March 13, 2015 at 3:06 am #808amyhospParticipant
Pancreatitis anyone? Oh brother…. not sure that is all that is going on. I’ll get and MRI tomorrow along with Magnetic resonance cholangiopancreatogram (MRCP). I have pain 24/7 but this stuff is really taking me to a new place of pain and illness. Also another source of pain that is not related but is kinda…. My small intestines on the upper left side are crowed against my abdominal wall due to adhesions. About a year ago I woke up to a ripping or tearing sensation in my lower stomach. All I was doing was sleeping and it turned out to be a muscle tear. Not a lot of fun. Prayers appreciated and advice on what to do since no matter what is wrong with me I never get put in the hospital, Mind you, I don’t want to be in the Hospital, who does, but if I need help and treatment I need it and because EDS keeps us from looking sick then I guess they just think I’m fine. Also single and live alone so taking care of myself is difficult when I am feeling so bad. Thanks!March 13, 2015 at 12:56 pm #5372Dr. DianaKeymaster
I’m so sorry to hear about this, Amy! 🙁 Do they think your adhesions (a terribly underdiagnosed condition IMHO) are secondary to previous surgery? Do you have steatorrhea (clay colored stools, foamy, oily stools? Gross sounding, I know, but I was there once, and I suspect many of us have been. Pancreatitis, low pancreatic function and low gall bladder function is common, it seems. Hang in, my friend!March 13, 2015 at 1:52 pm #5374Mog the DogParticipant
Sorry to hear you’ve been dealing with pancreatitis along with all the other stuff. That’s one thing I have not experienced yet.
I have had the ripping lower abdominal pain, though. I always chalked it up to EDS-related round ligament pain. If I am not careful getting up from a supine position, I get an excruciating tearing/ripping pain in the vicinity of the round ligament that puts me into a crumpled heap on the floor. It only lasts a few seconds, but owwwwwwwww.
MTDMarch 19, 2015 at 10:34 am #5396AnnalynnetteParticipant
I have had it. Very painful. Screaming painful. I was driving home when I was experiencing the horrible pain. I was all alone and driving on back roads. Opened my son roof so that I wouldn’t pass out. I must have scared everyone between Denham Springs and St. Amant. Was trying to find a cop to help me. Non around. Imagine that. I took spasm pills that dissolved under my tongue, more than I should have, but got some relief. The spasm pills have been my life saver. I also have Crohn’s. My entire digestive system is always in raging spasms. I also have muscle cramps daily in every inch of my body.March 21, 2015 at 11:57 pm #5404amyhospParticipant
Oh my goodness….. that pain sounds like something I wouldn’t want to wish on anyone.
Dr. Diana, yes to everything you said. I am wondering what we are going to do next. I am just feeling better, well, pain wise but I still feel really icky!!! I guess I’m just tired from being in so much extra pain.
The question I have is related to the questions you asked Dr. Diana. I have clay colored stools a lot and I ask about them to my GI and he just says, I don’t know…. of course my blood work looks ok. (rolling eyes back). Is it not normal to have clay colored stools for EDSers or is this just another one of those things we have and can’t prove with blood work? I tell you what, I am sooooo tired of having symptoms of illnesses and the doctors never paying attention to that but instead want to only depend on blood work to prove stuff. I can’t even think about it because it makes me so mad.
Do you think they put me in the hospital? NO, not that I want to be in the hospital, but come on…… they know how sick I am to start with and they just ignore me. They meaning Baylor ER and Plaza ER and my doctor. uuuggghhh….
Sorry to be a downer with this but it just makes me so frustrated. Another reason I get frustrated is because I have told the ER and my Doc that I live alone with no family close by to help me and that I can’t take care of myself when I am having a bad illness. OH well, I think they are hoping I will go home and die from neglect so that they can get rid of me. lol
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