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Back to Basics

Welcome to the IBD Academy! We’re excited to help to shed some light on the ins and outs of Inflammatory Bowel Disease (IBD), its treatments, and the ongoing research in the field.

This resources was developed by GWG members Kristen Weiss Sanders, Alicia Aiello, Manda Barger, and Jenny Harrison. It was medically reviewed by Robin L Dalal MD, an Assistant Professor of Medicine at Vanderbilt University Medical Center.

Navigate this guide through our website or scroll to the bottom to print out a PDF you can share with your family and friends to help them understand your situation.

While we strongly advocate being involved in decisions regarding your treatment, make sure that you only take medications and other treatments under your doctor’s supervision.

What is immune-mediated disease?

Your body’s immune system is an amazing and complex system. It uses inflammation and other means to protect you from disease and help you heal from injuries. It’s able to protect the body through its fundamental ability to distinguish between its own cells and substances and something foreign from the outside. These foreign substances can be bacteria, viruses, toxins, or other chemicals. When your body detects these things, the immune system then produces various proteins and signals that are critical in the defense of your body from these substances.

For years, IBD has been called an autoimmune disease- a state when the immune system identifies some of the body’s own tissue as foreign and attacks it. Autoimmune diseases are part of a larger group of immune-mediated diseases. Immune-mediated diseases are conditions where the immune system is acting abnormally. Recently, some researchers have removed IBD from the autoimmune group but left it in the larger immune-mediated disease category with other diseases like rheumatoid arthritis and lupus. There is also no “one thing” that causes IBD; it is multifactorial. The development of the disease is affected by additional factors including genetics and environmental exposures such as bacteria and stress.

As of now, there are no treatments to cure IBD. When you discuss a treatment plan with your doctor, you are determining a way to hopefully control it. IBD often comes in cycles. When there is inflammation, doctors call this phase a “flare.” In IBD, it is important to reduce the severity, length, and frequency of a flare to avoid further complications, including cancer. “Remission” is when there is no inflammation and fewer, lessened symptoms. “Deep remission” means there is no inflammation even on the cellular level, which is what patients and doctors strive to achieve. Flares and remission could each last a few months to years. That is why you must continue to follow up and see your doctor- even when you feel better.

What is inflammatory bowel disease?

Inflammatory bowel disease (IBD) causes chronic inflammation along the gastrointestinal (GI) tract. Researchers have spent decades studying this multifactorial disease to find how to best treat it. IBD is a chronic and lifelong illness with no cure, although symptoms can be managed.

The two main types of IBD are Crohn’s disease (CD) and ulcerative colitis (UC). It is important to note that “IBD” is a different disorder than irritable bowel syndrome (IBS). While IBS is a disorder that affects the intestines, it does not change or damage tissue within the GI tract so it is not an IBD.

The Centers for Disease Control (CDC) estimated that 3 million US adults were diagnosed with a form of IBD in 2015.

What is Crohn’s disease?

Crohn’s disease (Crohn’s or CD) causes inflammation along any part of the digestive system from the mouth to the anus, often in “patches.” It is most often seen in the ileum (the last section of the small intestine) and/or the colon (the large intestine). A section of the affected bowel wall may thicken and swell. Ulcers often appear. This can cause symptoms including abdominal pain, diarrhea (sometimes bloody), nausea, fatigue, weight loss, poor nutrition, and anemia (low blood counts).

Some Crohn’s patients suffer from complications including intestinal blockages, fistulas (tunnels forming from the colon and traveling into other tissue), abscesses (collections of infection), fissures (rips or tears in the anus), joint pain, eye inflammation, and skin problems.

People are most often diagnosed with Crohn’s disease between the ages of 15 and 35, but it can appear at any age.

What is ulcerative colitis?

Ulcerative colitis (UC) causes inflammation along the innermost lining of the large intestine (colon and/or rectum). Ulcers and swelling develop and can cause blood, mucous, or pus in the stool. UC can affect different parts of the colon such as the rectum (called proctitis), the left colon, or the entire colon (called pan-colitis). Symptoms of UC are similar to CD – people can experience blood in the stool, urgency, anemia, diarrhea, abdominal pain and cramping, nausea, fatigue, weight loss, and low nutrition.

Unlike those with Crohn’s, UC patients do not typically have: fistulas or inflammation outside of the colon.

People are most often diagnosed with UC between the ages of 15 and 35, but can begin at any age.

Both CD and UC can cause severe complications like:

  • Toxic megacolon: the colon is unable to pass anything and swells, potentially rupturing
  • Bowel perforation: a hole develops in the small/large intestine, potentially causing sepsis
  • Sepsis: an improper body response to infection, causing organ and tissue damage

There are times someone has inflammation in the colon but doctors cannot determine if it is UC or CD. This is often called indeterminate colitis.

While Crohn’s and UC are the most common, there is a rarer form of IBD called microscopic colitis.

Microscopic colitis causes persistent diarrhea but typically requires looking at tissue with a microscope to identify. This condition does have subtypes based on what is causing the inflammation: collagenous colitis, lymphocytic colitis, or incomplete microscopic colitis (mixed features of collagenous and lymphocytic colitis).

Terminology

The small intestine connects the stomach and the colon. It includes the duodenum, jejunum, and ileum. © 2013 Terese Winslow LLC (some rights held by National Institutes of Health).

The left side of the colon has four sections: the descending colon, the sigmoid colon, the rectum, and the anus. © 2018 Cedars-Sinai.

Diagnosing IBD

IBD often starts with someone noticing symptoms such as persistent abdominal pain, nausea, bloating, weight loss, and blood in the stool. Doctors have to rule out other potential causes first though. These symptoms may be from a GI bacterial or viral infection along with other conditions like IBS, a food allergy, celiac disease, diverticulitis, or even cancer. The main tools used to differentiate and diagnose IBD are lab tests involving blood and stool, imaging, and endoscopic procedures.

For some, the diagnostic process may happen in a few days under emergency circumstances. Others have symptoms for months or years before a definitive diagnosis is made. Additionally, even once the presence of inflammatory bowel disease is clear, it can still be difficult to differentiate between Crohn’s and ulcerative colitis in certain people. Some may be diagnosed with UC only to have their diagnosis change to Crohn’s disease later on. A smaller number of IBD patients are diagnosed with “indeterminate colitis” when the distinction cannot be made between Crohn’s and UC despite extensive diagnostic testing.

Laboratory Tests

Blood tests:

  • Could help diagnose and track a patient’s health throughout their life.
  • White blood cell (WBC) count: an increased number of WBCs in the blood often indicates a bacterial or viral infection. Having an infection may cause symptoms similar to those of IBD but point away from a diagnosis of IBD itself.
  • Hemoglobin (Hgb) and hematocrit (Hct) levels: when these levels are low, it indicates anemia, a condition where there is an inadequate amount of iron in the blood. Anemia can occur from blood loss in the intestinal tract and may contribute to an IBD diagnosis.
  • Platelet count: an increased number of platelets in the blood can indicate a reaction in the body such as inflammation.
  • C-reactive protein (CRP) test: increased levels of CRP in the blood can indicate significant inflammation is present in the body.

