A question for the Ulcerative Colitis Community

Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?

Answers from the Community

Everything I do throughout my day, whether it’s eating, exercising, spending time with my family, impacts my blood sugars, as well as medications that the doctor might prescribe that I need. However, it can negatively affect my blood sugar and cause me to have extremely lows or extremely highs.

My frustrations and day-to-day challenges living with ulcerative colitis would be the many times I have to be in the restroom, missing out on every day things such as family dinners, or even watching a movie. I have to get up several times just to continue to run to the restroom. When we have events or anything, I don’t really leave the house, especially now during this pandemic. You always have to be by a bathroom with ulcerative colitis. If we’re having any kind of a major event, like a birthday party at our place or something like that, I try actually, not yet eat anything several hours before, to try to make it through to the thing but it really sidelines you having ulcerative colitis and takes you out to life. I mean, most of your time, at least mine, has been spent in the bathroom.

For my day-to-day life, I would say that my colitis just causes me to be extra cautious in the things that I eat and drink and just kind of always be aware of how I’m feeling and just hyper aware of any symptoms that start to arise. I think what’s really frustrating is when I could eat and drink the same thing for like 10 days straight and then suddenly on the 11th day, I suddenly don’t feel well or something or some kind of symptom comes up or the food irritates me. So it’s hard to always know what’s going to sit well and what’s not because it can change from a day to day basis. So in order to adjust to these, I’ve just tried to take it extra careful in what I do eat and drink and how I’m going to try something new, making sure that it’s in an environment where I would feel safe if I don’t react well to it. So I just have to be extra careful and really cautious in kind of the decisions I make and where I go to eat and drink and everything.

I think the biggest challenge is the uncertainty. Right now, I am living with my third stoma, third ileostomy, and I got this one with emergency surgery back in March. I’m hopefully getting it reversed in a couple of weeks, but I think the biggest thing is just not knowing how the day is going to go when I wake up, or is it going to leak, or am I going to have more skin breakdown problems? Or am I going to have abdominal pain today? It makes it really hard to plan things because I can plan things all I want, but there’s always the caveat for me and my wife that we might just have to cancel plans at the last minute or leave places early on a moment’s notice. It’s better than being incontinent like I used to be, but in a lot of ways, it is just as difficult.

My biggest challenge is that with ulcerative colitis, a lot of times I will have a sudden urge to me to need to use the bathroom and it can really interrupt day to day activities. I’ll have to stop cooking dinner or I stop playing with my daughter or stop doing work or whatever to run to the bathroom. It usually comes on suddenly and it’s usually pretty urgent so it’s quite annoying to have to deal with. I mean, the best thing I can do is just manage by trying to avoid things that are going to trigger me to have episodes and to always make sure that I pay attention if I start to feel like I’m going to have to go to the bathroom so I don’t unfortunately have an accident.

So I was diagnosed with ulcerative colitis at the age of 15 and for a lot of my life, I just kind of dealt with it on my own. I wouldn’t eat anything before I went outside. I would make sure that I packed appropriately in case I had an incident. Ever since I got married, unfortunately it’s also affected my husband’s life in a major way, little excursions, like going outside have become difficult. I’m always wracked with anxiety whenever I step out my front door. I’m also I’m expecting right now and so I don’t yet know how my condition will affect my son, but I foresee just a lot of family outings being cut short because of anxiety about not having access to a restroom, a lot of excursions not being possible because there’s no access to a restroom and a lot of time that I may be spending in the restroom as opposed to with my son taking care of him.

So, for this one, probably the biggest day of day thing is probably fatigue, which is generally helped with getting enough sleep, watching where my energy levels are throughout the day, and generally not pushing myself. There’s also a sense of, if there’s anything I’m anticipating or really worried for, that could tie my stomach up in a pretty bad knot. To combat this, general relaxation techniques. And then also a couple of meds that helps.

So I am the one who has the condition and I think it impacts my day to day almost all the time. I would definitely say that it is been a bit of a stressor. Just throughout the day to day always kind of thinking what could happen, what may happen and really being mindful and consistently cognizant about what’s going on within myself and how I feel and kind of adjusting to not only how I feel in the moment but also if stress or anxiety are induced then how to cope with that and really be able to get to more of a stable part of my life. So the frustrations and the challenges that I experience include going to get medication because the medication is every week, so really kind of carving out that time to be able to go direct to the hospital, get the infusion and kind of move forward with that treatment, and that’s definitely one of the challenges that I’ve had when I was working with insurance companies and all that fun stuff. To adjust to these challenges it’s been really more so difficult. I mean for the most part you can’t really change the circumstance, you really can only change your mentality on it and I think that has probably been the most difficult component to utilizing medication. I mean it is working, but at the same point it takes a good amount of time out of my life to get it, sit down, wait for it and then with the pandemic everything’s kind of just a little bit more stress inducing. But overall it’s all very manageable I would say.

