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Acute G.I. episodes

Discussion in 'Gastrointestinal and Urinary' started by Dainty, Jul 14, 2011.

  1. richvank

    richvank Senior Member

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    Hi, Dainty.

    This is just horrendous, and I'm amazed that you can maintain your mental equilibrium when you have this history and know that you are basically carrying a time bomb.

    I think Wayne is correct in suggesting neurological involvement. In particular, the parasympathetic nervous system must be involved, because it is the part of the nervous system that controls the actions you have described. Part of the signalling during these episodes, especially for the vomiting, must be carried by the vagus nerve, as Wayne suggested. However, I suspect that more of the parasympathetic nervous system must be involved, because the vagus nerve does not serve the lower part of the colon, the bladder or the urinary sphincters. These are served by pelvic sphlanchnic nerves, which emerge from the sacral (lowest) part of the spinal cord. In order for signals to be sent to both, I suspect that they must originate in the medulla (lower part of the brainstem).

    I think your best bet would be to consult with a good neurologist, preferably one at a university hospital. Hopefully they would start with an MRI of the brain, including the brain stem.

    As a non-neurologist, that's about the best I can do. I hope it helps, and that you can get relief from this torture.

    Best regards,

    Rich
  2. warriorseekspeace

    warriorseekspeace

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    Yes, Dainty, I agree with what Leela says about having the GI panel. That sounds absolutely essential right now. I hope you can get a really caring doctor to do everything necessary to find out what is causing this. It does sound like some type of infectious agent. I just mention about the potato solanines, in case they can't find anything, and you're left to try your own changes.
    Best wishes. You are in my thoughts and prayers.
    WaSP
  3. taniaaust1

    taniaaust1 Senior Member

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    How truely horrific, I'd be so scared if that was going on. ***hugz***

    Ive only had one terrible incident with pain like you describe.. thrashing about on floor in it, screaming and then I went limp (while I almost passed out due to it all). That was when something went wrong with my bowels.. (doctor attended me on the floor and I had huge bowel spasms). I often wonder if my bowels almost twisted.
    Ive no idea if your pain is being caused just by your bowels or not, but you may want to consider it..could it be severe bowel cramps (they can cause vomiting too.. could your bowels be cramping so much they are almost twisting?). (the pain.. I would of never imagined intense pain could be as bad as that.. it was FAR FAR worst then the pain of having a baby). Pain itself and also vomiting can cause a person to loose control over their bladder.

    Im my own case the bowel spasm/pain and almost unconsciousness due to it.. was due to me not eatting for a while (so my system would of been empty) and then eatting a little ... and then that pain resulted. It was like my bowels over reacted to the food after they'd been empty for a while. (In my own case fortunately my issue stopped itself after a short while but I was left scared to eat for a time).

    Anyway, I dont know if you have a similar thing going on but i was just thinking about that incident i had in the past as your post with that pain description reminded me of it (It was nearly a couple of years back now, happened back when I was living with that doctor.. I may of posted about that incident here somewhere). You may want to observe the situation to see if its the "when" of eatting that is the issue eg does it seem to happen after you've had a longer break from food then normal, then had some as Im sure in my case that is what caused the one similar incident I had.
  4. leela

    leela Slow But Hopeful

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    You know we are so lucky to have people like Rich here to give us perspective...reading his emphatic post made me realize that all of us here have such a crazy high threshold for pain, bizarre incidents, all kinds of terrible private hells, and are so used to riding them out or going them alone, we often downplay a thing that is really urgent.

    Having read Rich's post I want to emphasize, Dainty, the importance of following up without delay with a neurologist and any other kind of specialist that makes sense. An ER visit is not enough and I am surprised they did not admit you or refer you out.

    Please please get high-quality care and make sure they know it is urgent you come in. Book with a Neuro, a Gastro, anything that can get this to STOP.

    I agree with Rich that you are amazing in your fortitude through all this--and I think that fortitude is something that we all know and recognize--and which caused us to respond with less urgency than, upon further reflection, I think is appropriate.

