Guest Post for IBS Awareness Month: Looking Back and Paying It Forward: A Life with IBS

IBS Impact is pleased to welcome another guest post for IBS Awareness Month. Jeni Skukowski has IBS and lives in the state of Connecticut in the USA. She works as a Registered Dietitian and is a volunteer co-administrator for the international, science based Facebook IBS support group IBS Support (Official). We appreciate her time and insights.

As we wrap up IBS Awareness Month, I am here to share my experience and thoughts.

Quick background: I have been a Registered Dietitian working in acute care for over 30 years. Now working in long term care. I’ve seen it all. Much on the job training . My passion for science and nutrition started in high school. I’ve had successful career. I’m also a mother to three, the youngest with severe autism including intellectual disability.

Life has had its ups and downs. And IBS has been by my side through the whole journey. As long as I can remember I’ve had abdominal pain, and what is now considered IBS-mixed.

I learned about IBS through my own research, like many of us have. Also like many of us, I was diagnosed in the Emergency Room after many visits over the years for abdominal pain. In the past few years I have been under the watch of caring gastroenterologists.

Two years ago I joined a Facebook IBS support group that is science based. I learned so much from the administrators. I was introduced to FODMAP. I was always in pain at work, especially after eating . My dietitian coworkers were less than supportive and were not schooled in IBS or FODMAP. Very few dietitians are. I lost my job at the end of 2016, despite having FMLA to protect me. Too many days coming in late.

I was thrilled when the admins asked me to join them in the support group admin team. Spending a year unemployed, helping others new to IBS gave me focus and helped me with my depression. Being fired was traumatic. Educating others empowers me.

I learned about IBS and the signs and symptoms, possible causes, and ways to manage it. The following possible causes are intriguing to me, and certainly need more research.

Trauma and Stress:

No question for me that trauma played a role in my bowel issues. I was always having to “go” at any time, and was constipated as a child. My childhood was a cluster of mentally ill parents, mental and physical abuse, and unpredictability. Growing into adulthood, there were the stressors many of us experience: marriage, having children, death in the family, car accidents, divorce, financial difficulties., having a child with a disability. Throughout it all, IBS pain has been with me.

Surgery and Anatomy:

I’ve had many surgical procedures, mostly abdominal. Each surgery rendered me with worse IBS symptoms. The most recent were in the past thirteen years, including an open appendectomy and a hemicolectomy. I am convinced that once they move your bowels around, they never are able to put things back to where they were before. I also have a redundant colon and diverticulosis. I’ve had one bout with diverticulitis, not uncommon in my age group. I recently experienced IBS pain from too much fiber I had binged on. I was convinced it was diverticulitis. IBS pain can be severe. This is what drives people to the Emergency Room. Though it is not the best place to be for a non-emergency chronic condition like IBS, many people are in such desperate pain that they just want it managed.

Microbiome:

I am pretty convinced that over my lifetime I have been exposed to too many antibiotics. Doctors used to dole them out like candy. We know better now. I don’t tolerate probiotics well but did take them when I was on antibiotics for the diverticulitis and I believe they helped prevent diarrhea. But otherwise I do not tolerate them.

Diet:

Learning about the FODMAP elimination and reintroduction diet was a game changer for me. I suffered from terrible gas pains after eating my beloved mushroom soup, artichoke hearts and onion. I have to be very careful with my diet. I don’t tolerate insoluble fiber without suffering for days. I remember as a child having pain after eating apples. It all makes sense to me now.

Support and Advocacy:

It has been my mission to educate everyone around me about IBS. There is so much misinformation or lack of information. I enjoy my contributions to the support group because I am a natural teacher, and my knowledge of nutrition is a bonus. I am passionate about awareness of quackery and false information and I will stop it in its tracks when I can. Some people with a chronic illness are at times desperate for a quick fix. Being in the support group helps me, and I get support in return.

The Future:

We need more research as to the best course of treatment for IBS. This proves challenging as so many people respond differently to what is currently being used, and we all have our own unique microbiome and response to medication and diet. The area of research involving trauma is promising, and opens the door to behavioral therapy. It is my thought that we live in a very heightened state of anxiety, across the globe. The idea of gut-directed hypnotherapy needs to catch on. Physicians and other medical professionals need to be more educated about IBS. I have schooled my GP about FODMAP and he has been supportive, as he is an open minded professor. I talk about IBS to my new co-workers, and not surprisingly some are coming to me complaining of the symptoms. Talking about “TMI” and the stigma attached to it is not always easy in many cultures, but it is the first step in finding better awareness.

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