June 8, 2012 at 1:18 pm #215
Hello my friends,
Is anyone here going through horrible constipation, slow gastric emptying, maybe with pain on the lower right side of their abdomen (which may be the ileocecal valve)? Of course, I went through that, alternating with diarrhea, but at my last bout of HORRIBLE constipation (and the GI doctor was embarrassed to say it was “Irritable Bowel” because he knew, that I knew, he was wrong. That is a “non-diagnosis” in my book, I knew once again, it was in my hands to figure it out.
Long story short, I worked on it from the scientific view (based on poor vagus function), and now it isn’t an issue for me — ever. I “fixed it” in about 2-3 days, with one or two over the counter meds. Now I’d like for someone else who is suffering with this, and willing to try a medication they can get at the drug store (we’ll rule out contraindications, etc.), to see if it was just a fluke. I don’t think so, but before I start an official clinical trial, it would be nice to see a couple of other people try it to see their response, too. I shared this with my urologist, who thought it was brilliant *smile*. He understands the science… If you’re interested, please email me at “volunteers@Prettyill.com” and we’ll chat, OK?
This is so exciting, because we are not the only people who suffer with this, by a long shot. What EDS patients go through is all-encompassing (preaching to the choir), and what we learn can help so many others. WHO”S WITH ME?! 🙂 DianaJune 8, 2012 at 2:33 pm #2369PrettytiredParticipant
That’s ME!! Some days it doesn’t bother me at all, other times I go through spells and will wake up in the morning with a full belly of last night’s dinner. That fermentation is not good!! I’m emailing you now Dr. Diana :).June 8, 2012 at 4:38 pm #2370
That’s ME!! Some days it doesn’t bother me at all, other times I go through spells and will wake up in the morning with a full belly of last night’s dinner. That fermentation is not good!! I’m emailing you now Dr. Diana :).
Thanks so much, my friend! I’m eager to talk you through this and see if you get the same immediate relief that I did. Anyone else? This is such a lousy symptom to have and eliminating it (pun intended. ha.) is wonderful. I just hope this isn’t a fluke, but science tells me this should work, and it worked for me. Until we can correct the overlying cause, it may just be one of those things we treat for a while. I went 11 days without “going”, and was sooooo miserable. I tried EVERYTHING (I also had 5 MONTHS of severe diarrhea, too. Nothing worked on that, either!). We may not have to suffer with this, guys. Fingers crossed! 🙂 DianaJune 8, 2012 at 6:38 pm #2371ourfullhouseParticipant
Are you saying that it works for the diarrhea also? I don’t get constipated, even on pain meds, but suffer daily with the diarrhea. Sometimes I get a break from it and am just “normal” for a couple of days before going back to the diarrhea again. I have also noticed that the worse my hyper POTS symptoms are, the worse the diarrhea is.
Also, my twin 12 y.o.’s suffer from chronic constipation, but not much belly pain with it. We have tried dietary changes without any change, tested for celiac/wheat intolerance, they are fine, etc. They go days without going and then get tears and blood when they go, etc. Doctor keeps saying just keep giving them laxatives (Miralax) but this has been going on for 4+ years. I tried increasing vit C and it just gave them diarrhea. So wondering if they would be candidates or not? (They are unoffically HEDS, based on me having HEDS. They have as many or more signs as I do.)June 8, 2012 at 6:52 pm #2373Give My Daughter the Shot!Participant
Ok, I’m not having constipation but the polar opposite at this time. I don’t weigh enough to have diarrhea so badly that I can’t control it. Also, I can’t leave the house if I have to fear having an accident. We missed Easter festivities due to pants pooping, on my part and not the part of my youngsters. Gross, I know – I really know. I was diagnosed about 20 years ago with IBS -irritable BOWEL! – no thanks. I blew that one right off (no pun intended). No successful, cute, happy, outgoing young person (of dating age) wants any sort of bowel issue – believe you me! When it would flare, over the years, I would discreetly search the internet for suggestions on how to improve the issues at hand via diet, etc. It wasn’t something that I would have considered to be anything more than an inconvenience nor was it anything that I wanted to have in the first place – meaning I would have avoided giving it any consideration at all if remotely possible.
I was more-or-less ‘fine’ 6 or 8 years ago, well maybe 10.
