My Crohn’s Disease & POTS Symptoms

None of these symptoms are unusual to have with these chronic illnesses, but these are the ones I go through personally.  Everyone is unique.

Crohn’s Disease

– stomach pain

– weight loss

– food intolerance’s

– weakness

– nausea/ vomiting

– lethargy

– muscle pain and weakness

– low B12, anemia

– low immune system

– nerve damage

– hair falling out

– heat and medication rashes

– indigestion, heart burn, gut rot

– passing out

Postural Orthostatic Tachycardia Syndrome

– memory loss

– brain fogginess

– dizziness

– nausea

– food intolerance’s

– sensitive hearing (extreme ear aches)

– site sensitivity (cluster headaches)

– chest pains

– blood pooling in legs causing puffiness and change of color

– rashes

– bed sores

– insomnia

– worsened allergies and asthma

– low blood pressure when laying down flat

– high blood pressure when standing

– high heart rate up to around 175 beats per minute

– loss of appetite

– muscles and joint pain

– shakes (entire body, noticeable by looking at me)

– panic attacks

– severe resistant depression (resistance to all types of medications)

– heat intolerance

– sweating

– sever dehydration

– heart palpitations

– high levels of adrenalin

– fainting

– blacking out

– increased sleep

– decreased concentration

– poor balance

– muscle spasms

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13 thoughts on “My Crohn’s Disease & POTS Symptoms

  1. I was just wonder as I am suffering from all sorts of drama in my body..with signs of both illnesses and seeing doctor after doctor if you know if Crohn’s Disease and POTS are connected? I only ask because I read a study saying that GERD and POTS are, but can’t find info on this.

    • Well everyone I know who has POTS has either a gastrointestinal disease, or bladder problems. Also, Crohn’s Disease, and Dysautonomia (pots) are both autoimmune diseases. Once you have one, you’re at a much larger risk to get another autoimmune problem. Not only that, but pots and crohns affect a LOT of our major organs, and crohn’s affects everything from the hair on your head to your toes, so it’s not unlikely that it would have a common problem like pots, that affects the entire digestive system. I myself, probably have pots and crohn’s bc there are tons of ppl with autoimmune diseases in my family, and I got nerve damage from having crohn’s which sort of brought the pots out. There’s a page on here with lists of autoimmune diseases, the more people in your family with them, the more likely you were to have gotten sick. Usually it’s only based on your grandparents, mom and dad and siblings, but it’s not always the same diseases as them, just an autoimmune disease in general. Hope this helped 🙂

      • Hello,
        Is there any hope that a person having Pots, will be able to get rid of it? I have no idea how to help my sister in law who lives in an underdeveloped country and it is even harder to get the right diagnosis, not mentioning curing it. I am doing my own research in the internet using her symptoms and finding out what she might have, but I don’t think that is enough. Please help with any info. Thanks

      • Jenny I don’t know where your sis lives specifically and if the hospitals there have this, but in order to be diagnosed, you have to be put on a tilt table test. I have a tab above that shows what it is. I am now not considered a POTS patient because my heart rate was stabilized with a beta blocker medicine. After a year or two, then my blood pressure stabilized even when I was standing. I still feel terrible like I did, but I am slowly building my body back up to realizing it’s no longer sick like it was. I’m not saying this works for everyone, because I’ve talked to a lot who found the beta blockers didn’t work, etc., but it is possible to get over POTS as long as there isn’t any other problems causing some of the symptoms, like nerve damage, etc. She needs to see a Neurologist to get nerve conductivity tests done, and a Cardiologist to get her on heart rate stabilizing medicine. I hope you are able to get that where she is.

  2. Hi Ash,

    I was diagnosed with both POTS and Crohn’s in the last few months, and I truly appreciated finding your blog. I’m 18 years old, and while the illnesses have taken away my senior year of high school, I’m determined to make it to college in the fall. Unfortunately, I’m currently really struggling to get everything under control. While the POTS symptoms have begun to improve (thank you beta blockers!), the Crohn’s symptoms have tenfolded. I can’t eat anything without getting horribly sick. A week ago I was put on 6MP/MP6, and for some reason it’s only made things worse. And as I’m sure you know, when the Crohn’s symptoms are worse, it can affect POTS. A very not fun, viscous cycle. I guess I’m at a loss, and am generally concerned about college. Any advice?

    • The thing with Crohn’s, is it changes throughout the first year you have it. I found myself probably my most symptomatic during that time. I was put on Imuran and found that worked a lot better for me. It is the same class of medicine that you’re on. My sister is actually on the medication you are on, and even though she is a very extremely bad case, she has had crappy side effects from the medicine.. just generally not feeling good, dizzy, etc.

      I think the most important thing you can do for yourself when it comes to both of these illnesses is diet. Try slowly adding fiber back into your diet. Even if you go to the washroom a lot right now, it will help regulate that as well. And add salt to EVERYthing! I prefer sea salt, then you don’t taste it as much either. Never let yourself get really hungry. Try to constantly have some sort of snack with you. And water by as much as you can handle. It will help with blood flow, help if you have low blood pressure, and help with digesting your food.

      When you feel able, get exercising again asap. I know it’s almost impossible seeming with POTS, and the Crohn’s drags you right down. But try with swimming or a recumbent bike first, and slowly… and I mean slowly build yourself back up.

      I’m so sorry you are so young dealing with these two illnesses. No one deserves them, let alone at this point in their life when they have things like college. It is so tiring girl. College with POTS and Crohn’s. Please watch your diet. It’s the best thing I can give you. Just snack always, lots of water, and try to eat healthy as much as possible. And naps! Don’t be afraid to nap when you have the chance bc you need as much energy as you can! *hugs* Please let me know any questions you have, if you need anyone to talk to. It’s impossible trying to deal with this stuff alone! You’ll learn more from the other patients when it comes to POTS then you will from any doctor. lol sad but true!

  3. Hmm it appears like your website ate my first comment (it was extremely long) so
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