It is hard to believe that is has been a little over a year since I had my ileostomy surgery. Looking back that was such a hard decision to make and go through. I remember going to meet with my surgeon and hearing that an ileostomy was basically my last option surgically next to a transplant which wasn't possible at that time. With the frequency of the clean outs combined with the large amount of medications needed, I was basically headed towards the end of a cliff. Something would eventually have to be done; I couldn't continue to live how I was currently living at the time. The downfall to having the ileostomy surgery was my gastroparesis and decreased motility in my intestines due to the paralysis was that there would be no knowing as to if the surgery would work. Sitting in that surgical consultation, the room was honestly spinning. I knew years before that my GP would affect me in greater ways but I never expected to be hearing news such as this. I had just gone in for another colectomy. I just wanted to have the remaining eight inches of my colon removed and have my small intestines connected to my rectum or even have a J-Pouch created. I was not ready for this. Ostomies were unattractive, foreign and just scary to me.
Over the next couple of weeks, I struggled with finding peace about having the surgery. How would I personally deal with living with an ostomy? How would my life change? How would I look? How would other people perceive me? It was one of the hardest times in my life. When making the decision to have my colectomy, I immediately had a peace about the surgery but I didn't have a peace about this. Finally, finally, I had a peace about this surgery. I realized that it wouldn't change who I am. I would still be the same person; I would just have an ostomy bag attached to my side. Since then, I have actually grown a bit as a person. Going through that whole experience made me stronger and less worrisome about others opinions.
Along the way, I have encountered some negative comments about my ostomy and how I dress which I suppose is just par for the course. Just like in life, with any disease, you have to grow "thicker skin" which isn't always easy and can take quite some time. You just have to look the other way and just things go. When I was being fitted for my ostomy, they explained that I would live in athletic wear because it would be the only thing that was comfortable. They weren't kidding. Jeans, khakis, dress pants are all painful for me now. Because I am a short person and have much of a waist, so there isn't a lot of room so when I sit down. My clothing bunches up under my ostomy and causes pain and can eventually result in havoc in the end. It simply isn't worth it most times. Athletic pants fit right because I can adjust them and they are soft. I live in loose t-shirts or sweatshirts because they are long enough to cover my ostomy (I don't tuck my ostomy into my pants) and they allow room for bloating which is a multiple times a day occurrence with my GP. Originally my plan was to tuck my ostomy into my pants or wear a wrap. I have invested hundreds of dollars into custom wraps tailored to fit me but they are so uncomfortable for me personally and I find them to be bulky. They eventually end up irritating my skin from pushing my output up under the ostomy wafer so I just leave my ostomy bag out under a camisole. The downfall is that it is more visible but it saves my skin and is ten times easier not to mention more comfortable. I have received comments that I need to dress better and more appropriate. Ostomies are offensive. It isn't true. A lot of comments come from just being uneducated about a topic and simply not knowing. When I first saw my first ostomy, it scared me. Everyone copes and deals with things differently in their own ways.
Today I am completely happy and content with my ileostomy. My original plan was to leave the ostomy in place for a year to hopefully get a break from the clean outs and have it reversed in the spring of 2014. However the surgery wasn't successful and I only had a month break from cleaning out. Do I still want to reverse my ostomy? NO! It drives me crazy some days and gets in my way but it truly saved my life by buying me sometime. It actually has some perks.
As for my GP, the past month of so, I have just been all over the place. I'm being scheduled for another endoscopy with Botox. My weight has continued to stay at eighty-five pounds. I have been eating as much as I can but I just can't seem to gain any. My neurologist mentioned that since the last time she saw me right after our wedding, I was only down several pounds so she wouldn't fuss at me (my neurologist is such a cool doctor). I was sitting there thinking oh my gosh, my ostomy bag was almost full when they weighed me. She would have got me about my weight if it would have been empty. I truly got away by the skin of my teeth.
I finally called my surgeon last week after having some bleeding after a colon spasm. During the past couple of months, the spasms have become more frequent and more painful not to nauseating. After talking with my surgeon, he explained that I basically had colitis in my remaining colon. My colon was inflammation and irritation. How did this happen when I don't even use the organ?! He called in a prescription for several enemas (Oh what fun this will be considering I thought this door was closed in my life, no more enemas. I suppose I was wrong.) that would help relieve the inflammation and irritation. The issue lies in my pelvic floor muscles. They weren't worth much when I used them due to my pelvic floor dysfunction. I have hardly used them in over a year and we all know the story about how muscles become when you don't use them. This should be an experience to say the least; I'm not looking forward to it. If the enemas don't do "their job", we're going to go down that road and remove the rest of my colon. My surgeon explained that normally it was a harder surgery but since I have already had a colectomy and ileostomy, he could do it robotically so it wouldn't be as hard. I've been giving it some thought and I am going to tough it out for as long as I can before undergoing another surgery.