Hi - I read the posts here all the time and find lots of helpful hints. Right now I feel like just crying. After a year of many flares I am on plaquenil, methotrexate injections and now prednisone as well as other things for other issues. Flares include the fatigue, all over pain, headaches and neck, under chin pain, enlarged glands, fevers, face rash etc. My Rheumatologist tests for other antibodies periodically also dx UCTD and sjogrens for now. This past Saturday I started with unrelenting stomach pain I figured was from an increase in methotrexate, my Rheumy said probably not. I motored through for a few days, couldn't work full days, but did work on no food. By Wednesday I was in the ER, severe pain, diarhea, a mess. They did an ultrasound and bloods, high white count, that's about it. Nobody knew anything about autoimmune stuff, said probably gastritis and sent me home. 2 days later still in so much pain I cannot leave the house, eat much or drink, have lost weight (7 or 8 lbs). saw my primary yesterday, said to call a GI Dr, who hasn't even called back for an appt yet. This morning I was so fed up I called back my primary to see if at least they can schedule an upper GI soon, which they scheduled for Monday (don't know why I had to ask though, she's the DR). This is NOT going away or even getting any better. I thnk once it's autoimmune everybody just says hands off or something. My work has been great, they gave me off til after Thanksgiving, but I don't think I will even feel better then. I've done ok with all this, good days, bad days, but this is too much. I am getting weaker and weaker, trying to eat little bits of soup, toast etc and drink lots of water. Oh, and I've been on nexium for 10 years, have had GI issues that predate the Sjogrens, but nothing like this.
How do you guys deal with stuff like this, how do you get anyone to pay attention and not just think you are a whining middle aged woman?
Thank you for letting me vent, having a real bad day.
Anyone have anything like this? I know GI issues are common, my GI tract has slowed down considerably the past couple of years.
Thanks again and best wishes to all
Susan
I'm so sorry you are going through such a rough time! Where exactly is your pain? Have you been tested for Celieac?
I agree that you really need to see a GI doc.
I have lots of motility problems and AI pancreatitis. The pancreatitis can very insanely painful. I can't keep anything down when it is in a bad flare. I've ended up on a feeding tube a few times now because of it. I've also had to have my gall bladder out because it was inflamed, infected, and leaking stones into my bile duct causing all sorts of other problems.
As far as getting enough nutrition... I would really recommend Boost or Ensure. That's what my GI doc has me solely eat when I'm heading into a flare. It's the easiest to digest and you still get enough calories that way.
I really hope you get some answers and relief soon!
<3 Lauren
Sorry to hear that you are having a hard time. ((((hugs))))
Thank you Lauren and Wallaby! Yes, I have been tested for celiac and had my gallbladder out 20 years ago. Boost is a good idea, I have to get some nitrition into me! The pain is in my upper abdomen, one giant cramping, burning pain. The pain does not worse when I eat, I just feel full after a couple of bites, don't know if it's just because of the pain and not wanting to eat. I keep trying little bits every few hours of easy to digest things. The GI Dr's office never called back, even after I told them what's going on. Too busy I guess. Monday I'll ask my primary for another name. This pain is ridiculous. One of the blood tests came back positive for pancreas problem (amalayse?), then when they retested it was negative so who knows.
I appreciate your taking the time to answer!
Just because the second blood test was normal for elevated amalayse, doesn't mean you don't have pancreatitis according to my pancrease specialist. I've had AI pancreatitis for so long that even when its flaring to the point I need a feeding tube and heavy doses of prednisone, my levels don't get elevated. One of the indicators for AI pancreatitis is an elevated IGG4. Has your doc tested you for that?
Also the pain you are describing sounds similar to what I experience. I get a boring burning pain that goes through to my back. The pain is located just under my ribs and slightly to the left side.
If I were you I would def push for more investigation into it being pancreatitis. Mine was finally diagnosed via endoscopic ultrasound after years of horrible pain, nausea, and vomiting bile every day.
Feel free to private message me if you want.
<3 Lauren
You know, you never fully appreciate your bowls or bladder until their busted and yes I'm speaking from experience.
Hi Susan,
I'm so sorry to hear that you're feeling so bad! Wow, can you get a second opinion from another GI doctor maybe? Are you close to a major medical center or a teaching hospital?
I can't speak of pancreatitis, but you should not have to live in such misery.
Hang in there, and keep us updated, okay?
Take care -
Patze
Thanks all. I have not even been able to even get an appt yet with a GI Dr. The ER Dr Wednesday was only concerned about true emergency situations, when he found nothing about to blow up he just sent me home and said to follow up, gave me vicodin but I don't think that makes sense right now. I am going to ask about pancreas issues and I am thinking maybe a motility issue going on too, GI tract has slowed down considerably overall, and I feel full after eating a few bites. I have only been on prednisone a couple of weeks (stubbornly refused it the first year, but it does help) so I don't think any stomach issues from that. I keep having episodes of weight loss, over 15 lbs since a flare in late August. I just have a feeling this will all be related somehow although I know it is entirely possible it's not. Neck pain, swollen glands, fatigue, muscle weakness etc all happening now as in a sjogrens flare too. We'll see if the upper GI shows anything and I will amp up efforts to see a GI Dr. Hopefully the pain starts resolving.
