Food Poisoning Recovery

Hospitalization Discharge + Aftercare Information

Being discharged from the hospital is a major achievement and starts a new phase where the patient can continue recovery on home terrain.

Discharge + Aftercare

Regaining Balance:
Discharge from the Hospital

Before you leave the hospital, you’ll receive information on medication and a care plan for follow-up medical appointments. This is an opportunity to ask any questions and talk over any concerns you have about leaving hospital care.

You will also likely meet with the hospital financial department.

A day or two before discharge, go to the Medical Records department and ask them to prepare a copy of the complete medical record including imaging studies, operative reports, etc. Especially if you are from out of town, DO NOT LEAVE the hospital without this packet. You will need this medical record in your own files.

Some patients don’t go directly home after discharge, but are instead sent to an in-patient rehabilitation facility to further recover and regain strength and skills before going home. Also, some patients may need ongoing outpatient kidney dialysis. Arrangements for these kinds of programs will be made by your medical team with your close involvement.

Transportation will be coordinated, and in most cases, you and the patient are finally going home. This is something you’ve dreamt about, prayed for, sometimes didn’t dare to imagine.

Many family members feel elation and gratitude as their doctors and nurses wave their patient off. There is great excitement about bringing the patient back home to their family, friends, to a community of people who’ve been supportive and loving during this difficult time.

There is also deep nervousness about being on your own now, away from all the life support and intense medical care it took to get you this far.

Is the journey over yet?                 No.

"I told the discharge nurse I would have a lot of questions and asked her if she could make time for them before we left. All the new medicines were a little overwhelming.
I wanted to be sure I understood what they were all for, and how they should be administered. After we went over everything, I set up my own system for keeping track. She looked over it before we left, and I felt a lot more confident that we could handle everything.
It helped that my husband became familiar with the meds too. I got a contact name and phone number in case we had any questions after we got home. And we needed it!"

⁕ Mother of HUS survivor

I was so anxious in the kitchen when we got home! We didn't know what caused my daughter's illness and every meal felt risky. I did make some changes to what I served my family, to make myself more comfortable. In time, my fears settled down.

⁕ Mother of HUS survivor

You have been in survival mode and have not had the time to process everything that has happened. The acute phase is over, but the long haul begins, particularly if your loved one endured a long, complicated hospitalization.

However, you have gotten through all the most difficult regions. You’ve gotten through the obstacle course leading up to hospitalization.

You inched your way along life threatening precipices during intensive care. Then, you descended into the smoother landscape of in-patient care and the beginnings of recovery.

Now you’ll be on home territory and may find that it feels like a new plateau, very different from what home felt like before the the patient got sick.

There will challenges ahead, but you’ve already gone through hell and back and proven that you’re up for this.

Patients who survive their voyage of foodborne disease almost always return home with “souvenirs”.

Your doctors will call these “souvenirs” sequelae. Sequelae are conditions that are consequences to a disease or injury.

Depending on the complications (organ system, severity, length) suffered during the acute phase of the disease, these sequelae can range from temporary and minor to permanent and debilitating.

After hospital discharge, as a family caregiver you will continue the process of helping the patient to recover. An awful lot has happened in the past weeks, perhaps months. There has been the obvious physical impact to the patient.

There has also been a very profound emotional impact on the patient and entire family. Now begins the time to sort all that out.

But for the moment, celebrate bringing your loved one home. Savor the victory of homecoming. Immerse yourselves in your own surroundings, your own space, rhythms, and routines.

Congratulations to you.

Bigger congratulations to the survivor!

First Weeks Home

During your first weeks home you will adjust to the new reality of bringing the patient back to health and a recreating a rewarding life.

Every patient’s experience is different, and you as family member care giver(s) will have to respond to your own unique situations. However, there are general things that most people experience that they can share as advice to you during your first weeks with the patient back home.

Start slowly and continue to conserve your energy and that of the patient.

  • If patient’s bedroom is upstairs, it may be best to set up a downstairs sleeping space for them until they can better manage stairs. You might sleep better if patient sleeps adjacent to your bedroom. That way you can listen out for them in the night, giving you more peace of mind until you feel more confident that they’ll be fine through the night without you.
 

Give thought to how to discuss a child’s illness with siblings.

