Enteral & Parenteral Nutrition Patients

My Life with Short Bowel Syndrome

The following is a guest post from Michelle Guinigundo, a consumer and Reimbursement Consumer Advocate for ThriveRx, a division of Diplomat Specialty Infusion Group.

 

In February 2013, I realized that living with short bowel syndrome (SBS) wasn’t the end of my life.

My husband and I had always dreamed of taking our family on a beach vacation. In early 2010, a bowel obstruction put our dream on hold—possibly forever.

Learning to Live with Crohn’s

I’ve had Crohn’s disease since I was a senior in high school, when the Crohn’s and Colitis Foundation was in its infancy and very little information was available. I was your typical invincible teenager; nothing could stop me, not even Crohn’s. I graduated from high school and college with only minor medical issues. My future husband, Mike, was well aware of my disease, but that didn’t discourage him. We were married in 1990.

Within one year of marriage, I was having my first intestinal resection, leaving me with 25 percent of my large bowel and all of my small intestines. Four years later, my disease was back and surgery was recommended. During a visit with the surgeon, he brought up the possibility of a colostomy because he was unsure of how much bowel I had left for reconnection. The surgery was a success and I was left with 10 percent of my large intestine intact. I was 27, happily married and missing most of my large intestine—but hey, I was living! This surgery made me healthy enough to give birth to our first son, Alex.

The next two years went by quickly. I was busy working, taking care of our son and just enjoying life. But Crohn’s was starting to show its ugly head, along with the usual symptoms: fever, diarrhea, weight loss. Once my weight hit double digits, I was scheduled for a colonoscopy. The results were not surprising: My disease was back! This time I was able to avoid surgery by responding well to medicine. This kept me in remission for over 10 years, allowing us to welcome two more sons to our family—Daniel in 2001 and Jake in 2003.

 

 

I also began exercising again, something I had done in college and early in our marriage but had stopped when life had gotten too crazy. I played tennis and hit the gym for spinning classes, weights and the elliptical. I became a soccer mom and then a taekwondo mom. We also picked up cycling again. I loved the feeling of the wind in my face on a pretty day with a flat road ahead of me. We also started our oldest son on ski lessons, always with that dream of a vacation in the back of our minds.

In 2006, I started to have the occasional bowel obstructions. My gut began to take on a personality of its own. Some days it would be obedient and quiet; and others, it would be loud and boisterous. There were days the pain would hit with a vengeance, putting me out of commission for 24–48 hours. The episodes typically ended with a violent case of vomiting until the clog felt like it was unplugged. By 2009, the blockages and sluggishness began to increase, and my weight and energy were slowly dropping. I attributed this to the increased intensity of my workouts. My weight had dropped from 112 pounds to 106. When you’re a small person with Crohn’s, every pound counts.

 

The Biggest Change in My Life

Wednesday, Jan. 27, 2010, marked the beginning of a huge change in my life.

It started with an early morning workout and then I was off to work. By 11:30, I was in pain on the floor of my office, and in the emergency room by Thursday morning. By that evening, I had pain meds, a visit with a surgeon, and a nasogastric tube to suction my stomach. The plan was to wait and see if I could clear the obstruction on my own and try to avoid surgery.

By Saturday afternoon, things hadn’t changed much, and they decided that I was malnourished and would need an intravenous line to start a nutrition solution—total parenteral nutrition (TPN)—to help me gain strength prior to surgery. I was overwhelmed with the whole idea.

On Wednesday, Feb. 3, I was finally rolled into the OR for exploratory surgery, expecting a small bowel resection like in the past. I woke up several days later in the ICU with news that I wasn’t prepared to handle. I now had less than a foot of small bowel, an ileostomy and gastrostomy tube (g-tube) and TPN for life. I was receiving tube feedings through my g-tube and more nutrition by TPN through a Port-a-Cath® in my chest. As it turned out, my bowels had ruptured prior to surgery. My surgeon saved what he could and got me quickly out of surgery. My life had taken a larger turn than I had anticipated, and it would take a long time for me to understand it all.

 

short bowel syndrome supplies

TPN supplies

A New Beginning With ThriveRx

Within a few days, I had been introduced to my home nurse, Donna Kloth from ThriveRx, who would be providing my TPN and tube feedings when I returned home. I needed to learn to administer both these therapies and how to change my ileostomy bag. Everything seemed to be so different from where I was just a week before.

I returned home on Feb. 17, my youngest son’s seventh birthday. It was not much of a birthday celebration for him; in fact I received more presents than he did! Donna came over to get me settled in and infuse TPN and tube feeds. After three weeks in the hospital, my weight had dropped to below 100 pounds.

