My post UC flare routine that helped me manage my physical and emotional symptoms
My post UC flare routine is fairly boring. I am still on a low-residue and low fiber diet (snore). Sourdough bread and saltines are still doing well for me as well as
- Canned and baked fruit (peaches, cherries, bananas, strawberry jam, applesauce)
- Steamed veggies (carrots, parsnips, mushrooms, spinach, onion, asparagus, zucchini)
- SCD legal yogurt
- Meat (nothing processed and in small amounts)
- Homemade peanut butter.
Nut and coconut flour still has 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.
Complex flavor profiles give me problems. Simple food with not a lot of different components tends to be better. It’s all so BORING. The foodie in me is kicking and screaming for some more complex stuff.
I am also drinking a lot of other fluids besides water. Only drinking water wasn’t doing enough for me so I had to add some supplemental beverages. I drink a combination of Pediatric Electrolyte, coconut water, and watered-down Welch’s 100% Grape Juice every day along with lots of regular water to stay hydrated.
Managing My Prednisone Emotional Baggage
For managing all the Prednisone baggage, I’ve found that keeping a post UC flare 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.
Morning Post UC Flare Routine
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 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 but I cannot recommend it enough.
After my walk, I have a can of coconut water and choose a snack of
- Sourdough bread with peanut butter
- Yogurt and fruit
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.
Afternoon Post UC Flare Routine
My next step in the day is to go to Starbucks or Pure Grain to work on my thesis for at least two hours.
This is part of the routine that I had to add out of necessity. Getting out of the house became a necessary step to prevent me from spending the rest of the day sleeping. I also needed a little caffeine to focus my attention on my thesis.
Before being diagnosed with UC, I was a plain black coffee drinker. But, at the moment, I can’t handle the acidity. I looked up the nutritional values of drinks at Starbucks and discovered which ones had the least amount of caffeine.
My drink of choice became a tall latte with whole milk. I started with just half a shot of espresso instead of the standard amount.
Cheating on the SCD diet
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.
How to not feel alone
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.
Figuring out what works for you is hard. Everyone’s experience of UC is different and finding your own 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 am and I’m still up. Got to love that Prednisone.
Read more about how I finished my thesis with UC in UC Planning Realities: Trying to Write and Defend a Thesis
My Whole UC Story
You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:
- My UC Story: where and when my ulcerative colitis symptoms first started
- Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
- Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
- Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a rheumatologist
- Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
- Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
- Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
- Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
- Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
- Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
- UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
- Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
- Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
- Making Travel Plans with UC: the difficulties in making travel plans with UC
- The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
- Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
- Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
- Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
- You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
- Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
- Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
- Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
- J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
- Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
- Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
- Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
- Part XV – Post Operative Ileus Complications: my painful and scary experience with post operative ileus complications left me very weak, under 100 pounds, malnourished, and very close to death’s door
- Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
- Everything is Shiny and New
- Hitting the Wall and The Privilege of Scars and Wrinkles
- Experiencing Loss and The Power and Comfort of Creativity
- Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years