Stool sample tests:

  • Fecal occult blood test: used to detect blood in the stool
  • Tests for common GI infections: helps to rule out IBD & decide best treatment
  • Calprotectin test: an elevated level of this protein complex in the stool can indicate active IBD

Imaging

  • X-ray: used to look for serious complications that may be associated with IBD, including an intestinal narrowing, a blockage, or a perforation.11
  • Fluoroscopy: barium, a substance that coats the walls of the GI tract, is given orally (upper GI series) or rectally (lower GI series). Then, using a fluoroscopy machine, which continually emits x-rays, medical staff can see the intestinal wall and the movement of barium through the GI tract.
  • Computerized tomography (CT) scan: creates cross-sectional images (a stack of x-rays) of the intestines and allows doctors to look for disease. It also helps to rule out other conditions and identify complications.
  • Magnetic resonance imaging (MRI): creates detailed images of the bowel and surrounding organs using a magnetic field and radio waves instead of radiation.
  • Magnetic resonance enterography (MRE): uses both IV and oral contrast, in addition to MRI technology, to produce detailed images of the small bowel. These scans can help to see the severity of Crohn’s disease in the small intestine and reveal bleeding, inflammation, abscesses, tears, or blockages.

Endoscopic Procedures

An upper endoscopy and/or colonoscopy along with biopsies during that scope is the only way to definitively diagnose IBD.

  • Upper endoscopy: a flexible lighted tube is inserted in the mouth and lowered down through the esophagus and stomach into the duodenum, the first part of the small intestine. These areas can sometimes be affected by Crohn’s disease.13
  • Capsule endoscopy: a capsule with a tiny camera in it, which can take up to 50,000 images, is swallowed and later passed in the stool. It is used to take pictures inside the small intestine to look for signs of Crohn’s disease.
  • Double-balloon endoscopy: a long scope with two balloons attached is advanced further into the small bowel than a traditional endoscope and can also be used to diagnose Crohn’s disease.
  • Colonoscopy: a scope is inserted into the rectum and is advanced up around the colon to visualize the large intestine. These images can lead to a definitive diagnosis of ulcerative colitis and can help to distinguish UC from Crohn’s disease. 14
  • Flexible sigmoidoscopy: a scope is used to examine just the rectum and the lowest part of the colon, the sigmoid. This procedure is sometimes done in the office to provide quicker initial answers than scheduling a full colonoscopy.
  • Biopsies: during endoscopic procedures, tiny samples of intestinal tissue can be taken out and analyzed for indications of IBD. Certain microscopic characteristics of the mucosa can specifically indicate Crohn’s or UC.

IDB Treatment: Medication

Knowledge is your best tool in treating Inflammatory Bowel Disease. Many patients with IBD end up taking different series of medications before their doctors find the one(s) that work best. There are five major classes of drugs used to treat IBD: aminosalicylates (5-ASAs), corticosteroids, immunomodulators, biologics, and most recently, small molecules. A few other options like antibiotics, antiemetics, and antidiarrheals are used to target associated symptoms, but to not treat IBD itself.

Prescription savings programs are a significant tool for patients. While several of the medications listed below do not have a cheaper generic form, the manufacturing company often offers a program patients can apply for yearly. These programs can reduce the cost of expensive medicine by hundreds, if not thousands, of dollars.

WHILE WE STRONGLY ADVOCATE BEING INVOLVED IN DECISIONS REGARDING YOUR TREATMENT, MAKE SURE THAT YOU ONLY TAKE MEDICATIONS AS PRESCRIBED BY YOUR DOCTOR AND UNDER THEIR SUPERVISION.

How medications are given

Orally

  • Oral tablet or capsule: medication is swallowed whole and absorbed into the body via the digestive tract.
  • Orally disintegrating (sublingual) tablet (ODT): a dissolvable tablet is placed under the tongue and absorbed through the cheek. These begin to work faster than tablets that are swallowed.

Rectally: allows medications to be applied directly to affected tissue while limiting the drug’s presence in the rest of the body.

  • Suppository: a wax-based form of medication is placed in the rectum to target IBD confined to the rectum (proctitis).
  • Rectal foam: medication formulated as a foam is propelled into the rectum to target IBD of the rectum and sigmoid colon (proctosigmoiditis).
  • Enema: a liquid suspension of medication is put directly into the rectum. This method is used to target IBD which has spread up through the rectum into the distal colon (distal colitis).

Injection:

  • Subcutaneous (SC) injection: medication in liquid form is injected and absorbed under the skin.
  • Intramuscular (IM) injection: medication in liquid form is injected directly into the muscle (usually the upper arm or thigh).

Infusion:

  • Medication in liquid form is injected through a needle which has been inserted into a vein.

Auxiliary Drugs

Targets specific symptoms of IBD but not the underlying disease.

  • Antibiotics: reduce a wide range of intestinal bacteria. 18
    • Cipro (ciprofloxacin): oral and IV
    • Flagyl (metronidazole): oral and IV
    • Particularly effective in treating Crohn’s patients with fistulas or abscesses
    • Not very effective in UC patients, with the exception of acute toxic megacolon
    • Often used to treat pouchitis in ileoanal pouch (j-pouch) patients

 

  • Antiemetics: target a variety of receptors in the brainstem to inhibit the gut’s autonomic nervous system response that causes nausea and vomiting.
    • Zofran (ondansetron): Oral, ODT and IV
    • Phenergan (promethazine): oral, IV (central lines only) and IM

 

  • Anti-diarrheals: slow peristalsis (the involuntary waves of muscle contractions that propel fecal matter along the digestive tract, allowing more water to be absorbed and the stool to be more compact.)
    • Immodium (loperamide)
    • Lomotil (diphenoxylate/atropine)
    • Octreotide
      • Is not routinely given; sometimes used for patients with high ostomy output
    • Tincture of opium
      • Is not routinely given; sometimes used for patients with high ostomy output

Aminosalicylates (5-ASAS)

  • Reduce inflammation in the lining of the digestive tract.
  • How they work:
    • Believed to locally interfere with the ability of certain white blood cells that attack first layer of digestive tract (mucosa)
    • Believed to continually inhibit the production of some pro-inflammatory molecules that circulate in the bloodstream
  • Every brand is some form of either: sulfafalazine (Azulfidine), mesalamine (Lialda, Apriso, Pentasa, and others), olsalazine (Dipentum) and balsalazide (Colazal)
  • Common forms
    • Oral: time-release and pH-sensitive properties of each medication determine when are where along the intestinal tract it’s absorbed
      • Targets jejunum, ileum and colon: Pentasa (extended release mesalamine)
      • Targets ileum and colon: Delzicol and Lialda (mesalamine)
      • Targets colon only: Azulfindine (Sulfasalazine), Colazal (balsalizide), Dipendum (olsalazine), Apriso (mesalamine)
    • Suppository: Canasa (mesalamine)
    • Enema: Rowasa (mesalamine)
  • In ulcerative colitis
    • Shown to successfully induce and maintain remission in mild to moderate UC
  • In Crohn’s disease
    • Shown to only help control mild inflammation along first mucosa lining
    • The American College of Gastroenterology (ACG) does not recommend 5ASAs for Crohn’s patients. It is only recommended in certain cases with colon inflammation only.

