I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Glossary of Terms


(Diagram courtesy of Midlands Technical College.)


  Terms within the definitions below that are defined elsewhere in the glossary appear in italics. 

Adhesion - A location where tissues and/or organs have grown together where they are not supposed to, which can potentially lead to serious complications.  This is usually due to excessive scar tissue, which means increased number of surgeries or an inexperienced surgeon can increase risk of adhesions.

Anastamosis - Surgically attaching two parts together through either hand-sewn or stapling techniques.  In this case it usually refers to the method used to construct the j-pouch and attach it to the rectal cuff and anal canal.

Anus - The opening at the end of the digestive tract through which digested food waste exits.

Anal canal - The last small channel through which the digested food waste travels (after/below the rectum or j-pouch) before exiting the body through the anus.

Ascending colon - The first part of the colon, which travels from the lower right corner of your abdomen (where it connects from the small intestine) up almost to your rib-cage and connects with the transverse colon.

BM - Bowel movement.

BRAT diet - Bananas, rice, applesauce, toast.  Refers to a diet of these specific slowing foods but can also include bread, pasta, and other white carbs or bulking foods known to slow the bowel.

Butt burn - The pain and intense burning sensation of the skin around the anus from the irritation that is caused by the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery.

C. diff - Clostridium difficile.  A type of intestinal bacteria, an overgrowth of which can cause severe diarrhea.  It is the most common cause of both hospital-related and antibiotic-related diarrhea.

Colectomy - Complete surgical removal of the colon (majority of the large intestine).

Colitis - Inflammation of the colon and/or other parts of the large intestine.  May include but does not necessarily refer to ulcerative colitis.

Colon - The largest part of the large intestine, located between the small intestine and the rectum.  It's main job is to absorb fluids from the digested food waste that passes into it from the small intestine before the waste continues on and passes into the rectum for storage.

Continence - The ability to control your bowel movements and urinary function.  In other words, the ability to keep from peeing or pooping your pants.

Convex - Describes an inwardly-curved, cup-like shape.  (Used when referring to a type of barrier baseplate of an ostomy bag system.)

Crohn's Disease - A disease of the small and large intestine that causes inflammation and bleeding ulcers that cover the intestinal wall.  Hallmark symptoms are abdominal pain/cramping, diarrhea, bloody or black/tarry stool, nausea, weight-loss.  It is a chronic disease with no cure; even surgical options are limited.  The main differences between Crohn's and ulcerative colitis are that Crohn's affects both the small and large intestines and can appear in intermittent patches, whereas ulcerative colitis only affects the large intestine and almost always appears in a continuous pattern starting from the bottom and progressing upwards.

Descending colon - The second-to-last section of colon, which runs from the upper left area of your abdomen under your rib-cage down to the bottom left corner of your abdomen; it connects the transverse colon to the sigmoid colon.

End-ileostomy - When the end of the small intestine is used to create the stoma in an ileostomy procedure.  The opening in an end-ileosotomy is more centered; it sticks out a little further and is more stable, making it easier to care for and maintain than a loop-ileostomy.

Fissure - A tear in bodily tissue, in this case usually referring to the skin around the anus.

Fistula - When a hole or passageway forms between two body parts that should not be connected.  It can sometimes happen between the vagina and the j-pouch, causing fluids from one area to drain into the other.

Flange - The part of the barrier baseplate (wafer) of a two-piece ostomy bag system that sticks out and provides a secure connection point for the bag to attach to.  (Though many people use the terms flange and wafer interchangeably.)

GI - Refers to either the term"gastrointestinal" (as in gastrointestinal tract, a.k.a. digestive tract) or more commonly among GI patients, it can refer to the term "gastroenterologist," a medical doctor specializing in the gastrointestinal tract.

IBD - Inflammatory bowel disease, which includes inflammatory diseases of the large and small intestine, mainly ulcerative colitis and Crohn's disease.  (Not to be confused with IBS, irritable bowel syndrome, an annoying and sometimes painful but ultimately harmless condition.)  

Ileo - Short for ileostomy.

Ileoanal Pouch - See j-pouch.

Ileostomy - A surgical procedure in which a part of the lower small intestine (ileum) is brought through the abdominal wall and sewn in place on the tummy to create a stoma for the elimination of digested food waste.

Ileum - The lowest part of the small intestine.

Ileus - A blockage of the intestinal tract with absence of physical obstruction due to lack of propulsive action of the bowels.  It results in constipation, bloating/distention, abdominal pain, nausea, and vomiting.
Incontinence - The inability to control bowel movements and/or urinary function.  In other words, the inability to keep from peeing or pooping your pants.

IPAA = Ileal pouch anal anastamosis, a.k.a. J-pouch surgery.  ("Ileal pouch" refers to the j-pouch, and "anastamosis" refers to the process of attaching the j-pouch to the anal canal.)

(Diagram courtesy of Eyvazzadeh & Reily Colon and Rectal Center.)
J-pouch - A surgical procedure in which the surgeon takes two lengths of small intestine side-by-side (shaped like a "J") and sews them together to create a larger storage area, or pouch (technically called ileoanal pouch).  This is then attached to the anal canal in order to allow elimination of bodily waste through the anus.  It is meant to replace the rectum and colon after a proctocolectomy and is the most common surgical treatment option for severe ulcerative colitis.  (See diagram.)

Kegels - An exercise to improve the strength of the pelvic floor muscles, which include the sphincter, which control continence.  To perform a kegel, you flex/squeeze the same muscles you would use to hold in a bowel movement or stop urination mid-stream.  Hold for ten seconds and then relax for ten seconds, to be done in sets of ten.  Five to ten sets a day are sometimes recommended to help improve continence.

