I get a lot of questions about my life with a J-pouch and the three associated (and successful) surgeries. Every day I am grateful to be alive. Without surgery, I would certainly not be here today. So that alone makes it easy for me to say that 100 times out of 100, I would absolutely do it again. But it’s more than that.
If you don’t know my story, you can check it out here; but basically I had severe Ulcerative Colitis (UC), didn’t respond to medication, and had surgery to remove my large intestine. Now I have a J-pouch. As the name implies, it is essentially when the small intestine tissue is formed into the shape of a J with the purpose of acting as an internal pouch to help take the place of the large intestine after the real one has been removed. Currently, I play professional volleyball in Austria, I travel as much as possible, and I love living life to the fullest. In this post, I want to briefly address the five most common topics that people ask me about: food, bathroom frequency, my surgeries, my energy levels, and social stigma.
- I love good food. That’s why one of my favorite things about my life now is that I can pretty much eat anything that I want to, as long as I chew well. There are some foods that are more challenging than others, but I technically CAN eat most of them if I want. I know that this is not the case with everyone with a J-pouch, so I feel very lucky. It’s all about knowing your body and knowing your limits. Because everyone is different, I highly recommend some trial-and-error and keeping a food journal (or at least taking note and paying attention). I have found that certain foods help me to go to the bathroom less (white rice proves most reliable) and others increase the frequency (sugar is the biggest culprit, especially in large amounts). I have found that spicy foods are not so much fun (but that’s ok because I have never really liked spicy food anyway). But unfortunately the same is true if I eat/drink a lot of coconut. I love coconut anything, so it is *usually* worth it for me. I still need to do more investigating on specifics (brands, other added ingredients, coconut water vs milk vs cream vs raw etc). Like many others with UC, some of my “safest” foods are often the “unhealthy” options like a hamburger. But as an athlete, I really try to find a good balance and I feel better overall when I eat a more “healthy” diet. Fruits, veggies and salads are great; but foods high in insoluble fiber increase my output/frequency a little (still nowhere near as much as sugar does though). And sorry if this is too gross, but I often notice that many insoluble fiber foods pass looking the same as they went in, leaving me to wonder if I am getting much nutritional benefit from those foods. I also take a chewable multivitamin with iron and have noticed it really does make a difference in my energy levels. I also get a lot of questions about alcohol. I am not a huge drinker, but I have noticed a difference in my digestion based on the type of alcohol I consume. I’ve never really liked beer; but the couple times since surgery that I did drink a good bit of it, I absolutely regretted it (digestion-wise). As far as I can tell, hard alcohol doesn’t affect me any differently than it did pre-surgery (it does speed things up a little, but nothing too crazy). Wine is usually ok; but sometimes it does speed things up more than I would like. I personally have no problems with gluten or dairy. My small intestine tissue has been an absolute champ in picking up the slack in my hydration after my large intestine was removed. I still need to pay attention to my hydration, and sometimes I get light-headed when I stand up because of it; but it is absolutely manageable. I suggest drinking more than just water and staying away from sugary drinks. Next super important point – chew your food. No matter what you are eating, chew it well and eat slowly to help avoid a blockage (especially soon after surgery). Plus there is plenty of other research about the benefits of chewing your food well. Chewing or chopping up tough leafy greens like kale is especially important; and they are also easier to digest if they are cooked. My last and maybe most important takeaway is to just learn to listen to your body. Do your research and pay attention to how YOU feel eating different things. Try adding things slowly before you go and eat a full meal of it. Stay tuned for more information on my nutrition 😉
- If you don’t like bathroom topics, you’ll probably want to skip this one. I go to the bathroom around 5-8 (+/-) times per day. But it does fluctuate and depends on many factors – mostly on what, how much, and when I eat; but also on stress levels, activity, and how much I decide to “hold it”. In general, by late morning I am mostly “empty”; so I won’t have to go to the bathroom until at least a few hours after I eat my first meal. The biggest difference from pre-surgery is the urgency. Before, when I had to go to the bathroom, I had like 10 seconds to find a bathroom or it was going to be too late. As many with severe (or even moderate) Crohn’s or UC can sadly relate, sometimes it was simply impossible to make it. But now, when I have to go, I should usually go in the next hour or two before I REALLY have to go. Sometimes longer, sometimes shorter. But keep in mind that this is a while after surgery. Right after my last surgery, it was actually quite frustrating trying to hold it. I hadn’t mentally prepared for the challenge and thought that something was wrong. I was very worried that I had made a terrible mistake, and that I would have to have yet another surgery to reverse my J-pouch back to a permanent ileostomy. And full disclosure, for some people this is the path they end up needing to take. I felt like I was going 15 times per day again – and that was even holding it as much as I could. I talked with my surgeon about my concerns and troubles, and he prescribed Imodium for me. His advice was to take it every 8 hours for a while to help teach my body to slow things down. When I felt ready, I could increase the time in between doses by an hour, until slowly I was able to wean myself off of it altogether. Since about 6 months after my last surgery, I have not taken any medication for my UC! P.S. Even if I had needed to go back to a permanent ileostomy, I would have been extremely happy with my life and would have been pleased with my choice to at least try the J-pouch.