I appreciate all your responses.
susanr, I am concerned about you cause you are sick!!!! Have you raised the roof big time with any clinics or hospitals, etc. Doctors who don't deal with autoimmune issues are not always aware that when one is on the big gun meds for AI that the diseases that are attacking our body can have some masked symptoms, blood work, etc. When you can't eat and have the pain like you describe it is very, very suspicious.
Weekends are never the time to get sick or be seen when one has a chronic disease. Do you have anyone who can go with you and be your advocate for health care. If anything you must be dehydrated plus you said your white cells are up. Darn, doesn't that mean infection?????
Sometimes a person could just scream about all this that goes on that doctors ignore. I wish I knew what to tell you to do but I am at a loss. I have been in some similar situations and sent home from ER. I have been told that ER is only for the really serious conditions. How the heck does one know how serious our condition is for crying out loud. I would say terrible pain, etc has got to be an indicator. Let us know how you come out on this. I don't know if it helps to threaten to report them to the state hospital board or whatever one does. Seems like it is abuse when your condition isn't addressed when you have some AI diagnoses. Good luck .irish ;D
(((Susan)))...are you feeling any better at all today?
Susan,
Please let us know how you are doing when you are able....being in that much pain and not being able to eat is an emergency situation in my opinion. Can the doc from the emergency room get you into a GI specialist soon...very soon? Can they admit you for more tests and insure that you are getting the fluids and nutrients you needs and at least help control the pain until they get more answers? It seems strange that they would send you home in that condition.
As Irish said..please continue to push for proper care and have someone with you to help advocate for you...we aren't always the best advocates for ourselves when we are sick and in pain.
I hope you have been able to get some help and answers by the time you read this. Sending lots of gentle hugs to you....
Hang in there Susan and I too am sending you tons of gentle
( ( ( ( ( H U G S ) ) ) ) )
Take care -
Patze
Thanks for all the support. I still cannot eat more than little bits of cup o soups, toast, small yogurt, keeping fluids up, still pretty uncomfortable and fatigued and getting a little nervous since this is obviously not going to just resolve itself. Tomorrow am I have an upper GI, I am also going to call my primary and report things are not better, find me a GI Dr ASAP or admit me and get this done! I really want my life back! I know this is one place that sentiment will be understood.
Irish - thanks for the hint about the meds masking blood results, I'll bring that up.
I live in NH, about 1 1/2 hours from great Boston hospitals, but I wanted to stay close to home since I need so many appts and work full time (probably not for much longer at this rate). I did go to Boston when I had thyroid cancer, guess I have been in some denial as to how much this sjogrens would impact my quality of life.
Hugs to all
:) Hello!!
So sorry to hear you are in so much pain. I've ended up in the ER twice in the past few months with extreme stomach pain, usually when I am on prednisone or plaquenil. Theres never much they can tell you and the recovery time for stomach issues seem to be very slow. For me, vanilla shakes with protein powder were a lifesaver. Seemed to coat my stomach so that I could get down small amounts of food. Theres a thick liquid shot that numbs your stomach that hospitals and my gastoenterologist have (sorry can't remember the name) that also helped too. It completely numbs your stomach and helped me get thru the worst of the pain. I hope you get some answers soon, and I'll be crossing my fingers for ya! Big hug!
-Heather-
Don't know the official name but ER calls it a GI cocktail....
Last night my primary dr's office called, said the GI DR (who I still have not seen or gotten an appt with 12 days into this) said to go back to the ER and get a workup including ct scan. So I went, they got ready to do the ct scan then I mentioned I had an upper GI 3 days ago and they did an xray, still too much barium left in the system (no kidding sine I keep telling them I can't eat) so no ct scan. Finally they gave me the GI cocktail and sent me home. The only think bloods showed was low potassium so he gave me some of that and a prescription to take daily (says to take with food) and some other med for stomach pain. Sent me home crying in pain, the gi cocktail didn't do much. The ER dr said they see unexplained stomach pain all the time. (Oh, ok I fell better now.) Luckily I have an appt to see the rheumatologist Tuesday, maybe I can get him to help.
Hoping to at least be able to have a nibble of my turkey! Luckily my husband likes to help cook.
I am going to try and push more fluids and eat a little so I can get this barium through and move on to the ct scan. This pain is really getting to me.....
Susan,
It sounds awful - I'm so sorry for your pain!!! I can't believe how bad your drs are!!! I hope your rheumy will help you find the right dr for your GI issues. Please keep us posted - we all care - - sending prayers your way,
Voiceteacher
It sounds like an infection??? you had a high white blood count right? maybe a trial round of antibiotics is worth a try? some of the antibiotics even help with
motility. Could also be a parasite or severe yeast??
So sorry to hear your in so much pain and not getting much help with it all. I live in the UK and am very very lucky to live across the road and work in my local hospital. I can't beleive that with all your symptoms things have taken so long to get looked at. That would be seen as negligance in the NHS over here. I really hope you have some luck getting this sorted . I have just seen my Gp who is refering me for an endoscopy for severe Pain and reflux but don't think i'm in anywhere near as much pain as you are.
Sending you all my love and lots of hugs. Please keep us up dated x
Claire xxxx