Symptom Detail: With a Little Humorous Insight

Well first I will say, for this post, if you don’t have UC or Crohn’s or know someone who does, you are probably going to think, “Omg, is she really sharing this stuff for everyone to see?” However, if you are suffering from UC or Crohn’s or know someone who is your thoughts are going to be more like “Yea, I feel ya girl. Surprised it wasn’t worse.”

In this post I am just going to give you a list of symptoms I had that I am now positive were caused by Ulcerative Colitis, symptoms I think the meds caused, and other symptoms indirectly caused by UC.

Before I get into this, I want to throw in this little side note. No one knows what exactly causes UC or Crohn’s. There are a couple different theories. One theory is taking too many antibiotics and causing a bacterial imbalance in the digestive system. Another theory is the use of Non-Steroidal Anti-inflammatories or (NSAIDS). These are medications like Aleve and Advil or generic forms Naproxen and Ibuprophen. I will say that as a kid and young adult, I had a lot of these. There is also a genetic component to these illnesses, but not everyone who develops the disease has a family member with the disease. I do have family member who had the disease.  It is known that the disease is an autoimmune disease. This means that without doing anything in particular to cause the disease your body attacks itself. Something becomes abnormal in your system and causes your body to attack its own cells, creating bleeding ulcers. The most important thing to know here, is that you did nothing to cause this disease. You didn’t make one bad decision or a series of bad decisions to cause this. This was probably one of the hardest things for me to grasp, because this meant I had no control. If I didn’t know what I did to cause it, how was I going to fix it? I like to be in control; so needless to say, this was not ideal for me. I’m laughing at myself, because what really about having a chronic disease is ideal…..ha!

These are symptoms I had which were definitely caused by UC

1.     Urgency. Not like the kind of urgency were you drank a Starbucks and think “Woah, I gotta go to the bathroom.” This is the kind of urgency were if I’m driving and it hits me, I’m going to drive in the emergency lane to get around you and get to a bathroom as soon as I can. Or the kind were if I am in a situation in which I can’t get to a restroom, my entire body starts to sweat and get hot, because the pain is so intense. Please, if you know someone with UC, don’t ever tell that person you have a stomach ache, because they will just want to punch you in the face. I even had a hard time being empathetic to my patients in labor. I was always thinking if I can do this, you can handle a few measly contractions (not how a nurse is supposed to think). 

2.     Frequency.  I never got into that whole counting my bowel movements thing. The doctors would always ask me, “So, how many times are you moving your bowels now?” I was like really? I don’t freaking know. I am shitting a whole lot more than I would like to be, isn’t that enough info for you? The thing about UC is, the slightest thing in your colon can make you feel like you need to shit bricks. Then you go to the bathroom and its nothing but a little blood mucus. You get up wash your hands, walk out of the bathroom, turn around and come right back in, because it happens that often. I wish I could tell you how many of my old FB post came from the toilet, because I would get sick of getting up and down. So, I would just take my iPad to the toilet and hang out there for a while. Much easier than running back to the bathroom 5 seconds after leaving.

3.     Blood. Lots of blood. I mean if someone came into the bathroom and saw what my colon could put into the toilet, they would probably ask me where the body is and where I plan on hiding it (a joke, because at times there was so much blood it looked like I murdered someone in the bathroom).

4.     Cramping and weird pain. The entire time I had UC, I never noticed my menstrual cramps, which prior to UC I thought was bad pain. I think the cramping from my UC just covered them up. Sometime around February or March of 2013 I started having this extremely weird and painful sensation down my lower back. This was a symptom I never read about on any forum or blog and no Dr ever talked about, so I wasn’t really sure if it was caused by UC. One of my Docs did say that it was probably colonic spasms (meaning my colon was having spasms like a sore muscle after a workout or something). Of course, lucky me, I got another medication for this. Hyosycamine (or something like that) it was an antispasmodic and it did nothing for me.

5.     Gas and Extreme Bloating. I didn’t know what a flat stomach felt like before taking steroids for the first time. Now don’t let that confuse you to think that steroids are awesome or a good medicine, but in the beginning, before the terrible side effects, they do manage the inflammation. Taking away the inflammation took away what I always thought was bloating. I also forgot to mention Probiotics in my previous post, which is a surprise, because I loved these. I started taking these from the first time I was diagnosed. I started with Align. These completely took away my gas and bloating symptoms. As I mentioned, one theory of UC is that it is caused by bacterial imblance. The thought of Probiotics is that you reintroduce the good bacteria needed in your gut to help your system regain bacterial balance. I took Align, because it is the only probiotic that is proven (with a study or several) to help with inflammation. The thing about probiotics is they are not all the same. They all have different combinations of different bacteria. It’s important to get some insight from a Doc or someone with experience before choosing one. Anyways probiotics took care of the noisy gas problem I had and for a while it even calmed the mucus down a little.

