Hi Fellow Ostomates!
New to this site and never was ever on another.
My story:
I was diagnosed with Diverticulitis on January 29, 2011, in the ER. I was admitted and heard the dreadful news, which I thought was just a stomach infection. I was living in Florida on the beach and loved my job. I was very active in swimming, tanning, and taking long walks on the beach every chance I got. That's when my NIGHTMARE began! I didn't even know what the word meant about this dreadful disease until a loving and caring Colon and Rectal Surgeon explained it all. From then on, I continued with infections and hospitalizations, in which I had to be dying first before I admitted myself again and always left the hospital early against my Surgeon's wishes. My weight plummeted from 120 to 89 lbs., being on a strict diet of liquids, baby food, and graduated to mashed potatoes. I had Cat Scans and Colonoscopies galore, about 200 plus when not infected due to perforation of the colon if I was infected. Finally, in August, my Surgeon scheduled a resection for July 29, 2011, exactly 7 months later. I took my vacation from work for 2 months, and my son flew down to see me (daughter lives in FL). I still to this day don't know how I then was back on liquids and beached every day with my son, fished, and enjoyed my vacation with him, and we were very active every day, but it really sucked when I had to make him dinner or go out with him and not eat at all, something I love to do very much. I looked like a skeleton but a very tan one :) I tried putting a meal in the blender once, and it sucked and threw it up, so that was it for me. My Surgeon scared the hell out of me, saying if I eat, my colon could perforate and be in serious trouble. I just couldn't wait to get this "Monster" out of me! I thought after the surgery I was cured, only to wake up 4 weeks later with a 105 fever and extreme pain in my right side, and I knew this was completely different, so back to the hospital again and now diagnosed with Colitis! Now with both diseases, I continued to have flare-ups and was hospitalized about every other month! I felt my life was over, being constantly sick all the time! In the meantime, my daughter became pregnant with my first granddaughter, so I tried to spend as much time with her and my son-in-law as possible and was there for the birth. I was so happy but so sick of my life! I was missing out on so much by working all the time, now taking on a second job because I was becoming broke due to all the time I had to take off of work, but every chance I got, I spent with my children and granddaughter. I did finally in October meet the man of my dreams and was there for me every step of the way, then asked me to move in with him, and I did. Life was then looking up for me, and he has a heart of gold and told me to quit my jobs so that I could spend quality time with him and my children, so I did. So now having free time on my hand, I started YouTubing on Colostomies every day and read inspirational stories on how people got their life back, never being sick again. My Surgeon was totally against this and thought I was crazy and wanted me to see a psychiatrist, but I didn't. She told me "this was not for me!" SHE WAS SO RIGHT! She knew my heart, soul, and body very well, and we had an extremely close relationship. I hit rock bottom on my granddaughter's 3rd birthday in April 2014 while at her party with a ton of people. I had to go to the bathroom and felt the "Monster" acting up again. My granddaughter came in with me to use the same bathroom as well, and as smart as she is, she knew I was getting sick again! I was so depressed at the time because I had lost 7 immediate family members within a year and was unable to attend any funerals due to being sick or in the hospital; the day of my granddaughter's party was my sister's funeral who lived in NJ and died on her birthday of skin cancer at 40, which she battled for 18 years! I had to say goodbye to her on a ventilator over the phone days before. I felt death all around me, and I thought in my heart I would be next! I was back in the hospital the next day with both disease flare-ups and extremely sick, but I still checked myself out early. That is when I decided to have a Colostomy, even against my Surgeon's wishes (she wanted to perform another resection). I was adamant about this surgery and having the whole entire "MONSTER REMOVED AND GONE"! So that being said, it was scheduled for June 20, 2014. Prior to that, on my 50th birthday, instead of celebrating, I was being slashed open for a lump on my chest to test for Melanoma (I felt my sister telling me to go), but luckily it was basal cell, and my stitches were left in until the day of my surgery. On June 19th, I knew it was my last fast, and the purple stuff in a bottle would be gone forever! Upon arriving at the hospital on 6/20, my Surgeon came out to meet me at 5 a.m. and told me she was way behind in schedule; I was to be the first to be operated on, and I couldn't understand why she was saying this and told me to go home and reschedule for the next day, or it would not happen until that evening. I was dumbfounded and knew it was her way of saying she didn't want to perform this robotic surgery on me. She always operated on her worst patient first, which was always me! I told her I wanted it done today, and I didn't care about the time, so I waited and waited until finally, they took me in at 4 p.m., and by 11 p.m., my Coco was born; I named her prior to surgery. I was supposed to be in the hospital for 7-10 days but checked myself out even with 2 major blood transfusions 2 1/2 days later only to comply with home health. I had a complete colostomy with only 2 inches of my bowel left, so it is an ileostomy as well. My Nightmare began the following day at home alone and in pain with a huge hernia. I decided to take a shower before the nurse got there and managed to do so and rinsed out my pouch in the shower, put makeup on, and got dressed by myself but then fell on the floor and busted my stitches and sutures around my stoma. I pulled myself up with my walker and got back into bed. When the nurse came, I got scolded, and she contacted my Surgeon and told her what had happened; I wasn't supposed to shower for about 10 days but never listened to anyone. My Surgeon told her this was me, and I always did what I wanted, and that was no surprise to her! Since everything was wet and bloody, my