    We love you and look forward to hearing your progress in getting this terrible affliction resolved.
  5. Dainty

    Dainty Senior Member

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    Thank you for your replies, everyone! I appreciate all the hugs and concern and well-wishes. :) I'm doing a lot better now; recovery is still slower than previous episodes but today I can be upright and talking without noticeable abdominal pain and I can eat soup okay. I should be back to baseline in another day or two.

    Everybody (except EMS people) was already alerted to the situation, since this happens on a regular basis about 2-3 times a year with several months inbetween episodes.

    By the time the ER doc saw me the episode was over, and after listening to the history she seemed to recognize that she wasn't going to be able to help us figure out anything more. She just gave me an IV, made sure I was comfortable, and they did blood tests to check on my electrolytes. She was very supportive, said it was good that I came in, my caretaker and I seemed very knowledgeable and on top of the situation and just encouraged me to keep working with the doctors to figure this thing out.

    It was funny I told her one reason I've hesitated to come in at other times is because of previous bad experiences of being told there's nothing wrong with me and accusations that I want to be there, and she replied, "...and you just want to wring their neck". LOL! I wanted to hug her. :)

    That's part of what I'm thinking through right now, if the cause can't be identified before the next one hits, what the plan is for getting me through it? I do have some pretty strong painkillers and if I had managed to take them early on I think I'd have passed on the ER trip. As it was, while I did try to take some they are oral/sublingual and between the vomiting and attempting to drink electrolyte water and the writhing and weakness it was too little, too late.

    Ideally I'd prefer a set-up where someone could administer an IV at home and morphine as needed, that way I wouldn't have to worry about hydration and the pain would be bearable but I'd still get to do whatever I want. One problem with going the ER route is they don't want me drinking anything, and even with an IV in I was terribly thirsty. I think we'll be looking into what our options are; my doctors should have some ideas of what's doable.

    A comprehensive GI panel is what I completed a few days before this last episode hit, so it was good timing and should show any parasitic or bacterial infection. The collection was over 3 days and included saliva samples as well. Now we're just waiting on the results.

    So sorry you go through all that, Mya, what a nightmare. Yes, it's gross, but no need to apologize since everyone's already been warned that we're gonna talk about gross stuff here. :Retro tongue: Sometimes there's just no way around it when discussing medical issues. I can still remember the first time a doctor asked me how many bowel movements I had a day - I was mortified, my face turned bright red and I at first refused to answer the question. And now talking about such things seems as casual as discussing any other medical symptom; I'll even do so over a meal without qualms. How illness can change us!

    It sounds like you are constipated first and then go through these diarrhea attacks, is that correct? I don't suffer from constipation (thankfully!) and reading over what you've posted it does seem we may be talking about different issues. For one thing, my loss of bowel control is not a matter of not making it to the toilet in time, but rather having zero control whatsoever - I won't even know it's coming, and as it's pouring out of me I'm not using my muscles to push it out at all; it usually comes out from the pressure of heaving as I vomit but this time around the screaming was enough at times too. The loss of bladder control, for you, sounds like stress incontinence, as the pressure on your bladder makes you loose it. However for me my bladder emptied in between the vomiting. I distinctly remember that I wasn't heaving at the time; it just up and decided to empty itself. Impertinent little thing.

    Thanks for all the suggestions. I note that some of those causes listed are neurological. One thing to keep in mind is that these episodes always occur several months apart, so any potential explanation for them has to include reasoning on why they would be spaced out so predictably. The timing is so reliable that while in the ER my caretaker and I began joking about planning our activities around it, for example she's hoping to go on a cruise and now we can rest assured it won't happen while she's away. :D

    I had an upper endoscopy done about 6 1/2 years ago that came back as nothing abnormal; at the time I was not having these attacks but was suffering considerable reflux, and it was before my ME/CFS became severe.

    Thanks for the info, Warrior.

    As far as the increased pain goes, that was due to attempting to start up vitamin D supplementation again, which always results in a very distinctive form of body-wide pain that I don't experience at any other time. The level of severity correlates directly with the amount of vitamin D taken and ceases if supplementation is discontinued. While I do suffer chronic unexplained pain that can be quite intense at times (I have a Fibro Dx too) I have not noticed an increase in that pain before these episodes.