Loop-ileostomy - When a loop of small intestine is brought through the abdominal wall to create the stoma in an ileostomy procedure.  They are meant to be temporary, to be reversed at a later date.  A loop-ileostomy actually has two holes (one for digested waste to come out, and the other that leads back down to either a colon or a constructed j-pouch).  The opening in a loop-ileostomy is located towards the bottom of the stoma and points downward, and the stoma tends to retract flat against the tummy frequently, causing a loop-ileostomy to be more difficult to care for and maintain than an end-ileostomy.  Also sometimes called a temporary diverting ileostomy.

Low-residue diet - In theory, it is a diet in which a maximum amount of ingested food is absorbed and used by the body, producing as little waste as possible.  In reality, the medical professionals are usually referring to the avoidance of foods that are more difficult to digest and therefore could cause intestinal blockages, which includes anything hard, fibrous, or anything containing a visible husk or membrane.  This means limited or no fresh fruits or whole veggies; no seeds, nuts, whole grains, coconut, pineapple, mushrooms, tough meats, popcorn, etc.

One-piece ostomy bag - An ostomy bag system in which the bag and barrier baseplate are manufactured together as one piece and cannot be removed separately.  The entire system needs to be detached from the ostomate's tummy in order to change the bag.  (As opposed to a two-piece ostomy bag.)

Ostomate - A person living with an ostomy.

Ostomy - An artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)

Output - Bodily waste that comes out of an ostomy.

Pancolitis - Colitis (almost always ulcerative colitis) that reaches to all parts of the large intestine, which is around five feet long.

Pelvic floor exercises - See kegels.

Pouchitis - Inflammation of the j-pouch, usually due to an overgrowth of bacteria and easily treatable with a round of antibiotics.  Rarely it can become chronic, but this is often due to an misdiagnosed case of Crohn's disease instead of ulcerative colitis.

Proctectomy - Complete surgical removal of the rectum.

Proctosigmoiditis - Inflammation of the rectum and sigmoid area (bottom part) of the colon.  This is the type of ulcerative colitis I was diagnosed with for fifteen years before it spread to pancolitis.

Proctitis - Inflammation of the rectum.

Proctocolectomy - Complete surgical removal of both the colon and rectum (entire large intestine).

Rectum - The lowest part of the large intestine where food is stored as it waits for elimination through the anus.

Rectal cuff - The tiny amount of rectum left in tact above the anal canal to which the j-pouch is attached.

Resection - Usually refers to the removal of only part of the large or small intestine and sewing the remaining pieces back together.  (Commonly performed as a treatment for severe Crohn's disease cases, but almost never performed as a treatment for ulcerative colitis.)

Reversal - A surgical process in which an ostomy is reversed.

Sigmoid colon - The very lowest part of the colon, which runs from the bottom left corner of your abdomen to the bottom center of your abdomen and connects the descending colon to the rectum.

Sphincter - The muscles surrounding the anus that close off the anal opening in order to retain digested food waste in the rectum and anal canal until an appropriate time for elimination.  Sphincter muscles are important for continence and can be strengthened via pelvic floor exercises (a.k.a. kegels).

Spoons - How much energy or time a patient of crhonic illness has before s/he hits a "wall" and cannot do anything else for the rest of the day.  The term comes from an article called "The Spoon Theory" that explains very clearly how difficult it is to live with chronic illness.  The article has therefore become prevalent in the subculture of people with chronic illness.

Spoonie - A person who suffers from debilitating chronic illness.  The term comes from an article called "The Spoon Theory" that explains very clearly how difficult it is to live with chronic illness.  The article has therefore become prevalent in the subculture of people with chronic illness.

Stella - The name of my stoma.  Ostomates often name their stomas because they wiggle, move around, make noise, and spit out waste of their own accord, with no control from the patient, which makes it seem like they have a personality.  Different people's stomas are known to behave differently.

Stoma - An artificial opening created in the body through a surgical procedure.

Stricture - A narrowing of a canal in the body.  In this case it would refer to a narrowing of an area within the small intestine.

Transverse colon - The second part of the colon, which runs from right to left under your rib-cage; it connects the ascending colon to the descending colon.

Tail - The skinnier, bottom part of an ostomy bag where output drains from when emptying.

Takedown - A surgical procedure in which the temporary ileostomy is reversed and the j-pouch is hooked up for use.

Two-piece ostomy bag - An ostomy bag system in which the bag and barrier baseplate are two separate pieces that attach together: the bag, and the wafer (or flange).  The bag can be detached and changed without removing the wafer from the ostomate's tummy.  (As opposed to a one-piece ostomy bag.)

UC - ulcerative colitis.

Ulcer - An open sore.

Ulcerative colitis - A disease of the large intestine that causes inflammation and tiny bleeding ulcers that cover the intestinal wall.  Hallmark symptoms are abdominal pain/cramping, bloody stool or passing of blood, diarrhea, and passing of mucous.  Symptoms can range from mild to severe (15-20+ bowel movements a day).  It is a chronic disease that has no cure aside from surgical removal of the large intestine.  The main differences between Crohn's and ulcerative colitis are that Crohn's affects both the small and large intestines and can appear in intermittent patches, whereas ulcerative colitis only affects the large intestine and almost always appears in a continuous pattern starting from the bottom and progressing upwards.

Wafer - The adhesive barrier baseplate of a two-piece ostomy bag system that is sticks to the patient's tummy and forms a seal around the stoma.  It protects the skin from waste and provides a place for the bag to attach to.  (Though many people use the terms wafer and flange interchangeably.)

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