Living with UC and POTS

After many bouts of dizziness, abnormally high heart rate, and long periods of air hunger (where it felt like I could never get a full breath) I was diagnosed with postural orthostatic tachycardia syndrome (POTS) along with my ulcerative colitis (UC).

A disorder of the autonomic nervous system, POTS is when the nervous system struggles to regulate functions like heart rate, temperature, blood pressure, and more. This means that people with POTS often experience fatigue, headaches, dizziness, fainting, palpitations, shortness of breath, chest pain, insomnia, excessive sweating/issues with temperature regulation, brain fog, nausea, stomach pain, anxiety and more.1

If you are experiencing these issues, please do check in with your health provider to make sure you’re not experiencing anything life-threatening, as these symptoms can also indicate other problems. Prior to my diagnosis, I actually went to emergency multiple times to check in on chest pain. I also had multiple scans done of my heart, just to be sure it was functioning properly.

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POTS and colitis

In some cases, according to my doctor, POTS does accompany other diseases, including inflammatory bowel disease (IBD). Unfortunately, this also means that when my UC is flaring, my POTS can get worse. This makes me feel sicker in general, which obviously isn't optimal for either condition.

Despite only being diagnosed with POTS a year ago, my specialist suspects that I have been dealing with this issue for years. Luckily, in those years I have come up with plenty of strategies that have helped me reduce symptoms. My specialist has also shared a few other key interventions that I have now implemented.

Because I'm in a UC flare now, I've found it important to keep on top of these strategies so I don't further complicate my UC symptoms with POTS.

This or That

Are you (or your loved one) living with POTS alongside IBD?

Lots of water

According to my doctor, POTS sufferers need a lot of water, especially because some patients don’t retain fluid as well as they should. He recommended drinking at least two liters of water, or sixty-seven ounces; I usually drink closer to eighty or ninety ounces myself. This wreaked havoc on my bladder in the beginning, but now my body has adjusted to the increased water and my urination has normalized. Importantly, I also drink water in the middle of the night so that I don’t get dehydrated while sleeping.

In order to keep track of my water intake I’ve downloaded an app on my phone where I can log what I drink. Luckily, water helps both my UC and my POTS, so this change has helped both issues.

Electrolytes

My doctor told me that in addition to a diet of small, frequent meals, POTS sufferers need to incorporate more electrolytes into their daily consumption. I often use dissolvable electrolyte powder in my drinks for this reason, especially on hot days. These concoctions regulate my tachycardia and help my body retain water.

Drinks aren’t the only way I reap the benefits of electrolytes, though. For years I have been noticing that salt helps with my symptoms; when I was younger, I would get horrible headaches that would only get better with pretzels. According to my doctor, this is a common experience for POTS sufferers. Salt, made of sodium and chloride, which are two key electrolytes, is now an important part of my diet. I often use pickles, olives, and crackers to get more of it. I sometimes even sprinkle extra salt on my meals.

I haven't found salt to be a problem with my UC symptoms, and by changing my diet to deal with POTS, I find myself feeling better in general. This helps me deal with my UC as well, since I'm not as fatigued or nauseous.

Increased movement

According to my specialist, POTS sufferers exercise less in POTS flares because they don’t feel well. However, exercise can actually help with deconditioning and symptoms in the long-run, as long as POTS sufferers start slow. Additionally, doctors often recommend that POTS patients start exercise routines in a laying down position. Examples of this type of exercise include recumbent biking or swimming in a pool. Over time, POTS patients can increase the intensity of these exercises and/or sit and stand up.2

I walk extensively now with my POTS, as it is a standing but relatively gentle exercise. I hope to move to running at some point, but for now walking has been enough to keep my POTS somewhat in control. Continuing to exercise with UC is also helpful to me, as I continue to build my muscles and strengthen my endurance.

Temperature regulation

A difficult part of my POTS is that my body doesn’t seem to acclimate to temperature the way it should. In the summers I get far too hot. I also get too hot while sleeping. Unfortunately, extreme temperatures, especially heat, can cause blood vessels to widen which can make the heart rate go up. Once that happens, POTS symptoms can increase.

Because of this, I do my best to regulate my temperature. Drinking lots of water can help. So can avoiding being outside when it’s too warm, sleeping with blankets I can take off if needed, using a fan, watching my movement levels when it’s hot, and carrying a mister.

In addition to these interventions — and others, like compression stockings, which I don’t wear in the summer, but like in the winter — some patients do need medications to control their blood pressure, tachycardia, and more. I haven’t needed one of these medications yet, but I have found that lifestyle changes have the difference for me.

If you suspect you have POTS, you may want to speak with your doctor (I recommend getting a referral to a POTS specialist who may have more information about this disorder than other medical professionals), especially if you're already dealing with UC. Having both at once can be challenging, just like having any two disorders can be tough.

But I've found that sometimes their symptoms overlap. This is especially true for fatigue, nausea, and stomach pain. So by managing one disorder, I might actually be managing the other too.

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