Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.

GI Disorders

Crohn’s disease is a type of inflammatory bowel disease (IBD) in which your immune system recognizes the lining of your intestine as foreign. This causes the immune system to attack the intestinal epithelium, causing inflammation. Crohn’s disease usually follows a pattern of repeating cycles of intermittent flares in which the condition worsens and symptoms are present. Then a period of remission in which inflammation is controlled and symptoms are absent. The symptoms can range from mild to severe and can be disabling.
Signs and Symptoms:
Abdominal pain
Diarrhea
Fatigue
Unintentional weight loss
Anal pain
Arthritis: Typically in the larger joints and is most active when bowel symptoms are active.
Mouth sores: Usually found between the gums and lower lip, or along the sides of the tongue.
Eye inflammation (uveitis or scleritis): Can cause eye pain, blurry vision, and sensitivity to light.
Diagnosis: Crohn’s disease is confirmed through an intestinal biopsy taken during a colonoscopy. The specimen is studied microscopically for specific histological features, namely clusters of inflammatory cells called granulomas.
Treatment:
The first step of treatment is to manage Crohn’s with medications.
Anti-inflammatory medications (e.g., corticosteroids, 5-aminosalicylates, sulfasalazine), can help to counteract and prevent inflammation.
Immunomodulators (e.g. azathioprine, methotrexate, and 6-mercaptopurine) and biologic response modifiers, (infliximab, adalimumab, certolizumab), can reduce the immune response to attack the intestines.
In some instances, the chronic inflammation and scarring from Chrohn's can lead to complications that require surgery.
Surgery may result in massive resection and short bowel syndrome.
In this case, you may need to seek care from an intestinal rehabilitation and transplantation center to optimize your nutritional status and remaining intestine.
Common complications from Crohn's requiring resection of the bowel:
Stricture: Narrowing of the intestinal wall
Perforation: This occurs when the intestinal wall is punctured or torn.
Hemorrhage: This is excessive bleeding.
Abscess formation: This is a localized collection of infection
Fistula: This is an abnormal pathway leading from one part of the intestine to another portion of intestine or to another organ in the body. In some cases a fistula may also lead outside the body onto the skin.
A volvulus occurs when part of the intestine is twisted or rotates on itself and the mesentery. The mesentery is the supportive tissue that anchors the intestine to the abdomen's back wall and contains the essential blood vessels, lymphatics, and nerves to supply the intestine. When the intestine twists, it creates a bowel obstruction that cuts off the intestine’s blood supply, therefore affecting bowel function and ultimately resulting in death to the bowel if not treated promptly.
Bowel necrosis (death) results in the requirement of massive bowel resection (removal). This often leaves an individual with short bowel syndrome and the inability to maintain adequate nutrition by mouth. The cause of the twisting is not known.
Symptoms may include:
Severe abdominal pain
Nausea and vomiting
Constipation
Bloody stools
Abdominal distention.
Diagnosis is based on clinical picture, physical exam, abdominal x-ray, CT scan, and/or upper/lower GI barium series.
Treatment is surgical with correction of the volvulus and resection of any necrotic (dead) bowel. If the resection is massive, referral to an intestinal rehabilitation and transplantation center may be indicated.
Ischemia is a general term that means an inadequate blood supply to an organ or part of the body. The intestine is supplied by various blood vessels and is a highly vascularized organ.
There are several different causes of ischemia in the intestine:
1. Arterial thrombosis (blood clot): The artery called the superior mesenteric artery (SMA) supplies the majority of the small intestine and the first portion of the colon up to the splenic flexure, the bend between the transverse colon (2nd part) and descending (3rd part) colon. When a blood clot in the superior mesenteric artery (SMA) creates a blockage, it stops the delivery of oxygen to the intestine, and results in the death of the organ.
2. Adhesions: Adhesions are scar tissue that form from previous trauma or surgery. In some cases, adhesions can trap the intestine and its vessels, leading to ischemia.
3. Embolus: In some cases, a blood clot can travel from another location in the body and become lodged in an intestinal vessel, leading to intestinal ischemia and necrosis. This is common in individuals with atrial fibrillation and heart arrhythmias.
4. Other possible causes of ischemia may be due to diseases of the blood vessels or overactive blood clotting disorders (hypercoagulable states).
Symptom: Severe abdominal pain is usually the presenting symptom. You may also experience fever, diarrhea, and nausea/vomiting.
Diagnosis: Diagnosis is based on history, CT scan, and/or angiography. Bloodwork may also reveal abnormal cell counts and levels.
When a blockage occurs, the necrotic (dead) intestine must be removed, leaving the individual with a short bowel, which is insufficient to provide the essential nutrients required to sustain life. Individuals usually will be placed on parenteral nutrition and referred to an intestinal rehabilitation and transplantation center to optimize nutrition and receive further treatment.
