"You can eat whatever you want."
Those were the words out of my surgeon's mouth after my reversal surgery to connect my j-pouch when I asked him what I should and should not eat. While those words were music to my ears after over a year of restricting my diet due to Ulcerative Colitis and months of not being able to eat at all from obstructions after my second surgery, they did give me a false sense of hope.
I learned quickly after my surgery that I could not, in fact, eat whatever I wanted. I no longer have active Ulcerative Colitis to tip-toe around, but I do have a shortened and reconnected digestive system and a fragile new organ that will take time both understand and train. After several "wrong" meals the first several days after my surgery, I began to realize that my diet was almost as limited as when I had active Ulcerative Colitis. It was back to the very bland, low fiber, low residue diet that I was all too familiar with.
Now nearing 9 weeks post-op, I have gathered several lists of "safe" foods, "occasionally safe" foods, and "avoid-at-all-costs-or-suffer-the-consequences-for-what-feels-like-an-eternity" foods.
"Safe" Foods:
- Tuna with light mayonnaise
- White bread
- Plain bagels
- Salmon
- Chicken
- Turkey burgers
- Plain Ramen noodles/ plain pasta
- Bananas
- Pumpkin bread (this is a miracle worker for helping to decrease BMs)
- Peaches (canned, with no skins)
- Lorna Doone cookies (these have been a staple since my first surgery)
- White rice
- White flour tortillas
- Applesauce
"Safe on Occasion" Foods:
- Avocados (avocados are full of healthy fats and wonderful for naturally helping with inflammation in the body so I try to incorporate them at least once a day).
- Tomatoes (very well cooked until soft and skins removed. I like to just put a couple in a pan for several minutes flipping often until soft).
- Graham crackers
- Dairy (this really depends on your tolerance of dairy products in general. If dairy bothered you before your j-pouch, it most likely will cause problems with your j-pouch as well).
- Tortilla chips
- Green beans
- Almond butter/ peanut butter
Foods to Avoid:
- ANYTHING spicy
- Spices (garlic, pepper, red pepper, etc.)
- Red sauces (tomato sauce, pizza sauce, spaghetti sauce, etc.)
- Anything BBQ (this is mostly because of the BBQ sauce and spices)
- Chili
- Raw vegetables
- Eggs (this one surprised me, but for some reason eggs do not agree with my new system)
- Sugary foods (chocolate, candy, etc.)
- Grains (oatmeal, whole grain breads and cereals, etc. due to the high fiber)
- Nuts and seeds
- Beans
- Caffeinated drinks (coffee, soda, etc.)
- Fast food/ greasy food
It was very disheartening to learn that after my reversal surgery my diet was even more limited than it was with my active Ulcerative Colitis and ileostomy. Going into the surgery you are given the impression by the doctors that you will be finally released of your dietary chains and can "eat normally" with a j-pouch. While that is true (for the most part) after several years with your j-pouch, there are many restrictions in the beginning. Thankfully, I had a wonderful support system of several j-pouchers who were able to give me a heads up on some of the foods to avoid with a j-pouch. But even with a heads up on some of the major no-nos, it has taken weeks of trial and error to build my list.
One of the best bits of advice that I was given was to introduce new foods very slowly. By slowly incorporating new foods in with your "safe" foods, you can accurately decide if the new food agrees with your system. I like to test new foods out for several days before deeming them OK or not.
My favorite breakfast and snack staple is toast with a thin layer of almond butter, banana slices, pumpkin pie spice seasoning, and a drizzle of honey. Delicious and j-pouch-friendly!
Balancing a healthy diet and what agrees with your j-pouch is not easy. But over the last 9 weeks I have been able to pin down meals that are both healthy AND j-pouch friendly. Do I miss pizza? Absolutely. Do I want ice-cream? You bet. In the big picture, though, these small inconveniences are worth the chance to live as "normal" as possible.
Normal is vastly overrated anyways, wouldn't you say?
Another adaptation that I have undergone is to always know where a restroom is. Most people do not even think to check where the restrooms are when they are in public unless they need to use them. However, the first thing I look for when entering a store, restaurant, gas station, etc. is where the restroom is located and whether it is a public restroom. This was something that I became familiar with when my Ulcerative Colitis was active, but did not have to worry about as much with my ileostomy (trust me, a perk I miss). Road trips have also become a little more difficult than before with carefully timed meals and rest stops- especially for longer distances. That too will get better as time goes on, though.
Have you picked up on a common theme here? Time. Time heals. Sometimes it can be hard to trust in time to heal both physical and emotional wounds, but it truly does. But what time cannot and will not do is make you forget. Time will not completely take away the pain. The scars, both physical and emotional will remain as symbols of time's progression. There is also no standard for how much time it will take. Physically, wounds heal, scar tissue fades, and muscles grow stronger. But emotionally, the pain can hang around for much longer as memories slowly become less vivid and the pain becomes more dull. Even after over a year, the pain that I endured while battling Ulcerative Coltiis and then C. Diff. is still vivid. I remember the long nights of pain, running to the restroom over 20 times in a single night. I remember the hospital stays. I remember sitting in radiology at 3 AM trying to down cups and cups of barium for an upper GI, but so nauseous that I could barely sit up. I remember the alarms going off and nurses running every time would get up to use the restroom because my heart rate was reaching 180 from dehydration. I remember sitting in my hospital room with my parents, in disbelief that the next morning I would lose my entire colon.
But I also remember the better memories from the last year. I remember my first bite of pizza after my first surgery. I remember the nurses clapping as I limped down the hallway for the first time after surgery. I remember the smiling faces that greeted me every time they entered my room. I remember the priceless bits of advice that I received.
None of these memories or the countless others are going to ever leave me. But with time, they will become less vivid and more distant, like looking in your rear view mirror as you drive away.
I am still learning. Every day is a new lesson that I carry on to the next. There are no textbooks, no how-to guides. Out of all of my years in undergraduate and graduate classes this has been, by far, the hardest lesson. In fact, the transition to a j-pouch leaves most patients with so many questions and concerns. Before I went home with my ileostomy I had to watch several instructional videos, I was shown several times how to change my bag by the ostomy nurse and expected to change it on my own before discharge, I met with a nutritionist, and I was given a bag full of ostomy supplies. When I went home with my j-pouch: nothing.
Thankfully, I had been in communication with other j-pouchers ahead of time and was able to have my mom pick up some j-pouch essentials for after my surgery. But what about patients who do not have that opportunity?
I would love to start an initiative that helps to better educate new j-pouch patients on what supplies they may want to invest in, what to expect in the first couple of months after surgery, how to control output, how to identify problems with the j-pouch, and most importantly, what to eat. I am afraid that too many new j-pouch patients are coming home from the hospital with not enough education on their new body and becoming frustrated and discouraged. This is something that I feel very strongly about and I am eager to help future patients both young and old.
As I near 9 weeks post-op, I am still learning to balance recovery, work, and strengthening my body. Still nearly 25 pounds from my post-illness weight, maintaining enough energy to get through a busy day at work can be difficult. After my shift on Sunday I was met with intense fatigue, lightheadedness, pain, and general weakness. It is safe to say that my healing body may have been pushed a little too far for one day. But it was nothing that some electrolytes, a snack, rest, and a warm kitty could not fix.
It is hard to believe that July is almost halfway over! I am clinging to every beautiful day that I have left this summer, but also preparing for my second-to-last semester of graduate school. In less than a year I will be walking across the stage with my master's degree!
Keep an eye out for a new blog post will be coming later this week.
"The comeback is always stronger than the setback."
- Kristen