Corticosteroids

  • Reduce inflammation in the lining of the digestive tract and reduces diarrhea
  • How it works:
    • Interferes with cellular production of inflammatory proteins and activates anti-inflammatory proteins
    • Increases sodium and water absorption in intestinal mucosal cells
  • Common forms:
    • Oral: prednisone, prednisolone, Entocort, Uceris (both are forms of budesonide)
    • Suppository: hydrocortisone
    • Enema: cortisone
    • Rectal foam: Uceris (budesonide)
    • IV: Solumedol (methylprednisolone), Decadron (dexamethasone)
  • Approximately half of IBD patients treated with steroids will become steroid dependent or steroid resistant
  • Works fast but has a long list of side effects, often becoming a last resort
  • Cannot be stopped abruptly after extended use (patients must be slowly weaned down on progressively smaller doses)

IBD treatment: Suppressing the immune system

We’ve arrived at the heavy hitters! As we mentioned earlier, inflammatory bowel disease (IBD) is fundamentally an immune-mediated disease in which the immune system acts abnormally. Within the last three decades, researchers have developed immunomodulators and biologics to dampen the immune system’s response in IBD and other disorders.

These medications target T lymphocytes (T cells), the white blood cells at the center of autoimmunity. T cells travel throughout the body; so these medications must induce a systematic, not local, immunosuppression. That means it can affect other parts of the body as well as the GI tract. Regular blood tests are needed to check liver, kidney, and bone marrow function because they may also be affected.

Suppressing the immune system also means the body may not be able to fight infections and diseases as well as it used to. Patients on immunomodulators and/or biologics are encouraged to take steps to protect themselves including typical hygiene (washing hands), receiving flu and pneumonia vaccines, avoiding live vaccines, and limiting time with friends or family that are sick. Many IBD patients on biologics also wear a filtering mask when in environments that increase their risk for disease like hospitals and doctors offices along with crowded forms of public transportation like airports, trains, and buses.

Since there are so many cells and molecules involved in autoimmunity, here are some key players to familiarize yourself with and refer back to while diving into how various immunosuppressant medications work.

Key Vocabulary

  • Intestinal mucosa: the tissue that lines the GI tract, making it the first of four layers
    • Attacked by white blood cells in the immune reaction that is the basis of IBD
  • T lymphocyte or T cell: a type of white blood cell central to the immune response in IBD and other immune-mediated diseases
  • Antibody: proteins created by the immune system in response to foreign particles detected in the body
    • May be produced by the body or artificially
  • Cytokine: signaling proteins essential for communication between cells involved in the inflammatory response (may be pro-inflammatory or anti-inflammatory)
  • Interleukin: a class of cytokines that can regulate immune responses and T lymphocytes development
  • TNF-α (tumor necrosis factor alpha): a pro-inflammatory cytokine and central regulator of immune function that is the target for multiple biologic therapies for immune-mediated diseases
  • α4β7 integrin: a receptor on T cells that allow them to interact with other cells in the body
  •  MAdCAM-1: a protein that’s part of the inner layer of blood vessels; helps direct white blood cells into mucosal tissues during inflammation

Immunomodulators

  • Drugs that change and/or weaken the immune system to reduce the inflammatory response
  • May be used in conjunction with a biologic (“dual therapy” or “combination therapy”) to increase the chance of inducing and maintaining remission

Thiopurines

How they work: Prevent T lymphocytes activation, which prevents them from attacking the intestinal mucosa and causing inflammation

  • Azathioprine (Imuran): oral
  • 6-mercaptopurine (6-MP, Purinethol): oral
  • May take up to three months to work; patients are often on steroids until the new medication kicks in

Methotrexate: subcutaneous (SC) injections, oral

How it works: in addition to acting like thiopurines, methotrexate may also inhibit pro-inflammatory cytokines in the bloodstream

  • Traditionally used to treat rheumatoid arthritis or lupus but can be used in Crohn’s patients who have failed or become tolerant of thiopurines
  • Women of child-bearing age must use with caution due to the risk of birth defects or miscarriage
  • Hasn’t been shown to be effective in UC

Cyclosporine: oral

How it works: prevents T lymphocytes from producing cytokines or multiplying

  • Traditionally used to prevent organ transplant rejection but can be used for patients with severe UC
  • Quicker to take effect than thiopurines (about 1-2 two weeks vs. 3 months)

Tacrolimus: oral or topical

How it works: prevents T lymphocytes from making cytokines or multiplying

  • Traditionally used to prevent organ transplant rejection but can be used for patients with severe UC or fistulizing Crohn’s
  • Can be used topically for active Crohn’s disease around the mouth or perianal area and on the skin for pyoderma gangrenosum (rare condition that causes large, painful sores on the skin)

Biologics

Note: drug names end in “mab”, which stands for monoclonal antibody, thus made by identical immune cells cloned by a certain parent cell.

  • Biologics are antibodies designed to bind to and prevent inflammatory factors or other molecular targets involved in the immune response in IBD
  • Patients often have introduction period; they will first take a larger dose and/or doses more frequently and gradually extend to the typical dose/schedule we list below
  • Because antibodies are foreign proteins, the immune system may produce anti-drug antibodies against the biologic itself, causing the drug to eventually stop working
  • It is common for IBD patients to switch to another biologic after developing antibodies against the previous one

Note: Biologics first became available in the late 1990s. They are listed below in order of FDA approval (oldest to newest).

Anti-TNFs

How they work: Bind to extra TNF-α and prevents it from attacking healthy cells in the gut (see figure below)

  • Remicade (infliximab): infusion every 8 weeks, but sometimes sooner
    • FDA approved to treat Crohn’s disease and ulcerative colitis in adults & kids
    • There are currently also four “biosimilars” of infliximab, which essentially are generic forms:
      • Renflexis (infliximab-abda)34, Inflectra (infliximab-dyyb)35, IXIFI (infliximab-qbtx), and Avsola (infliximab-axxq)
      • These have not been approved to treat UC in kids
    • Also treats rheumatoid arthritis, plaque psoriasis, psoriatic arthritis, and ankylosing spondylitis
  • Humira (adalimumab): Self-given injection every 2 weeks
    • FDA approved to treat Crohn’s disease in adults & kids along with ulcerative colitis in adults
    • Has two biosimilars, essentially a generic form:
      • Amjevita (Adalimumab-atto) and Cyltezo (Adalimumab-adbm)
    • Also treats juvenile & adult rheumatoid arthritis, plaque psoriasis, psoriatic arthritis, ankylosing spondylitis, hidradenitis suppurativa, and pan-uveitis
  • Cimzia (certolizumab pegol): Self-given injection every 4 weeks
    • FDA approved to treat Crohn’s disease in adults
    • Also treats rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis
  • Simponi (golimumab): Self-given injection every 4 weeks
    • FDA approved to treat ulcerative colitis in adults
    • Also treats rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis

Excess amounts of TNF-alpha cause your immune system to attack healthy cells in the GI tract, leading to inflammation—the underlying cause of Crohn’s symptoms. © Janssen Biotech, Inc. 2017.

