Hi, Sarah. I’m glad you’re going to see a specialist. In the meantime, have you really properly ruled out dehydration as the cause (or an important contributor)? J-pouchers are commonly underhydrated, because it takes some work to avoid it. Do you get the symptoms even when you’re peeing plenty of nearly-clear urine?

How much water do you drink per day???

Sarah, I have not heard of this association, but it does not mean it is not possible. I was thinking of the same thing as Scott, in that while you may not be technically dehydrated, you may tend to be on the low side of hydration, which IS common post colectomy.

There are so many factors that play into blood volume and blood pressure, as you know. I presume you have had studies to rule out anemia, electrolyte imbalances, kidney, liver, and heart problems as the cause.

It is entirely possible to to have autonomic nervous system issues that can cause periodic vasodilation and low blood pressure. Perhaps your surgery simply created the conditions for this to be revealed. Again, the cause of this can be myriad, from adrenal/pituitary disorders to diabetes, or other metabolic disturbances. I am glad you are seeing a specialist, who will be best equipped to get to the bottom of this. You probably have researched this, but here is a good link:  https://rarediseases.org/rare-...ostatic-hypotension/

I hope you get some answers, but be prepared for the all too common “idiopathic” diagnosis. Even if they determine the surgery was the cause, it is not something they can undo. So, hopefully, you have a treatable underlying issue. Good luck!

Jan

@Scott F posted:

Hi, Sarah. I’m glad you’re going to see a specialist. In the meantime, have you really properly ruled out dehydration as the cause (or an important contributor)? J-pouchers are commonly underhydrated, because it takes some work to avoid it. Do you get the symptoms even when you’re peeing plenty of nearly-clear urine?

Hello Scott!

I believe my doctor has ruled it out – I have had blood tests that would show up dehydration and electrolyte imbalance several times over the years and results were normal.

Urine is normal colour and extra oral fluid intake (water or electrolyte drinks) doesn't affect the symptoms.

Apparently low blood volume is a bit hard to detect. You can recogise it through the symptoms but to know for sure you need a more involved test like this:

https://my.clevelandclinic.org...blood-volume-testing

I suspect that I have dysautonomia (trouble regulating blood distribution) and low blood volume – they commonly occur together – but I'm still waiting for the specialist.

Looking back to my childhood, it's possible that I've always had a mild tendancy towards orthostatic intolerance/dysautonomia. The j-pouch operation may have added to this through imposing the additional strain having to get all my water through the small bowel. Or maybe it is simply aging.

Hope you are going well.

Cheers, Sarah

@Jan Dollar posted:

Sarah, I have not heard of this association, but it does not mean it is not possible. I was thinking of the same thing as Scott, in that while you may not be technically dehydrated, you may tend to be on the low side of hydration, which IS common post colectomy.

There are so many factors that play into blood volume and blood pressure, as you know. I presume you have had studies to rule out anemia, electrolyte imbalances, kidney, liver, and heart problems as the cause.

It is entirely possible to to have autonomic nervous system issues that can cause periodic vasodilation and low blood pressure. Perhaps your surgery simply created the conditions for this to be revealed. Again, the cause of this can be myriad, from adrenal/pituitary disorders to diabetes, or other metabolic disturbances. I am glad you are seeing a specialist, who will be best equipped to get to the bottom of this. You probably have researched this, but here is a good link:  https://rarediseases.org/rare-...ostatic-hypotension/

I hope you get some answers, but be prepared for the all too common “idiopathic” diagnosis. Even if they determine the surgery was the cause, it is not something they can undo. So, hopefully, you have a treatable underlying issue. Good luck!

Jan

Hello Jan,

You are spot on as usual – I've undergone pretty much all of the investigations you mentioned (or will be undergoing them if specialist concurs with this line of thinking).

It has been a long road to try to find out what my symptoms might be. After having things worsen over 15 years, I finally stumbled onto a description of POTS, and noticed I have many symptoms in common, but not tachycardia. So then it seemed it may be autonomic dysfunction, possibly with low blood volume as well.