  • The last weeks have had an enormous impact on them as they have worried intensely and absorbed the family stresses, felt your absence, had their own lives disrupted. Now that you are back home, you will have the opportunity to stabilize them by giving them more time and attention, letting them articulate their fears, and answering their questions to the degree that they need.
  • Children are very adaptable and they respond to you remaining steadfast, loving, and reassuring that all will eventually be better for the recovering child and all of you as a family unit.

The first weeks may be consumed with follow up visits to the sub-specialist physicians you’ve gotten to know during hospitalization. If you were hospitalized far from your home, you’ll be referred to local physicians for followup testing and medical care.

You may encounter medical setbacks that require re-hospitalizations or more procedures in the following months. Although these can be very discouraging, most likely these reversals will be minor and can be seen as a continuation of this “mopping up” recovery phase the patient is still in.

Rebuilding the patient’s physical strength and immune system, and regaining lost weight are of prime importance in the first weeks back home.

"Those first few weeks at home were hard. I was missing 'our people' who took care of us in the hospital. Family and friends were happy for us to be home, and many thought we were 'back to normal.'

We weren't.

Of course I was happy we were home, but there was a lot to navigate with doctors' appointments, medicines, tracking symptoms, finding the right therapists, helping the rest of the family adjust.

Feeding the family was particularly hard. I wanted to provide nutritious meals to help my daughter heal, but she still didn't have much of an appetite and we had new dietary restrictions to consider. It was a lot.

We got through it though, a day at a time.

Each week was a little easier than the last. I think it's normal to have complicated emotions around all of this. At the time, it didn't really feel normal."

⁕ Mother of an adolescent HUS survivor

Ask your family doctor or pediatrician about adequate sleep, increased physical activity, supplemental nutrition, and probiotics which can all play supporting roles in restoring health.

If the recovering patient is a child or teen, you and your doctor(s) will know when they are strong enough to return to school.

Beforehand you should request a meeting with the principal, nurse, psychologist, and anyone else who will be interacting with your child. You’ll want to bring the team up to date on current medical concerns and treatment. →

Most school systems will work with the family and allow resuming school with a partial schedule, perhaps half days until your child is strong enough.

Teachers can be flexible with deadlines and due dates for assignments. Bring work home and tutors can help your child catch up with missed work.

If your child needs special help educationally as a result of their illness, there are resources available.

Under the Individuals with Disabilities Education Act (IDEA), every child is entitled to educational support and your child might qualify for free services like tutoring.

Children who have had long hospitalizations can have Individual Education Programs (IEPs).

According to the Kid’s Health website, “These are customized goals and learning strategies created by the teachers, school psychologists (or other specialists), and counselors. IEPs consider a child’s individual academic needs. Under the IDEA, kids who qualify for an IEP will receive one at no cost, and get free support services (such as a tutor) to help them reach educational milestones. Your child might be entitled to a 504 Plan, which will specify physical accommodations to help them navigate school grounds, access classrooms and bathrooms, find an aide, or qualify for special transportation.”

“You and anyone on your child’s education team can ask for an IEP and 504 Plan. To create an IEP, you’ll meet with support staff from your school and the school district. Contact the Special Services Office in your school district as soon as the doctor says it’s time to plan for your child’s hospital discharge and return to school.” (Kid’s Health website)

“My teenaged daughter was feeling some pressure to get back to her regular routine at school. Not all of her teachers understood how sick she had been. While we generally liked to let her work things out with her teachers on her own, this was a time we needed to be directly involved.

Our daughter needed to hear from us that her health and recovery were the priorities and our expectations for her academically were different now. Her school counselor was helpful getting all her teachers on board.”

⁕ Mother of an HUS survivor

Regaining Emotional Balance

Inner strength, courage, commitment. Transformation.
Recovery and progress. Process solutions. Adapt strategies.
You are a survivor.

Putting your life back together, constructing a new one for a severely impacted victim of foodborne illness is a process that may take months or years. Most families who have gone through close encounters with life threatening diseases feel that they are forever changed in their outlook.

It is completely normal to begin viewing life as “before and after” the illness, experiencing the feeling that the life you had before is gone and now this new life is filled with so many new physical and emotional challenges. You may find yourself grieving the loss of the life you had prior to the illness. There are many emotional challenges along the way, but ultimately to become a true survivor, one must over time develop a sense of victory and empowerment.