REMICADE® belongs to a class of biologic medications known as TNF-blockers. REMICADE® binds to TNF-alpha, blocking its action. © Janssen Biotech, Inc. 2017.

Anti-integrins

  • Two current forms with one key difference
  • Tysabri (natalizumab): infusion every 4 weeks
    • How it works:
      • Binds to the α4β7 integrin receptor on T cells to prevent T cells from interacting with MAdCAM-1, therefore preventing T cells from leaving the bloodstream to attack the intestinal mucosa
      • Also blocks T cell interaction with the VCAM-1 protein, therefore preventing it from leaving the bloodstream in other parts of the body
    • FDA approved to treat adult Crohn’s disease
    • Also treats multiple sclerosis
    • Is associated with an increased risk of a rare brain infection called progressive multifocal leukoencephalopathy (PML), especially if used with another immunosuppressant drug40
    • Used for patients who have not responded to or lost response to an anti-TNF but should not be taken with additional immunosuppressants
  • Entyvio (vedolizumab): infusion every 8 weeks
    • How it works:
      • Binds to the α4β7 integrin receptor on T cells to prevent T cells from interacting with MAdCAM-1, therefore preventing T cells from leaving the bloodstream to attack the intestinal mucosa
      • Does not affect VCAM-1, therefore, the risk of PML is very low.
    • FDA approved to treat adult Crohn’s disease and ulcerative colitis
    • The first and only current biologic that targets a “gut-focused” inflammatory pathway, used exclusively for IBD

Anti-interleukin

How it works: binds to pro-inflammatory factors IL-12 and IL-23 (interleukins) to prevent them from activating T cells

  • Stelara (ustekinumab): One-time infusion, then self-given injection every 8 weeks
    • FDA approved to treat adult Crohn’s disease and Ulcerative Colitis
    • Also treats plaque psoriasis and psoriatic arthritis

*Notes: Dosing listed is baseline guidelines for each medication following the induction stage of treatment. Based on an individual’s response, the schedule may be adjusted for more frequent dosing.*

No individual or class of biologics has been shown effective in treating most cases of IBD. It is currently unknown why a given patient will respond to one biologic and not another. Because the series of molecular interactions that lead to active IBD (the “inflammatory cascade”) is a complicated web of triggers and interactions, there are many, many potential molecular targets for new treatments. In addition to targeting pathways common to many autoimmune disorders, researchers are also attempting to develop new biologics with gut-specific mechanisms of immunosuppression, such as that of Entyvio. Medications that work this way are safer overall in that they suppress the immune system in a more local manner, making patients less susceptible to certain infections in comparison to those on older, more general immunosuppressants.

 

Small Molecules

Note: This section is an update from the original article on IBD treatment options.

  • All previously named biologics are molecules that are too large to penetrate the cell membrane and targets factors outside of the cell
  • Researchers are developing and studying the effectiveness of molecules small enough to penetrate the cell membrane and affect the inflammatory signaling cascade within the cell
  • While there are several molecules in development out there, currently, only two types of these drugs have been FDA approved: a JAK inhibitor called Tofacitinib (or Xeljanz) and S1P inhibitor called ozanimod (or Zeposia)
    • The FDA has approved these treatments only for UC at the moment

JAK Inhibitors

How they work: Inhibit one or more of the Janus kinase (JAK) enzymes to interfere with the signaling that causes inflammation 43

  • Xeljanz (toficitnib): Oral; given daily or twice a day
    • FDA approved to treat adult patients with moderate to severe ulcerative colitis after failure of anti-TNF drugs44
    • Also used to treat rheumatoid arthritis and psoriatic arthritis

S1P Inhibitors

How they works: Inhibit one or more sphingosine 1-phosphate (S1P) receptors, causing a decrease in the amount of white blood cells released by the lymph nodes.

  • Zeposia (ozanimod): Oral; given twice a day
    • FDA approved to treat adults with moderate to severe ulcerative colitis
    • Also used to treat relapsing forms for Multiple Sclerosis (MS)

WHILE WE STRONGLY ADVOCATE BEING INVOLVED IN DECISIONS REGARDING YOUR TREATMENT, MAKE SURE THAT YOU ONLY TAKE MEDICATIONS AS PRESCRIBED BY YOUR DOCTOR AND UNDER THEIR SUPERVISION.

IBD Treatment: Surgery

Many people with IBD have had some form of surgery. There are surgical treatment options for certain patients. Surgeries also occur when medications fail or their side effects become too risky. According to the Crohn’s and Colitis Foundation, approximately 23-45% of UC patients and up to 75% of Crohn’s patients eventually need surgery over the course of their disease. Many people with IBD will have more than one surgery. Surgical procedures vary greatly in duration and complexity depending on the location and extent of active disease.

Below, we describe surgical terms and anatomy along with outlining the major surgical options for the treatment of Crohn’s disease and ulcerative colitis. Some of these surgeries also treat complications from IBD.

Surgery Vocab

  • Laparoscope: a thin tube with a light and a camera on the end that is passed through small incisions (approximately 1/2 inch) in the abdomen to allow the surgeon to see and operate without creating a large incision
  • Open procedure: one long incision (approximately 4-8 inches) is made down the center of the abdomen to allow for maximum visualization and room to operate
  • General anesthesia:
    • the patient is unconscious, and therefore doesn’t feel pain or have any memory of the procedure afterwards
    • a flexible tube must be inserted down the windpipe to control breathing
    • medication may be administered via IV and/or inhaled gas
  • Monitored anesthesia care (MAC):
    • sedating drugs (i.e. propofol) are administered via IV for shorter procedures which do not require general anesthesia
    • a local anesthetic injected into the area may also be required for pain control
  • Epidural anesthesia:
    • a needle is used to insert a thin catheter between two vertebrae in the lower back
    • local anesthetics and/or narcotics are injected directly into the spinal canal (in conjunction with general anesthesia for GI surgeries)
    • may also be used for post-operative pain management
  • Anastomosis: surgical reconnection of two sections of bowel to restore a continuous GI tract after resection (when a piece of bowel is removed)
  • Ostomy: a surgical opening in the abdominal wall through which stool (for IBD cases) passes into an external appliance (bag)
    • stoma: small piece of bowel that forms the opening
    • ileostomy: stoma is made from small bowel tissue (specifically, the ileum)
    • colostomy: stoma is made from large bowel tissue (the colon)
  • Stricture: a section of bowel that has become narrowed due to scar tissue
  • Fistula: an abnormal tunnel formed between two organs
    • women can develop rectovaginal (RV) fistulas as a complication of Crohn’s disease
  • Abscess: a pocket of pus that develops as the result of an intestinal infection

The small intestine consists of three sections: the duodenum, which is connected to the stomach, the jejunum, and the ileum, which connects to the colon. The large intestine consists of the colon (which can be divided into ascending, transverse, descending, and sigmoid portions) and the rectum, which connects to the anus. Crohn’s disease most commonly affects the ileum and the colon, although it can be present in any part of the digestive tract from the mouth to the anus. Ulcerative colitis affects only the colon and rectum. Image © 1998-2018 Mayo Foundation for Medical Education and Research (MFMER).