A neuroendocrine tumor (NET) begins in the specialized cells of the body’s neuroendocrine system. These cells can be found in many organs of the body, and they carry messages from the nervous system to the endocrine system, ultimately causing the release of hormones. Hormones are substances that regulate many functions in our body, such as blood pressure, digestion, and heart rate.
NETs are always malignant (cancerous) tumors but are slow-growing. They are most commonly found in the gastrointestinal tract, lung, and pancreas. Depending upon the location of the tumor, determines the signs and symptoms an individual may experience.
Additionally, tumors can be functional or non-functional tumors. Non-functional tumors do not produce hormones, so they may not cause any symptoms unless they grow large enough to cause an issue, such as a blockage in the intestine.
When NETs are in the GI tract, common signs and symptoms include:
Abdominal pain
Bloating
Nausea/vomiting
Diarrhea
Changes in stool color (gray or whitish color)
Weight loss
Blood in stool
Diagnosis: Many different tests can help diagnose NETs. Your team may order various imaging tests to look for tumors, including ultrasound, MRI, CT scan, nuclear medicine imaging, and/or a PET scan. For a definitive diagnosis, a biopsy of a tumor will be taken. If the NET is in your GI tract, you probably will need an endoscopy and/or colonoscopy.
Treatment: Removal of the tumor via surgery is the mainstay treatment. For individuals that have extensive NETs in the GI tract, this can lead to short bowel syndrome. In these cases, referral to an intestinal rehabilitation and transplantation center may be warranted to help optimize nutrition and aid in intestinal adaptation. If surgery does not solve the problem, medications can be tried.
If you wish to read more extensively on NETs, please visit the Neuroendocrine Tumor Research Foundation website.
Radiation enteritis is damage to the lining of the intestinal tract caused by radiation therapy.
Radiation is used as a cancer treatment and functions by using high-powered x-ray to kill cancer cells, but the issue is that it can also damage healthy cells. In radiation enteritis there is damage to the cells that line the intestinal tract.
Who is at risk? Individuals who have had radiation to areas around their abdomen or pelvis, such as with:
Cervical cancer
Pancreatic cancer
Prostate cancer
Uterine cancer
Colon and rectal cancer
Signs and Symptoms
Diarrhea
Abdominal pain
Nausea and vomiting
Weight loss
Bleeding from rectum
Loss of appetite
Diagnosis: A variety of tests may be ordered, including barium x-ray, sigmoidoscopy, colonoscopy, or endoscopy to view the lining of your intestine.
Treatment: Generally, it is just symptom management. If the radiation has caused significant damage to your intestinal lining and you are no longer able to absorb nutrients efficiently to maintain nutritional status, you may need extra nutritional support. Referral to an intestinal rehabilitation or intestinal transplantation program may be indicated.
The literal translation of gastroparesis is "stomach paralysis." It is a condition in which the motility of the stomach is either abnormal or absent and results in delayed stomach emptying.
Symptoms:
Nausea and vomiting
Bloating
Getting full quickly
Heartburn
Upper abdominal pain
Diagnosis:
Gastric emptying study: A nuclear medicine test in which you ingest some type of food (usually an egg sandwich) which contains a radioactive tracer to monitor how long it takes for food to leave your stomach. A delay in emptying indicates gastroparesis.
Gastroduodenal manometry: This test uses a specialized tube to measure the contractions of you stomach and upper portion of your small intestine, the duodenum. Usually the test will run in a fasted state and then while you are eating to monitor stomach contractions.
Upper endoscopy: This is when a small tube with a pin-point camera at the end is advanced down your throat and into your stomach. While this cannot diagnose gastroparesis, it can help rule out other possible causes of upper abdominal pain and other symptoms you may be having, such as a gastric ulcer.
SmartPill®: This is a capsule that can measure temperature, pH, and pressure changes as it travels through your digestive tract. It can monitor the rate at which things are moving through your system.
Treatment:
Diet modification: Working with a nutritionist is important for individual's with gastroparesis.
Medications: The purpose of medication is to help increase stomach emptying, however, the medications that do exist often have unwanted side effect profiles. Speak with your team about options.
Endoscopic Options: A balloon dilator may be positioned to engage the pylorus (opening from stomach to duodenum) and dilated (expanded) to 15 or 20 mm. The pylorus may also be injected with botulinum toxin (Botox) to relax the pyloric muscle. Stomach emptying may often improve following these strategies used separately or together, but relief of symptoms is inconsistent.
Surgical options- Gastric pacemaker: Uses electrical stimulation to enhance gastrointestinal contractile activity. The pacemaker is surgically implanted under the skin and is connected to electrodes placed on the stomach wall.
