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Really Gross - But Please Bare With Me On This


louloutinks
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Hi all

Have only been dx'd with pots a couple of weeks but have had symptoms for a long time.

The question I have to ask is about changes in bowel habits....my diet has not changed at all but my bowel habits have.

I am really embarrassed to ask this on here but here goes..... :ph34r:

my poops are so heavy and large and guaranteed they block the toilet every time - so much so that I have to pour a huge bucket of water down to unblock it. I do not eat a great deal - just small meals and cannot understand why this is happening. I also get terrible pains just before I need to go that comes on suddenly. I have terrible pains whilst going too as you could imagine. I have also had to physically remove them as I just cannot pass them due to the size.

I know it is really gross to speak about but I haven't had the guts to go to my doctor.

Is this to do with the autonomic dysfunction??

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As I have been that way for most of my life, I thought it was normal. :o Once I had my gallbladder removed, my bowels were better for a time, but they are back to "normal" now. :( Colace helps soften them a bit. Me and warm prune juice are best buds! Unfortunately, the most regular for me was when I was on allergy shots; the combo of no BB and the systemic reaction created diarrhea for a day and made the rest of the week easier to bear. My doc wasn't happy when I told him, and took me off the allergy shots for fear of anaphylaxis.

Oh, and I can guarantee that I have a slow transit time: anything by mouth takes 2-3-4 days to pass.......don't ask.

Edited by firewatcher
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Hi Firewatcher thanks for your reply.

I haven't had this all life but it comes and goes - more comes than goes though!

I will have weeks of this then I will be ok for a couple then back to the bad stuff again. I have kept an eye on what I eat and there is no change in amount or type so could not understand why the changes....but now I knowI have pots I wondered if it could be linked.

I get spates of being really dizzy, tachy really high, stomach issues, neuralgia, pains etc then I get good times - well good for me now so not sure if that is all linked.

If autonomic dysfuntion is where the brain does not give the right signals to body parts, I just dont understand the fluctuations!

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Since this is relatively new to how your body works I am wondering if adequate water consumption may play a role. It almost seems your body is holding on to the water you consume and not releasing it into the stool. Increasing your water intake and charting the results over 2 weeks might give you some needed information.

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Hi everyone

thanks for the replies.

Very sorry to have to talk about such a personal subject but was hoping that at least on here some of you guys would know if there was a link between this and pots.

I am not on any medication at all - I have painkillers - naproxen - but do not take them as they do not work.

I have just upped my salt/water intake but had to stop due to hands swelling up.

Another embarrassing moment to follow....it is not necessarily rock solid, it is the size of it - I should be a rhino lol :blink: - that is where the issue seems to be. It seems like I am not digesting properly.

I do drink plenty of fluids daily - always have done. Just cannot understand it. Still eating fruit and veg the same as normal.

So is it to do with pots do you think as I was told it is becasue the brain is not sending correct messages to parts of body so wondered if stomach is included in it?

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Tinks - this might be something to take up with a gastroenterologist, particularly if you have persistent pain with your bowel movements. When my gut started working, the pain I experienced subsided after a month or so. And my bowel movements might be big, but I wouldn't describe them as rhinoceros droppings. You are sensing that something isn't right - follow your instincts, and think about seeking specialist advice.

Good luck.

Dianne

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I think this is a directly related to dysautonomia, remember our autonomic nervous system contols all of the smooth muscles in our GI tracts. The up and downs are just our autonomic nervous systems functioning, then not. I shouldn't sound so absolute, this is just what I see for me, we are all so very different. I have been like this all of my life and what works best for me is 800mg of magnesium and 12oz of prune juice, what makes things completly worse for me is fiber. I really hope you find something that works for you, and it's not gross.........it's just life as a POTSIE :D

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Hi Diane,

well this morning I received a referral letter to a gastro enterologist!! I didn't mention too much about my bowels at the app when I was dx'd with eds/pots. I said I only get pain before I need to go/constipation and bloating only after meals. I didn't tell them the nitty gritty I have here but they are sending me to one anyway.

Do you think I should accept it? I just feel that there must be more needy people out there than me - people who get more than constipation and pain!

And Todd, thanks for that - thats how I seem to be. Up and down - one minute BP levels even though it is still low, daily headaches ease off, bowels change etc then the symptoms all come back with a bang. I could wake up feeling fine - then an hour or 2 days later I will have all the bad stuff back.

What causes this irregularity of the brain functioning and then not functioning? Thats the part that I really do not understand about it all.

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Tinks - if your doctor feels you would benefit from a specialist appointment, then it might be a good idea to go with it. The change in your bowel movements might be caused by your dysautonomia, but it really might be a good idea to have it checked out. There will always people who are better off and worse off than you, but its important that you get the medical care you need, and your doctor is suggesting that you need to see a gastroenterologist.

You might feel embarrassed by your symptoms, but I'll bet your gastroenterologist has heard it all before (and then some) and will know of a range of possible causes and be able to suggest treatment options.

Re the irregularity of our brain functioning - most of us, after a while, are able to identify the things that aggravate our dysautonomia and the things that soothe it, and some people on the forum have identified, and are managing, the underlying cause of their dysautonomia eg there are people with underlying MCAD or Lime disease or common variable immune deficiency, who have found that by managing the underlying disease, their dysautonomia becomes more managable.