Fast forward to now: I’m trapped on the potty often and it certainly affects my abilities (not that I have many abilities anyway). I sure don’t need this problem since I’m ‘bogged down’ beyond comprehension. Now, a step further into having to worry if/when I’m going to poop my pants?! This has started over the past few months and has not been everyday (except the last few). It’s random too. I think I am in so much pain, nausea, suffocating exhaustion all day everyday that I can’t even tell if I am sick much less in some additional pain or having more problems. If I was at 10% of my normal function, this problem has got to cut that number in half. You’ve gotta be kidding! Ugh, what a life?!
Sorry for the ‘gore’. I am bloated also as well as having a lot of cramping. While you mentioned constipation as a primary, you’d also referenced diarrhea. Any suggestions for my current issue at hand? Please help me if you can. I’ve lost enough already and I don’t need to add this problem to my ‘stock pile’. I just want it to go away.
Thanks, Diana.June 9, 2012 at 2:43 pm #2380
Hi ourfullhouse and Givemydaughtertheshot,
Can we be gross? ABSOLUTELY!! I’ve been through it all. The lecture and press interview from ISNVD that is on my site? I had to wear a compression garment to suck in the distention. Ugh. a couple of days before that, I was on the potty about every 10 minutes. I asked a friend, “Am I supposed to wear a diaper to give this talk?” Jeez. OK, diarrhea first: are you or your kids who are affected on mast cell meds? What a help that was! Cromolyn, too? That’s important. There is another drug that took care of it for me, but it is by prescription, and I’ll need to set up a clinical trial for that one. Collecting names! 🙂 This one changed my life, really. It’s inexpensive and has almost no risks. It is (not unlike diamox) one of the “forgotten meds”. So sad, because OMG does it work well. Constipation: For the kiddo’s: What are their ages? I see no contraindications for them, but will need to adjust their dose down a bit (depending on their weight and age). As a child, I had some horrible constipation, and was quite familiar with my mom’s enemas. yikes. This medication is just replacing what our bodies are not making enough of, basically. And Oh, what a relief it is! (remember that commercial?). Let me know! Just shoot me an email, agree to confidentiality, and I’ll talk you through it. If you or your kids do as well as I did on it, I’ll start to work on a clinical trial (which takes forever and a day, BTW). Hugs, DianaJune 10, 2012 at 7:59 pm #2390jillMEnzParticipant
I’m not sure if my gut symptoms are the same.
I daren’t eat anything containing bran – it will constipate so badly -SO badly. The same is almost true of porridge. I can have it maybe once a week and have to make sure I ‘go’ if I have to.
My main problem is a kind of alternating situation though – therefore the IBS diagnosis.
The thing is that when I get an “attack” (mainly after eating), I have tremendous pain and I can hear the valves shunting food. Its like someone has just turned the system ‘on’ and whatever is in my gut – well formed or otherwise, is gonna get out. I can hear the upper valves gurgle the liquid stuff down, and then the lower bowel has to evacuate what is there that is ok, to let the deluge behind out! God this is so gross to describe! This whole drama , can take about 3 episodes on the loo – often with sweating and extreme agony. When its all done – i’m absolutely fine again. It doesn’t happen in any particular situation or with any particular food. It just seems like the gut decides for itself when its gonna have this hissy fit. It’s terrible if I’m at someones house or out at a public loo. My dear partner Al also gets the same thing, except he is less prone to the constipation side of things.
Shall I email you to be a volunteer Diana? Or is this not what you are talking about?
best JillJune 12, 2012 at 2:31 pm #2406
I wanted to thank everyone who contacted me about trying something different. I was INUNDATED! Wow, you guys are WATCHING! Thank you!
I have a couple of folks trying this, and I’ll know in a few days if we hit the proverbial nail. Fingers crossed, OK? I think it will go fine, then we’ll do an “official trial”. Sound good? Big, big hug, DianaJune 17, 2012 at 8:53 pm #2445
I’m not sure if my gut symptoms are the same.
