I'm 41 yo woman. Have never had regular bowel movements my entire life. This runs in my mothers family. Whatever 'it' is. I've had my suspicions over the years, but as I tend to faint during episodes, I've always been too afraid to see a doctor about it, for fear of losing my license.
I apologize in advance, this will be all over the place, as I had a terrible episode 2 nights ago and probably got a mild concussion and am a little scatterbrained. It's Friday, but I thought it was Wednesday. Just lost a couple days, no biggie, lol.
Literally have had bouts of extreme abdominal cramping, profuse sweating (wear I remove all my clothing no matter WHAT bathroom I'm in), hyperventilating leading to rigidity and passing out. The earliest I can remember fainting from was about age 12, directly related to my awful period cramps. Passed out trying to get to my mom, who was loading the dishwasher. Only made it to the kitchen, where I landed on the corner of the dishwasher door, busting my head open. Mom thought I was being dramatic. She was a very private person back then and wouldn't discuss these things with me. I tried, but was shut down, so I came to believe it was 'normal'. She told me having babies would solve all those problems. Nope, made them worse.
These attacks continued through both pregnancies, sometime passing out, sometimes not. During my second pregnancy (at 5 months) I developed a form of rheumatoid arthritis. I opted for a partial hysterectomy at age 32 (again lying to the doc) in the hopes this would go away. Auto-immune diseases run in our family; Chrohn's, Asthma, Lupus, Temporal Arteritis, just to name a few. I know for sure my mother, younger brother, niece, and at least three aunts all suffer the same or similar symptoms as I do in the '#2' department. I now take Enbrel and methotrexate pretty successfully, for my RA, and have for quite a few years. i take other meds I don't feel the need to discuss, because my symptoms all started before the meds.
Mine 'usually' are brought on, although not always, following several days to a week or more with no BM. Then, suddenly, it's no holds barred, I have to run to the closest bathroom. People have described it as 'scary'. I call it embarrassing. I'm extremely private about my bowel habits. Which causes me to 'hold it'. Not good. My gynecologist told me a couple years ago to start using Miralax daily, which does help me stay more regular but does not completely prevent attacks. I can have between 1-6 attacks a year to 1 every year or so. There is absolutely no rhyme or reason to them, except major stress. Which we ALL have.
I found this place because two nights ago, I had a bad episode. Barely made it to the tiny 'mud room' toilet. Picture the size of department bathroom store stall, only smaller. I knew it was going bad, but couldn't make it across the house to the regular bathroom. The second I sat down, the extreme sweating started and off came the clothing. I then realized I'd never placed a small paper bag in there! I use it to breathe in when I start to hyperventilate. So, while I was having horrible cramping, trying to hold onto the door knob for dear life, I was also trying to cup my hands around my mouth and nose, something a paramedic showed me once. Not as good as a small paper sack, but better than going rigid! Then came the hard, small,compacted balls of feces, followed by explosive diarrhea. At that point I was losing ground fast, but had almost no where to go. Didn't care, had to get down. I thought I made to the ground, but nope, next thing I know I'm waking up to a marching band in my ears, laying in a puddle of blood (better than the alternative I suppose) Shaky, weak, clammy, shivering, still cramping. Had to crawl back on the toilet and call my niece for help. Lucky for me she's staying temporarily with me. More diarrhea. Complete exhaustion. She was freaked out, ready to call 911, but I made her not. Had her help me get to my room and get a cold, wet washcloth.
After assessing my wounds, I opted not to go in to the ED. Pupils were equal, round, reactive to light, no major headache, no vomiting, etc. one thing though that worries me a little. I immediately had pain with swallowing. I believe I took a face plant right into the corner of the small toilet area, jerking my head back, probably straining my neck. My nose is what bled, I don't think I broke it, but it's ginormous and now very colorful. I have 2 very swollen, colorful eyes, that are now 'weeping', which again, I suspect (I'm no doctor) is because I iced the bejesus out of them today, and the fluid has to go somewhere right? Oh, and I chipped my front tooth. Not a good day.
Worst part though is the neck pain. Yesterday, I couldn't turn without getting dizzy, light-headed. Today is slightly improved, yay! But I can't extend my head/neck back without extreme pain, weakness and an urge to vomit. I've been on Motrin and Norco (legally prescribed by my rheumatologist for my RA) near round the clock for bout 3 days now, the neck seems to be worsening. I couldn't eat the night it happened, the day after and just finally had a little sandwich tonight for dinner. My appetite *****. I'm weak. Oh, and after this last attack... I could NOT get warm to save my live! Heater up, blankets piled high, just frozen. Weird.
So, that's the back story, honestly, significantly shortened. This has literally tormented me my entire life. My big question is: I'm kind of worried about my neck. But I'm absolutely terrified of going in and finally being honest and them taking my license away. That would be a death sentence for me, where I live. I've never, ever told a doc about this. I'm convinced it's probably something hereditary or just vasovagle syncope, which really doesn't concern me. My neck, THIS TIME does concern me though. I passed out in Sept of 2013 at a hospital under the same circumstances, while caring for my Grampa. That time (another small bathroom) I split my forehead open and my nose, and ended up having 5 nurses come check me out. Soooo embarrassing! I lied, told em it was IBS, but they all agreed that was unusual for IBS, but couldn't force me to go to the E.D., so had me sign a waiver. In adulthood, those two were the only times I'd injured myself passing out. Both times were were extremely stressful situations for me.
How many here have had drivers licenses pulled for this painful, debilitating, unknown, mystery disease? And do you think I should be seen? My mother (a big part of the process, in my early years, but I digress) said to lie nd just tell them I slipped getting out of the tub. I'm not a very good liar. Any advice, help would be greatly appreciated.
P.S.- I now have paper bags throughout the house, strategically placed, as hyperventilating and becoming rigid is beyond awful! I highly recommend them in every room in your house, where you can get them quickly!