My Story

  I am a proud mom to my teenage son and our ten year old dog, Spot. I’m sharing my story to the public because my surgeries were not due to irritable bowel disease or cancer as most who have an ostomy. When I was searching for information and stories of others with my conditions I was not able to find much other than a few medical articles. I am here to help and support others with an ostomy for any reason, but I’m hoping to also reach out to those with my conditions. I suffered years of constipation and abdominal pain plus bloating beginning in my early twenties which increased to the point I sought medical help after my son was born, age 23. I will first explain the diagnoses and procedures I had in those early years thinking it would rid all my issues, then how I progressed to getting my intestinal disorder diagnoses and treatments. At age 23 I found out through my pap smear that I had high grade cervical dysplasia and had a LEEP, where they removed a chunk of my cervix that was very close to being cancerous. I thought maybe that’s where my abdominal pain was coming from, but my symptoms persisted. Two years later, I was finally referred to a gastroenterologist who was reluctant to send me for testing because these tests are expensive and I was young and appeared healthy (a vegetarian runner since the age of 16); also I did not have insurance at this time. I was able to persuade him, after multiple visits and failed medications (was said to have gastritis, acid reflux, IBS… I was a young new mother, afterall, so it must’ve been stress related right?). This gastroenterologist sent me for an abdominal untrasound and the results came back with sludge in my gallbladder. Next step was a HIDA nuclear medicine study in which the tech injects a medication that makes the gallbladder contract then injects radioactive tracers that highlight the gallbladder and scans the organ while it’s contracting to measure it’s function. Well it turned out my gallbladder was functioning at only 25% of what it should have been; I had my gallbladder removed the next day. After this surgery the bloat and constipation did not subside and I was (mis)diagnosed with IBS-C as that is something that can happen after gallbladder removal surgery, though that IBS is usually the diahrrea subtype, not the constipation I had been suffering. I was told to drink more water, eat more fiber, take fiber supplements, take laxatives….nothing was really working and who wants a laxative addiction? Later, my gynecologist sent me for an ultrasound to rule out ovarian cysts and endometriosis because of the abdominal pain and bloating, just to find that my colon was dilated and barely moving, in the words of my Dr, “your colon is trying to contract and you are very constipated; your colon looks like that of an 80 year old’s.” Basically I was told, again, to go home and take laxatives. I was 26 years old, healthy weight and active so it couldn’t have been serious. I tried eating more fiber, drinking more water, taking different types of fiber supplements, the IBS diets of soluble fiber only, the FODMAP diet, juice detoxes, cleanses, IBS medication, probiotics, prebiotics, eating more yogurt and kefir, running more….you name it, I tried it and always had to resort to stimulant laxatives. As the years went on, the regular laxative doses didn’t work and I had to take large doses to get things moving but to do that I had to be tethered to a bathroom because it was either take so many laxatives to force it out completely with diarrhea or take less and just get completely bloated with increased pain. Well with a young child, active lifestyle and full-time job (I was divorced at age 26 and by the time it got this bad I was in my early thirties), also I went back to school as I wanted a career switch from dental assisting to radiologic technology. My life was too busy and hectic, I couldn’t be tethered to the bathroom. This was when I started using over the counter enemas, around age 34, which provided more relief and was quicker, more convenient. Got to the point was having to do at least two of these daily and I became underweight due to restricting my food to avoid the pain, bloat, distention and constipation best I could. In May of 2015 I landed in the hospital ER from severe abdominal pain and was hospitalized for five days. I had become so constipated and my colon so dilated that the ascending colon had perforated which caused a slow leak of air and fluid into my peritoneal cavity. Had I waited longer I probably would have become septic, which is a very dangerous infection. Thinking I would need surgery that night, I was life-linked to the main hospital, as the smaller one I went to did not have a colorectal surgeon on site. Luckily I did not need surgery yet, the perforation was very small and able to be managed with five days of IV fluids, many bags of antibiotics and npo status (nothing by mouth) then liquids only. The next step before going home was to clean my colon, but the laxatives and enemas they had been trying all week did not work at all so I was given a gallon of GoLytely to drink which cleared me enough to get discharged. After this hospitalization I was seeing the colorectal surgeon outpatient, and this was what finally gave me some answers. I was 35 years old at this time and just started my second semester of radiology school, first year student. First I had the sitz marker test, where I had to swallow a pill filled with 25 opaque markers, or tiny white rings, that show up on x ray and measure colon transit time. I had to get an abdominal x ray daily for a week and could not use laxatives or enemas as this would give false results. After five days all the markers were still scattered in my upper colon, therefore having almost no motility, I was finally diagnosed with colonic inertia and was recommended a subtotal colectomy to remove 90% of my colon and staple the remaining sigmoid colon to the ileum of my small bowel (ileo-sigmoid anastomosis) and, therefore, not needing a stoma bag. I was sent to a university hospital to see a surgeon for a second oppinion. He sent me for defecography which showed that I had a rectocele (rectum was prolapsed into the back wall of my vagina), but since I was able to defecate the contrast he said the rectocele wouldn’t be an issue and this surgery has a very high success rate. Let me fast forward and summarize the next five years because this is already a very long story. Still having pain and issues after recovering from this surgery I was found to have a complete pelvic prolapse and had a hysterectomy with repairs of the bladder, urethra and rectum, plus abdominal adhesion were removed. This was another big surgery just six months after my colectomy. I thought it would be the end of my problems, I was finally fixed after all! I was better for about another six months to a year and put weight back on and was happy, but things were slowly going downhill again. I tried to manage my pain and symptoms for the next four years best I could to no avail. I was getting worse, to the point of doing several enemas a day. I purchased a resuable enema bag because those little over the counter fleets were not cutting it and having to use so many was getting expensive. This helped as I was able to use a lot of warm water in one go which would flush things out better. But it still was not complete and the pain after eating was getting incapacitating, I was having a lot of rectal bleeding, large hemmoroids and even small fissures from the amount of straining I had to use just for a little relief. It was awful and I started restricting my food again; mostly living on smoothies, protein drinks and one meal a day while I was home so I could get enema relief. I worked a demanding x ray job in hospital, long night shifts and resorted to either not eating at all or just a little fruit to keep me going. I often had to leave work early due to the pain and bleeding. I knew I needed help and went back to a GI surgeon at the university hospital. After extensive testing I found out that I had another large rectocele due to the straining, but why did I have this recurrence? It turns out I have pelvic floor dyssynergia that causes outlet obstructions. My anal sphincters were not working correctly and my pelvic floor muscles were not coordinated as they should have been. With this diagnosis, and my debilitating symptoms and failure of meds, an ileostomy was recommended. But before this drastic surgery, there was one more thing to try, something that works for maybe 40-60% of people with this disorder and that is pelvic floor PT with biofeedback therapy. With renewed hope I eagerly found a therapist and began PT the following week. Unfortunately it did not work and was becoming increasingly frustrating.