Thankfully there is increasing awareness and there are many resources along the way to help you. The transformation from being a wounded victim to a person who has overcome tragedy and goes on to build an important life is an achievable goal. Do not be surprised if looking back, you find that your inner strength, courage, and commitment to others are qualities that were forged by this horrible experience.

Although unique to parents who have endured watching their child suffer from HUS, this research article about the emotional and behavioral changes in parents of children affected by HUS, applies to any parents who had a child suffer from a serious foodborne illness. It describes in detail some of the distressing consequences on parents who have watched their child suffer in the hospital and the fears that occur once back at home. This is all a normal reaction for the severe trauma you have been through.

Whether you were the person who experienced a foodborne illness or it was your child, medical trauma for Post Traumatic Stress Disorder(PTSD) is a new field. There is still a lot to learn and implement in the hospital setting. And when patients are discharged, not only will they have to continue with physical healing but they and their families will often have to focus on emotional and psychological healing.

Most families of patients who suffered severe foodborne illness experience longterm emotional distress and disruption to family and everyday life. Mental health experts conduct research about this impact and call it “Health Related Quality of Life” or (HRQoL) in the medical literature. HRQoL and PTSD for both recovering patients and their families are well described for diseases such as HUS. In fact, exposure to actual or threatened death and serious injury was included in the description of The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (2013, DSM-5), which acknowledged that medical trauma can cause PTSD.

“Honestly, it was the financial consequences of my illness that surprised me and impacted me the most.

When I was sickened with E.coli, I was young reporter still trying to get on my own two feet. I had health insurance, but it basically only covered catastrophic events – of which this more or less qualified.

Still, the illness cost me a lot of money. Foodborne illness can not only ruin someone’s health, it can also cause significant financial distress.”

⁕ Joe, E.coli survivor

My experience with E. coli has also caused me to develop irrational fears of certain foods.

For example, I never order salads or produce at fast food places, even though I’ve never had a bad experience having one. (Produce, however, has been increasingly the cause of E. coli breakouts.)

I have developed a phobia of undercooked meat. This is particularly a problem because my girlfriend is a food and drink writer, and so we eat at upscale restaurants constantly.

So, I have to look away when the table orders beef tartare or a similar raw-meat food item. These places usually scoff at serving steaks well done, and it is embarrassing at times.

⁕ Joe, E. coli survivor

Also recognized are Post Intensive Care Syndrome (PICS), and Post Intensive Care Syndrome Family Member (PICS-F). These diagnoses describe a collection of physical, mental and emotional symptoms that continue to persist after a patient leaves the Intensive care unit. Parents watching as children endure medical interventions, many feeling helpless to protect a child from suffering, are at high risk.

The National Child Traumatic Stress Network reports that 20% to 30% of parents in such situations experience lasting traumatic stress reactions.

Families of foodborne illness patients often are the ones to help raise awareness about the need for greater care and attention to the psychological component of healing. It is important that you raise the issue when meeting with the medical care givers continuing to follow your recovering patient’s progress.

“After 58 days in the hospital, we were so excited to come home!

However, I did not realize how difficult the transition would be. Even though my son was doing well, he was still weak and could not return to school. It was the middle of flu season and we had to be cautious. My husband had more sick days remaining than I did, so within four days, I had to return to work and my husband stayed home with our son for two more months. My son did all of his school work from home. Each day for me was a struggle. As a mother, I felt guilty that I could not stay home with him during this transition phase.

I cried every day in the car on my way to work.

I have no idea how I functioned at work, but somehow I did. I was also struggling with how vulnerable the world felt. I had thoughts I had never experienced before. Raw food scared me. What if E.coli was on it? I couldn’t bring myself to cook hamburgers, even using a food thermometer. I tried once, but felt too anxious. What if the meat had been contaminated? I threw them away.

Petting zoos, water parks, fun normal things were now viewed as dangerous. I even felt vulnerable driving in the car with just my husband and I. What if we got in an accident and both died? Who would raise our only child? A few months after we were back home, Chris had a stiff neck and a very bad headache. I started obsessing that it may be meningitis.

