Down With the Sickness

December 12, 2014 |
By Sadiq Samani

Show Your Friends:

Don’t say “I’m so sorry that you have to go through this!” to me after reading this. It’s not your fault. It’s actually not my fault either.

You don’t realize your mortality till you are hit with sickness. All my life (I’m 32 now) my body has been tougher than a F150. I rarely ever got sick, and if I did end up in the hospital it was due to a sport related injury, like a dislocated finger or a minor fracture in my foot. Compared to my observations of other people and their illnesses, I felt immortal.

In the last few years, I started getting sick for numerous different reasons, of which the causes I did not know. I collapsed a couple of times, out of nowhere, and needed to be rushed to emergency care. After a few episodes, I tried changing up my lifestyle a bit, but my habits continued to be cyclical. What do you change about your lifestyle, when you don’t know what is wrong with you?

It got worse. I have been having digestive issues (it’s going to get graphic throughout the article) and this continued for almost a year and a half. In mid 2013 while visiting my sweet home Chicago, after living in NYC for several months, I was finally able to meet my General Practitioner (GP) and he stated that the issue might be lactose intolerance. I immediately started cutting out all dairy. I started feeling better.

Needing a Specialist

Not 100% better though, more like 85%. I was still feeling this burn on the left side of my lower abdomen. When I transferred my insurance to NYC through ACA (read my thoughts on Obamacare) and was able to obtain a local doctor, I got a new GP and went in for a routine visit while also trying to discuss my issues. He said that if it isn’t lactose, it probably is a digestive issue that he cannot diagnose and that I would need a specialist. He referred me to a Gastroenterologist (GE).

I visited the GE, we sat down and he went through my history. After the evaluation, he asks me to get some blood work done and that since I’ve been suffering for such a long time, I may need to do an endoscopy. This meant they were going to put me under anesthesia and molest me, or in topical terms, Bill Cosby me. Just kidding! They were going to put me under and insert a camera scope down my throat to see what was going on in my stomach. My blood tests came back first and usually for people with inflammatory symptoms the test shows inflammation, but mine came out normal.

Then we did the endoscopy, and my biopsies were sent to the lab. They returned negative. The only thing they found was that I had a very minor allergy to shrimp. I wouldn’t die if I ate shrimp, but it would get worse if I continued eating shrimp. I rarely ever ate shrimp anyway, so what the fuck was wrong with me?!

My GE said to lay off shrimp and see if I got better. I didn’t. Aug 2014 I got worse. I mean horrible. I was spending most of the day in the bathroom excreting liquid goo, blood, and mucous out of my anus.

Looking Up the Butt

I contacted my GE again and he said the next step is to do a stool test. That maybe I had a bacteria that needed to be eradicated. This was the weirdest thing I have ever done, and I’m a pretty weird person in general. Every time I had a Bowel Movement (BM), I had to put it into a container, and then scoop it with a tiny plastic spoon into two smaller containers. I had to do this for 6 consecutive BMs. Tests came out negative as well, with no signs of inflammation.

The next gradual step was to do a colonoscopy. Again, this meant putting me under, but this time taking a camera scope up my butthole to see what the hell is going on in my colon.

Ulcerative Colitis

Results came in. Sadiq has mild/moderate Ulcerative Colitis (UC). Ding ding ding ding ding! At the time, I didn’t quite know what that meant, but my GE was telling me, “Oh, it’s just mild ulcerative colitis, which is inflammation in your colon, starting at your rectum. We’ll give you some medicine and make you feel better.”

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I’m thinking, oh this sounds like a walk in the park, because he didn’t even seem very concerned. He made it seem as if I had just fallen and scraped my knee a little and that we were just going to rub on some Neosporin, place a band aid on it, and all better.

When I got home I started abusing the hell out of Google to get as much info on UC as possible. It is a class of Irritable Bowel Disease (IBD). More specifically, UC is an Autoimmune Disease (AD) in the colon. Which means that the immune system in my body has gone haywire and it’s indiscriminately attacking my colon because it thinks the good bacteria are intruders. 50 million Americans have an Autoimmune Disease (that’s 1 in 6 people, or 16% of the population), 1.4 million have an IBD (UC or Crohn’s). The medical community doesn’t quite know exactly what causes it, but the belief is that it’s genetics and that environment and diet exacerbate it. Since AD is much more prevalent in western countries, some think there may be a correlation between AD and our environment or food source.

