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!

Humor, Medicine, Running, and SeaWorld

When I entered the family room, I nodded my head and raised my hand with anticipation of praise as I announced, "Thank you, thank you! I trimmed my own toenails." My dad smiled wide with pride and told me to get a sticker for my sticker book. Being an adult is hard.

In regards to my health, I don't feel qualified to make treatment decisions. The doctor tells me a list of options and then tells me to choose. In the moment, I may think I made a solid decision. However, after pondering my selection, I wonder what the hell I'm doing?  When did a biological medicine being infused into my vein become the best choice?  According to my nurse advocate, my insurance approved Remicade, but my co-pay is really high (she didn't tell me the amount of the co-pay). She will be mailing me paperwork for Remistart, which is a patient rebate program to help with co-pays. Eligible patients only pay $5.00 per infusion. I went ahead and scheduled my loading doses for May 3rd, May 17th, and June 14th. After the loading doses, infusions will be scheduled every eight weeks. The bad news is that the infusions take two and half to three hours and my nurse advocate only administers infusions Tuesday mornings or Friday mornings at her office in Ocoee, which is nowhere close to Sanford where I work. That means more time I have to "waste" taking off of work for my health.  I'm going to be lucky if I have enough time off left in November for the NYC marathon. Anyways, when I made the appointments, I didn't know where Ocoee was located. I'm going to call her tomorrow to see if I can request a location closer to Sanford. Either way, I'm going to have to talk to my supervisor to let her know I'll be needing more time off.  Hopefully, she'll still be understanding. If I do keep my Remicade infusion appointment on May 3rd, I will not have to do any more Cimzia injections.

My colorectal specialist told me to take two weeks to recover from what ended up not being as serious as we thought going into it. Technically, I should probably wait until my follow up appointment on the 29th or call her office to get approval to start exercising again. But you know me, I do what I want. I walked two miles on Monday to prove to concerned family members I really am ready to get moving again. On Tuesday, I ran one mile with my sister, Kelly, and then we walked another two miles. It felt good. I'm a little sore, but I'm excited to start training again.

My company is hosting a picnic for Employee Appreciation at SeaWorld this Saturday. I was allowed to RSVP for myself and one guest, so Taylor is coming into town to be my guest. After the picnic at Sea Harbor Pavilion, my company paid for everyone's ticket into the park. Bonus: For only $20 I can update the ticket to a fun card for the rest of the year! They've already distributed the free parking ticket. I'm excited because I haven't been to SeaWorld in forever!

Crohn's Sucks

Excuse me while I wallow in self pity. I went to my colorectal specialist today. The pain from my abscess is pretty much non-existent. It's only tender to touch directly.  I dropped my pants and my doctor poked around with her finger finding the abscess. The abscess was tender to her touch, but I didn't feel the pain I felt on Thursday when my gastro touched it. The colorectal moved her finger to another spot that I didn't realize was tender as well. She pointed out that it was a fistula.  She asked a few questions about possible side effects, which I hadn't experienced. That's when she said something like: For your bottom being such a disaster, you sure don't show a lot of symptoms. Even my doctor thinks my ass is a disaster. lol

According to the American Society of Colon and Rectal Surgeons, "An anal fistula (also commonly called fistula-in-ano) is frequently the result of a previous or current anal abscess. This occurs in up to 50% of patients with abscesses."

Apparently, even though the antibiotics are healing the abscess, the fistula makes it extremely likely for the abscess to return after my round of antibiotics are complete. My colorectal doctor was very concerned and recommended that I schedule surgery for next week. Next week, I will have my first Crohn's related surgery. She will be opening up the fistula and possibly the abscess to put a drainage seton in place to open it up so that it can drain and heal. She will also be flexing my stricture in hopes to being able to perform a sigmoidoscopy and she will be surgically removing a skin tag by my anus. She said recovery is one to two weeks. I'm so thankful that my supervisor at work has been understanding throughout all of this and told me today that "my health comes first" when I apologized for having to take off four days next week.

I feel like this song 'We Don't Have to Dance' by Andy, the lead singer of the Black Veil Brides band was written about my relationship with Crohn's.