To read more about gastroparesis and find more support, visit G-PACT.
Chronic Intestinal Pseudo-Obstruction (CIPO) is a rare condition that can affect all segments of the gastrointestinal tract and is characterized by failure of the movement of intestinal contents due to the inability to generate suitable motor patterns, either due to a deficit in the neuropathic (nerve) or myopathic (muscle) forces.
Commonly, in adults, it is secondary to neuromuscular diseases such as scleroderma, systemic sclerosis, bronchial carcinoma, or amyloidosis. In other cases, it may be a primary disease that selectively affects the smooth muscle or enteric nerve plexuses in which it may be a degenerative or inflammatory process.
Rarely, pseudo-obstruction arises acutely in a condition known as Ogilvie’s syndrome, and is concurrent with non-gastrointestinal disorders such as myocardial infarction, infection, or non-operative trauma. This syndrome is characterized by acute colonic dilation, pain, and abdominal distention.
Signs and Symptoms:
Abdominal pain
Distention
Nausea and/or vomiting
Constipation
Early satiety (fullness)
Diagnosis:
Manometry: The gold standard for diagnosis as it measures the contractions of the intestinal tract and can help to localize the functioning areas of the gastrointestinal tract. Manometry can help evaluate functional areas prior to any surgical intervention or creation of a stoma.
Gastric emptying studies: Direct, noninvasive measurements of liquid or solid gastric emptying to assess the function of the stomach.
Full-thickness biopsy: Full-thickness biopsies are useful in the diagnosis of autoimmune or mitochondrial etiology for chronic intestinal pseudo obstruction and can get a better understanding of abnormalities of the enteric nervous system.
Treatment:
Nutritional Support: The majority of patients will require nutritional support, often requiring parenteral nutrition (PN).
Prokinetics: These medications help to increase the motility, or movement of contents through the intestine. Examples include erythromycin, octreotide, prucalopride, and tegaserod.
Antibiotics: Poor motility can result in the overgrowth of bacteria in the intestine. If you have small intestinal bacterial overgrowth (SIBO), an antibiotic may be prescribed to help treat your symptoms.
Surgical: A decompressing gastrostomy or jejunostomy may be beneficial to help decompress the stomach or intestine in individuals with CIPO.
Small Intestine Transplant: This may be indicated in patients who have PN dependency and are in PN failure. It is important to evaluate the presence or absence of gastric or colonic dysfunction, so the decision can be made whether to proceed with an isolated or multivisceral transplant.
Bariatric and gastric bypass surgery are procedures used to help people lose weight. The downside to these procedures is that there is a risk of complications, many of which can lead to massive bowel resection and short bowel syndrome. In these cases, it may leave an individual with the need for parenteral nutrition (PN) and further treatment at an intestinal rehabilitation or transplantation center.
Complications after bariatric surgery that may require bowel resection include:
Obstructions due to adhesions
Internal hernias
Volvulus
Incarcerated incisional hernias
Mesenteric ischemia
Complications in the bypassed intestine
Desmoid tumors are benign (not harmful) tumors. Still, they are infiltrative (grow into healthy tissue) and locally invasive, entrap the mesenteric vasculature, and can lead to obstructions and fistulas.
Desmoid tumors are generally unresponsive to standard chemotherapeutic agents; thus, complete surgical removal of the intestine is often required. This can leave an individual with a short bowel that is insufficient to support nutritional needs.
If an individual requires additional nutritional support, referral to an intestinal rehabilitation and transplantation center may be beneficial. The team at the center can determine the best course of treatment, including rehabilitation or transplantation.
Gardner's Syndrome
Desmoid tumors are commonly associated with Gardner’s syndrome. Gardner’s syndrome is a form of familial adenomatous polyposis (FAP) that is characterized by multiple colorectal polyps and various types of tumors, both benign (not harmful) and malignant (harmful).
Individuals with Gardner’s will commonly contract different types of tumors, such as osteomas (bone tumor), fibromas (tumor of connective tissue), lipomas (tumor of fat tissue), and desmoid tumors (connective tissue).
It is not uncommon for Gardner’s patients to undergo a total proctocolectomy (removal of colon, rectum, and anus) to treat the primary disease and prevent progression to cancer.
Apart from a total protocolectomy, resections for desmoid tumors in the intestine can be performed, but multiple resections can lead to short bowel syndrome and insufficient absorption.
Small bowel desmoids may also be treated with radiation, which can lead to radiation enteritis in the remaining bowel and impede absorption.
If an individual is unable to maintain nutritional status and requires additional nutritional support, referral to an intestinal rehabilitation and transplantation center may be beneficial. The team at the center can determine the best course of treatment, including rehabilitation or transplantation.