My husband made sure that we tried to live a normal life and do things as a family. We took our first trip with all my medical supplies to Niagara Falls that summer. Being the notorious over-packer that I am, I took everything and more for my TPN and ostomy needs. I was scared that something would happen and I wouldn’t know what to do. Everything turned out OK and we had a great trip; my backpack went with us to a lot of places, and we planned things around my energy level and infusions.

Michelle with her family at Niagara Falls

Slowly, most of my lab numbers came back up into a normal range. The plan was to reconnect some of my small intestine to the end of my large bowel to increase my bowel length and nutrient absorption, with the goal of decreasing my need for TPN. The tube feedings had been stopped many months before, due to my inability to absorb nutrition from them. This surgery was attempted in December 2010 without success. For the next year I continued to slowly gain weight, relying on TPN for the majority of my calories.

In September 2011, the bowel reconnection was successful. I now have about 79 cm of small intestines! After recovering from surgery, I slowly began getting stronger and gaining weight. Eventually, I was able to reduce the TPN to only five nights per week. Having two nights of freedom was awesome! From the time I started receiving my TPN from ThriveRx, I had received diet counseling that included ways to reduce my ostomy output and to increase weight and hydration. They had provided me with dietitians—first, Deb Pfister; then, Karen Ackerman—who would offer suggestions on what was best to eat and drink. I had never followed a diet plan and knew that this would be an uphill battle. I was eating whatever I wanted, making multiple trips to the restroom at each meal.

 

ThriveRx nurse, Donna, with Michelle

I quickly realized, however, that some of the suggestions worked to decrease my ostomy output by drinking the special oral rehydration solution (ORS) drinks. By watching ThriveRx’s webinars on short bowel diet management, I started to understand my new anatomy and how it functioned. I also attended a local ThriveRx Maximize Health! local session along with my husband and parents. As a team, we learned about the anatomy of SBS and how what I ate or drank affected me differently than it would for a normal person. Until this time, I was on my own putting these ideas into practice. Now I had other family members helping me.

 

Going Cold Turkey

In early January 2012, I started eight weeks of intensive diet counseling with Maria Karimbakas through the Maximize Health! program. Initially, we spoke weekly about my labs, eating habits and diet encouragement. Since my labs still showed signs of dehydration, this was the first thing she wanted to get under control. I kept a regular log of my fluids and tried to follow her recommendations for ORS intake.

By simply watching the type and amount of fluids I was drinking and the sugar I consumed, I immediately noticed a drop in my output. Not going to the bathroom and sleeping through the night was a huge relief. With Maria’s help I also made changes in other food choices. I was committed to gaining weight and getting off as much TPN as I could; if that’s what I had to do, I would.

By late April 2012, I started looking at disability and Medicare plans. ThriveRx explained to me that I was below the Medicare TPN threshold of calories-per-pound ratio, and there was a good chance that I might not get approved for only a few days of TPN. I had a long conversation with Deb, and she brought up the idea of going “cold turkey” to see if I could maintain my lab values and weight. In the back of my mind, I knew that I had relied on TPN to

give me any extra calories that I needed. What would happen if I didn’t have that? After I visited my doctor, we decided to give it a try.

At the end of May 2012, I stopped all TPN but continued with the daily hydration support. Three years later, I am still off TPN. My weight still hovers around 115 pounds, my highest average in almost 10 years.

Oral rehydration support

One of the biggest changes that I have had to accept was that I was no longer the only person in control of my health. I now had an entire team behind me making sure I stay healthy: my surgeon, my GI, my husband, and especially my nurse and dietitians at ThriveRx.

Over the last seven years, I have experienced many changes in my life. The hardest was was mourning for what my life used to be like. I missed my independence, exercising and working full-time. At first, it was a challenge to adjust to life with a TPN and hydration, a Port-a-Cath®, ostomy, and learning to be a stay-at-home mom. Filing for disability was a devastating blow to my independence, but necessary for my health and family. The key for me was to find a new “normal” that worked for me and my family.

With everything I’ve lost, I now realize that I have gained so much more. I get to be at home after school for my boys and that is priceless! I’ve watched one son graduate from high school and start college, another is learning to drive, and that 7 year old is now a teenager! I’ve gotten to watch my boys grow up, something I never thought I would get to do. Unpacking my boxes, dealing with my ostomy, and watching out for my line and backpack are part of their lives as well as mine.

We even got to take that beach vacation that I thought we would never get to go on—and we had a fantastic time. All the boys learned to surf, while I watched from the sand and occasionally joined them in the water. Monitoring my body for signs of dehydration was constant. But we were together as a family doing something we loved.

I find fulfillment in life by spending time with my family and friends, but connecting with other people who suffer from Crohn’s disease and short bowel syndrome is one the most satisfying feelings of all. Crohn’s disease has never defined me—and neither does having SBS. My life is defined by living it to the fullest with Mike and our three sons.

 

The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.


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