Crohn’s and POTS anyone?

[Delta_hippo]

Just wondering if anyone has experience of Crohn’s and POTS. I got very sick with Crohn’s out of the blue in 2017. It has taken a long time to find a drug that worked but finally it seems Stelara and careful ibd aid ish diet and some supplements seem to have finally at least quelled the inflammation to some kind of reasonable level (FCP around 130).
So I was surprised to still be feeling pretty rubbish- occasionally racing heart rate, unable to stand for long without feeling faint especially in hot weather, generally fatigued and unwell in a vague way, shaky, struggling to regulate temperature so Raynauds if even slightly cold and weak and feeling faint on a warm day.
Anyway the GI was on holiday at last appointment so I saw the underling who said “why do you think this is anything to do with Crohn’s, sounds like POTS to me” and ordered tons of blood tests to check thyroid, iron etc
Since then I got covid closely followed by flu and the POTS stuff has escalated massively to the point I can only walk a very short distance otherwise need a mobility scooter. Which gets some odd looks as I’m in my 40s.
I have been referred to see a POTS specialist at the end of May (thanks useless government for running every public sector service into the ground) in the meantime I am desperate to get some sort of life back.
Any experiences and especially recovery tips most welcome. From what I’ve read, there is a gastro-POTS link but not well understood
Happy new year to you all anyway and hope 2023 brings health improvements for us all and loved ones xx

 

[crohnsinct]

I don’t have experience with POTS but another mom on here did paging @Clash to see if she has any helpful info. Although, it was her son who had IBD, not her.

 

[ncman]

Hello. Again, not suffering from this personally, but there is an influencer on TikTok, www.tiktok.com/@paulasojoro, who has CD + POTS. I find it difficult to keep up with the mass of social media, but if you're scrolling, and a vid pops, maybe it'll be one that might help.

 

[twentyonesyds]

Just wondering if anyone has experience of Crohn’s and POTS. I got very sick with Crohn’s out of the blue in 2017. It has taken a long time to find a drug that worked but finally it seems Stelara and careful ibd aid ish diet and some supplements seem to have finally at least quelled the inflammation to some kind of reasonable level (FCP around 130).
So I was surprised to still be feeling pretty rubbish- occasionally racing heart rate, unable to stand for long without feeling faint especially in hot weather, generally fatigued and unwell in a vague way, shaky, struggling to regulate temperature so Raynauds if even slightly cold and weak and feeling faint on a warm day.
Anyway the GI was on holiday at last appointment so I saw the underling who said “why do you think this is anything to do with Crohn’s, sounds like POTS to me” and ordered tons of blood tests to check thyroid, iron etc
Since then I got covid closely followed by flu and the POTS stuff has escalated massively to the point I can only walk a very short distance otherwise need a mobility scooter. Which gets some odd looks as I’m in my 40s.
I have been referred to see a POTS specialist at the end of May (thanks useless government for running every public sector service into the ground) in the meantime I am desperate to get some sort of life back.
Any experiences and especially recovery tips most welcome. From what I’ve read, there is a gastro-POTS link but not well understood
Happy new year to you all anyway and hope 2023 brings health improvements for us all and loved ones xx

I’m not diagnosed with both, but I’ve had my concerns about POTS. I for sure have some type of IBD, they claimed UC at first and then CD, but never got a formal diagnosis. I’ve had a ton of POTA symptoms similar to those that you listed. I overheat constantly and feel lightheaded and fatigued randomly, always get dizzy and feel faint after getting up as well as having body pains from getting up after sitting/laying down. I’m just about to turn 21, and was first “diagnosed” with CD when i was 16, so i’m not very well versed on everything yet.. nor have i found great doctors to work with in my area to help me figure out what’s going on.

 

[Delta_hippo]

Hi 21syds hope you get a good doctor to help you soon. With the POTS things are still pretty bad for me I would say seeing slight improvement doing the following things: tons of vitamin c to try and kill off any lingering covid and germs (about 5 grams a day as I have had a near constant cold since the covid), drinking a lot of fluids and especially a pint of electrolyte drink a day (called liquid iv I think), acupuncture and I am going to start an exercise protocol called the Levine protocol to try and help too. I also put sea salt on everything.
As I understand it testing for pots is fairly straightforward the doctor measures your blood pressure while sitting down then standing up for a minute and then ten minutes and if your heart rate has increased by a certain amount then looks like pots.
With Crohn’s though may be worth asking them to check iron and vitamin b12 because deficiency can cause pots type symptoms
Good luck. It’s been very hard so I wish you well.

 

[Delta_hippo]

Thought I would update this thread as it has been a while and in case any one comes along with similar problems.
I finally saw the consultant (at the hospital syncope clinic) he said the problem I have is called dysautonomia which basically means the autonomic nervous system doesn’t work properly. This system controls things like blood pressure, heart rate, sweating, temperature regulation etc so when off kilter you get all the problems I described above. It seems to be poorly understood and no obvious treatment but he said it is more common in women and can be triggered by trauma, pregnancy, surgery, infection, covid etc.
My experience has not been great I could barely leave the house at one stage and was worried I’d have to give up even online work, even standing to do things like cook or have a shower were difficult.
I am now partially recovered so can stand a lot longer and walk decent distances again (goodbye mobility scooter, thank goodness). I am still working and have started to increase hours, things like standing in a supermarket queue are still tricky unless it’s one or two people moving reasonably quickly.
What has helped?
Didn’t get prescribed any specific meds
Have experimented with herbal medicine (mainly stuff to support nervous system e.g. oatstraw, passionflower, liquorice root to boost blood pressure / do not take if you have high blood pressure)
Freaking expensive “whole food” vitamins
Acupuncture once a week now down to fortnightly
Exercise programme initially rowing machine then walking - what really helped was a walking stick plus a rucksack that converts into a chair - so can stop/ rest/ phone for collecting if feeling dizzy or faint)
Lots of rest (crafts, avoiding stressful things like too much news or even allowing stressful thoughts, early nights, naps)
Anti inflammatory diet
In the early days lots of electrolytes drinks (liquid iv)
Lots of sea salt
Endless Epsom baths
Lots of prayer, patience, gratitude and focus on the here and now
Very lucky to have supportive family and friends
Still a long ways to go but just posting this update in case anyone out there is in the really bad phase and struggling to see a way forward, stay hopeful and keep going, some recovery is possible and hopefully more to come
Best wishes all