Bowel Resection

  • A section of intestine is removed and the cut ends are reconnected (anastomosis)
  • Typically done for active Crohn’s disease, a bowel obstruction, or a fistula tract
  • Small bowel resection: anywhere from a few inches to several feet of small bowel is removed (an intact small intestine is 22-23 feet long)
  • Large bowel resection (subtotal colectomy): a portion of the colon, not including the rectum, is removed (an intact colon is 5 feet long)

Colectomy

  • Removal of the colon with the rectum left intact
  • An option if active disease has spread throughout the colon but the rectum is unaffected
  • There are two possible results
    • An ileostomy
      • Stool is passed through a surgically made stoma
    • An ileo-rectal anastomosis (IRAA) where the ileum is reconnected to the rectum
      • Liquid stool passes through anus 8-10 times a day.

Proctocolectomy

  • Removal of the entire colon and rectum
  • With end ileostomy: the terminal ileum is used to create a permanent stoma
  • With ileoanal pouch anastomosis (IPAA):
    • almost always in ulcerative colitis patients (and not Crohn’s) due to the risk of Crohn’s recurring in the pouch in the years following surgery j
    • j-pouch, s-pouch, or w-pouch
      • name indicates how many loops of bowel are used to construct the pouch
      • J shape is most common
    • the terminal ileum is folded on itself to form an internal reservoir for stool and the resulting pouch is connected to the anus
      • pouch construction may take place at the same time as the proctocolectomy or may be done in a separate surgery
      • this is largely dependent on the pre-operative health of the patient based on weight, malnutrition, immunosuppression, and steroid dependency
    • a temporary loop ileostomy is placed for 2-3 months to allow the pouch to heal
    • a reconnection surgery is then performed to “reverse” the temporary ostomy and route stool through the pouch
  • With Koch pouch (k- pouch) or Barnett Continent Intestinal Reservoir (BCIR)
    • Are not commonly performed anymore due to high risk of pouch failure
    • the terminal ileum is used to construct an internal reservoir that is attached to the abdominal wall
    • pouch is drained several times a day with a small catheter
    • an option for patients with a weak anal sphincter

Image: American Society of Colon & Rectal Surgeons

In cases of ulcerative colitis when the entirety of the colon and rectum are affected, a proctocolectomy with the construction of a j-pouch may be performed. The above image shows an intact terminal ileum, colon, and rectum.

In the first of a two-step j-pouch procedure, the colon and rectum are removed, the terminal ileum is folded to create a pouch, and a temporary loop ileostomy is placed to divert stool while the newly created pouch heals.

Two to three months later, the temporary ostomy is “reversed” and stool is diverted back down through the intestinal tract and is stored in the pouch before being eliminated via the anus. (image source: American Society of Colon and Rectal Surgeons)

Abdominoperineal Resection (APR)

  • Rectum and anus are removed, and the entire perineal area is sutured closed
  • May be done in conjunction with a colectomy
  • Done in most cases when ostomy reversal is not an option
    • this may be a separate surgery from when the ostomy is first created
  • Nicknamed “Barbie butt” surgery

Additional Procedures

  • Strictureplasty
    • a section of bowel that has narrowed as a result of scar tissue is reopened by folding it on itself and cutting a new, wider passage through the bowel
  • Fistulotomy
    • the fistula tract is opened up to the outside of the body to allow it to heal by itself from the base up
    • alternatively, a rubber band-like tube called a seton may be placed to keep the tract open and allow it to drain and heal
  • Abscess incision and drainage: the affected area is opened surgically and drained
    • alternatively, percutaneous abscess drainage can be performed
      • a catheter is placed into the abscess through a tiny incision
      • catheter remains in place for about a week while the contents of the abscess drain
  • Exam under anesthesia (EUA) with seton placement: Surgeon inspects for fistulas, drains any abscess and then may place a seton while patient is under anesthesia
    • A seton is a small plastic loop that helps a fistula heal in the right direction. They are most often in place for a few months to a year while the fistula heals.
    • Treatment option for patients with perianal Crohn’s disease

IBD and Womanhood

Being a woman can have its own problems that are only exacerbated by Inflammatory Bowel Disease and other gut issues. Here are the facts that we know about hormones, pregnancy, and other health issues women with IBD typically face.

Periods and Menstrual Cycles

There is some recent evidence confirming what many of our Girls With Guts experience: symptoms getting worse during their menstrual cycle. A cross sectional study among several researchers found about 50 percent of participating women with IBD reported that their symptoms became somewhat worse during their period. A study in 2012 by The University of Manitoba IBD Clinical and Research Centre found about 50% of participating women with IBD were likely to experience diarrhea during their period.

Doctors are looking into why this can be the case. In both of the scholarly articles above, researchers say more work is needed to find a connection. In an article in 2015, the Department of Gastroenterology/Hepatology at the Cleveland Clinic reports there is a hypothesis of a possible influence of sex hormones on the brain-gut-microbiota axis.

Sex

Many women with IBD are concerned about the impact that disease, medications, and surgery will have on their sexual health and intimacy. Unfortunately, there are several factors that can complicate sexual health for women with IBD including self-esteem and body image issues that relate to the physical changes due to having IBD. For example, prednisone-related weight changes or the presence of a recto-vaginal fistula can be both traumatic and impact self-esteem. However, even though there can be physical and emotional challenges related to sex and IBD, this does not mean that women with IBD cannot have a full and enjoyable sex life. Advocating for oneself, understanding the ways IBD impacts sex, and knowing about the available resources and treatments are critical to managing any potential problem or concern regarding sex and intimacy.

While many women with IBD do not have any sexual functioning complications from IBD, about 40-60% of women with IBD report some form of decreased sexual functioning. Some women experience significant sexual dysfunction from disease-related complications. Fistula, vaginal abscess, pelvic adhesions, bowel obstruction, pelvic surgery, and perianal stricture can severely impact female sexual functioning. In addition to these severe complications, in general, the research into sexual functioning and IBD states that anxiety, depression, fatigue, sleep disturbances, and pain are associated with a decreased interest in sex and a decreased sexual satisfaction for women with IBD, more so than the presence of ostomy or IPAA (J-Pouch).

Disease Activity

Active disease can decrease sexual interest and satisfaction for IBD patients. Thus, discussing disease state and how it impacts sexual functioning with one’s gastroenterologist is important. Additionally, depression and anxiety are key drivers of decreased sexual functioning in women with IBD; and patients with active disease are more likely to report more symptoms of anxiety and depression58. Developing and maintaining an IBD treatment plan to decrease disease activity is crucial in improving sexual functioning.