Looking back, I realize these were all anxiety symptoms of Post Traumatic Stress. It took a few years for life to go back to normal worries.”

⁕ Mary McGonigle, mother of HUS survivor

“As I continued to work on my physical self, I began to experience triggers that would bring about flashbacks followed by panic attacks.

The first flashback/panic attack happened at the local swimming pool. I was trying out a snorkel and face mask to help me breathe while floating on my stomach. I remembered the sound of the air going through the snorkel triggering a memory of being tethered to the ventilator I’d been dependent upon for three months.

Eventually, various memories, smells and sounds began to surface. The flashbacks were more than just a memory; they would put me back into the traumatic event.”

⁕ Mari, Campylobacter induced Guillain-Barré quadriplegia survivor who decided it was time to see a therapist that specialized in PTSD

We only had one doctor tell us that he was seriously worried that we would all develop PTSD after what Chris went through. After care for Chris all focused on Medical Care.

Not one doctor (GI, nephrologist, primary) ever asked how he was emotionally doing or asked us how we were.

My husband and I went to marriage counseling post HUS because we handled the hospital crisis so differently. The therapist missed the seriousness of the medical trauma and how really damaged we were.

A few years ago, I was telling Chris's pediatric nephrologist about our HUS Moms group. Explaining how many of both the kids and parents suffer from PTSD. He said we never think about the psychological consequences when treating an HUS patient. We just focus on saving their lives.

⁕ Mary McGonigle, Mother of an HUS survivor

“Months after bringing our son home, I was stopped at a stoplight. When the red flashed to green, it somehow triggered a memory of vital signs colorfully blinking on the monitor over his PICU bed. I found myself weeping in the intersection and had to explain to my younger children in the back seat, ‘Mommy’s okay. I just has a bad memory of when brother was sick.”

⁕ Mother of an HUS survivor

Normal temporary reactions to expect are:

Young children: Clinging to parents, bed wetting, being afraid of the dark

Older children: Changes in sleep and eating, agitation, complaints of minor illness

Parents: Constant worry, over-protectiveness, anxiety about caring for the patient’s medical needs, getting very upset at reminders of your child’s illness and hospitalization.

These are all common reactions and will improve on their own with time, patience, understanding, and support.

Signs that your child or you may need extra help:

• New fears, watching out for danger all the time

• Anxiety about school, usual activities

• Avoiding time with friends

• Arguing a lot with friends or family

• Feeling sad and lacking energy

Often family members are the ones who have to ask for help during the process of regaining their balance in the weeks and months following hospitalization.

Some of the resources available to you are:

• Mental health experts such as counselors, psychologists and psychiatrists

• School counselors sometimes run groups and can be a safe person for your child at school if they have a bad day

• Requesting a 504 Plan or Individual Health plan at your child’s school

• Specific to HUS: Hemolytic Uremic Syndrome (HUS) Support Group located on Facebook

Talk to your pediatrician or primary care doctor on how best to find the right person to help you over this hump.

There are many therapies available to help your child with PTSD. These might include :

• Eye Movement Desensitization and Reprocessing therapy (EMDR)

• Cognitive Behavioral Therapy (CBT)

• Neurofeedback

• Mindfulness-Based Cognitive Therapy

• Emotional Freedom Technique

• Play Therapy for younger children

• Post-traumatic growth (PTG)

Instead of an importable ravine to pass, EMDR gave me a bridge to the other side.

⁕ Chris Martin, HUS survivor

“My son became ill with Hemolytic-Uremic Syndrome when he was 7 years old.

We spent two months in the hospital.

For three years Chris would get these crying spells when something would trigger a bad memory in the hospital. Sometimes he would lay in my arms for hours and cry it out.

When he was 10, he came to me and asked if I could find someone to hypnotize him to make him forget all the bad memories. He started having panic attacks in 5th grade. I started doing research on trauma therapy and found a psychologist who did EMDR therapy.

In 2010, this was still a new therapy. I contacted the psychologist and he was willing to meet Chris to see if he had the cognitive ability to do this type of therapy. After the assessment, he was willing to try this with Chris, the youngest patient he had ever treated. After five 2 hour sessions, Chris was a changed child.