    Aww, thanks Rich. I think severe Dysmenorhhea helped prepare me for that aspect of this issue. I knew there had to be a purpose for it! :rolleyes:

    Thanks for the input, Rich. This whole concept of neurological involvement is something I'm still trying to wrap my brain around (pardon the pun). I did have an MRI done December of '07 that came back as normal. I think it would have included the brainstem, because the main reason for it was to rule out Chiari Malformation. I have heard, however, that reading MRIs can be more of an art than a science, and what's "normal" according to one specialist might be "abnormal" to another...which is the point at which I tend to throw up my hands in defeat. Until, of course, there's a compelling reason to re-visit the whole thing...

    We already talked in chat but just for the sake of everyone else I wanted to post that I'm pretty sure it's not the case with me, since we now know this was coming on for a week and especially the 2 days before. Also, I avoided food completely for 28 hours after the incident and did not have significant issues upon re-introducing it.

    It does sound like the pain is similar, though. So sorry you went through that. :(

    Yes, Rich's post struck me in that way, too.

    I appreciate your concern, but I think you may have misunderstood the care that I am under and/or the manifestation of this symptom. There would have been no reason to admit me, because while I'm understandably a little weak and sore afterwards the episode really does end totally and completely, and I don't see any return of these kinds of symptoms for several months. My primary M.D. was fully informed of the situation months ago, and under the suspicion of parasites ordered the GI panel and recommended I take it as close to just before the next one hits as possible, which I've now done. It can't happen faster than that. I'll also be seeing my Fibro specialist on the 1st and plan to mention this issue during the appointment to see if he has any ideas, though it isn't within his specialty.

    I do wish I had involved my doctors earlier. The two main reasons I didn't is because each time it happened I'd have a new idea as to what the cause might be, and then I'd spent the next 5 months or so eliminating that factor until the next one hit and I'd again come up with another idea of what it might be. Remember, GI stuff is usually associated with something taken orally so there was food, supplements, and meds that were all suspect. The episodes were also less severe back then, so it basically would have been telling them, "I sometimes get abdominal pain, vomiting, and diarrhea that lasts for up half an hour, and I think ____ might be the cause." It just didn't make the priority list. 3 episodes ago my final idea was nixed and it was bad enough that I mentioned it to my then naturopath, who had no ideas. I was planning at the time on telling my PCP then but forgot during the appointment. 2 episodes ago we discussed it at length with my PCP and wheels were set in motion to begin testing, and, again, the panel taken just before this last episode is going to tell us a lot.

    So, I assure you, I am receiving proper care. :Retro smile: I am confident that I will be referred as needed to get this figured out.

    Thank you. :)

    Aaaaand thank you Glynis, Timaca, and Enid. Love you all! :hug:
  6. ahimsa

    ahimsa Senior Member

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    Dainty,

    Just a quick note to send more :hug: HUGS :hug: and to thank you for posting an update. While going through all this stress of these attacks (the symptoms are bad enough but not knowing when they will happen or why they happen? OMG!) it is amazing to me that you are able to stay calm and even post an update here.

    I hope you get to the bottom of this problem soon. I'm with all the others in saying that it sounds terrible. I hope I did come across as taking the problem lightly in my earlier post. My messages sometimes end up coming out in an almost "stream of consciousness style" rather than something more organized....which means not everything I'm thinking makes it into the message.

    Finally, let me just say that the way you are dealing with these problems is pretty amazing! (wait, did I already say that? ;) )
  7. leela

    leela Slow But Hopeful

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    Hi Dainty,

    You're right, I did! Chalk it up to that ever-lovin' brain fog/inability to concentrate.

