An ulcerative colitis (UC) diagnosis can bring about changes you never thought you'd face. But, if you're newly diagnosed, or even if you've had your diagnosis for a while, how do you know what’s normal and what’s cause for alarm when it comes to UC?
What UC symptoms are considered 'normal?'
The Crohn's and Colitis Foundation describes the "normal" symptoms of UC as:
- Loose and urgent bowel movements
- Persistent diarrhea accompanied by blood in the stool
- Abdominal pain
- Generally bloody stool
- Crampy abdominal pain
Not the most fun list, but it leaves a lot to be interpreted by you, the patient. For instance, how "bloody" is too bloody? How much pain is too much pain? What if you're not having bowel movements at all?
There's a variety of symptoms that are considered either indicative of UC or "normal." How can you determine what's normal and what's a sign of trouble?
Define your normal with UC
"Normal" when you have UC is completely subjective to you. That's probably not the answer you're looking for, but I'll share my experience to help you determine your normal.
My normal with UC is:
- Constipation. There are days I really struggle to have a bowel movement due to constipation. I usually cycle on and off with Miralax when I need it.
- Fatigue. I'm tired most days, but I'm not so fatigued that I can't perform at my job or take care of other responsibilities.
- Hemorrhoids. I can't seem to shake them. My hemorrhoids are concentrated around my rectum, and I usually wind up breaking them open when I have a bowel movement. So, bright-red blood in my stool is normal.
- Mild cramps. After eating a trigger food, I get mild cramps that mimic the cramps you get right before diarrhea, but they subside after a few minutes or so.
This is my version of normal, and it may not be the same for you. I determined that these symptoms were "normal" for me by doing the following:
- Asking my gastroenterologist (GI) about it. I asked about seeing blood in my stool, about the cramps, and about the fatigue. She found the hemorrhoids, which answered the blood question, but I keep an open line of communication with her in case things go haywire.
- Looking at my stool. This might sound gross, but I do it every time I have a bowel movement. That way I know how much blood came out, if there's any mucous, and how formed my stools are. You can even find apps to help you keep track of these types of symptoms.
- Rating my days. On particularly good and bad days, I make sure to give the day a rating on my own scale (mine's a basic 1 – 10, with 10 being awesome). If I have a lot of bad days (2-3) in a row, I check in with my GI.
What UC symptoms are cause for concern?
What's not normal for UC, again, depends on the person. My abnormal symptoms have included:
- Severely painful stomach spasms. So painful that I cried out and spent hours wrestling with the cramps to no avail.
- Lots of blood in my stool. I saw tablespoons of blood with each bowel movement — or in place of a bowel movement, only blood.
- More than three watery bowel movements in a day. If I have more than three and they're starting to become loose and watery, I know that's not normal.
In these cases, I seek medical attention.
If you're experiencing not-so-normal symptoms, I recommend avoid Googling your symptoms, visiting WebMD, or asking in an online forum if a symptom is worth going to a hospital over. You'll likely only see horror stories or hear about someone's near-death experience, which isn't typically indicative of what you're experiencing.
What to do when UC symptoms are abnormal or severe
What do you do once you’ve determined that the symptoms you're experiencing don't fit into your realm of "normal?" If your abnormal symptoms are manageable, meaning that you might feel icky, but can still somewhat function, call your GI doctor.
If your particular doctor is unavailable, call the on-call GI doctor. Let them know what you're experiencing and ask them to get back to you as your symptom isn't normal. You can always leave a message with a nurse or contact your GI through an online portal if you can't get ahold of them on the phone.
In cases when your symptoms are severe (e.g., my severe stomach spasms), go to the emergency room. That means if you're unable to walk, move, or speak due to pain or cramping, or if you're incoherent, the emergency room is your best bet. However, in cases where you might be seeing more blood than usual, or your pain level is slightly elevated, there's not much an emergency room can do for you, and, more often than not, they may send you home. Always defer to your GI doctor, unless what you're experiencing is causing severe dehydration, bleeding, or pain.
The Crohn's and Colitis Foundation says you should seek immediate medical attention if you have:
- Heavy, persistent diarrhea
- Bleeding from the rectum and blood clots in your stool
- Constant pain
- A high fever
The bottom line
Living with UC means dealing with a variety of symptoms, which can often be confusing and induce anxiety. When in doubt, talk to your doctor if you’re worried something isn’t normal.
See more helpful articles:
10 Questions to Ask Your Doctor About Your Ulcerative Colitis
Sick and Tired: How to Deal With Fatigue When You Have Ulcerative Colitis
When Food Attacks: How I Roll With the Gut Punches of Ulcerative Colitis