He went back a lighter-hearted personality and all the crying spells stopped. The only reminder of the hospital was his fear of needles. EMDR therapy was life changing for Chris.”

⁕ Mary McGonigle, mother of an HUS survivor

Post-Traumatic Growth (PTG) was developed by psychologists Richard Tedeschi, PhD, and Lawrence Calhoun, PhD, in the mid-1990s, and holds that people who endure psychological struggle following adversity can often see positive growth afterward.

As a parent, you will have to balance the approach you take toward your child as he or she continues to emotionally recover from the experience of suffering a life threatening, life altering disease. Naturally you need to seek help and solutions to help them process what has happened to them and find strategies to adapt to the lasting challenges their illness has caused.

On the other hand, you want to liberate them from being a victim, and empower them to become whole and healthy again, maximizing the internal strength they showed just through surviving a devastating illness.

Your child or loved one is a survivor, and ultimately you want them to feel and live as victors.

My experience of what E. coli poisoning left in its wake? I wear my scars with pride. They are outward signs of my life of Purpose, Gratitude, and Faith.

⁕ Damion Heersink, HUS/TTP survivor

“The EMDR session transported me back to the ICU. When the therapist asked what I was witnessing, I answered ‘My husband, sons and mother are at my bedside crying.’

The therapist then asked me what I was feeling, and I replied ‘guilt for the pain my decision to drink the raw milk caused’. Then I said ‘I’m not in ICU anymore’ and with that my therapist told me to open my eyes and continue to repeat and imprint that I was no longer in the ICU.

EMDR proved to be a major turning point. Now that my subconscious is established in the present, I no longer experience PTSD episodes.”

⁕ Mari Tardiff, Campylobacter jejuni/Guillain-Barré survivor

“Looking back 25 years ago, I believe the best advice his doctor gave us as parents was ‘Throw him back in the water”, as if he were some fish that narrowly escaped being caught.

At the time this seemed harsh to me and my husband was better at following this advice than I was. As soon as our boy was strong enough, he was thrown back into all the activities, responsibilities, and opportunities he had before he was sick.

Even though it took another decade before his gastrointestinal issues were surgically resolved, he soldiered on. That’s what’s made him the resilient person he is today.”

⁕ Mary Heersink, mother of HUS/TTP survivor
Looking for more?

Find links for multiple articles on Hemolytic Uremic Syndrome (HUS) and TTP, as well as Dealing with Medical Trauma, Emotional and Behavioral Changes,  Welcome to EMDR and more.

MORE INFORMATION ON REGAINING EMOTIONAL BALANCE

Long-term Follow-up for Severe Foodborne Illness

Some recovering patients will have medical problems that require long-term follow-up care. Your doctors and caregivers will design a care plan and direct you to helpful resources going forward.

Every year in the United States one in six Americans in infected with a foodborne pathogen. These illnesses come with a price tag of $15.5 billion in economic burden. The true impact is not limited to medical costs and loss of productivity during the critical stages.

The damage continues on for years of chronic illnesses and disabilities. It’s conservatively estimated that 200,000 Americans develop long-term ailments from food poisoning. Infections with Campylobacter, E. coli O157:H7, Listeria monocytogenes, Salmonella, Shigella and other pathogens can result in long-term sequelae to various organ systems. These chronic illnesses include chronic kidney disease (CKD), irritable bowel syndrome (IBS), reactive arthritis (Reiter’s Syndrome), Guillain-Barré Syndrome (GBS), insulin-dependent diabetes, seizures, visual disabilities, cognitive and developmental deficits.

“For me, it was just a case of the runs but I was much more scared for my unborn child when I learned that listeria likes to take up residence in the placenta and can cause stillbirth. I had spent my pregnancy eating organic foods, doing prenatal yoga, and practicing hypo-birthing techniques.

After consulting with my own ob/gyn and two others, I decided that the risk of still birth was too great and allowed myself to be admitted to the hospital for 4 days to receive intravenous antibiotics four times a day to kill the bacteria but save the baby. Several weeks later I was relieved to give birth to a baby that was alive.

However, the foodborne illness and the resulting treatment ended up affecting my baby. I had flooded my body and the placenta with antibiotics during his final weeks of development so that he would live past his birth, but in the process the drugs had ravaged his digestive system so that he suffered terribly from colic, stomach pain, constant vomiting, and dysfunctional bowels. After taking him to many medical specialists, looking at his abdominal x-rays, and even mapping his DNA, the medical community realized they couldn’t help him.

