I was at a wedding and the wife of a friend approached me. She said that she had Ulcerative Colitis (UC) too. She told me that her husband read the article I wrote about having Ulcerative Colitis. It helped him empathize with what she was going through. (this article is going to be slightly graphic)
It’s difficult having UC or any type of disability. It doesn’t just take a toll on your mind and body, but it affects your relationships with others. During the hardest battles of my ongoing war with the disease my ex had to deal with my hospital visits, medication schedule, dietary restrictions, weight loss, and bowel movements. Every partner will get stressed if you’re using the bathroom 10 times a day. I had no ability to control myself; my body reacted as if my diet consisted of Taco Bell.
Speaking to my friend’s wife was like talking to myself in the mirror. We understood each other’s pain and frustration. However, when we met she was still in a flare, full blown UC, and I believed I had achieved clinical remission. That’s doctor speak for “as good as you’re gonna get”. I stopped bleeding. I was only going number two once a day. I’m still having varying pain in parts of my lower abdomen, but it isn’t as debilitating as it was when I was in a flare. It’s manageable.
The Long Road To Remission
Having achieved remission I am now able to share this with others. When I last wrote about my UC diagnosis I was still trying to figure out what the hell was happening. After months of frustration and different medications my General Practitioner (GP) recommended that I seek a new Gastroenterologist (GI). He felt that I should find a GI at a large hospital that specializes in UC. These hospitals have information on the latest and best ways of treatment. They have many doctors specializing in UC and they share their knowledge with each other.
After a thorough search I selected a GI at NYU Langone which is the 2nd best hospital in NYS for UC. He had glowing reviews online at ZocDoc and other review sites and he was also in my healthcare network ????. Ironically my new GI and my previous GI knew each other.
The doctors, nurses, and staff at NYU Langone are the GREATEST! When you are suffering and your pain is hard to bear, it is important to know that you have professionals around you focused on improving your well being.
My new GI and I decided it was time for a colonoscopy. It would be my second time. After the colonoscopy he confirmed that I have UC, as the previous GI diagnosed. However, he felt that we should switch up my medications.
I was taking Apriso, an oral mesalamine, and Rowasa, a suspension mesalamine that I administered up the bum. He had me switch to a different oral mesalamine called Lialda. It has a different delivery mechanism compared to Apriso. Of course, I’m insured by the shitty American healthcare system, so I had to get the medication approved by my insurance company ????????. This took several months. Luckily NYU Langone gave me samples until Lialda was approved.
My GI also had me switch to hydrocortisone, a suspension steroid medication, in place of Rowasa. I had to administer it rectally similar to Rowasa. The medication came in a 30 ml bottle with a 2-3 inch long applicator that looked like the top of a nasal spray. Before going to sleep I laid on the left side of my body on my bed. I inserted the applicator, which is pre-lubed, an inch or so into my rectum. I squeezed out the liquid onto the inflamed area. I did this for a couple of months. I started feeling so well that every night I looked forward to putting liquids up my ass more than a gay man who loves creampies. Also known as catchers.
According to new information, attacking the inflammation with rectal steroids and oral mesalamine in the early stages increases the chances of achieving and maintaining remission. I wish I could’ve kept using steroids because I felt great. I had to stop using it due to the horrible long term side affects. The doctor recommended that I switch back to using Rowasa again. Studies show that using mesalamine both orally and rectally dramatically increases your chances of maintaining remission versus using either individually. However, Rowasa doesn’t reduce inflammation like steroids and it’s not fun to take at all. Now, when I take Rowasa every night, I feel I’m a prison bitch submitting to anal as barter for protection from other criminals.
Since mid-2015 I have been taking four mesalamine (Lialda) pills orally every morning and liquid mesalamine (Rowasa) rectally at night. All this makes for a nice conversation when a woman sleeps over, “Huh? What’s that sound of liquid being squeezed out of a bottle into a small cavity? It’s just the radiator baby. Now shhhhh. Go to sleep. Shhhhhh.” Then I continue laying on the left side of my body for 30 mins per the instructions for the medication, “I can’t cuddle right now, but ask me again in 27 mins.” Who am I kidding, I ain’t having many sleepovers. This whole conversation takes place with my pillow ????.
Traveling has become difficult. I was in Europe for two months last year, and I took a month’s worth of 30 ml Rowasa bottles that used up a quarter of the space in my luggage. Leaving little space for my pretty clothes and shoes. Luckily, my ex visited me a couple of times when I was out there, so she brought over another month’s worth of meds.
I eat salads now. Lots of salads. I workout. I get more sleep. UGGHHH I hate it ☹️! It’s difficult, and I fail often. I do it though, because it helps curb my pain and it gives me the strength and energy it takes to live every day. I still have slight pain, and I know that it won’t ever get better than this. I’m okay with that, as long as it doesn’t get worse and I don’t get into a flare.
In April 2016 my GI did another colonoscopy and the tests came back negative for inflammation. I am officially in clinical remission as I had suspected. Yay!
It was a long difficult process. Doctors don’t know much about UC. Reaching remission can be different for every UC sufferer. What works for me, won’t necessarily work for others. I want UC people to know that it took a lot of patience, research, and trial and error to get to where I am. You are the only one that knows your body. My advice would be to read about UC/IBD as much as you can, and get the right GI/Hospital that you’re comfortable with. All this takes a lot of energy, I know. It’s scary not having control over how you feel. It’s scary learning what UC is and how bad it can get. While searching for a cure I’ve eaten turmeric, drank aloe vera, and rubbed a goat’s testicle. Read, research, and make educated decisions. Don’t fall for what others claim to be a cure. Find what works for you, and then stick to it.
UC, as well as the drugs I take, will cause my body harm in other ways. My body will deteriorate faster than the average person. I’m more likely to get cancer or some other disease. I may go into a flare again. Staying in remission my entire life without having any other problems may be wishful thinking, but I aimed for remission, and here I am. Now I’m aiming for a healthy life here on out.
Being “normal” has allowed me to get back to living. Since my remission I’ve travelled to and performed in Scandinavia and London, I’m working on my own stand-up show in NYC, and I even made it on to the front page of Huffington Post. I’m proud of myself and thankful for all the support I’ve received.
I am also hoping my writing helps you understand your disease, whatever it may be. I hope it helps others empathize with you. I hope you get better because life is worth living when you can live it.
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