6.     Mouth ulcers. This is one of my most interesting symptoms, because I’ve had these since I can remember. I haven’t had any since surgery though. These ulcers were like canker sores. That’s what most Docs would end up calling them. These ulcers were also the reason I was on so many antibiotics as a kid. I would never test positive for strep, have a fever, or any other sign of infection; but all my Drs thought that if my throat looked like that, I had to have an infection, so another antibiotic they would give me. They are very painful ulcers. They make eating and drinking anything pretty terrible. These ulcers would come and go. I didn’t always have them. However, for about 6 months before my UC got really bad I had these mouth ulcers extremely bad and couldn’t get them to go away. I even had them tested for Herpes 3 times thinking I for sure messed up and kissed the wrong person at some point in life (side note: it was always negative for herpes). Anyways, I am really glad this is one of the symptoms I got to say goodbye to.

7.     Anemia. At my worst my Hemoglobin level was 8.6. Normal is 8-12, and at 8 they start blood transfusions. Talk about scary.
8. Anal Fissures. Sounds like its gotta be fun right? Basically you develop small canyons in your anus from the constant irritation of the diarrhea. Butt Paste (like for a baby's diaper rash) is the best thing I found for this.
9. Pain. I am editing this post right now to add this. I mention it in some of the other symptoms, but this is pain on a whole new level. It definitely deserves  number of its own. I really don't know how your body endures this kind of pain. I know pain is subjective, but adrenaline is something, because somehow it gets you through the most painful moments of your life. I also think you get through it, because at that very moment, you really have no other choice.

The following are symptoms I had that could have been a direct result of UC or caused by the immune suppressing meds I was on.

           

1.     Joint Pain. So this symptom confused me a lot. Some days I would have such bad joint pain that I couldn’t even get out of bed in the morning. This was mainly in my large joints like knees, hips, ankles. When this happened, my joints would also be swollen, red, and hot, seeming to be more like an infection. I can’t really say a lot about this other than it freaking sucked. Now not only would I have to bolt to the bathroom because of cramping, but not it was extremely hard to physically make myself get there quickly. This also made my job an extreme challenge. Anyone who is in nursing knows that speed walking should be part of the job description, and this kind of joint pain made that extremely hard. This is also when I had Erythema Nodosum. I thought I had cellulitis, so I went to the immediate care center, then the emergency room for IV antibiotics. My symptoms got better in the hospital because I was resting (not from the antibiotics). One Dr. tried to tell me it wasn’t cellulitis and I chewed him out. I was so so so so tired of every Dr blaming everything I had on UC (erythema nodosum is an extremely painful skin and joint inflammatory condition that is common in those with UC). Anyway that Dr. was right and I chewed him out and fired him for no reason, but its hard to hear that you have a disease so severe it is affecting every organ system in your body.

2.     Extreme Fatigue. So, this could be caused by UC, the meds, and the Anemia I had resulting from UC. Most likely all three contributed. But this was my life (when not on prednisone) Go to school, or work, come home sleep. On the weekends I slept like I was never going to be able to sleep again, hoping it would help me get through the next week. Some life huh?

3.     Fevers, Chills, Nigh Sweats. OK these are symptoms that are telling you something is extremely wrong with you and your body is fighting to fix it. I had these all the time. I would be freezing before going to bed, so I would wear two pairs of sweat pants, a long sleeve shirt, and a sweatshirt, and shiver so bad from the chills that it would shake my bed. Then I would wake up completely drenched in sweat. Like I could wring out my shirt and my sheets. Gross. Yea I could take Tylenol to control this, but the last thing I wanted was to take any more medication. It’s extremely hard to feel like yourself when you are on so many medications.

4.     Infections. Ugh. Strep throat. Sore throats. Strange things that looked like pimples (probably some form of staph infection). Yeast infections, which I had never experienced before this and all I can say about those is um yuck. Not a good time, but the best thing to treat the yeast infection I found was yogurt and cut back on all carbs. No sugar for a while.  The bottom line is, when you are on these medications you can’t avoid getting infections. Your body has no immune system. Then when you get these infections, every Dr wants you on antibiotics to treat the infection. Well that’s cool and all, except I had UC and antibiotics make UC a bazillion times worse making it absolutely impossible to complete the antibiotic regimen.

5.      Cervical Dysplasia.  So these are abnormal cells on my cervix. They aren’t cancer but they are damn close. Yup, these medications that were suppose to help me almost gave me cancer, but that’s what they do. They shut down your immune system, and inhibit your body from killing off abnormal cells and the viruses that cause them leading them to replicate and continue to change even more. Luckily my Dr recognized I was on this medicine and took action to get rid of those cells. My last papsmear was normal. Thank you God.
6. Hair Loss. Yup. I could make you a wig from my bathroom floor, shower, and hair brushes. Also, my hair wouldn't grow. 

Symptoms that were an indirect result of UC

1.     Anxiety. Its extremely hard to not develop anxiety when you are always wondering if you might shit your pants any second, or if eating this or eating that may cause your gut to turn flips. It was also hard to avoid, because I was always stressing over what the medications I was taking could be causing.

2.     Homebody syndrome. If I didn’t absolutely have to go somewhere, I didn’t want to go. It was much easier for me to lay in my bed which was about 5 feet from my toilet than to go anywhere and risk using a disgusting public restroom, being stuck somewhere away from a bathroom, or just being in pain in public; that’s hard to do.

I wanted to share all of these symptoms for others suffering, or those who think they may have UC or Crohn’s. Chances are I probably forgot about some of them, so if you have questions about some symptoms you are having feel free to ask me in a comment or personal e-mail (millsh11@hotmail.com).

Haha! True for UC too!