James got control of his UC flares and was able to enjoy vacationing again without fear of triggering symptoms
Almost exactly 1 year ago, I returned from a relatively modest vacation. Although the destination was great and the experience was generally positive, I started flaring severely on the final day, which tainted the end of the trip and seemed to confirm my fears of being away from home. From then until working with Romanwell, I started a biologic and alternated between flares and periods on prednisone. For me, starting a biologic was sobering enough, but more worrisome was finding that even with the biologic, I needed prednisone to keep my UC at bay.
It was in the middle of another flare, and while starting another round of prednisone, that my wife walked over to me with her laptop on a Sunday morning. At this point, I was feeling like I could not understand why I kept flaring and I thought I was willing to try anything. On the laptop was Romanwell's website. I’m pretty skeptical of random internet people and solutions, so this served as an immediate test to my “I’m willing to try anything” position. But, with some prompting from my wife to admit that I was not in control of the situation and I need to look for other sources of help, I agreed to at least check out the website and read some of the testimonials.
After consideration, and what felt a little like desperation, I decided to reach out and ask them to consider working with me. Still, this wasn’t going to be free (might even be kind of expensive) and how could I protect myself from getting ripped-off by some stranger on the internet? But the email was sent and I could at least have a conversation, right?
The first phone call was enlightening in several unexpected ways. First off, it was clear they had a process they followed and had done this before. They were also very clear about the terms of the agreement and was confident answering questions, one of which was if their dietitians were comfortable working with men. They were, and I was not the first male they had worked with. That was nice to hear, but the best part of the call was a feeling for me that I didn’t have to dodge questions or dilute answers pertaining to my bowel movements. Sure, I’d talked frankly about my issues with my doctors, but those conversations always seemed so impersonal that I was not sure if they were hearing what I was feeling. With my dietitian at Romanwell, I got the impression that this was business and we were going to take it seriously—but she could also hear me (if that makes sense). It was just enough to convince me to proceed, but I still had doubts. And yes, this was going to cost money that may or may not be counted against my insurance deductible. To their credit, they offered to help with this in any way they could.
Soon thereafter I started working with one of their dietitians with scheduled weekly consultations. My status at the start of the program was sleepless nights, energy spikes and lulls, stupid urges to over-eat... you know, prednisone. Prior to the prednisone, it was frequent fatigue, 8 – 10 loose, bloody stools per day, and the occasional pink toilet. I was also not able to sleep through the night without the urgent need to evacuate—and on some occasions, whether in the middle of the night or at work, I barely made it (or kinda didn’t) to the toilet.
Without describing the treatment process, which probably varies from person to person anyway, my experiences of working with my dietitian are that she:
- Was a great listener, understanding and encouraging, structured (but not too rigid), and worked towards a goal
- Had a lot of general knowledge and a great collection of resources for guidance and IBD education. More importantly (at least for me), is that she has real-life experiences that allowed her to relate to what I was going through
- Provided guidance through a process to eliminate and introduce/re-introduce foods that included a great amount of research-based information, and also tips on how to identify possible trouble foods.
- Helped immensely with stress management. This is huge and may have been my biggest trigger. I had never tried to manage my stress before. I never even really tried to monitor it, much-less be able to admit it could be a ‘thing’ for me.
- Provided guidance on supplemental vitamins and minerals based on results of blood tests going along with a second, and more detailed, opinion on all medical information related to the UC. And its not like she was often challenging my doctor’s advice, positions, or treatments—but in many cases I just needed another person with whom to talk through my options.
"Biggest thing was the feeling of an educated and experienced work partner who is genuinely engaged and invested in the outcome. I never felt like just another patient ushered in and shuffled out...it always felt as though I was the only person on her agenda."
Biggest thing was the feeling of an educated and experienced work partner who is genuinely engaged and invested in the outcome. I never felt like just another patient ushered in and shuffled out. In fact, although I’m certain she had a full schedule and many other people she was working with, it always felt as though I was the only person on her agenda.
The benefits I started to realize throughout the program, and continue to this day, are:
- Better and more normal energy levels, which leads to more normal activity levels
- Confidence in eating and making better diet choices. An additional benefit beyond immediate UC trouble foods is a better diet that has measurably improved general health.
- Confidence in being away from a bathroom
- Better stress management habits and behaviors. In fact, the better eating and stress management lessons are ongoing benefits for the whole family. This is another unexpected, but not insignificant, benefit.
- Better sleep habits
Why does all of this matter? Maybe from a man’s general perspective (and certainly my own feelings), we’re not used to talking about our butts unless we’re joking. We’re not used to talking about bleeding from our butts. We’re not used to admitting we need help and that we’re a little scared. In any case, part of the journey is learning about, and coming to grips with, the realities of the situation and how to best assume some level of control over the outcome, even if it is not absolute control.
Fast forward to today and I have recently returned from a much more ambitious vacation than the vacation that ended poorly for me last year. The type of vacation I was unsure when, or if, I would ever be able to do again. I was nervous the whole trip, always waiting for the moment that I was caught away from the toilet and the urgency returned. It didn’t. Things went extremely well, even though I had to take a couple of chances (but nothing too crazy) with my eating.
In addition to being able to vacation again (which was great), my routines and energy levels have returned to more normal levels. I’m able to be active again. I feel more like myself again in ways beyond just UC issues (e.g., stress management improvements). In summary, I was very skeptical of the process and cost—but the physical, mental, and emotional benefits made the cost well worth it and I am grateful for my dietitian's help.
All client names and photographs have been changed to protect their privacy.