Right now I’m in a flare and frustration that come to me often is the fact that I can’t leave my house without fear of an accident. And I’m just very home bound and it’s frustrating that I can’t go out with friends and family and just do normal day to day activities even around the house. So, I mean, what I’ve done to adjust to these challenges is be honest with people as to why I can’t go. And when I am feeling better, I do try to push myself a little bit more to maybe go to the grocery store and just do little things.

Well, I am the patient in the situation. I was diagnosed with ulcerative colitis at 15, and that presents a lot of challenges just by the nature of the condition. Having to deal with symptoms on a day-to-day basis and not being able to go do things or having to cancel plans at the last minute is a huge frustration. And just the unpredictability of the condition and not necessarily knowing when it will get worse, or when I will have symptoms and when I won’t, definitely presents a huge challenge when it comes to making plans with people or even for school, having tests that I need to take or homework assignments. It’s definitely a huge challenge. And to adjust to those, honestly, I would say that the most obvious thing is to try to control my condition and to make it so that I don’t have as many symptoms. Obviously it’s a lot easier said than done, but I’ve just tried to surround myself with people who are more patient with that and who understand that I have a medical condition that can cause issues with me canceling plans at the last minute or not being able to do certain things.

Challenges for me personally, because I’m the patient, mostly have to do with the physical. So the exhaustion is the biggest piece for me right now. It’s going to the bathroom so many times, that’s gotten less over the course of my treatment. So, I mean, that was an issue before, but now it’s mostly abdominal pain and chronic fatigue. So it’s hard because I have a toddler. I also try to work. I do need to rest. I need different types of self care for just keeping my nervous system more calm. I get easily overstressed not being able to necessarily eat everything that I’d like to because it aggravates my abdominal pain. And just generally, having this impact of, well, every eight weeks I have to go get an infusion and then I also need someone to drive me and someone to watch my child, and then I’m really tired after that infusion and it takes me out. So those are some of the challenges that I’m experiencing right now.

I was diagnosed about four years ago with ulcerative colitis. Day to day, I have a lot of gas, a lot of pain. I go to the bathroom a lot. I can’t go out and walk and do things because I’m just so tired. I just recently went gluten free and have found a big difference. I use medical marijuana to control my symptoms as no medication has actually helped me, so I just used the medical marijuana, and now gluten free.

Living with ulcerative colitis has changed my day-to-day because I always seem to have to prepare for the unknown, whether that’s unknown if I’m going to have a flare in need to use the restroom. It’s unknown if I’m going to have some kind of sensitivity to a food where I feel cramps or just overall do not feel well. So that’s how it kind of impacts my day-to-day and some frustrations and challenges that I experienced. So what I have done to adjust to these challenges is just kind of being able to go with the flow and if I need to step away from an activity because I have an urgency, I just have to realize that that’s just what I have to do. There’s no way to predict how my day is going to be. I can do the very best I can to prepare, eat healthy and take care of my body in that kind of way, but there’s really no fix for this condition.

I have ulcerative colitis. It affects my life every single day. Currently managing it fairly well, but I still have a lot of fatigue. I’m not able to do everything I would like to do with my family and my kids and around my house. There’s some days where I can get a decent amount done and there’s some days where I can get next to nothing done and I’m laid up on the couch and I feel like I miss out on things with my friends and my family and my children. I also have a very, very restricted diet. I can’t eat very much at all. So it impacts my social activities. I can’t go out with friends, even at family gatherings or holidays or birthday parties. I feel left out and I’m not able to join in with the food and things like that. Or even just dinner at my own house. I eat separately from the rest of my family. I’m managing it by when we do have get togethers, I will bring my own food or I’ll eat ahead of time. I try to reduce stress as much as possible. I take supplements and medications and just try to let people know what my limits are and what I can handle.

It does affect my work life. Having to use the bathroom more than normal. I’ve had to apply for ADA, which is disability, American Disability Act, which allows me to use the restroom as much as I need to throughout the day. As far as my family goes, my kids are pretty good about knowing when I’m not feeling well and helping me when I need it. I do have my office, my home office, set up close to my restroom to kind of help me out throughout the day. I think the biggest issue is probably the stomach cramps, but probably get massages to help out with those.

Where I am at now with my condition of living with the J-Pouch, the biggest challenges I face are dehydration and small bowel obstructions. The way we’ve adjusted to challenges is to make sure I’m constantly drinking water, Gatorade, vitaminwater, and also adhering to a certain diet. This diet includes vegetables that are not raw, rather already cooked vegetables or peel off skin of certain fruits, such as apples. I’ve noticed that eating a diet with soft foods helps prevent the small bowel obstructions.