Depression and Anxiety

Treating active disease may help improve depression and anxiety. However, in addition to treating active IBD, addressing co-occurring anxiety and depression by obtaining mental health support via therapy and/or medication management may improve sexual desire. However, it is also important to note that in some instances selective serotonin reuptake inhibitors (antidepressants) can also impair sexual functioning and can contribute to orgasmic and arousal disorders.

Severe Complications: Pain, Surgery Complications, Pelvic Floor Involvement.

The pelvic floor muscles play a role in sexual functioning as well as bowel and bladder control. IBD symptoms of diarrhea, urgency, perianal pain, abdominal or pelvic pain, and draining can result in the pelvic floor muscles contracting as a protection method that can negatively impact sexual functioning. In other instances, pelvic surgery can create adhesions or scar tissue that results in pelvic floor muscle dysfunction. Surgery can also result in injury to the sympathetic or parasympathetic nerve. For instance, after the creation of IPAA (J-Pouch), the risk of a sympathetic nerve injury resulting in decreased vaginal lubrication and dyspareunia (painful intercourse) may be as high as 38%. For women with proctocolectomy and ileostomy, 12% had painful intercourse before surgery, with 27% reporting the symptom post-surgery.

Treating sexual functioning symptoms such as increased vaginal dryness with lubrication and decreasing pain during intercourse via treatments such as pelvic floor physical therapy may improve sexual satisfaction, which may positively impact overall satisfaction. In addition to pelvic floor physical therapy, which is a treatment to manage pelvic floor muscle dysfunction, some patients may also find a referral to a urogynecologist or mental health provider critical to managing the physical and emotional symptoms of impaired sexual functioning.

Self-Image and Sexual Functioning

Studies have shown that about 75% of women with IBD and 81% of female IBD patients who have had surgery report issues with their body image60. Body image issues that can negatively impact sexual satisfaction seem to be affected by physical changes due to surgery, active disease symptoms, and the use of steroid medication61. Peer support and mental health referrals may improve impaired self-esteem and result in increased sexual functioning.

Vaginal Crohn’s Disease

A rare and underrecognized condition, Crohn’s disease of the vulva can occur in some women. Crohn’s disease of the vulva can result in lesions and inflammation. Discussing any vaginal symptoms with one’s medical team and controlling vulvar inflammation is important to decrease sexual functioning complications. In the presence of Crohn’s disease of the vulva, limiting surgical management of the disease is essential to preserve sexual functioning.

Medication Side Effects

Some medications are known to decrease sexual desire. For example, narcotics may decrease sexual desire and orgasm. In other instances, like steroids, side effects such as acne, weight gain, and increased facial hair can further negatively harm self-esteem and decrease sexual desire. Discussing sexual functioning concerns as they relate to medication management may help one’s physician to develop a treatment plan with medication that does not negatively affect one’s sexual health.

Receptive Anal Intercourse (RAI) Considerations

Women with IBD who engage in RAI (anal sex) may be at greater risk for STIs, anal dysplasia (abnormal cells within a tissue or organ), and intraepithelial neoplasia (abnormal cells on or in tissue that lines an organ).

STI

There is a greater risk of STIs (sexually transmitted infections) potentially due to inflammation compromising the integrity of the anorectal tissue63. It is important to discuss with one’s gastroenterologist or other medical providers anal sex because IBD and STI-related inflammation are often indistinguishable. Rectal STI testing may be necessary to determine the cause of inflammation.

Anal Dysplasia

An additional concern related to IBD and anal sex is an increased risk of anal dysplasia (pre-cancerous cells). Not only does anal sex increase the risk for anal dysplasia, so too does immunosuppression. Despite both anal sex and immunosuppression increasing the risk for anal dysplasia, there is not much research out there about anal dysplasia, anal sex, and women with IBD. However, prior research regarding cervical dysplasia shows that women with IBD have a higher rate of abnormal PAP smears. There is also an increased chance with those patients undergoing immunosuppressive therapies. Therefore, some researchers hypothesize that there is an increased risk for anal dysplasia. While there are no specific recommendations related to screening for anal dysplasia, anal pap smears may be warranted for women with HIV-positive status, history of cervical or vulvar cancer, or other risk factors. Therefore, it is crucial for women who engage in anal sex to discuss these risks with their providers. Anal Sex Practices and IBD Some women who engage in anal sex use hygiene practices such as douching, laxative cleaners, or lubrication. While there are limited studies, they have shown that some practices such as using tap water or soap suds can damage the lining of the rectum. Thus, there is a theoretical possibility that these practices can trigger an IBD flare.

General Guidance

There have not been many studies on anal sex and IBD. Therefore, recommendations are not necessarily evidence based. However, the research to date suggests one should avoid anal sex while there is active inflammation or during a flare. Additionally, for those with IPAA (J-Pouch), the suture lines must heal before attempting anal sex, and adequate lubrication is encouraged. Due to some conflicting information regarding lubrication and the impact it can have on the lining of the rectum, it is generally preferred that IBD patients use silicone-based or water-based lubricants without using douching or enemas.

STD Prevention and Birth Control Considerations
Women with IBD are sometimes concerned about choosing a form of contraception that is effective and safe for them. While oral contraceptive pills are the most prescribed birth control option in the United States, for women with IBD, they may not be the best option67. Women with IBD have an increased chance of deep vein thrombosis and pulmonary embolism, which is also a risk of oral contraception. In addition to these risks, oral contraception is absorbed primarily in the small bowel. Some women with Crohn’s have significant small bowel involvement or resection that may result in absorption issues. In addition to absorption, the relationships between oral contraceptives, IBD, and bone loss can be a concern for some women.

More concern about bone density and contraception is the relationship between the injection Depot medroxyprogesterone acetate (aka Depo-Provera or “depo shot”) and bone loss. Therefore, for women with IBD who have osteoporosis or other bone density concerns, the depo shot may not be the best option. In contrast to oral contraceptives and the depo shot, longer-term contraception like the IUD and implants are generally recommended for women with IBD.

Menstruation and Birth Control

In addition to preventing unintended pregnancy, some women with IBD have found that contraceptives can decrease cyclical IBD symptoms related to menstruation. Menstruation has been determined to be linked to increasing IBD symptoms such as diarrhea and abdominal pain. In general, Crohn’s disease patients tend to have more menstruation-related impacts than ulcerative colitis patients. One study determined that there was a reported 19% symptomatic improvement of these symptoms for women on estrogen-based contraception. For those with levonorgestrel IUDs, there was a 47% reported symptom improvement.

Pregnancy

Girls With Guts partnered with AGA and other organizations to create the IBD Parenthood Project, a website dedicated to answering questions and providing guidance on how to best care for women with IBD and are pregnant or are considering pregnancy. You can find more information at: www.ibdparenthoodproject.gastro.org/

Fertility

Many women worry about IBD and pregnancy, but the good news is that Crohn’s disease and UC alone do not appear to affect fertility. You are more likely to become pregnant and have a normal pregnancy if you are in remission. The American Gastroenterological Association (AGA) says it is ideal for a woman to be in remission for at least three months before trying to conceive.