When he was 6-and-a-half years old, we found a naturopath who suggested using the Mediator Release Test (MRT) to design a customized anti-inflammatory diet for him. And it worked!

Finally, he began growing and sleeping and feeling well. It had taken more than six years to be able to move beyond that foodborne illness in my pregnancy.”

⁕ Elizabeth, Listeria survivor

When I returned to school that fall, my endurance was so low I had to take a period off around lunch to go home and nap before returning to finish my school day. I was a dancer, but I couldn’t go full on like I had in the past. It made me so sad that I couldn’t participate with my team, doing something I absolutely loved, because I wasn’t healthy enough.

Another thing that bothered me was all the attention poured on me. I’m not one for all of that, so I was frustrated by the seemingly constant stream of questions regarding how I was feeling and what happened.

Although I knew people were simply showing concern and care for me, I really only wanted one thing: To be normal again.

⁕ Angela, an adolescent E. coli O157:H7 survivor

“Ruby was nine months old when she first got sick. We don’t know what the long-term consequences are or will be — I will say it makes me wonder. Ruby gets sick more frequently than I, or my husband, ever did growing up. She seems to get every bug she comes in contact with, and she has much higher fevers when she gets sick. We can’t say for sure that the salmonella poisoning caused that, but I suspect it did.”

⁕ Melissa, mother of Salmonella survivor

After having already spent weeks to months in the hospital, having to go to the ER can be stressful, especially for children.

The video below, by Massachusetts General Hospital, is called You Are Here: Wendy’s Welcome to the ED.
Because of Wendy's E. coli experience and the complex medical consequences she's faced since then, she's well-able to explain what a pediatric patient can expect during a visit to the ER, while giving them insight to their healthcare experience.

Medical Consequences​

Some patients have medical consequences that require
long-term treatment, follow-up care, and readjustment to
the planned trajectories for their remaining lives.

Renal Impairment

Those recovering from hemolytic uremic syndrome (HUS) need regular follow-up care. During the acute stage of the disease, 50-70% require kidney dialysis. Between 30%-40% of HUS patients are discharged with some injury to their kidneys, even if they don’t experience obvious symptoms. They remain at risk for developing protein in their urine (proteinuria), high blood pressure (hypertension), and chronic kidney disease.

This risk only increases over time. At 1- and 5- year follow-ups, proteinuria and hypertension decrease. But after 10 years the number of patients with symptoms renal injury starts to increase. At 20 years post HUS, 25-30% of patients showed persistent renal impairment, putting them at lifelong risk of chronic kidney disease and high blood pressure.

Because kidney problems can appear at any time interval after the acute stages of the disease, all HUS patients need lifelong follow-up to detect early signs of chronic kidney disease.

For at least the first five years, recovered HUS patients need an annual follow-up examination of signs of hypertension, proteinuria, and renal insufficiency. Each visit should include blood pressure measurement and laboratory evaluation of renal function including urinalysis and serum creatinine concentration. For patients who become pregnant, it is also recommended that follow-up care includes assessment for elevated blood pressure and proteinuria.

"We were thrilled to be home, but were just beginning to learn how Dana’s Salmonella Poona would become a debilitating and lifelong challenge for her, and our family.

Ten days after ingesting the cantaloupe, Dana started complaining of joint pain. She continued to complain of joint pain and soreness at ages 4, 5, 6, 7, 8, 9, and at age 10.

Pediatricians and orthopedists continually dismissed it as “growing pains”. A day at Disney World, shopping, or playing with her beloved dog would turn into sleepless night of pain for Dana because her knees and ankles were sore.

Not many people think that joint pain can be associated with foodborne illness, but it can, and more often than one might think. At age 11, Dana was diagnosed with Reactive Arthritis, a condition that affects Dana’s life every day.

⁕ Colette, mother of Salmonella Poona survivor

Irritable Bowel Syndrome

Every year an estimated 164,000 foodborne illness patients develop Irritable Bowel Syndrome (IBS). The acute bacterial gastroenteritis caused by Salmonella, Campylobacter and Shigella can trigger IBS symptoms in 10% of those infected by these pathogens.