I agree that the lack of a colon may have exposed a mild autonomic deficit that I already had. I will probably never know, but it seems that orthostatic intolerance / dysautonomia symptoms can be treated even if the cause is unknown.

The main options seem to be volume expansion and compression garments. I have tried the "at home", non-drug interventions under my GP/PCP, sadly without success, so it will be up to the specialist to possibly prescribe a volume expanding medication or compression garments. I also need to try raising my bedhead, but can't manage that at the moment.

Thanks as always for your helpful input and kind thoughts.

Sarah

P.S. @Jan Dollar, I wish doctors had the same grasp of this that you do! My regular GP/PCP retired (hope she is having a well-earned rest), and I can't seem to get onto anyone else who can get their head around it. Of course, it doesn't help that I am not a typical case. The more-experienced GPs I've been recommended to locally aren't taking new patients. So frustrating. I may have to travel to Melbourne (2 hrs away) to get onto a good GP while this is sorted out. I am trying one more tomorrow – he will be the sixth at the local practice! If he can't get to grips with it then I will have to drive to the city.

Thanks Sarah. Where is Dr. House when you need him to solve our mysteries?

But, seriously, sometimes we just have to muddle through and cope as best we can with our own ingenuity. Maybe someone will come along with the same troubles as you.

Jan

@Jan Dollar & @Scott F

I have been thinking over your reminders about making sure dehydration is not a factor. I am seeing a new doctor (PCP/GP) next week (had to postpone) and I will go over everything with him again from the beginning, and I will ask him exactly what blood tests I have had and whether they do definitively rule out dehydration.

I may have made unfounded assumptions over the last few years.

For example, I had assumed that if taking an electrolyte/rehydration drink does not help with the symptoms, then that means dehydration is ruled out as a cause, but I realised that I've never confirmed that with a doctor. Maybe it's more complicated than that.

I have responded (sporadically) to volume expansion treatments which is why my endocrinologist ended up pointing me towards volume depletion and/or dysautonomia after she investigated endocrine causes and couldn't find anything.

Thanks again for your thoughtful replies. I am going to see a cardiologist locally soon in regards to the presyncope, fatigue and postprandial symptoms. Hopefully he can cast some more light on this as to whether it is an autonomic or blood volume problem.

I will keep muddling on!

@Kushami posted:

@Jan Dollar & @Scott F

I have been thinking over your reminders about making sure dehydration is not a factor. I am seeing a new doctor (PCP/GP) next week (had to postpone) and I will go over everything with him again from the beginning, and I will ask him exactly what blood tests I have had and whether they do definitively rule out dehydration.

I may have made unfounded assumptions over the last few years.

For example, I had assumed that if taking an electrolyte/rehydration drink does not help with the symptoms, then that means dehydration is ruled out as a cause, but I realised that I've never confirmed that with a doctor. Maybe it's more complicated than that.

I have responded (sporadically) to volume expansion treatments which is why my endocrinologist ended up pointing me towards volume depletion and/or dysautonomia after she investigated endocrine causes and couldn't find anything.

Thanks again for your thoughtful replies. I am going to see a cardiologist locally soon in regards to the presyncope, fatigue and postprandial symptoms. Hopefully he can cast some more light on this as to whether it is an autonomic or blood volume problem.

I will keep muddling on!

How much water do you drink???

Sarah, determining dehydration does not require blood tests or complicated studies. Basically, if you are consuming enough liquids that your urine is light yellow or almost like water, you are hydrated. If your urine is very concentrated, low volume, and you urinate infrequently, you are dehydrated. Also, hydrated skin will snap back quickly when you pinch it from your arm. Dehydrated skin returns rather slowly. This is all stuff they teach in basic nursing school classes. You can learn a lot by observation without fancy equipment. Working in an ICU it was too easy to stare at the monitors and not really look at the patient.

So, if you want to rule out dehydration, you don’t need to count how many glasses of water you drink in a day. Just pay attention to the amount and quality of your urine. When you have your symptoms, note whether you have been keeping your urine dilute that day.

Many of us trend toward being dehydrated, so we have to work at it. Thirst is not always a good method.

Jan