Solutions To the Problem

For UC (and other ADs) you have to take medication, usually for life, and hopefully you’ll be able to reach remission and also maintain it, but you cannot reach a cure through medication. Some drugs help your body stop fighting itself, but they also make you more susceptible to other diseases. Some severe drugs involve taking steroids. Not the good steroids with the side effects of I’m gonna be buff, become a major league baseball superstar, and get questioned by congress for using performance enhancing drugs. No, it’s the, maybe you’ll feel better, but be addicted and it’ll fuck with you psychologically, and even if you achieve remission, you can’t use it for life, steroids. You live with these diseases.

Not all medication just works either, there’s trial and error and there is a plethora of different drugs. It’s not just as simple as do A, B, C and you’re in remission. It’s more like do A, is it working? Little bit? Okay then try B? Just a little better? Try C? Feeling worse? Remove C. Not feeling better? Try F and remove B? Try M or T or X, remove J. Confusing yet? Many people go from A-Z without feeling better, running out of alphabets in the fight against the disease. Some people get into remission for the rest of their lives, others are burning inside all the time with no end in sight, and most are somewhere in the middle, going through remission and then a flare and back into remission. You’re in an abusive relationship in which you’re the bitch, without a choice to leave.

One in three ulcerative colitis patients end up being so severe that their whole colon has to be removed and in place of it they attach a bag to collect your waste. Some surgeries can create a pouch within your body to act like a colon, but others require you to have a pouch that is attached to a hole on the outside of your stomach, in which your body disposes all it’s excrements. Which is fuckin’ hot as hell for your sex life.

Crazy! So all this time, I’m reading all this and trying to figure out how to get better. The only cure is removing your colon! That’s it. That’s the only thing the medical community has come up with. And that’s if you’re severely ill where drugs just don’t work anymore. There are of course experimental studies going on, for example there’s one called Fecal Microbiota Transplant (FMT). It’s shown positive results with another digestive issue called C. Diff (support a non-profit trying to streamline the process). FMT is where you get poop from a donor that has good microbiota in their stomach and no history of illness, and after you get it tested it gets inserted through your rectum into your colon. There isn’t any evidence that it works for UC yet, but if it cured UC, there would be a line at the hospital with all UC sufferers, waiting like they were just about to purchase a brand new iPhone, while also paying the premium for the product. If my doctor gave me an option between getting my colon removed or sticking someone else’s feces up my butt, I would stick that poop in my no no place faster than a gay bottom playing catch in a bathroom at a dirty gay bar in Boystown. Shit, if he told me I had to eat some poop to cure me, I would just hope he would put it on a sugar cone with sprinkles on top to help it go down easier. If it made IBD sufferers feel normal again, there is a lot we’re willing to do, if we aren’t already doing it.

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I’m burning inside most waking moments and none of the drugs prescribed to me have shown huge progress. I’m a little better, but I got ways to go. Remember, my digestive tract is inflamed, so anything that travels through can irritate it. Imagine that it’s like a wound on your hand, you’re better off not putting hot sauce on it if you want it to heal.

I’ve also made dietary changes and added more exercise and methods to reduce stress, per advice I’ve read, which has helped. Though how do you reduce stress when your disease is constantly attacking you. I supposedly have a mild case though, so I can’t imagine what people who have it severe are going through. They probably just sit in the bathroom the whole day while the inside of their body is burning hotter than a California wild fire.

It May Be Crohn’s

Barium liquid bottle for X-RaySince I’ve also been having irritation on the middle/right sides of my abdomen, the IBD might actually be Crohn’s. UC and Crohn’s can seem similar and that’s why Crohn’s is harder to diagnose. UC is one long line of inflammation in your colon, usually near your rectum, whereas Crohn’s can be inflammation in any part of your digestive tract from your throat to your rectum, but more specifically where your small intestines and colon meet. Crohn’s seems it’d be a lot worse to me, but I’m sure each IBD has it’s plus and minuses, or technically it’s minuses and minuses. In order to diagnose if it’s Crohn’s I recently did a test called a Small Bowel Series. I had to drink Barium, which is a chalky liquid that shows certain issues in your digestive tract by using X-Ray. You drink the stuff, and then the nurse/doctor takes X-Rays every 15-30 minutes until the liquid reaches your small intestine/colon. They then capture any other issues based on what shows up on the X-Ray and send the results to my GE. I’m hoping what I have is just irritation, and not inflammation. I’m already comfortable with my research about UC and I do not want Crohn’s. There is no cure for Crohn’s, not even just removing your colon. Just endless surgeries when your health becomes severe.