Dianne

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I'm afraid toddm1960 is right. This was the FIRST sign of Mack's major degradation. I actually took photos of his poops & showed his GI. He told me to get a new hobby :D Within a few months, Mack was bedridden & unable to eat anything without severe nausea & vomiting.

Extensive testing at Hopkins showed that his bowels were suffering from a neuropathy due to his autonomic dysfunction. He was DXed with small bowel dysmotility. His small bowel worked in fits and starts as his BP dropped & rose. Treating the NMH with florinef, salt, extra water, etc. AND the slowed bowels with liquid erythromycin has turned it around for him.

A garden variety GI will not have a clue as to what to do with you, I'm afraid. :unsure: Mack's testing included an antroduodenal manometry DURING a TTT to make that corellation.

My suggestion would be to try to treat your autonomic dysfunction (which will improve the bowels tremendously) AND consider a GI prokinetiic to speed things up in the GI tract. Liquid erythromycin or domperidone are both good options. Steer clear of REGLAN- bad drug!

All the best-

Julie

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Hi Diane,

I think after todays episode I should really go to see the gastro. Some nuts that I ate nearly a week and half (or more) ago have just appeared and it was not a flusher lol and very very painful. 7 attempts at the bucket later!!! :blink: Too much info but it may be of relevance?

Julie, you mentioned nausea, and the past few days after eating I have felt rather queezie and have had a watery mouth like just before you vomit. Saying that, I have found that I am also getting nauseous in the evening time for some reason. I have also been getting quite bad vertigo to but that is separate from the nausea.

Thank you all for being so accepting of me talking about this and not judging me on the graphic detail. Do you think I should mention all this to the GE? The GE I will be seeing is a specialist at the London Hospital that I was diagnosed at so I should think they would be thorough.

Thanks again ;)

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Tinks-go see the GI doctor. Don't be afraid to tell him or her it all. The ones I see at the Cleveland Clinic were very empathic and got me on the right tract with medications for both constipation and for Gastroparesis. I had severe constipation with bloating and pain, which my Neurologist @ Cleveland Clinic stated that it was from my autonomic neuropathy-another words all the nerves in my body are damaged and all signals from the brain are slowed way down so food and waste products move very slow to not at all through my system. When I would finally have a bowel movement after not going for a week, more like a big dump (going with continuous flushes of the toilet to get it all down), I would be completely worn out let alone having a bottomed out BP. The GI doctors put me on a regimen of Miralax 1-2 capfuls a day to get me going along with drinking 1-2 liters of fluid a day. It worked beautifully after about 4-5 days with me now only using Miralax 1capful 1-2x week. I have bowel movements smaller, softer and more often, but it beats being constipated.

The GI doctors also fixed my Gastroparesis (nausea, bloating, pain and feeling like I would pass out with eating). They put me on a regimen of Domperidone 20mg before meals and at bedtime (I get this medication from Canada) and had me see a Dietician to get me on the right diet; low fat/low fiber because I have Diverticulitis too. I also purchased a good book by the Calorie King, "The Fat & Carbohydrate Counter". The Neurologist has me on Mestinon 60mg 3xday which also helps with motility. Between the Domperidone, Mestinon, being on a low fat/low fiber (eating small meals) and using the book, I have no more symptoms of bloating, nausea, etc...from eating. I am actually enjoying meals and even eating out again. I have even gained 4lbs in about 3 weeks after a 30lb weight loss in 10 months.

So I say again, Go see the GI doctor. Good Luck & keep us posted.:)

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Dear Tinks,

You will find that gastro and dismotility issues are the rule around here, not the exception! A lot of us have issues, either with nausea/vomitting, constipation/diarrhea, abdominal pain and cramping. Generally speaking, we're a pretty tough bunch to offend! :P I wish I could tell you an easy answer, but I can only offer sympathy! I would strongly encourage you to share any and all of your symptoms with the specialist. They will probably ask you about color and unusual smells, they really need to know everything. I understand being uncomfortable, I am rather shy myself and talking about my bowel habits in graphic and minute detail horrifies me more than I can describe. But it is all really pertinent information, and will help your doctor to evaluate you. Hope you have a good experience, and make a mental not of your bowel habits and what you have been eating lately. They will ask, it helps to be prepared!

Sandy

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  • 1 month later...

I know two people who do not have POTS that have this same problem. I don't think it is related to our illness. No fun though, and the hole in the toilet is not big enough, so one guy I know has an outhouse he uses for that specific reason!

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'I just feel there are more needy people out there....(worse than I)'

Bless your heart - Truly though there is absolutely no one more important or worthy of full investigation of symptoms than you. Even if you had to wait a year - and the appt. ended up only being five minutes long - it doesn't matter - you my dear are utterly deserving of that appointment and if you are in agreement with the notion - go for it and let any guilt about it fly out the window. This is YOU time - seriously - I mean that. There is nothing 'little' about constipation - even garden variety. Anytime there's a change in bowel habits - it's worth noting and monitoring - as a nurse I know this. You deserve to feel your best and have your body function at it's best - so let nagging doubts go - and get to your best self through investigation of concerns - you are worth it... so so worth it... I once told a Mayo clinic doctor about my thoughts of not deserving to be there with so many gravely ill patients needing services - and let's just say he very very gently and kindly told me to immediately let go of any such thoughts - I did and haven't looked back....

Constipation is almost always a question neurologists ask about - it's that important and that much of a symptom in neurologically based issues of some patient populations...

Fear not - and hopefully 'this too shall pass' more easily ;-) lol

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