However, IBD-related surgeries can create adhesions and other scar tissue that may interfere. Researchers are also looking into possible links between IBD and endometriosis, which can affect fertility.

Family Planning

Since there is a genetic component to IBD, some women worry about their children inheriting their IBD. While research has found that there is some risk, The Crohn’s and Colitis Foundation found that the risk of a child inheriting a form of IBD from one parent is 2-9%. If both parents have it, that risk can be as high as 36%.

The key for a healthy pregnancy is being in remission and staying in remission. That involves planning and having in-depth discussions with your medical team. As mentioned above, the American Gastroenterological Association recommends a woman be in remission for at least three months before trying to conceive. If a woman is in remission, she is likely to stay in remission while pregnant but it’s not guaranteed. You will want to discuss a treatment plan with your GI, OBGYN, and possible MFM (maternal-fetal medicine specialist or sometimes called high risk OBGYN). Below we will go through IBD treatments considered safe for pregnancy and breastfeeding. It is important to remember that in most situations, your medication is safer than having a flare while pregnant.

It is important for women with IBD considering pregnancy to stay on their medicines. A review by the World Journal of Gastrointestinal Pharmacology and Therapeutics found that The United States Food and Drug Administration (FDA) deemed almost every IBD-related drug safe for use during pregnancy and breastfeeding except methotrexate. Researchers have been reviewing IBD medications and their effects on pregnancy and breastfeeding for years. Two well-known sources include the PIANO Study and MotherToBaby. Both are frequently updating findings and invite IBD patients that are pregnant to join their studies.

The PIANO Study has found biologics to be safe to use during pregnancy but certain dosing schedules may need to be adjusted. Here’s a summary of findings found by the PIANO Study, MotherToBaby, and the Austrian Societies of Gastroenterology and Hepatology and Rheumatology and Rehabilitation:

  • Anti-TNF-α antibody therapy (Remicade, Humira, and Simponi):
    • Category B, meaning no evidence so far of malformity
    • Being the oldest of treatments, Remicade has been thoroughly studied
    • Dosing schedule may need to be adjusted but treatment should continue
    • Minimal amounts have been found in breastmilk
    • It is recommended that infants do not receive live vaccines (Rotavirus) for six months after birth
  • Cimza:
    • Category B, meaning no evidence so far of malformity
    • Safe for breastfeeding
    • This drug does not cross the placenta barrier
  • Stelara
    • MotherToBaby states early studies have not found an increased risk of birth defects or miscarriage
  • Entyvio
    • The PIANO Study has found Entyvio to be safe during pregnancy
    • MotherToBaby states Entyvio has not been studied for breastfeeding but that it is unlikely much of the medication passes into breast milk

MotherToBaby has recently published that, Tofacitinib (Xeljanz) has not been well studied yet for pregnancy or breastfeeding. In reports of women exposed to Tofacitnib, there has been no reported increased risk of miscarriage or birth defects. Early reports recommend waiting 18-36 hours from the last dose before breastfeeding.

Delivery/Postpartum

Delivery and the postpartum period can be tumultuous times for mothers with IBD. If you’re a new mom, there will be several challenges you likely don’t know. Vaginal delivery is safe for most women, even with IBD and/or a pouch. Generally, women with fistulas, abscesses, or other issues around the vagina and/or rectum should consider a cesarean delivery. While it is possible to have a vaginal birth with an ostomy, there is an increased risk you will need to have a cesarean delivery. It is important to go over one’s specific delivery options with their doctor.

Researchers have found moms with IBD tend to go into labor sooner than the typical 40 weeks and that babies tend to be smaller, but still healthy.

The postpartum period can be a difficult time for new moms. Your body is healing and you are at risk for postpartum depression and/or anxiety. Depending on which type of delivery, new moms will have additional challenges using the bathroom while adjusting to a new baby. In addition, considering theories linking hormones with worsening IBD symptoms, all of these factors can lead to a flare. It’s estimated a third of mothers with IBD will experience a flare after delivery. It is important to stay in touch with doctors (both GI and OBGYN) during this time and we highly suggest planning out a strong support system before delivery to ensure a happy and healthy mom and baby.

Breastfeeding

As mentioned above, there is an intense physical healing process in postpartum period. Whether it is a vaginal or cesarean birth, mothers will likely have stitches that demand hygienic care along with losing some amounts of blood. Within the first six weeks, the uterus will constrict and cramp frequently to reduce from the size of a watermelon to a plum! If you choose to breastfeed, this can make contractions more frequent81- which may lead to more bathroom visits, which means more hygienic care, which means more time on the toilet. However, some research has shown breastfeeding can reduce the risk of a flare.

For breastfeeding, a review by the World Journal of Gastrointestinal Pharmacology and Therapeutics found that The United States Food and Drug Administration (FDA) deemed almost every IBD-related drug safe for use during pregnancy and breastfeeding except methotrexate. You should talk with a lactation consultant or your baby’s pediatrician about breastfeeding while taking your medication for IBD.

Most biologics either don’t show up in breastmilk or have appeared in low levels. Within a sub-study within the PIANO Study, researchers found no increased risk of infection and no delay in developmental milestone achievements.

There has not been much data collected yet for small molecules and breastfeeding. MotherToBaby states Early reports on Tofacitinib (Xeljanz) recommend waiting 18-36 hours from the last dose before breastfeeding.

You can also review medications through the LactMed database.

Fistulas

One of the most painful and perhaps sensitive complications within IBD patients (for men and women) is fistulae. A fistula is an abnormal connection or passageway that connects two organs or vessels that do not usually connect. They can develop anywhere between an intestine and the skin, between the vagina and the rectum, and other places. The most common location for a fistula is around the anus.

The symptoms for a fistula can vary and largely depend on the location and size of the tract itself.

Some common symptoms include:

  • Burning
  • Passage of stool and/or gas
  • Redness
  • Inflammation and swelling
  • Frequent UTIs
  • Joint pain

Fistulae can occur in a multitude of ways, but one of the most common occurrences is as a complication of Crohn’s disease. Fistulae are not a typical complication in patients with ulcerative colitis.

There are multiple types of fistulae, including:

  • Enterocutaneous: tries to connect the intestine to the skin. These may be a complication from surgery. It can be described as a passageway that progresses from the intestine to the surgery site and then to the skin.
  • Enteroenteric or Enterocolic: involves the large or small intestine.
  • Enterovaginal: an abnormal connection that develops between intestine & vaginal wall.
  • Enterovesicular: travels to the bladder. These fistulas may result in frequent urinary tract infections or the passage of gas from the urethra during urination.

There are a few ways to diagnose a fistula. Generally pain, air, or stool is an indicator that you may have a fistula. But, because the location and size can vary – these symptoms may not occur at first or at all.

