The Plan is There is No Plan-The Realities of Living With Ulcerative Colitis
I am beginning to feel much better and I’ve recently accomplished some big goals in other areas of my life. As you may know, I’m a graduate student trying to earn my Master’s thesis. Ever since I was diagnosed with ulcerative colitis, my timeline for defending my thesis and turning it in has been pushed back because my health keeps relapsing.
My experience so far has taught me that planning in advance is really hard. Although I like to remain positive, making judgement calls about deadlines based on how my health might be three months from now is impossible. My longest period of health-where I was symptom free, had normal energy levels, and was unafraid of being away from a bathroom-was four months. The flare that hospitalized me (October 2014) occurred after turning in the first draft of my thesis. In my program, once the first draft is turned in, you are on a fast turn-over rate for getting a second draft out, defending your thesis, and turning in the final version. Obviously, I was unable to accomplish this.
I took the advice of my committee members and forgot about my thesis for a while and focused on getting better. And boy did I need that, because the first time being on Prednisone made me crazy. I focused all the excess energy into this blog because it was all I could do. I really did try to direct some of it into my thesis, but my brain and body were moving too fast to focus the complexities of my thesis into any kind of productive output. Once the new semester started in January and the effects of the Prednisone were waning, I re-contacted my thesis advisor and began the process of editing and preparing for my thesis defense. But I was already feeling the physical effects of a flare and was not getting a lot done. It is extremely difficult to maintain a train of thought and arguement when you keep having to (carefully) toss your computer aside and rush to the bathroom.
When February rolled around and I realized I might be on the start of another downturn, I contacted my thesis advisor again and confessed to her that I was beginning to accept some of the harsh realities of living with this disease. I told her I couldn’t say what my health would be like month to month and that making long-term plans and deadlines for my thesis was extremely difficult, if not impossible. We decided that the new strategy was to take advantage of my good health NOW. I would defend my thesis in mid-March and use the feedback to generate another draft (my advisor felt that my first draft was good enough for my other committee members to read-they usually only see the second draft-so I got to bypass a step in the process).
And then BOOM. Within two weeks of this decision I was extremely ill, in the ER, and on Prednisone again. I forgot all about the looming defense for the first two weeks of March (especially since my advisor still hadn’t contacted me with an actual date and time for my defense). If possible, my body was even more traumatized this time and healing was extremely difficult. By March 15 though I was making good progress and began to devote time to making small level edits to my thesis. And then I got the e-mail on March 21st. My defense was on Tuesday, March 24th at 2:00. AHHHHHHHHH. I panicked. But then I considered my options. Should I post-pone again or take the jump and work really hard for two and a half days to prepare and practice a thesis defense powerpoint presentation? I decided that the stress of a few days would be better than delaying again and having the burden and stress of an unfinished thesis hanging over my head.
This time, I made the decision to use the security of being on Prednisone to get things done. While I am on it, I am safe from suffering from an extremely bad flare. The side-effects aren’t as bad this time, although as I write this at 3:00 in the morning I realize they might just be delayed. But in the end, my decision paid off. I killed my thesis defense, got great feedback that will make the larger level edits to my thesis easier, and received a new deadline to work towards. I have about 20 days to turn around another draft so that my committee members can take one last read and get their comments back to me before I turn in the final version on May 1st.
I judged right. I feel that an extreme pressure has been lifted and even though I am still struggling with my health, I have managed to accomplish some great things.
What’s Working for Me Now
I am still on a low-residue/fiber diet that is pretty boring (thus no posts containing recipes and food porn photography-although I have created two meals I really like that I want to share eventually that fit the SCD diet and are low-residue-fiber as well).
