how do you keep your jpouch healthy?

At the beginning of a very busy week, I figured it was a good idea to write down some thoughts that I have in my own head about how I’m going to maintain health for my jpouch for not only this week, but also moving forward towards a busy summer.

I’ve received a lot of questions lately in regards to how I turned the health of my jpouch around in the past seven months. It was no easy feat, and what I was faced with was serious. Hearing that I was at risk for losing my jpouch took me back to a scary place, one that I never thought I’d have to re-visit. What I needed to realize 5 years ago and in October is that coming out of the dark side of the challenges that life has thrown at me has always made me a stronger person and a better advocate for Crohn’s Disease and ulcerative colitis. Looking back on the hardships and pain that I have faced over the past five years, I can say that I feel better now than I have since I was 22 years old. (I’m 28….I think…lol).

How did I do it? It takes more than just physical health, a lot of it stems from mental health. I was just telling my mom over the weekend that Inflammatory Bowel Disease affects so much more than just your physical health. It takes such a strong toll on your mental health as well. IBD makes you afraid to go anywhere, do anything. I’ve compared having IBD to being in prison, because thats exactly what it’s like. IBD takes away all of your freedom – you can’t eat, sleep, breathe. The pain is unpredictable and unbearable when it does come on. IBD doesn’t just affect the patient, it affects support systems. Every aspect of your life is impacted when you are in a flare.

What’s hard to do as a patient, is get to a place where you are managing your disease, not vice versa. I let my disease manage me. I let it walk me like a dog. My ulcerative colitis chose when I would go to work, when I would eat, when I would sleep, where I would go, everything.

Until now.

There’s a lot that plays into what majorly affects the way I feel, as I’m sure many IBD patients can agree. Stressed at work or with something that is going on in life? I don’t feel well. Don’t get enough sleep? I definitely don’t feel well. Eat something wrong? Pain – which means not feeling well. But, let’s take those main factors and put them into an equation so that the end result is positive. (I started school for web development and I’m currently learning javascript functions which play out like equations, so its all relative).

if (poorDiet) {
console.log(“Meal prep and eat healthier”);
} else if (outsideStress) {
console.log(“Exercise and eliminate negativity”);
} else if (noSleep) {
console.log(“Start a sleep schedule with an early bedtime”);

If I typed these conditions into my body, I would feel better – guaranteed. So, thats what I did. I took a step back and I analyzed what choices I was making in life that were causing me to feel so poorly. All three of the above were parts of my life in the fall and winter. I had a poor diet, external influences that affected me in a negative manner (this includes people) was not exercising enough, was not taking a probiotic, and was handling stress poorly. Therefore, I wasn’t getting enough sleep not just because of stress, but because I was up going to the bathroom constantly again. They all play off of each other. And just like in javascript, that “if…else” statement of my life would keep repeating until something(s) changed.

If you don’t feel the best that you should, maybe its best to take a step back and put your own life into an “if…else” equation. You don’t have to lay it out in javascript terms (I mean, you can if you want…) but definitely write yourself a list of why you think you aren’t feeling good. Chances are, you know why.

If you don’t, start with these questions:

  1. are you stressed?
    1. why are you stressed?
    2. what can you do to eliminate this stress? how can you better manage it?
  2. are you eating as well as you should?
    1. for jpouchers, I’m not talking about green vegetables and fiber. those are both big no-no’s. I’m talking about staying hydrated (with G2 or Powerade 0), eating little to no carbs, and tons of lean protein. No dairy, no carbonation, no sugar.
    2. implement a probiotic into your daily routine. most of the probiotics i have chosen have come recommended by my GI doctor and are available over the counter. make sure to ask which supplement might work best for your current scenario.
    3. when i was struggling with my diet in October, i went to a dietician. is this an option for you? if not, do your research, meal prep. plan which days you are going to make what food. get yourself into a routine.
  3. are you exercising?
    1. dr.shen (aka pouch jesus) let me know that exercise for jpouchers is crucial. it not only helps de-stress, but it helps keep oxygen flowing through your blood. any oxygen delivered to your jpouch is GOOD.
    2. just had surgery and can’t exercise? try breathing exercises or go for small walks outside.
  4. are you sleeping enough?
    1. if I don’t get at least 10 hours of sleep at night, i flat out don’t feel good. that doesn’t make you or I lazy. we have chronic conditions that need managed – or they will manage us.
    2. set a time to go to bed. turn off your tv, your phone, everything. that’s one thing I really had to work on back in october – putting down my electronics at a normal time. I turn all of mine off by 10 p.m. on weeknights.

In no way shape or form am I a doctor, but I have been through enough with my ulcerative colitis, pouchitis, and cuffitis to know what it took for me to turn around my poor health. If you are bleeding, going to the bathroom just as much as you did with your ulcerative colitis, in pain in your rectum, nauseated constantly, and unable to rest, you need to contact your doctor immediately.

I have found that if I am having a day where I’m having one of the above symptoms, its usually caused by a factor that I can now control.

I also cannot stress enough how long it truly takes to recover from your final surgery. It took 3 years of me shouting to myself, “YOUR BODY WAS NOT MEANT TO WORK LIKE THIS. YOU HAVE TO BE PATIENT,” to finally grasp that it’s true.

Actually, I had to suffer consequences of going back to work too quickly, stressing about what I was going to do with the rest of my life, and eating poorly. I’m glad I did, though. Because now I can look back at that time and realize what I did wrong. WHY I felt the way I did, so that I can help those who are going through phase 3 recovery now.

People who live with IBD are impatient, type-A, control freaks, perfectionists, people pleasers, over-workers, over-analyzers, over-EVERYTHING. I’ve met enough people with Crohn’s and ulcerative colitis to know that we all like to have control over everything we do. Why not focus that control over the way we feel?

Stay positive. Even in your darkest days its important to remember that you will get through it, you just have to figure out how. You have to get to a place where you make yourself responsible for the way your life with a chronic condition is going to play out. Make a to-do list, go to therapy, talk it out with a friend or co-worker, make a doctors appointment, do something that will ensure that you are going to take action. 

Stop letting your disease manage you. You’ve got to figure out a plan, because like many doctors have asked me, “Do you want to live the rest of your life feeling terribly?”

No. I don’t. And neither do you.

One thought on “how do you keep your jpouch healthy?

  1. Your story is my story. Thank you for being able to relate 100%. After receiving my j pouch it took me a while but I learned what makes me feel better vs worse. I will be reading your articles. Thank You!

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