The defining features of IBS are recurring abdominal pain, diarrhea, or constipation. The duration and severity of symptoms vary. IBS severity can range from inconvenient to incapacitating, and can prevent individuals from participating in everyday activities. One half of IBS patients recover without treatment, but some take years to recover, especially those with untreated anxiety or depression.

Guillain-Barré syndrome

Guillain-Barré (Ghee-yan Bah-ray) syndrome (GBS) is an auto-immune disorder in which the myelin sheath covering the nerves is attacked, causing muscle weakness and sometimes paralysis. The most common trigger for GBS is Campylobacter, with as many as 40% of GBS cases in the United States thought to be caused by this pathogen.

During the acute stages hospitalized GBS patients are usually treated with plasma exchange and high dose immunoglobulin therapy (infusion of antibodies). Afterwards it can take as little as weeks to as long as years to recover. Eventually, 70% patients recover with physical therapy and conditioning programs. Between 60-80% are able to walk again within six months.

Some patients have permanent nerve damage and lifelong disability. Between 15-30% of GBS patients continue to have weakness, numbness and fatigue, limiting their function at work, home, and leisure activities.

Type 1 Diabetes

Children who develop diabetes (Type 1) as a result of pancreatic damage during the acute stages of HUS will start multiple daily insulin injections and glucose monitoring during their critical care and hospitalization on the ward. After hospital discharge, they will initially see their diabetes care team every three months.

Reactive Arthritis

There are 33,000 new cases each year of reactive arthritis caused by acute infections of Salmonella and Campylobacter

2-10% of salmonellosis patients develop reactive arthritis.

The usual symptoms of this auto-immune dysfunction are joint swelling and pain; painful eye inflammation and cloudy vision (Uveitis); painful urination due to inflammation of the urethra (Urethritis); and psoriasis.

Reactive Arthritis (sometimes called Reiter’s Syndrome) is a difficult condition to treat, and can take months or years to resolve. Patients often relapse after the 4 year post-foodborne infection; and for some patients symptoms of reactive arthritis become permanent.

I would say my greatest struggle from my foodborne illness is that I still have some neurological issues. I get these little jolts through my body and no one has been able to erase those.

Initially, I lost the ability to understand the lyrics in music, but I did many sessions of neurofeedback and I have recovered my ability to hear lyrics. It has been a long road.

⁕ Ines, schistosomiasis survivor
Looking for more?
Find links to articles about Reactive Arthritis, Irritable Bowel Syndrome (IBS), Guillain-Barré Syndrome (GBS) and more.
FIND OUT MORE IN RESOURCES FOR NAVIGATORS

Due to the nature of acquired brain injury at such a young age, Noah’s cognitive problems have emerged slowly over time as he is required to utilize more of his brain.

Noah felt the effect of his illness the most when he woke up and lost his ability to speak fluently. For an advanced child that is almost 4, this was extremely stressful.

⁕ Amanda, mother of Salmonella Heidelberg survivor

Cognitive and Developmental Deficiencies

In some studies up to 30% of HUS patients experience central nervous system (CNS) involvement while they are critically ill. This neurological dysfunction can include seizures, coma, stroke, weakness on one side (hemiparesis), and blindness.

After 5 years, 4% of HUS patients show continued neurological impact. Depending of the severity of CNS involvement during HUS, rehabilitation, special education, or occupational therapy may be required.

At this stage when you and your family are contending with followup care for your loved one, as well as self care, you may want to investigate the numerous resources on social media. For many, these community groups can provide personal support, medical and practical information, and deeper awareness.

Finding Support

Peer-to-Peer Mentoring

Mentors understand how chaotic, emotional, and overwhelming your world has become and they are available to offer a listening ear.

You do not need to struggle on your own.

We’ll connect you and/or a family member who is currently managing the impacts and persistent effects of foodborne illness with a mentor who has been similarly impacted and can share her/his unique perspective.

Though it seemed that everything was getting “back to normal” and I was healthy and ready to jump back into life, I still had some pretty strong fears about having this experience happen all over again.

After speaking with Jillian for only five minutes I had no doubt that she totally understood where I was coming from.