I am still eating sourdough bread and saltines in addition to canned and baked fruit (peaches, cherries, bananas, strawberry jam, applesauce), steamed veggies (carrots, parsnips, mushrooms, spinach, onion, asparagus, zucchini), eggs, SCD legal yogurt, meat (nothing processed and in small amounts), and homemade peanut butter. Nut and coconut flour still have too much fiber and because I can’t eat very much fruit and veggies the sourdough bread and saltines really help me with my calorie intake. I also made some liver pate from “Healing Foods: Cooking for Celiacs, Colitis, Crohn’s and IBS” that I actually liked to help with my iron levels. I noticed I have problems with complex flavor profiles as well. Simple food with not a lot of different components tend to be better. So BORING. The Foodie in me is kicking and screaming for some more complex stuff. I am also drinking a lot of fluids besides water. I was drinking a ton of water (enough where even I was tired of it) and still wasn’t staying hydrated so I had to add some supplemental beverages. I drink a combination of Pediatric Electrolyte (tippy toes by TopCare), coconut water, and watered down Welch’s 100% Grape Juice everyday along with lots of regular water to stay hydrated.
For managing all the Prednisone baggage, I’ve found that keeping a routine is extremely helpful. However, I don’t add specific times to my routine because that can cause a Prednisone breakdown if things don’t go exactly as scheduled.
I wake up, take my pills, and eat a saltine with the Prednisone because they are the type of pill that leaves a nasty taste in the back of the throat. Then I make breakfast: two eggs scrambled and one slice of sourdough bread with butter on one half and strawberry jam (homemade with frozen strawberries and honey) on the other. Having the same breakfast every morning is part of the routine. I digest a little and then get ready to go on my morning walk or hike. These daily outings have really helped me get my blood pressure back up and some of my energy back. It was so incredibly hard in the beginning (walking one block would do me in for an entire day) but I cannot recommend it enough.
After my walk I have a snack (saltines, sourdough bread with peanut butter, or yogurt and fruit) and a can of coconut water. I often come back from walks feeling a little shaky or like I am still moving even though I’m not. Having a small snack gets rid of this feeling and coconut water works the best for making me feel replenished after physical activity. Again, I take about 30 minutes to digest the food a little and rest.
My next step in the day is to begin and get ready to go to a Starbuck’s or other cafe to work on my thesis for at least two hours. This is part of the routine that I had to add out of necessity. I had to get out of the house because I just wanted to sleep and rest after the first half of my day. I also needed a little amount of caffeine to focus my attention on my thesis. I looked up the nutritional values of drinks at Starbuck’s and discovered which ones had the least amount of caffeine (I was a plain black coffee drinker but UC has taken away my ability to handle it anymore). I decided to go with a tall latte with whole milk (I started with just half a shot of expresso instead of the standard one).
Although I strictly followed the SCD diet for more than a year, I have always felt that lactose is one of the “illegals” I handle best. It is refined sugars that cause me the most problems these days. This is why I chose plain old milk in my latte rather than almond, soy, or coconut. All of the common brands used by cafes contain refined sugars, artificial sweeteners, guar gums, and carrageenan, all of which do more harm to me than drinking milk. I was so happy when this worked. The tall latte has just enough caffeine in it to focus my attention on what I’m working on but not enough to make me jittery or have to go to the bathroom. I have noticed no ill effects from drinking milk. The added benefit of using whole milk and not adding any syrups is that drinks that are high in fat and low in sugar tend to reduce hunger cravings and prevent you from crashing. One of the problems I have when I write is that I often will be tempted to give up and go home because I get a little hungry, but drinking a tall latte with whole milk acts as a kind of meal for me.
Once I’ve done my work I go home and have another small snack. The rest of the day is organized around resting and figuring out what to have for dinner, which I usually keep pretty small. I often have some peppermint tea around this time too. It helps settle my stomach and relaxes me.
I’ve outlined all this because I often read what worked for other people while they were in flares. It helps to know you aren’t the only one going through this and that other people are searching for answers as well. It can be hard figuring out works for you. Everyone’s experience of UC is different and finding your path can be frustrating and confusing. I still feel like I’m lost in the forest sometimes, cutting through paths unknown.
Anyway, that’s all I have for now. I have a long day at Infusion today because I have both an iron and Remicade infusion scheduled. I plan to work on my thesis (or maybe sleep since it is now 5:00 and I’m still up).