- As far as the surgeries go, let me start by saying that I was at the Cleveland Clinic and HIGHLY recommend them. My first surgery was August 29, 2014 and my last was in April 2015. My 2nd and 3rd surgeries were scheduled at the very early end of the norm because I was fortunate enough to recover very quickly. Everyone’s timeline is a little different. The first was pretty much an “emergency” surgery to remove my large intestine and form an end ileostomy. I was so close to death; so recovery from that one was rough, hugely because of the state I was in leading up to it. Also, my surgery was an “open” surgery, meaning that I was cut open from about an inch above my belly-button to right above my pubic bone. So a big part of my recovery was dealing with the pain from my abs. Things like riding in the car over small bumps, standing, or God forbid a sneeze or cough… they were suddenly a big challenge. But still, I felt so much better than I had before the surgery. Even though I could hardly walk the week after surgery, I reached my goal to run my first 5k (Hot Chocolate Run Chicago) just about 9 and 1/2 weeks after my surgery! The second surgery was the most involved as far as rearranging my insides goes. My small intestine was stretched down to form the actual J-pouch and I had a loop ileostomy. It was also “open” so I had the challenge of healing my abs again. I could tell there was a lot of swelling in my intestines; and like the first surgery, I had to start back at a liquid diet and slowly progress from there. Although this is often the hardest of the three surgeries to recover from, my recovery was quicker than the first because I went into it so much healthier. The last was the least invasive and was simply closing up my intestine at the ostomy site and pushing it back in my body. I could now go to the bathroom again! I only wish I would have mentally prepared for recovery to take a little more time. I thought that recovery would be so easy. But I was surprised with a new challenge of trying to “hold it” again. But my body learned, and I am happy I stuck it out. My biggest advice for recovering from the surgeries is to sleep as much as possible (it really is the greatest healer) and to listen to your body while continuing to challenge yourself. If you want more info on the surgeries, stay tuned for information on the ins-and-outs of each one!
- My energy levels now are honestly pretty great. Obviously it depends on so many factors but I feel as though I have as much energy now as I had before I ever got sick. I can participate in everything for my volleyball team (weight lifting, conditioning, practices, games, etc.) and can go on adventurous vacations. Sometimes I keep snacks like apple or orange slices with me to munch on, and I definitely need to pay attention to my hydration during particularly hard workouts. I sometimes have to take a bathroom break but nothing uncontrollable. Without a doubt, nutrition and proper sleep have the biggest impacts on my energy; but so do my mental health, stress, and other random factors. I have been able to hold down a normal job (before I got back to playing professionally), sometimes working 80+ hours per week to finish projects etc. My boss and coworkers were all understanding about my recovery process from my surgeries, and I was lucky enough to have a pretty flexible schedule.
- I have found that almost everyone I meet is very non-judgmental when it comes to my scar and my story. I used to be really scared of what people would think about my UC. But I have realized that if someone has a negative opinion, it is because of them and not me. I know that I want to surround myself with open-minded and accepting people. If someone is closed-minded enough to think any less of me because of my scar (or when I had a bag), then I don’t want that person in my life anyway and shouldn’t be bothered by their negativity. I would say the biggest challenge socially is when a public bathroom doesn’t have music haha. Even though we all go to the bathroom, I still find myself getting embarrassed about it sometimes, because (I’m about to be really honest here) the sounds and smells are not at all attractive or private. I think that it might be the hardest part of the whole thing for me; but I am working on not letting it bother me since I have no choice. Otherwise, I am very proud of my scar, my story, and my strength. I almost certainly have a deeper sense of self-confidence and personal freedom than I did before I got sick. It is always a work in progress, but you can check out my post about my body-positivity journey here. Bottom line, is that I love my J-pouch and it has truly given me my life back – my full life (with just a little more time spent in the bathroom haha).
I hope that this post has been helpful and informative, and maybe given you some hope if you’re nervous for surgery. And if you don’t have UC or a J-pouch and you’ve read this far, I hope it has given you more insight into the life of someone who does. I love hearing from all of you, so please feel free to like, comment, connect with me on social media, send me a private message, follow my blog, and of course share with someone who might benefit from this post! If you have any other questions, I am always happy to respond and am excited to be answering more in my future posts!