I knew that I was not alone, and that gave me strength.
Katie

Here are several Facebook Groups/Support Pages that you may want to access, if for no other reason than to know that you are not alone.

Facebook Groups for:

Hemolytic Uremic Syndrome/HUS:

• Hemolytic Uremic Syndrome (HUS) Support Group

• HUS Fighters

• Survivors Of Hemolytic-uremic syndrome

• HUS Moms: Join by invitation

Let us know at info@stopfoodborneillness.org if you are interested in this group. We know moms who will gladly extend an invitation to you.

Guillain-Barré  Syndrome (GBS):

• GBS Survivors

• GBS Learning Central

• Guillain-Barré Syndrome Survivors Network

•  Guillain-Barré Syndrome Awareness

• GBS/CIDP Exercisers

Reactive Arthritis:

• Reactive Arthritis Support: Join by request

• Reactive Arthritis/Reiter’s Syndrome

• Reactive Arthritis/Reiter’s Syndrome UK

• Coping With Inflammatory Arthritis and Life Stressors!

• Reiter’s Information & Support Group

• Chronic Inflammatory Response Syndrome

Irritable Bowel Syndrome (IBS) and Colitis:

• IBS Support Group for Women

• IBS Support Group

• IBS Support (Official)

• IBS Patient Support Group

• Colitis Support Group

• Ulcerative Colitis Support Group

• Girls with Guts Private Forum: Support for Women with IBD and/or Ostomies

More Support Pages

The mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Perspective

If you or your family member has suffered a severe foodborne illness, you’ve travelled a long and arduous path.

For some people, the impact of taking such a dramatic detour in their life’s plan is hard to measure until many months, and possibly even years, go by. Most survivors look back on their lives in terms of Before and After.

For one to transition from being a victim of foodborne illness to a foodborne illness survivor, even if you’ve endured the ultimate tragedy of losing your loved one, you will have to plot your own course of how to live a meaningful existence going forward.

  • Be kind to yourself.
  • Do not play the “blame game”, assuming guilt, or wrestling with questions of
    “If only I had …”
  • This was not your fault, but rather the failures in our food safety net.
  • Allow yourself to experience the stages of grief regarding what happened to you or your family member. Be aware that your emotions will probably range the full gamut of denial, anger, bargaining, depression, ultimate acceptance.
  • Find your own personal way to come to terms with what has happened to your life and the changes wrought.

Many survivors are empowered by helping others going through what they’ve experienced first-hand, fighting to bring awareness and reduce foodborne illness, or helping to create a safer food system by sharing their experience with other stakeholders.

      If you are so inclined there is much work to do.
      If you are busy or too tired for now, rest.

If you change your mind later, the work will still be here when you’re ready.

If you come out of this journey relishing your health, being thankful for the treasure you have in your family, mindful of the beauty surrounding us on earth, aware that every moment you have is an opportunity to do good, you will be a better person for the voyage you’ve made.

"Besides the obvious concerns of being sick and finding a cure, most people don’t consider the problem of days and weeks of missing work and the burden on the pocketbook that results. Or the frustration and damage caused by the unintended neglect of people who are depending on us.

When you’re sick there are responsibilities that go abandoned to the detriment of everyone involved. And then there’s the possibility of it all happening again … my anxiety is palpable.

I am the legal guardian for my grandfather, Herman. Considering that I cook for him, I hate to even think about the outcome had he eaten the same meat that made me sick. I tear up just at the thought!!

It is for him that I want to be part of this movement to make food safer. Contaminated food and the poisoning that accompanies it doesn’t just hurt the individual who is sick, it hurts family as well as the wider community.

For me, caring about food safety is caring about my grandfather, my friends and neighbors."

⁕ Danielle, antibiotic-resistant Salmonella Typhimurium survivor

Before I got sick, I was a laid back, go with the flow kind of kid. When I was in the hospital, I constantly felt like I was running late to something. I didn’t know what it was I was late for, or where I needed to be specifically, but I always wanted to know what time it was.

Whether this newfound anxiety about time was due to the toxins in my brain, or the fact that my world was in utter chaos and time was the one thing I tried desperately to hold onto, I’m not sure, but to this day, I’m always early.

⁕ Anne, E. coli O157:H7 survivor