Progress

On January 15th, I had my post-op follow-up appointments at the Cleveland Clinic. Before my appointment with my surgeon, I had a gastro-graphic enema. During the procedure, they put a considerable amount of liquid contrast up my butt (my original butt) as they took x-rays of my intestines. They warned me that the contrast would cause discomfort and pain, but I felt okay during the procedure while I was on the table. Afterwards, they pulled the tube out of my butt and helped me off the x-ray table. Some of the contrast had leaked out of my butt onto the table causing the paper to stick to my ass when I stood up. I waddled to the bathroom connected to the x-ray room with the paper stuck to my butt. Once I peeled the paper off and put it in the trash, I sat on the toilet to let some of the contrast out of my bowel. I was in such a hurry to get out of there that I put my pants on backwards when I got dressed. It wasn't until I was in the chick-fil-a parking lot struggling to put my phone in my pocket that I realized I had put my pants on wrong. The contrast left over in my bowel caused multiple sensations of and actual uncontrollable bowel movements. It wasn't regular shit coming out of my butt. Rather, it was a combination of mucus and contrast.

At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry.  She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.

The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?

At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.

Scarlett

The anticipation of surgery is over. The results are in and it turned out better than expected. It wasn't an open surgery, it was laparoscopic. The ileostomy is not permanent, it's temporary and it will hopefully be taken down by early March. I went back to work on January 3, 2018 after being off for only five weeks. Since being discharged from the hospital, the pain has been manageable without pain meds. Everything seemed to fall into place and the best case scenarios prevailed. Even though things have been going better than expected, it doesn't mean that it's been easy.

It's common among ostomates to name the ostomy, also known as a stoma. After many suggestions and much consideration, I named mine Scarlett. She's my second butt, my front butt. She's an asshole. I love that her name has a double "t" like the word "butt". My stoma is a red-ish color and once it's reversed it will leave a scar. Scarlett is not well behaved. She farts and shits at will. Is it okay that I don't like her?

People told me that an ostomy would give me my life back; however, I don't think my life was far enough gone for me to have the same sentiment. Yes, Scarlett is serving her purpose for me to get back to normal one day. I don't see it happening while she's functioning as my second asshole though. If Scarlett was permanent, how would my future look? Right now, I'm just waiting for her to leave so that I can move on with my life.

I have this unexplained, constant fear.  I bring spare clothes with me to leave in the car wherever I go in case she leaks. I carry spare ostomy supplies with me in my purse and I keep spare supplies at work in case the unimaginable happens. What if she leaks? Will I figure out how to minimize the mess and patch the leak? Or, will I have to change the whole fucking thing while she's still shitting? I am still abiding by the dietary restrictions. The fear of a blockage and subsequent emergency surgery has been instilled in me. Is everyone looking at my stomach? Can they see the bag filling with shit through my shirt? Shut up, Scarlett, we are not making friends today. I don't want to go anywhere. I don't want to do anything.

I change my ostomy appliance every three days. Scarlett is supposed to be less active in the morning, but she shits whenever she wants. The changes are the hardest when Scarlett is constantly shitting during the change. I use adhesive remover to remove the bag and clean off the leftover adhesive residue from my skin around the stoma. I use wet paper towels soaked in baby soap to clean the stoma and surrounding skin and I follow that by wiping it down with wet paper towels to remove any soap left behind.  At first, I would measure my stoma and then cut the barrier opening of the two piece appliance at this point.

Barrier Opening. I cut in between the 1" and 1 1/4". This

is the side that sticks to the barrier ring and my skin.

Barrier Opening. This is the side Scarlett peeks through

on and also the side the two piece drainable pouch

connects to.

Now that I know the size of my stoma is slightly over one inch, I cut the barrier opening before removing the bag because Scarlett is an asshole and she can't be trusted in the open. I use skin protective spray and wipes on my skin around Scarlett and as it dries I make sure the barrier opening is cut to the right size making necessary minor adjustments. Next, I open the ring barrier protector (super sticky ring shaped thing that goes around my stoma first), cut it, and stretch it so that it will fit around my stoma. 

Ring Barrier Protector. This is the first thing that

goes on my skin around my stoma.

Cutting it was not advised by most of my nurses, but it allows me to get a perfect fit around my stoma by overlapping a bit of it. Otherwise, it's easy to overstretch the ring and then it won't fit correctly. I do make sure to overlap it at the top and not the bottom since shit is not immune to gravity. I figured if the overlap crack is at the top it will be less likely to leak.  Once the ring barrier protector is around the stoma, I put the barrier opening of the two piece appliance on top by peeling a few layers to reveal the adhesive and putting Scarlett through the hole I previously cut.

After the barrier opening is in place, I connect the drainable pouch. The plastic ring on the bag (drainable pouch) in the picture to the left connects to the barrier opening. The bottom of the bag is rolled up three times and held in place with Velcro as shown in the photo on the right. Once the bag fills with shit, I use the Velcro opening to empty it into the toilet (more on that in an upcoming post). The bags the hospital provided were clear. I hated being able to see my shit through the bag, so I'm glad my prescription bags are opaque. An ostomy is actually considered to be a prosthetic.

Once the bag is off, it's difficult to keep the area clean and dry while doing all of the steps above at the same time Scarlett is shitting. Some changes are harder than others. I am getting better at handling it each time. I recently discovered that Huggies Wipes are amazing when it comes to keeping it clean during high output change days.

My belly definitely looks different than it did before. It's been tough, but I've been tougher!