Hi Jill, have you tried the basic mast cell medications yet (most of us start with double dose Zantac/Zyrtec and add Cromolyn or Ketotifen if we respond. What you describe sounds suspiciously like a mast cell reaction (speaking from one patient to another). “IBS” is a non-diagnosis as far as I’m concerned, Hon. It means the docs just don’t know what’s causing it! Will you let us know about the mast cell meds? Big hug, DianaJune 18, 2012 at 6:02 pm #2450BarbaraParticipant
Can we be gross? ABSOLUTELY!! . . . . . . As a child, I had some horrible constipation, and was quite familiar with my mom’s enemas. yikes. Hugs, Diana
This rings a bell!!! I had terrible constipation for years as a child, they said I had a ‘lazy bowel’. The enema’s in those days were warm water with lux soap flakes dissolved in them, poured down a thick rubber tube, through a funnel!! – Oh that was a memory I’d rather have forgotten. Years later I found they had suspected Hirschsprungs Disease – did anyone else have a diagnosis of this, by any chance ?
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!July 10, 2012 at 5:41 pm #2567IndiecParticipant
Hi Dr. Diana,
I have been dealing with this issue for over two years. First they said “Fibromyalgia”, second “IBS”, then “BFS”, “Meniere’s Disease”, the list goes on and on. After going through several neurologists, rheumatologists, My cardiologist now along with new Rheumy say “EDS”. I think they have known this all along and never said anything to me. I was born premature at 3 lbs. 6oz., had a heart murmur (went on to have two open heart surgeries one at 18, the other at 22)now they call if Tetrology of Falot. They had to redo surgery because the PDA and VSD and ASD all reopened. The ASD had to be replaced because it calcified. Dr. Denton Cooley did both surgeries in Texas. He told me that I would be luck to live past 48 or so because of my genetic condition…we always thought that meant my heart defect..He also wasn’t sure how I would heal. My scar is wide and thin. I was always told I was double jointed..could do the chinese split and put my head in my palms at the same time. Knocked knees, very veiny, stretchy skin, varicose veins at 15, bad stretch marks even though I weigh only 110 and at 9 months pregnant I was 122. I Can do all the tricks with the hands got a 7 out of 9 and Rheumy said the other 2 points maybe added because my knees sublux and do go back a bit. I had nose bleeds so bad it was like a period for awhile. Now my rheumy says I do not need to have a genetic blood test, because even if it is vascular they will treat me the same (have an echo every 6 months). My stomach issues have really bothered me and after going thru two gastrointerologists, I know have one who says I have GERD, Severe Gastritis and IBS. They checked my liver, gallbladder, kidney (I was born with only 1), lungs (say I have early emphasetamous changes – I have never smoked…I am on: Coumadin,Tramadol 200mg 1x, 400 Magnisium 3x, Evoxac (dry eye, mouth),Tizanidine 4mg 1x,zoloft 100mg 1x,pantoprazole 40mg 3x,Amitiza 2x (try not to take – it makes me feel like I am having a heart attack). I barely go potty. I tried once eating corn and 4 days later it showed up…My stomach hurts so bad right now on the right side below ribcage, sometimes it hurts so bad it wakes me up. Please if there is anything you know to help… Thanks in advance! ShelleyFebruary 28, 2014 at 4:29 pm #4911
Hi Shelley, You sound like so many of us! Honestly, I made the doctor rounds, too, and I was never able to get an answer, so I had to work on this myself… I’ll be releasing the medication soon, with an explanation of how it works. The science speaks for itself — you’ll be surprised that no one tried to do this before! It was after visiting the ER with horrible gastroparesis/constipation and no help with Reglan, that I knew I was on my own. Yikes. “Necessity is the mother of invention”, as they say! While you are patiently waiting for this (and I’m meeting with FDA consultants, manufacturers, about 4 attorneys — good grief), please be sure that you rule out the ‘regular stuff’. You may be surprised to learn how many of us have Celiac, diverticulitis or Crohn’s, for example, but go undiagnosed. Honestly, to rule out the ‘regular stuff’, I often will not tell my doctors about being hypermobile. Some are afraid of that diagnosis, don’t feel qualified, or are frightened away. Because I do not have any genetic defects of collagen that they’ve found yet, I’m not even certain that I should be saying I have “EDS”. That implies a genetic defect, right? What if some of my issues (and perhaps yours) are from acquired issues, and therefore are treatable? I believe this has been greatly overlooked as a possibility for us all. Working as fast as I can! Big hug…
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