have not made anti-bodies to the Remicade. This means that the only part of my medication routine that is changing is how often I get Remicade infusions. Instead of every 8 weeks I am now going to go every 6 weeks. By the end of last week I was still falling asleep constantly and couldn’t go on short walks without being exhausted. My blood pressure was extremely low and I have been going on daily walks to try and get it up. This week has seen a lot of positive changes. I am able to go on long walks now or a very short run/long walk without spending the rest of the day in a dazed stupor (however, I am still extremely tired throughout parts of the day). My diet is still very boring. I can’t have that many vegetables (carrots, spinach, parsnips, and mushrooms are pretty much all I can handle and in very small amounts) even when they are steamed, sautéed, or roasted. I’m in a similar place with baked and canned fruits. I’ve added back into my diet sourdough bread and saltine crackers. They give me calories, help slow down my bowel movements, and help settle my stomach. I was on a strict SCD diet for over a year and while it has helped me a lot, it has not cured me. I will still adhere to most of the diet but until I can add more fiber (greater amounts of fruits and vegetables, nut products, and almond and coconut flour) I will stick to refined breads and crackers.
What’s Next?
I think how I set up the My UC Story illustrates the kind of optimism I held in the beginning. I did not foresee me having to continue to add pages about my healing journey because I thought I would stay in remission. There is a limit to how many pages a blog can have, so from now on I will be continuing my health updates through blog posts. I want to get back to posting recipes and food porn pictures soon but right now, I have no energy for that. I am struggling everyday to get up, eat, not freak out, exercise, work on my thesis, and not fall asleep all the time. Also, food is not my life right now and originally, I wanted this blog to be about so much more than just food.
I realized I was not painting a full picture of my life with UC when family and friends who read my blog where shocked and surprised when they found out what I was going through recently. I didn’t mean to hide my illness. Food and blogging had turned into a haven and place of positive thinking and creativity. But in my reality, food isn’t always safe, thinking positively is good but can sometimes be a way to lie to yourself and others, and creativity is stifled from the trials of illness and healing. I need to be honest with myself and therefore, I need to not only write about food. Thanks for reading and I’ll write another update soon. The topic is going to be about pain and being honest with yourself and others as well as what is working for me right now (just in case any of you are going through similar health issues-advice helps).