    But in the end, I'm glad I did get it wrong, in the sense that you *are* getting good care, and *do* have a relationship with the rhythms of this awful thing:Retro smile:

    I'll take the opportunity to follow the lead of other friends here, and offer more hugs, more support, and more admiration for your inner super-hero ! :hug::victory::hug:
  8. Timaca

    Timaca Senior Member

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    Dainty~ I read an article in this month's AARP magazine entitled "What to do when your doctor doesn't know." The man featured in the article had symptoms very similar to yours. He ended up being diagnosed with celiac disease, even though he had tested negative to it before. A DNA test helped to find his answer. Here's a link to the article: http://www.aarp.org/health/conditio.../what-to-do-when-your-doctor-doesnt-know.html

    I know your diet is very restrictive, but perhaps you are getting gluten some other way....lip stick, lip gloss, toothpaste, mouthwash, over the counter or prescription meds for example.....

    This may be of help to you when they accept applications again: http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

    This may also be of help to you: http://inod.org/default.aspx

    Best, Timaca
  9. Dainty

    Dainty Senior Member

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    Well that was unexpected.

    My GI episodes seem to have broken pattern - we're more confused than ever.

    My system has felt "off" since the last episode, I suspected it was either the anti-nausea medication given me or the fact that this episode didn't fully run its course. Whatever the case, things have been a bit iffy but it was a couple days ago when I noticed I was feeling similar to the way I felt before the last episode (a pre-symptom is called a "prodrome", I've learned). I told myself it was nothing, but a day went by and it was worse I had to consider it. Avoided food for a while, ate again and the prodrome worstened to beyond a doubt - but since it did not trigger an episode I figured as long as I avoid eating again for a while I might be okay.

    A few hours later, when on a drive with my caregiver, out of nowhere neurological symptoms hit me. I first noticed that I couldn't concentrate on the conversation, and about 30 seconds later I was having difficulty holding my head up and my eyelids open. I asked her to pull over and was surprised to hear my speech slowed and slurred. By the time the car was turned around I could make only feeble attempts to lift my head, could barely speak and the use of my arms was considerably impaired, not by fatigue but by such a weakness that extending myself further was literally impossible. It felt exactly like a milder version of what happened for a few minutes halfway through the last GI episode.

    I kept expecting it to pass, but it didn't. We arrived home and I had to be carried in. I could move my legs a little but was incapable of re-positioning them in bed and had to have it done for me. I couldn't turn over. Speaking was slow, slurred, and required rest periods as each word was at my limit. I couldn't reliably move my hand a few inches. I kept thinking I ought to be able to move more, would attempt it, and would be surprised all over again at my body's non-responsiveness. It was surreal.

    Slowly, my body began to recover (taking a routine dose of heparin may or may not have contributed). I slept, and about 7 hours later I could talk complete sentences, though speech was still slowed and with a slight slur, and I could sit up for a bit. I was capable of closing my hands, but not of squeezing them closed. A few hours later my speech was only slightly slower than normal (this while working hard to talk normally) and I was well enough to get on the computer a bit.

    Currently I'm fully recovered, as far as I can tell, but things are still going on with my gut so I'm not sure what's around the next corner. I didn't eat for nearly 24 hours to try to get this very distinct and uncomfortable prodrome to go away so I could be certian another episode won't hit soon, but when I had half a cup of beef broth not too long ago my gut began acting up again. I'm baffled.

    One of my doctors has prescribed anticholinergics to take in order to supress hyperactivity of the vagus nerve. We dont actually have those yet, since the appointment was only 2 days ago, but have been in contact with the office to update them on the new situation. I have an appointment with my primary doctor on Monday who has the results of my GI panel; unfortunately nothing earlier was available.

    So I wait. My plan is to eat as little as possible until things settle down again, ideally just beef broth. The hunger is making me weak and lethargic and brain fog is a lot worse for it, but otherwise I'm okay and hopefully from here on out that's the worst I'll be dealing with until we get some answers.


    Thanks for the links, Timaca. With regards to gluten that was one of my primary suspicions early on, since I do have celiac, but there's just nothing I can find. All meds I take are compounded, I brush my teeth with salt, I use ground cloves for mouthwash, I put coconut oil on my lips...there just aren't many variables in my life, which makes it quick to rule out things but frustrating when it's not the answer.
  10. madietodd

    madietodd Senior Member

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    AAARRRGGH!!!! I'm so sorry this keeps happening to you! I hope hope hope that your doctors are finally on the trail of a solution with the new medication and the GI results.