Some of the testing to find the location and size of a fistula tract can include:88

  • Blue dye test
    • This involves placing a tampon into your vagina, then injecting blue dye into your rectum. Blue staining on the tampon indicates an Enterovaginal fistula.
  • CT scan
    • CT scans of your abdomen & pelvis provide more detail than a standard X-ray.
  • MRI
    • MRI’s can show the location of a fistula.
  • Barium enema
    • A vaginogram or a barium enema can help identify a fistula located in the upper rectum. These tests use a contrast material to show the vagina or the bowel on an X-ray image.
  • EUA
    • Sometimes your doctor or surgeon may want a closer look by doing an exam under anesthesia.
  • Rectal Ultrasound
    • A small probe, called a transducer, is passed through the anus and into the rectum and ultrasound is used to identify perianal fistulas.

Treatment for a fistula can vary and generally include a combination medication (see our medication section) and the treatments below.

  • Non-invasive Treatment
    • Fistula Plug Repair.
      • This repair is where a surgeon inserts a cone shaped device made out of biomaterial that is supposed to heal and graft to your body through the fistula tract and sutures it in place.
    • Fibrin glue
      • A specific medicinal adhesive used to seal fistulas.
  • Surgery
    • Surgical mesh
      • Much like repairing a hernia with mesh, the same technique can be used to repair some fistula tracts.
    • Seton drains
      • A seton is a thin, small rubber band that is looped through a fistula tract and tied at the end. This allows stool and air to pass through and to help avoid abscesses from forming.
      • While it cannot heal fully this way for Enterovaginal fistula, it can help shrink the tract and prevent infection.
    • Advanced flap repair
      • A flap repair is where the surgeon takes out the fistula tract and stitches the tract back down.
    • Graciloplasty
      • A graciloplasty repair is where a piece of your gracilis muscle from your thigh is removed and laid in between the bowel and the vagina to create a wall.

Fistulae can be extremely painful and affect all facets of womanhood from body image to sexual dysfunction and everywhere in between. Fistulae can also severely affect a patient’s mental health. In some cases, fistulae can return, which leaves most people to fear the pain and trauma that comes along with them, even after they heal or are repaired. In some cases, they remain a chronic source of infection.

Advocating for your Health

IBD patients quickly learn they have to be the strongest advocate for their health. From getting second opinions, to researching treatment, to having their pain taken seriously, many of our Girls With Guts have tackled road blocks on the path to their best IBD life.

Getting the right medical team is crucial to your health. You need a gastroenterologist (GI) specialized in IBD and a General Practitioner (GP)/Primary Care Physician (PCP) you can have authentic conversations with at times. You may also need a Obstetrician and Gynecologist (OBGYN) or Maternal Fetal Medicine (MFM) Specialist, GI Surgeon, Registered Dietitian Nutritionist (RDN), Therapist/Counselor/Psychologist/Psychiatrist/Social Worker, Pain Management Specialist, or Wound Ostomy Continence Nurse (WOC Nurse). The care you receive normally, much less in an emergency, heavily relies on the relationships you create with your medical team.

Don’t be afraid to seek a second opinion. Patients deserve a doctor that takes their pain, questions, and concerns seriously. IBD and the impact of IBD-related surgeries is different between women and men and you deserve a doctor that understands that.

Women with IBD also struggle with the cultural differences and expectations between genders. In general, we often grapple with body image and healthy relationships- then you add IBD and/or an ostomy to it! Some cultures even see women with this disease as unloveable/untouchable.

IBD is a chronic illness, which is often called an invisible disease or disability because your symptoms are not as apparent. People often don’t see the pain, nausea, weakness, and other effects of IBD and/or an ostomy. And since there is no cure, you have to find a way to live with those effects. With the pressure to be strong yet beautiful, many patients “wear a mask” and pretend the disease doesn’t bother them.

A key component to Girls With Guts is building supportive relationships that encourage positive self-worth, self-esteem, and confidence. As women, we often take care of our family and home (a job in itself) while trying to build a career to live a fulfilling life. When you add IBD you still do all that PLUS advocate for your health (visiting doctors, battling insurance, managing medications) much less handle the actual pain and effects of the disease.

Resources

Where should I turn for help and advice?

Being diagnosed with inflammatory bowel disease or having an ostomy can be overwhelming, but you’re not alone. Girls With Guts has been empowering girls and women with IBD for years through a network of physicians, patients, and services.

GWG "I Gotta Go" Cards

When urgency hits, you should have access to a bathroom. In several states, businesses must allow you to use an employee-only bathroom for medical emergencies. We offer free “I Gotta Go” medical cards for emergency restroom access in the US and Canada. You can email info@girlswithguts.org and we’ll send you one! You can also see if your state has a restroom access law by going to: www.crohnscolitisfoundation.org/get-involved/be-an-advocate/restroom-access

BUTT BASKET PROGRAM

GWG offers a basket full of goodies to help you or your loved one make it through their IBD-related surgery or to keep in their car for post-surgery accidents. We also offer infusion kits that bring comfort to women starting their treatment with a biologic.

GWG Community

We welcome you or a caregiver to join our ever-growing sisterhood of gals with IBD and/or an ostomy!

  • We have a very active, private Facebook Forum where you can laugh, learn, and love with other GWG members.
  • We also offer a Love Your Guts Mail program for a gal that needs some extra encouragement
  • Every year, we hold two retreats: one for veteran members and one for women who haven’t been to a retreat yet. This allows you to meet GWG members you connected with on social media and make new friends on the way!

GWG POOP Program

We work with two organizations that collect and distribute ostomy supplies to those in need. Our Philanthropic Ostomy Outreach Program (affectionately named POOP Program) allows women to pay it forward and donate to someone who can’t afford much-needed ostomy supplies. We are happy to be working with Kindred Box and Friends of Ostomates Worldwide- USA to help ostomates in the U.S. and around the world.

The Fine Print

Material Medically Reviewed by:

Robin L Dalal MD, is an Assistant Professor of Medicine at Vanderbilt University Medical Center in Nashville, TN. She earned her BS from the University of Georgia and her MD from the Medical College of Georgia in Augusta, GA. Dr Dalal completed her internship, residency, chief residency, and gastroenterology and hepatology fellowship at Vanderbilt University Medical Center in Nashville, TN. Her research interests include quality of care and psychosocial care in inflammatory bowel disease (IBD). She is a member of the American Gastroenterological Association, the America College of Gastroenterology, and the Crohn’s and Colitis Foundation of America.

 

Conflict of Interest Statement

The Girls With Guts IBD Academy is partially funded by a grant from Genentech, Inc., a member of the Roche Group, along with a sponsorship from Takeda Pharmaceuticals. Girls With Guts has received funding from Academy of Continual Healthcare Learning, pharmaceuticals Arena, Eli Lilly, Genentech, and Takeda, and companies Hollister Inc., Drip Drop Hydration Inc., and Calmoseptine, and medical marketing research companies M3 Global Research and Rare Patient Voice.

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