More in depth of my story
Do you want to know a little more background of my story?
I was diagnosed with Crohn’s in the early 1990’s at the age of 15-- that is "diagnosed," but I was suffering from it since I was around 10 years old. At that time, I didn’t fit the profile of what doctors thought was the typical Crohn’s disease patient: middle-aged and of Jewish descent. So that gives you an idea of the environment at the time I was first dealing with my issues. Medicine has come a long way, and so have I.
I survived managing the teen years through high school and going away to college, although it came with a lifestyle of fear--fear of not being close enough to a bathroom, which limited many activities I would participate in. I had the normal Crohn’s roller coaster like bouts, remission and flares coming and going. Nothing like dating for the first time, trying to explain why I was running to the bathroom, which was evident given the nerves of a teenager and then the embarrassing explanations of, "Why?" and "What's wrong?"
After all of that, I was eventually fortunate enough to start a great career in the finance industry, meet and marry the man of my dreams, get pregnant and have a beautiful baby girl.
Unfortunately, it was the flare after having my “miracle” child that caused utter havoc on my body and set into motion the worst Crohn’s flare I would have yet to experience. After many drugs and months of issues, I was finally admitted into the hospital, days after my daughter turned 1 year old. At first, I was sure it was going to be a typical stay: one week in the hospital filled with prednisone and other IV drugs. However, this time was different. This time nothing worked. After two weeks of not responding to anything, it was finally determined that I may need surgery. I had avoided this for so long that I never let myself believe this day would come. But here I was.
Aside from the surgery planning, by this point my body was so weak after close to a year of fighting that I needed to get stabilized. A few medical twists that just added to the severity of the situation were being diagnosed with a pulmonary embolism (PE) and deep vein thrombosis (DVT). Both are blood clots, one in my lung and more in my arms, from the central lines and feeding tubes. I was put on blood thinners to treat the clots and it made the fact that I was bleeding inside even worse. I would go to the bathroom and blood just poured out. As one doctor told me, “You are a sinking ship. On one hand, we’re trying to save your life from the clots and on the other we are trying to get you ready for surgery." After many blood transfusions and waiting for TPN (nutrition in IV form) to help me get stable, the decision was made to go ahead with surgery one Saturday morning at 7 a.m. Given the clots, preparing for surgery meant going off of blood thinners days before and needing to have a temporary vena cava filter placed in my chest to protect me from the clots. All of these complications just added to the fear of surgery.
The whole experience before surgery was surreal: marking the stoma spot on my belly, looking at ostomy bags and wafers, firing endless questions of how to do ordinary things at the ostomy nurses who came into my room. I wanted to wrap my head around the concept of having my intestines hanging out on my stomach in a knot! My husband and I made jokes about the bag and we attempted to prepare for the surgery that would be freeing me from my chains of this endless flare up. I wanted to get home, back to my life again and back to my baby, Anna, whom my heart ached being away from.
After surgery I remember waking up and looking down wanting to know and feel what it was like. I had a friend bring some mirrors to show me since I couldn’t sit up yet. Truth be told, I was totally overwhelmed by it, the stoma, the whole new way of life to which I was going to have to adjust. I watched the nurses empty and change the bag, and I remember during the whole time thinking, ” How am I going to do this?” Everyone just looked at me smiling saying, “You’ll be able to do this, no problem.” I just smiled back, getting more scared as the days passed knowing I would be going home and doing this all by myself.
Another turn of events caused me to hang out in the hospital a little longer than expected. My body was so weak and was shutting down in response to all the pain medication. They also discovered an abscess that burst, causing a major infection in my body. As I was getting discharged, I started to not feel well and began throwing up green stuff, which I later became familiar with. IT was the sign that I had an ileus (intestinal obstruction). More tests, drugs, blood transfusions, and days led to my final discharge. A six-week hospital stay was enough for anyone to go crazy. I was ready to go home.
Going home had its challenges. One was realizing I was not able to do ordinary things alone like hold my child, take a shower, and get dressed, just to name a few. The most traumatizing of them all was the fact that I was alone with my ostomy. But there was an angel through all of this: an ostomy nurse from the hospital who lived nearby offered to stop in and check on me and, more importantly, taught me how to take care of my ostomy and myself again. I will be forever grateful to her for her care and time she spent with me during those tough first weeks. Over time I learned how to do things on my own, proud to finally do it and be okay. I was able to act like a mom again and take care of my daughter. My husband was slowly getting out of crisis mode and our lives were slowly starting to go back to "normal."
Of course, using the word “normal” to describe life after an ostomy seems a little out of place. Every day, I faced a new challenge such as learning what I could and couldn’t eat. I was told at the hospital, “Go home and eat whatever you want!” Then I learned the hard way three weeks after surgery when eating grilled asparagus sent me back to the hospital with another ileus. Luckily it cleared up within 24 hours, and I was able to go home again. But by this time, the fear of eating was ever greater. I slowly began to learn about what I could eat and spent many months with a medical nutritionist to start to get healthy and gain back the 50 lbs that I had lost over the course of the previous 4 months.
Once I got under control the nitty-gritty details of how to take care of myself and my stoma, I started to feel better physically than I had for years. It was liberating not to have to plan my entire world around toilet sightings. I was determined to feel as good mentally about having a stoma as I felt physically.
My first obsession came with clothing and being able to wear what I used to (or as close to it as possible) without worrying about seeing the bag. This underwear helped me feel like my old self again. I stopped wearing the baggy pants and long t-shirts, and started putting my more tapered clothing on that I had before surgery. It felt so good to be wearing things that I felt pretty in again. The underwear helped me conceal it so well that I wasn’t self-conscious about it anymore.
Next was bathing suit hunting! As a woman, bathing suit shopping was not the most enjoyable activity, but now add to that a bag and stoma you want to hide! After a few stores I was able to find a line of bathing suits that were high enough to cover my entire appliance and had a skirt over it to hide the bump. I was thrilled and started jumping up and down in the store with excitement. Beach and pools, here I come! I was so thrilled that I would be able to take my daughter back to our mommy and me swimming lessons again. My life was trickling back to where I was before the sickness, but without pain and worry.
I work very hard at taking care of myself through nutrition, acupuncture and exercise. I hope to offer sections of this blog that will give more specific advice on supplements that may help you and things to try. Overall, it’s best to say to listen to your body and allow it time to heal after such an invasive surgery. Being patient and doing things that help you heal yourself will make you feel better. Make taking care of yourself a priority and part of your lifestyle. Not just for a few months after surgery, but make it a life-long commitment.
Hopefully over time I can help others by reading this and making them know that they are not alone, that someone feels what they feel and that it does get better over time. Feel free to post any questions or messages that you would like to share. I would like for this to serve as a place for people to be able to help each other and share their tips on living a better life with an ostomy.
