Ostomy And Ulcerative Colitis Q&A.

Ever since I started sharing my Ulcerative Colitis and Ostomy story with the world, I’ve received a lot of questions. I receive questions from people I know and questions from people I don’t know. Some questions are pure curiosity, some are comparing symptoms, and some questions are better suited for a physician. Regardless of the question, I’m always happy to help to the best of my ability. I feel honored that people feel comfortable enough to come to me with such personal and vulnerable questions.

To be clear, I am not a medical provider. I have never been to medical school, nor do I claim to have all of the answers. I’m not here to diagnose you or to tell you if you have an illness. I’m here to help facilitate a safe space for you to share your concerns and provide solace in my experiences. Lets dive into those questions!!

Commonly asked questions

Ulcerative Colitis:

• Are your gut issues genetic and/or hereditary?
  • It still hasn’t been proven whether or not UC is genetic or hereditary. There is some consideration of environmental factors or maybe a mutation in one of my genes. For example, I have an identical twin who doesn’t have an autoimmune disease or any gut issues. Just because you have similar symptoms doesn’t mean that you have the same disease – or a disease at all. You could just have IBS (irritable bowel syndrome). Which has a lot of the same symptoms but no disease in your colon. Gas X was very helpful for me and still is with my ostomy. Another idea is to eat less fibrous foods or anything that would be tough to digest for a while. Follow an IBS diet for a bit. Such as raw veggies, apple skins, anything with seeds, anything super acidic, etc.
•  What medications have you tried and what side effects did you have?
  • This is a common question I get from other UC persons or soon to be ostomates! I don’t really like getting asked this question because my answer is always discouraging. I felt like I tried every UC med that was out there and every time I experienced horrible side effects. Or it just wasn’t a strong enough medication without pairing it with prednisone. My body is extremely sensitive to the drugs and I am not the average patient. Therefore, my experiences should be taken with a grain of salt. Plus, each person is different, and everyone’s body will respond differently to each class of drug. Infusions worked really well for me, they had the scariest side effects, but the best long-term result for me, personally.

Which condition is better?

• Now that you have an ostomy, which quality of life was worse?
  • Living with Ulcerative Colitis was much worse for me. My quality of life was significantly less than it is now. I always had to know where a bathroom was and wasn’t able to eat certain foods. I never felt like I could enjoy my life without my disease getting in the way. I felt like my UC was holding me back. Whether it was severe stomach cramps, medication side effects, or feeling like I had no control. With my ostomy I don’t feel that at all. I hardly ever have cramps, I don’t have to take medication, I don’t have to worry whether or not a bathroom is close. I feel like I’m able to live my life without my ostomy getting in the way. I’m pain-free, stress-free, and medication-free!

Ostomy:

• How often do you have to change your bag?
  • Now I can make it 7-8 days without having to replace my bag. For the first 6 months after surgery I was changing my bag every 3-5 days. Or they were leaking within a few days forcing me to change them. It’s not good to go longer than a week without changing your bag because the adhesive starts to wear off. Your skin can become itchy, develop sores, or make it more likely for your stool to seep through. Finding the right fit and style of bag is the biggest battle. Once you find the perfect fit your bag maintenance becomes much simpler.
• Does it smell?
  • No, it doesn’t smell. There’s a filter inside of the bag that helps eliminate odor. There are also a lot of products that ostomates can use to help eliminate odor while emptying their bag too. I had a liquid deodorant that I would put a few drops in my bag and rub around. Worked like a charm!!
• How often do you have to empty your bag?
  • I empty my bag about 5-7 times throughout the day. There are several factors that play into the frequency of having to empty your bag. For instance, how much food you eat, the kind of food, if you’re dehydrated, if you’ve been drinking alcohol. All of these things determine if you’ll have a high level of output or a low level of output. Interesting enough, if you are dehydrated you will have an increase in output! So, it can be a helpful way to determine if you’re taking in enough fluids. Which is very important for an ostomate!

Sorry Family… but it’s a burning question for a lot of people!

• Has this altered your sex life at all?
  • Brandon has been with me through everything. He was there when I was getting diagnosed and he was there when I got my colon removed. Nothing has changed and he looks at me no different than he did before I had an ostomy bag. If anything, it has made physical activity easier and significantly less painful. I don’t think that having an ostomy should ever alter your sex life or a relationship. If the person you’re with loves you for you, then the bag will become part of the relationship. It’ll be seen as a norm. Brandon hardly remembers I have a bag and when we are intimate it’s never in the way nor does it cause limitations. So, if you have a bag or might someday, you can cross that off your list of fears. 🙂

Comment below if you have other questions you’d like answered!

The Bon

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