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Chronic Disease

Expert by experience: Living with, and teaching about, short bowel syndrome

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from patient advocate Andy Jablonski.

I am 26 years old and have lived with short bowel syndrome, a rare intestinal disorder, my entire life. When it comes to this disease, I’m an expert by experience.

Short bowel syndrome (SBS), which affects about 15,000-30,000 people in the United States, is the result of a congenital defect (NEC, gastroschisis, and volvulus, to name a few) or trauma. Crohn’s disease is also a leading cause of SBS.

SBS is a condition that reshapes the way you live. There are multiple things a patient has to become accountable for, including self-managing the condition, keeping on top of medications, and making frequent visits to the doctor. In many cases, SBS patients face frequent diagnostic procedures or surgeries, or both. To manage the disorder, SBS patients have to make major changes to their dietary needs to help supplement what they do not get through oral feedings, often through TPN and enteral feedings. Dietary management is one of the biggest challenges of the disease.

Many things in your life change when you have a chronic condition like SBS – some good, some bad. One downside is that there’s always some sort of “fear factor” involved, with the patient wondering what could happen after one infection too many, and worrying about the multiple things that could go wrong from undergoing surgeries and procedures. On the plus side, living with a chronic condition prompts patients to learn techniques that allow them to live a productive life and to learn how to effectively communicate with their healthcare provider.

Many SBS patients want to study the condition and understand it better, so they can be more efficient with their lives and time. I am one of those people, and being around medicine my entire life was a driving factor to becoming a full-time patient advocate and support resource for other patients like myself. For the past two years, I’ve attended Digestive Disease Week, a major conference held each May that brings together more than 15,000 gastroenterologists, industry professionals, medical students, and vendors from all over the globe. Also at the conference are some people like myself, who live and breathe SBS every day.

I had many opportunities to talk with physicians at the recent conference, and our conversations usually started with them asking, “Why are you here?” When I explained that I’m an advocate for SBS research and awareness, as well as an SBS patient, their attitudes changed, and they became receptive to me and my mission at the conference. Many agreed that there’s a need for SBS to become better known in the GI community and that there’s no real support for patients and caregivers. Hearing those sentiments confirmed that I’m on the right path with the foundation I started two years ago.

Not all physicians I’ve met at conferences have been welcoming, but many have been. And some have gone as far as to tell me that I’ve taught them more about my disease then they ever knew. Most physicians study a disease process a few times in medical school and then will only see a case or two in their careers, one GI told me, unless they really specialize in a particular condition. Hearing that I provided these doctors with new insights about this rare disease was empowering to me.

As a patient advocate, I know that it’s because of healthcare providers that patients like me continue to thrive. But more medical professionals can benefit from listening more to their patients, and doctors can learn from the experts who come into their offices and hospitals every day.

Andrew “Andy” Jablonski, of Lincoln, Neb., founded the Short Bowel Syndrome Foundation in December 2010 as a resource for SBS patients and their families.

 

6 Responses to “ Expert by experience: Living with, and teaching about, short bowel syndrome ”

  1. Beunca Says:

    This article is so on point my son was diagnosed with Gastroschisis and I just could’t believe how many people didn’t know about this defect except the professionals who studied for that.

  2. Marsha Curnyn Says:

    Andy,

    First of all, many thanks for founding the Short Bowel Syndrome Foundation! I have had SBS for 10 years. I had ulcerative colitis at age 15, resulting in an ileostomy. Ten years ago, I had bladder cancer and my bladder was removed and a neobladder was created using some of my remaining small bowel. Until recently, I’ve done very well. However, for the past several months I have struggled to stay hydrated and maintain my weight. I also have Chronic Kidney Disease and was recently hospitalized for acute renal failure due to dehydration. Not sure which is the chicken and which is the egg…SBS or kidney failure. My Georgetown-trained nephrologist doesn’t know either. Do you also suffer from kidney disease? There must be quite a few of us out there. I attended the United Ostomy Association of America (UOAA) Conference in Reno a couple of years ago and plan to attend the next conference in Jacksonville, FL this Aug. In Reno, I heard a speaker, Carol Rees Parrish, from UVA discuss SBS and nutrition. I have written to the President of UOAA and requested he consider having an expert discuss SBS and kidney failure at the upcoming conference. Are you familar with this organization? I am interested in the Digestive Week Conference you mentioned and will look into that. Thank you for your advocacy in this field!

    Aloha,
    Marsha Curnyn

  3. Rose Reeves Says:

    hi, my name is Rose i am 24 years old i am new to living with short bowel syndrome. long story short i had an incident where I had to have multiple surgeries and ended up losing most of my small intestine. Is there any advice someone can give me about the symptoms and how to gain weight? if so I would greatly appreciate it. I really need your help.

  4. Rosemary Jabkonski Says:

    My short form story same as above my whole issue scar tissue from gyn surgery necessitate dstoma that subsequently stenosed. 3 revisions soince stenosed to degrees. Relocation and stoma to oither side left me with 5 feet of small bowel. Long story loss of 14 feet if it unaccounted for but gist is I have no colon and 5 feet small bowel. One huge small bowel obstructuion. One hospoitaliztion for dehydration. Only can hydrate while I tpn with hickman catheter. Oral rehydration drinks just sopeed stoma ileostomy outpout. This stoma is also prolapsing. Have to live on looperamide and try to eat very thickening foods. Need help. Worst is the original gyn surgery that klead to all this on revuiew of scan issue did not exist, but that ius who nother chapter. But this is current issue and what I need help with. RJ

  5. Hilary Says:

    Hi, my name is Hilary and Im 32. I too am new to living with short bowel syndrome. In February this year i had all but 80cm of my small intestine removed. To say this year has been tough would be an understatement but the fact i am still here makes me very grateful. Coming across articles and information resources like this is a huge help as i am still learning day by day how to cope & manage my situation. I was weaned off tpn 3 months ago and while my weight dropped a bit, it has stabilised, however my blood tests show i am low in proteins.
    Rose, my dietitician has advised me to replace my usual low fat dairy foods with full fats in order to keep weight on. While she didnt advise a high fat diet she recommended using full fat milk in tea and real butter on toast etc. While I am not dehydrated as such i am struggling with fluids a bit at the moment.

  6. Casey Says:

    Do you all suffer from pain after eating?..I swear IM scared to eat or drink anything because it causes me intense pain. Pain meds make it worse as well. I just wanna be pain free and healthy again..

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