Your medical care team
When you enter the world of Short Gut, it is usually via the path of a major medical intervention in a hospital and, while there, you are surrounded by a seeming army of medical professionals. Keeping their specialties straight can be overwhelming. Then, when discharge rolls around need your own team of doctors. But that raises questions. Who should be on it? And who do you call if you need help your key team doesn't provide?
Short gut specialists
Most Intestinal Rehabilitation Teams involve these key players:
- Gastroenterologists (GI) are expert in the digestive system. Gastroenterology is a broad topic covering the stomach, liver, intestine, gallbladder, and pancreas. Because this is such a broad field, different GI doctors will usually have a special interest in one or two organs or groups of diseases. Not every doctor will be good at short gut. GIs who excel in care for SBS are experts in the topics of nutrition, digestion, and the intestine.
- Surgeons. Odds are good your SBS journey started with a surgeon. Sometimes, surgeons will continue to follow an SBS patient after that first surgery. Other times, a surgeon will come back onto the case when problems arise that require surgery. The intestine falls under the specialty of general surgery, which, again, is a broad field, but some general surgeons are better at certain types of surgeries than others. Expertise matters. Intestinal rehab surgeons have a deeper understanding of and more practice in performing intestinal surgery, especially the specific surgeries used for SBS.
Surgeons can also place tunneled central venous catheters and ports.
- Dietitians. Nutrition is central to SBS care. Dietitians keep a close eye on a patient's health and nutrition, order parenteral or enteral nutrition, and help patients and families make good food choices. Your dietitian will probably use labwork to keep track of your nutrition. They use this information to make changes to your TPN formula, tube feeding regimen, or diet. A dietitian is a go-to person for advice about introducing foods and weaning off TPN and/or tube feeds.
The supporting cast
In addition to these main players, you'll likely cross paths with one or more of the following specialties:
- Primary care provider or general practitioner. Although it feels counterintuitive with so many specialists on board, it is important to still have a primary care doctor whom you will see for common illnesses, well-checks, immunizations, and for referrals to other specialists.
- Interventional radiologists Often an overlooked specialty, interventional radiologists are doctors who specialize in using imaging, such as X-rays, to guide medical procedures. Interventional radiologists place J-tubes/GJ tubes and some central lines. IR doctors may be able to restore central venous access and place alternative lines if too many veins are lost.
- Infectious disease specialists/ Epidemiologists specialize in the spread of disease are often called upon to treat central line infections and may be responsible for prescribing antibiotics/antifungals and in providing follow-up care after an infection.
- Radiologists interpret X-rays, ultrasounds, CT scans, MRIs, etc. They are usually helped by a radiology technician, who performs the study. Ultrasound is used to keep track of vein health. X-ray can monitor the growth and function of the intestine.
Until you enter the world of SBS, you may not realize how many kinds of pharmacists there are.
- Hospital, IRP or Transplant pharmacist work with your doctor, IRP, or transplant team to monitor and recommend medications to prescribe. They also educate patients on medications.
- Neighborhood pharmacist fill most of your prescriptions. Some insurance companies offer an additional benefit for mail-order or 90-day fill prescriptions, which may mean you have a mail-order pharmacy for long-term prescriptions and a neighborhood pharmacy for short-term prescriptions, such as oral antibiotics.
- Compounding pharmacist specialize in compounding, or mixing, specialty medications. A compounding pharmacist makes liquid medications, a need for small children and people with g-tubes. Some also make special injectable medicines.
- Specialty pharmacist fill specialty, high-priced medications. Specialty pharmacies are usually mail-order pharmacies and pre-authorization from your insurance is required.
Home health care
- Infusion pharmacists prepare your TPN and other infusions, such as hydration fluids and IV antibiotics or other IV medications. Most TPN-dependent patients speak weekly with an infusion pharmacist or technician as they receive weekly shipments of TPN and supplies.
- Enteral nutrition pharmacists and specialists in home health companies provide supplies for enteral feeding, including feeding tubes and formula. They may rent, maintain and/or sell pumps, or they may provide supplies to care for the skin around the g-tube.
- Home health nurses and other home health specialistsSome patients may qualify for in-home nursing. This could be shift nursing where nurses stay and provide care or need-based nursing, where nurses come only for specific needs such as lab draws and dressing changes. Respite care may also be provided, which is nursing or other care that gives a break for a family caregiver. Home health agencies may also employ dietitians, pharmacists, or nurses who advise patients.
- Durable medical equipment providers (DME) are companies that sell or rent medical equipment are called DMEs. If you have a g-tube, or ostomy, or need continence supplies, you will likely receive supplies through a DME.
Nurses are central to healthcare. In the hospital, they provide hands-on care. Outside the hospital, nurses are the first point of contact in doctor's offices. Besides these well-known roles, some nurses specialize in unique areas that help SBS patients.
- Wound and ostomy care nurses tend to wounds and, more importantly, surgically created stomas such as G-tubes and ostomies. You can ask for an ostomy nurse in the hospital or with your GI. Ostomy supply manufacturers also hire nurses who help patients over the phone.
- Vascular access nurses, in some hospitals known as IV or vascular access teams, place and care for IVs and central lines. They are the person you call when having a hard time finding a vein for labs or for an IV. They may place PICC lines. In some cases, they repair broken central lines. To protect long-term vascular access, many SBS patients insist that only a vascular access nurse access their veins.
Therapists help patients to recover and adapt to life with chronic illness.
- Physical therapists (PT) help patients recover physically from surgery, injury, or illness.
- Occupational therapists (OT)work on fine motor skills, sensory processing, self-regulation, and any other skill needed for daily living, including feeding.
- Speech therapists treat speech problems, but are also experts in oral motor movements, like those needed for feeding.
- Feeding therapists are usually occupational therapists, speech therapists, or behaviorists who help patients learn to eat by combining exercises to develop the muscles of the mouth and introducing foods gradually and incrementally.
Mental health and social well-being
- Psychologists/Psychiatrists help patients and parents/caregivers to cope with the demands, stress, and trauma of living with chronic illness. Depression, anxiety, and traumatic stress are high among chronic patients and caregivers -- working with a mental health provider helps recovery and quality of life.
- Child life specialists in pediatric hospitals and units help children cope with their medical experiences through play. They may help explain a procedure to a child or be there to assist and comfort them through it. They also provide fun activities for children and their families during hospital stays.
- Social workers help patients and caregivers to deal with emotional, financial, and social issues. They can provide counseling. They can also help navigate social services such as insurance, government benefits, housing, financial aid, lodging, and transportation for medical appointments and hospital stays, etc.
- Palliative care is sometimes known as comfort care. The purpose of palliative care is to improve quality of life. Different from hospice care, which helps a patient with end-of-life care, palliative care teams focus on living. These are often multi-disciplinary teams made up of doctors, nurses, mental health specialists, social workers, and chaplains. They can recommend medication and treatment to relieve pain and discomfort, but their services extend beyond that service. They help patients and families with medical decisions by helping them understand proposed treatments, weigh risks and benefits, and choose a course of care based on your life priorities. They also help communicate those wishes to the rest of the medical team. Palliative care teams also offer emotional support and may organize support groups and other activities that foster peer-to-peer connections.
For medically complex patients, insurance companies will often assign a case manager to help the patient understand their insurance plan and work with the insurance company. Medicaid and Medicare also sometimes assign caseworkers, especially for patients in waiver programs. Case managers are usually nurses with training in insurance company policies and can help patients with preauthorizations, questions about coverage, and finding providers.
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