In my last post, I shared with you my findings on pouchitis. I have many friends with j-pouches. Several of them have had pouchitis. Only recently did I have my first case of it. My j-pouch has always been good to me. I have never had any major complaints. Some things I don’t like about having a j-pouch is the gas pain, the occasional “butt burn,” and the noises that come from being colon-less. Other than that, we get along pretty well together… at least, we get along better than I did with my sick colon. That guy was evil and nasty.
J-Pouch Life
Anyone who lives with a j-pouch can tell you that it’s an adjustment. In some ways, you have to “relearn” bathroom cues. You have to modify your diet. You have to be careful when passing gas (there are tricks for this, too). I’ve learned a lot since my last j-pouch surgery seven years ago… and I’m still learning. Just last year I learned the value of off-brand Metamucil for reducing both bowel movements and butt burn. I still deal with those things occasionally, but it has made a HUGE difference in my life. I’ll share more about my j-pouch tips in another post.
For me, gas is a regular annoyance. I also know that when I eat an excessive amount of sugar, frequency is increased and my stools are more watery. The same thing happens when I eat too many leafy vegetables. Which is a shame because I love a good salad. Usually, when I notice frequency going up and stools becoming looser, I’ll cut back on my sugar and roughage intake and eat more manageable foods. In other words, food that is easier for my j-pouch to process.
Not My Normal Symptoms
It all started on Memorial Day Weekend of 2021. I had been eating a few leafy greens leading up to that weekend (I knew I was consuming too many, but I couldn’t help myself!). I went to my Mom’s with Baby Ninja and Ninja Hubby. Mom and her (then) Boyfriend grilled some burgers, so I dressed mine up with all the fixings (BRING ON THE LETTUCE AND TOMATO, BABY!).
In the days that followed, I ate a few more leafy greens (fool!) and progressively noticed my visits to the bathroom becoming more frequent and loose. To try to re-regulate myself down to 3-5 bowel movements a day, I increased my off-brand Metamucil. And I decreased my roughage and sugar consumption. Then I waited. It usually takes a day or two for my j-pouch to calm down. But this time, it didn’t. In fact, it got worse.
Mayday! Mayday!
After the frequency came the extra nighttime bathroom trips. And the leakage from my fistula also increased. Oh, what fun!–NOT. I started feeling fatigued and achy. Then the abdominal and pouch cramping started. I started worrying at this point and my PTSD was triggered. I had a feeling that something was wrong, but I was in denial. It can’t be pouchitis, right? I’ve been so healthy! It was only a few leafy greens. Then the tenesmus began. It was starting to feel like I had a sick colon again, but without the bleeding.
Because I’d only moved into our house a few more (during the whole COVID thing, of all times to move!), I had not gotten established with a good doctor who could help me with j-pouch issues. So, I took to the internet and found a local guy who specializes in j-pouch and fistula issues! Perfect! A two-for-one deal! I called him up and made an appointment with him.
Hi, Will You Be My Doctor?
They got me in right away. I brought my j-pouch and ulcerative colitis medical records (always a good idea, by the way!) to the appointment. When he came in to talk to me, I explained that I was looking for someone to help me with my j-pouch issues and that if he would rather recommend a good gastroenterologist, that would be cool, too. He was friendly and knowledgable. I felt like he truly was listening to me (BIG BONUS). Then he asked me about my symptoms.
After quickly detailing them for him, he told me that it did sound like pouchitis and that he would put me on antibiotics immediately. Once the round of antibiotics was over, he wanted to schedule me for a pouch scope. He also made copies of all my records (this made me feel like details were important to him). He wanted to put me on Flagyl (aka metronidazole) and Ciprofloxacin (Cipro) for two weeks–this is the first go-to for pouchitis. Unfortunately, my body doesn’t tolerate Cipro well, so we had to go with Flagyl alone.
Colitis Ninja 1, Pouchitis 0
Whenever I’m put on antibiotics, I like to balance it out with probiotics in the form of probiotic drinks (such as kefir). You have to be sure to take antibiotics and probiotics several hours apart or the probiotics will be killed off by the antibiotics.
The first couple of days after taking the antibiotics I started getting worried because at first the pain and the frequency persisted. But after about day three or four, the antibiotics started to kick into gear and soon I was feeling normal again… well, almost. I don’t know if any of you have this issue with antibiotics or not. For many, antibiotics will make you go more often, but for me, after a day or so, I totally have the opposite problem! It stops me up big time.
All that to say, thankfully my bout with pouchitis was relatively uncomplicated. And I’ve been taking better care of my j-pouch, too. I’ve started making kefir shakes that I drink every morning to help me keep my good bacteria going. And let me tell you, it’s been making a HUGE difference. Not only has the frequency been cut down even further (about 2-3 times a day), but the gas has also diminished greatly! So, for the time being my j-pouch and I are on good terms again… the holidays are coming though, so I have a feeling we may be doing battle again very soon.
Stay tuned for my next post detailing my top j-pouch tips!
