12 Years Ago…..
~ I began my battle with Crohn’s Disease, a chronic inflammatory bowel disease that affects the lining of the digestive tract and so much more in the process. I was introduced to this diagnosis, playing catch up, with my already “flared-up” immune system. As I mentioned in my last blog, “Suffering in Silence”, this went on for about 3 years before I knew I even had Crohn’s Disease, I just knew something wasn’t right. And…When you feel that, go with your Gut Warriors! Keep asking questions and Keep Fighting for your Health. At this point in my life I had already undergone multiple surgeries, I&D’s to relieve pain and inflammation from re-occurring abscesses. I was in my early 20’s feeling completely drained, no energy, skin rashes, gastro issues, low grade fevers, joint & hip pain, night sweats, headaches, light sensitivity, and anemia. I felt as if it all hit me at once and at the same time. In the early stage of my diagnosis, my primary doctor and dermatologist from the area tried various combinations of drugs such as: antibiotics, anti-inflammatories & anti-fungal medications, while my gastro was trying low dose steroids initially, along with antibiotic ointments and lab draws routinely monitored.
~ After months of no success, my doctor finally introduced Prednisone (steroid med), to help in addition to my regimen in order to gain some control over this flared up disease. It did help initially and I was glad to feel a little better, but looking back in hindsight I realize this was simply masking the problem, subsiding the inflammation to get through to the next day. Putting a bandaid on it sort a speak! And, as much as we know this, it’s what us patient’s who deal with chronic illness go through at times, in order to balance, function, and get through our day. So…I went along with the ride, trying to figure out the right combination, along with my doctors, to just feel like a “Normal” woman in her 20’s might. While, all along my disease was becoming more & more aggressive, and symptoms harder to manage on my own. My local doctor who realized my care was becoming more complex, ultimately decided it was time to refer me out to Stanford Hospital & Clinics for Colorectal Surgery. It was here I spent a lot of my 20’s hoping for some relief, recovering from surgeries, one after another.
~ It was 2006 & Stanford Hospital was becoming like a home away from home, every 2-3 months like clock work, another surgery another hospital stay, 9 total in 2006 alone! My complex condition, involving multiple autoimmune diseases made things very difficult for my team of doctors & colorectal surgeons, who were all just trying to keep me out of the hospital. At this time doctors were focused on treating the complications of my various illnesses, such as Abscesses and Fistulas being formed and introduced the idea of placing these Seton’s or (C-Tons) inside my Fistulas connecting between the Fistula and connecting muscle involved. This sounded so scary at the time and Yes, I “Googled” it…but I was also extremely tired of always being in the hospital, had done my research and was ready to try another surgical option at this point other than the usual. I decided to go ahead with the surgery and went home from the hospital the next day with a Seton placement, which meant this ring-like plastic is placed inside the Fistula to keep the tract open and allow for drainage. What is a Fistula? It’s a tunnel that forms from an anal gland that exits on the skin, this is almost always related to an abscess and can form in patients with or without Crohn’s Disease. Seton’s are placed and intended for patients with difficult Fistulas and used to aid in the healing of Fistulas, the abnormal connection between two organs or vessels.
~ Waking up the next day, I was in excruciating pain, like I’ve never experienced before! I felt as if the Seton was placed very tight and felt a lot of pressure and throbbing at the site. Going to the bathroom was like someone was poking me with a knife in my rectum if you can imagine that! The days got easier, my Seton adjusted to my body in a way, feeling less pressure and pain as the weeks passed. And during this time I was living in the bath tub soaking my body and taking full cyst baths 2-3 X’s a day (Which I still do just not as frequent, in order to manage my illness).
~ Baby wipes, stool softeners, ton’s of 4×4 gauze, and loose clothes were a definite must! I went through days & nights in Sooooo Much Pain!!! I regretted the surgery initially, but as time passed things did get easier, and the Seton placement did keep me out of the hospital for some time as I learned to adjust to what was my new Norm. The Seton was left in place for several years, and during that time I began to somewhat get my life back. I enrolled back in school, working towards my Nursing Degree and little by little began feeling better. However, as the stress in my life increased, so did the flare-up’s with my disease and I learned that a new Fistula had formed in a different location and this Seton was no longer doing the trick. After almost going Sepsis and ending up in ICU at Stanford, I underwent another surgery this time a major Fistula Repair and cleaning out the whole area involved. Hindsight is 20/20, and now I’ve learned that having a Seton is not a complete fix. In order for these to work property, you need to constantly be having them checked (maintenance as I call it), at least every 6 months as these adjust to your body & your fistulas heal or become worse, they may need to adjust them and replace them with a new Seton or go in and clean out that area completely. So I was sent home discouraged, with a new surgical site to care for and having to drop out of school for the semester, until I could get this bad flare up under control. After meeting with my Gastroenterologist, he agreed that I was now at the point of needing stronger medication since my current regimen was not working and introduced me to Remicade, a TNF Blocker (tumor necrosis factor), administered via IV, every 4 weeks. Remicade, a biologic drug, used to treat moderate to severe Crohn’s Disease is a Chemotherapy, initially used to treat CANCER and was Now my Only Option!
(Can’t wait to share my Remicade Up’s & Downs in my next Blog Post).
👊🏼KEEP FIGHTING WARRIORS!!!👊🏼 #LiveWithGuts