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.
Did the ER doctors say anything useful? Or do you have follow-up coming on with your doctor? Now that everybody is alerted to this situation?
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.
I am so sorry to hear about this.
What horrible torture. I hope you will find a doctor who will treat this effectively right away, because repeated episodes like this cannot be doing your beleaguered system any favors...
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.
It also seems akin to toxic shock, so I wonder if you have staph or strep in the gut?
This is common in ME. It might be time for a comprehensive GI panel (the kind where you collect your stool for three days) for parasites and bacteria. The symptoms are not too far from dysentery or giardia either, so the GI panel sounds like a really good idea IMO. I had one from DiagnosTechs.
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.
Something a bit similar happens to me, but I don't think my symptoms are quite as severe as yours. I do get the SEVERE (sometimes doubling over and yelling) abdominal pain and diarrhea attacks, but probably not as often as you do. I have problems with the sigmoid colon swelling but I do not have ulcerative colitis or Chron's disease or any other pinpointable problem. Sometimes I also vomit when this happens. I have learned to take a bowl with me to the bathroom just in case. However, I can usually hold it until I get to the bathroom. But, when I vomit I do "pee my pants" all the way (emptying most of the bladder), so I always do the bowl and the toilet at the same time (this is gross, sorry). However, I have other problems with my bladder that I have had for years. These episodes usually last anywhere from a half hour to three hours. I abuse Immodium and take it way to much. The gastroenterologist says this is very bad as it can mess with the flora of the intestines. It is hard to stop doing this, however, because I just want relief. Most of the time I am constipated (this is without the Immodium) or the feces don't move at all through my system. And then I will go through attacks of the diarrhea and abdominal pains for a few days or more and then back again to everything getting stuck at the turn before my rectum for several weeks. (more severe then IBS) I have tried Align and Sacchrimysis Boldaris (probably did not spell that right) and yogurt and acidolphus etc. and nothing has worked. I also cannot pinpoint a specific food. I have tried the elimination diet and did not notice any difference in the way I felt or reactions I may or may not have to food.
...
I am reading over your posts again. I don't think my issue is even near the same. I do sweat and the pain is bad, but I think mine is caused by a severely swollen sigmoid colon for whatever reason.
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.
Dainty, have you ever been tested for stomach cancer? Some of the symptoms match up.
One more thought. I know someone who has Ehler's Danlos Syndrome, FMS, and CFS who became allergic to protein and had similar symptoms (gastrointestinal). The pecan/butter honey reminded me of this. This poor woman can't eat much of anything anymore.
5 Causes of reocurrent diarrhea and loss of bladder control
http://www.freemd.com/s2/0974/accidental-loss-of-bladder-control-recurrent-diarrhea.htm
Number one is menapause. Don't believe that one.
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.
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.
Dear Dainty,
I just sent you a private message with some thoughts about potatoes. The more I think about it, the more I think you'll find it to be interesting reading, if not perhaps helpful. I know it seems horrible to suggest someone so limited in foods she can eat consider that one of them might possibly be doing harm, but just in case you weren't aware of the solanines in the nightshade family of vegetables, I thought I'd copy this email a friend sent me two years ago, about their involvement with pain, joint and gut symptoms.
Especially the part about eating potatoes building up toxic levels of solanine (a neurotoxin) over several months, and maybe the thousandth potato causing symptoms, I thought you might find useful. I noticed you sent me an email a few days before the GI episode, stating you were having alot of pain, too, which I thought could indicate you wre having a buildup of something otxic to the joints.
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.
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.
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!
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
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...
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.
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.
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.
Yes, Rich's post struck me in that way, too.
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 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.
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.
Thank you.
Aaaaand thank you Glynis, Timaca, and Enid. Love you all!