Positives and Negatives

The toughest part of having IBD is having to go to the bathroom out of nowhere. Some of the times I’m in control, other times my body says I gotta shit, and when it says that, I HAVE to be at a bathroom, because my body doesn’t let me control it. I’ve read some horrible stories of people shitting their pants in public. I end up feeling so sorry for these people and then I realize, I’m now part of the IBD group and something like that may happen to me in the future!

IBD also affects all parts of your life, from sleep quality, work, and relationships. It can be debilitating, and it feels even worse that you put a burden on your loved ones. It has even affected my stand up and entertainment career. I’ve always worked a 9-5 to pay the bills (comedy don’t pay yo), and did stand up off hours. I was able to keep up with that for a while. However, in the last couple of years, I just haven’t had the energy to keep up due to my illness and as well as getting older. Even the eXperiments I have been doing have suffered. I ended up not being able to do the month of September (which I’ll replace with a future month) and I haven’t been able to finish the videos and post my results since the June eXperiment. Even writing this piece can take a lot out of me.

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Also, many people don’t really know that I’m diseased, and it’s tough to tell them because poop is a topic no one wants to discuss. Furthermore, people don’t understand the severity of someone’s condition if they don’t see that the person is physically injured and suffering. Someone with a broken hand would get more empathy than someone with Celiacs, cause people can see the cast, but you can’t see the gluten allergy. Adults are worst than children when it comes to discussing and understanding mature topics.

On the bright side, apparently I’m considered handicapped (or handicapable) and can apply for handicap parking and use the handicap bathroom, though I did the latter before I got diagnosed whenever other stalls were taken. Now I’ll be the guy getting pissed at other people for using the handicap bathroom when they aren’t handicapped. I think it’s good that I’m able to get these privileges because even though my disease isn’t visible, it is indeed debilitating, and accessing a bathroom immediately is completely necessary for IBD patients. I’m also glad that these services are available, and that I have healthcare that won’t make me bankrupt. Though I think that our system can be even better. I’m glad I’ve always been a proponent of affordable access to healthcare and I will continue to be vocal about it.

It Will Get Better

I’ve always been a realistic/positive person. Which means I am positive about things that are realistically possible and probable. With so many variables in treating and inducing remission with IBD, it can be easy to get jaded. I’ve absorbed all types of information on IBD, from worst case scenarios to best case scenarios and everything in between. I rather have knowledge of it all so that I can make well informed decisions.

I wanted to be President one day, and having to go through this sickness made me skeptical. I started believing that I couldn’t even be a stand up comedian anymore because of how taxing the profession can be. Then I started looking up best case scenarios. There are a lot of famous/accomplished people that have suffered with IBD and have still been able to achieve their dreams. John F. Kennedy had UC and Eisenhower had Crohn’s. There are also many singers, athletes, actors, doctors, lawyers, etc. that have IBD. So yeah, I’m still planning on being President some day.

I just have to put things in context based on what applies to me. Find the common denominator of what works for everyone, and then tailor and apply those things to me. Go through the trial and error process, and though it may take a bit, try to induce remission. Trial and error is where my skills as a developer and data analyst will really help. I’m also not as bad of a case. On a scale of 10, 10 being the worst, I’m supposedly a 3. My GE feels that I have a much higher chance of reaching the promise land and staying there for most of my life. Though based on how erratic IBD is, I have to take that with a grain of salt and not set myself up for failure. I only have one goal right now, induce remission.

As I start feeling healthier and am able to manage myself a bit better, I’ve been catching up on my goals. It’ll take several months to get back into the grind, but the good news is that starting in March I’ll be cutting down my day job hours significantly, while taking a pay cut, but also being able to focus 110% on comedy. The experiment videos are getting pieced together as well. I have to release July/Drugs, August/Dance, October/Politics and November/Macy’s Thanksgiving Day parade. It’ll be super late, but I will get it done.

I apologize that I haven’t met the expectations of all my family, friends and fans. I know many of you keep asking when my next show is, and in  early 2015, once I’m able to focus on stand up entirely, you’ll get an opportunity to see me crushing it on stage.

I will continue following my dreams. I will live my life to the fullest. I will work hard to maintain my body. For my case, remission is possible, probable, and realistic, and that is exactly what I am aiming for.

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