    I'm deeply impressed by your graciousness under fire. Somehow, you deal with this **** in your life and then come on here and share your kind and harmonizing nature with all of us. I don't know how you do it!

    xoxoxoxo Madie
  11. taniaaust1

    taniaaust1 Senior Member

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    That incident sounds like a bad ME crash with symptom complex happening.... sounds like you recovered quite fast thou for a extremely bad crash, one wouldnt expect that.. how confusing.

    I do hope you work it out and find out what is suddenly shifting. (something attacking you neurolgically? I used to feel like at times something was attacking me from the inside or like something would like suddenly switch on or off).

    POTS manifesting differently???? I wonder if you are upright when these strange episodes start.. i assume you have been upright for eating.. any chance the issue could be being brought on by orthostatic things.

    best luck at avoiding any further issues.
  12. Timaca

    Timaca Senior Member

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    Dainty~ I'm so sorry you are going through this. I hope the doctors can figure it out soon.
    Hugs....Timaca
  13. leela

    leela Slow But Hopeful

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    Dainty, giant warm hugs to you. So sorry you have to keep going through this.
    Have you seen a neurologist yet? I had another left-field thought: could you have your doc phone Dr. Chia to see if
    he has patients with these symptoms? Since it seems neuro/GI, maybe Chia's gut experience could shed some light.
  14. richvank

    richvank Senior Member

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    Hi, Dainty.

    I, too, am really sorry about what continues to happen to you. This latest episode sounds even more neurological to me. I still want to encourage you to see a university hospital level neurologist. Maybe an EEG would show something, or other types of brain scans. There are several types available now, including SPECT, functional MRI (BOLD), etc. I'm concerned that there might be a brain tumor that is causing these episodes.

    Best regards,

    Rich
  15. SOC

    SOC Moderator and Senior Member

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    Dainty, I'm so sorry to hear about these awful bouts your having! You have my utmost sympathy.

    I second Rich's suggestion that you see a neurologist. I'll go even farther and beg you to get a thorough neurological workup.
  16. Dainty

    Dainty Senior Member

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    Thanks for the suggestions, everyone. For now I'm going to wait until Monday to see if the results from the GI panel holds any answers and talk with my primary doctor about where we go from here. It feels like it's primarily a gut issue, since there is forewarning of gut problems for days beforehand including bloating, burping, and a very distinct abdominal discomfort. No doubt something is causing serious neorulogical problems, but I'm currently leaning towards a theory of something in my gut resulting in a neurotoxin of some sort. With my very, very severe MCS, the tiniest amounts of toxins can have serious effects.

    It's not that I'm avoiding seeing a neurologist, it's just that it makes sense before we go hunting down the specialists to wait a few more days to get some basic results that may hold the answer. :)

    In the meantime, my strategy of barely eating appears to hold off a full-blown episode but so far this isn't resolving. To re-cap: I had the prodrome of distinctive abdominal discomfort that indicated an episode would happen the next time I ate, I did not eat, the neurological palsy thing happened, and now...I still can't eat! This is uncharted territory for me, since before there would be the episode and then I would return to normal, and I hoped avoiding that trigger would eventually let things return to normal on their own. But now even small amounts of liquid foods are making me quite ill, and I have to wonder if the episodes are my body's way of cleansing a problem and if I'm just making it worse by refusing to allow that to happen....similar to the way as a kid I once refused to drink liquids when ill in order to avoid vomiting.

    Monday is the day. Until then I'll keep trying to muddle through this. Thanks for the support, everyone. :)
  17. LaurelW

    LaurelW Senior Member

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    I hope Monday brings some kind of resolution for you. I'm so sorry you're going through this, Dainty, and I hope for understanding of the cause and a way to get well.

    :balloons:
  18. stevenski

    stevenski Guest

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    Good luck for Monday , Dainty; u have been through hell. All the best, Steve Benson:)Stevenski")
  19. taniaaust1

    taniaaust1 Senior Member

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    hoping you'll get your answers on Monday.
  20. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I hope you find some answers or can see another doctor very soon. HUGS!!!!!!!!!

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