nurse had to remove my pouch and my gauze sites on my stomach and my shield of armor that covered my whole entire chest and stomach. The days that followed and continued on, I was busting 2-5 times per day and shitting up everything in the bedroom and bathroom. I couldn't control my ostomy, and neither could my nurses, trying different pouch systems, and nothing was working! I didn't like any of them! My head ostomy nurse of 35 years even duct-taped my pouch around my whole abdomen, yes, duct tape. I looked like a package and was extremely in pain and uncomfortable. I thought to myself, this is it, I had enough, and they are not helping me, so I fired them all! I started researching different pouches and ordered and sampled on my own. I was told to wear the barrier ring, 4x4 sheet that I had to cut, my pouch, my belt, and sleep on plastic and wear saran wrap around me! I was devastated and once again felt my life was over, and I should have listened to my Dr. I even missed my first post-op appt. because I just busted prior to leaving the house. This continued on and on, and in August, I told my Surgeon I wanted it reversed, and she said she knew it! She scheduled the reversal, but with me not eating, too afraid, she canceled it and told me to get stronger and gain weight. To make a long story short, which I know my story isn't short :) my reversal was canceled 13 times in 2 years, always something wrong, and finally was scheduled again a few months later, but she told me to really think this one out, that this Surgery would consist of her using her hands, not robotic, due to my size, and then telling me I would need rehab for about 2 months and then home health and possibly diarrhea for about 6 months with only 2 inches of my bowel left. I am also extremely anemic, so she stated even with my hematologist there, if my bleeding was uncontrolled, she would stop the surgery, and I could wake up with another stoma! That is if Coco was put back already. I didn't care but was worried about the bleeding and long recovery, but it was better than shitting all over the place, even in public busting! A few days prior to reversal, my Grandmother was sick (the only family I had left besides my children) and asked that I come get her in PA. She knew about my surgery and wanted to come live with us for a while in FL, but she didn't quite understand the outcome and that I could not care for her, so she said she would get home health and be with us, so I agreed. I booked my flight and was still on schedule. Then 2 days before my reversal, my Surgeon's secretary called me and stated my PCP did not do my bloodwork or EKG nor chest x-ray, and I said what now???? I had just seen him 3 days ago, more negligence! The only option I had was to find a place ASAP to do these tests, and I would be on. So I did and called my PCP for a fax, and his secretary stated that my surgeon needed to do this; they went back and forth arguing about my situation because this could have been done in his office! Finally, my surgery was postponed for one week due to the fault of my PCP, and I was pissed! I was now thinking it is not meant to be and that Coco will be with me for life! In my heart, my grandmother was more important to me, and my cancellations have been going on now forever, it seemed, so I decided to keep her, that God was telling me something, and I should not do this! So here I am today, still seeking help, asking questions but still having problems, not with busting, but it is hard when the stool is thick and then urine-like, then chunks coming into my pouch. By the way, I did have a blockage last September and was literally pulling stool from my tiny stoma and massive bleeding in my pouch, so had to be hospitalized for irrigation and then changed pouch systems again and again! My boyfriend moved to New York a year ago in May to help his Mom and Dad, who are up there in age, in his hometown he grew up in. I did not go because my daughter and granddaughter were in FL, and son in PA, who flew down frequently. He had his whole family here; mine was not, and I had a hard time with this, but finally, I decided to make a fresh start and move here with him; that was 2 months ago. My ex-husband lives in PA, so my daughter, son-in-law, and granddaughter visit up here a few times a year to see her Dad. I sold everything except personal items and clothes and left; my daughter understood, but my granddaughter took it really hard. I miss my children so much and feel lost here without them. My boyfriend works, so I am "Home alone lost in New York"! I am really glad to get out of the intense heat of FL as I have not swam since my colostomy, something I miss so much. I also put on 20 lbs. with my boyfriend spoiling me with eating out and great home dinners, so I am having another huge problem with self-image, can't apply my pouch without a mirror, and pooping in the shower. I change my pouch every day, so my skin stays clean; had topical dermatitis in the past as well. I have become a social outcast and don't want to leave the house. In my non-ostomy-friendly bathroom now, I am experiencing extreme difficulty without any counter space and look like I am 5 months pregnant! I am depressed and need any help you have out there! I have major anxiety with the shower and am on medication and vitamins, so I feel like I constantly round the clock 24/7 have an infant to take care of. I am obsessed with Coco in keeping her clean and even flush her with bottled water every day. I really need "my life back again"! I miss my Surgeon so much; she still does not know I have moved here permanently; that call will be hard to make as I am her oldest patient! I did go to a WOCNP here just because I felt Coco is not the same, and she stated she is a beautiful little thing as I have heard in the past so many times, but to me, she is a royal pain in my ass and am tired of it all! I keep stopping her and starting her all day long and looking at her with my now transparent pouch that I have had for almost a year, so I can see what she is doing! My clothes do not fit anymore, so I stay around the house in a tank top but covers her. I REALLY WANT TO BE RESILIENT AND GO ON WITH MY LIFE AND NOT HAVE TO WORRY OR OBSESS OVER A STOMA AND AM SO TIRED OF READING SUCCESS STORIES IN WHICH I WANT TO BE ONE!
THANK YOU FOR ALL WHO HAS READ MY STORY AND YES I HAVE BEEN OR I FEEL THROUGH IT ALL EVEN THOUGH IT'S ONLY BEEN 3 YEARS SO "LET'S TALK"
