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No Answers and Feelling Worse

Jul 30, 2009 - 31 comments

What a journey of frustration this is continuing to be.

A month and a half ago I started having some vague abdominal pain, bloating and gastrointestinal and urinary issues.  I was worried it was another cyst or something to do with Lupus.  Both he and I are concerned about my severe anemia.  GP insisted it must be something related to my bowels and my J-pouch surgery and mused that he should send me to my surgeon in Toronto.  He ordered a CT.  Ends up nothing noted except for a 2.5 cm cyst on my remaining ovary and fluid in my uterus.

We needed more information on the cyst so set up a gynelogical ultrasound.  Went for that and cyst is down to 1.5 cm and simple.  No cause for concern.  Issues are continuing and increasing in pain. Pain is concentrated on right side, around back with some twinges in my upper abdomen and on the left.  I faxed my bloodwork from my Rheumatologist to GP wondering if the results showing renal issues might be causing issues.  Normally 3 positives are required before a definitive diagnosis of renal disease is considered.  GP says no and muses again about sending me to surgeon in Toronto.  My fatigue is getting worse too so I ask him about doing an occult blood test and he agrees.

Abdominal pain increases with off and on diarrhea, nausea and stools that are sometimes clay like or green (and is not due to my diet).  I head back to doctor once again (I am there every week now).  The nurse practitioner sees me.  My urine is good.  She talks with GP and he says he wants to send me to surgeon in Toronto.  I ask if I should be making arrangements since he's been saying this for some time and am assured they are taking care of it.  Because of my symptoms I ask for another ultrasound to check my gallbladder.  She argues and then gives in.

Went for ultrasound 2 days ago and when they hit the gallbladder, liver and pancreas, that is where the pain was.  I also call my rheumatologist telling him that I am having a tough time.  He calls back and asks if my GP is doing all the tests he asked him to since he is concerned about my anemia and that I may be bleeding internally (he wanted a complete work up done - endoscopy, colonoscopy, etc.).  I am livid that this has not been commuinicated to me.  Rheumy tells me to push hard.  I also put a call into surgeon's office to move getting an appointment along.

Heard from surgeon's office this morning that they did get the referral from my GP and that surgeon was looking over my file.  Only problem is that she is leaving for holidays next week so no appointments until September.  I am hoping I can see another doctor there.  I do know my GP probably wants her office to do all the testing because of the previous surgery and my unique body part situation as a result.

Feeling worse today.  Running a fever, lots of pain, confusion, dizziness, and a feeling like I've been sedated.  Took a couple of hours of nap and feel slightly better.  Called GP's office and ultrasound came back normal.  Now I am in tears and so frustrated.  I'm missing work (no sick time) and am in so much pain and so scared.  Tomorrow I will call and get back into GP and time for a heart to heart.  We have to figure out what the hell is going on here!  Everyone is afraid I'm bleeding internally.  For God's sake let's do something!!!  The Lupus pain (still not absolutely diagnosed) is bad enough without this.  And nobody is testing for vacultis in my gastro area due to Lupus.  See my rehumy in 2 weeks and see optometrist next week in lieu of the Lupus drugs and my blurry vision.

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Avatar universal
by jdwithhcv, Jul 30, 2009
What a horror, not to have any answers.  I feel for you, that must be very hard to bear.  

Have you ever been screened for Hepatitis C?  If you have donated blood since about 1993 your blood has been screened and you would have been contacted if you had antibodies to HCV.  Otherwise, it is possible to have Hep C for decades without necessarily having symptoms.  Anybody can get HCV, and many people will never know how they contracted it.  Your doctor may not test you unless you fall into a high-risk group, so ask if you've ever been screened.  If not, get a  test.

Good luck to you, I hope you get some answers soon.


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by Barb135, Jul 30, 2009
Trudie - I'm so sorry to hear this.  I had thought that you were doing so much better once you got the lupus dx. Well, it's too late now, but if I had read this earlier, I would have questioned if you need to see your GP *today* instead of tomorrow.  

What did they decide about the ultrasound and the pain in the area of the gall bladder, liver and pancreas?  When I had something similar a few years ago, it turned out that I had a very large gall stone; however, I had had these pains for years and *I* thought they were just gas pains until one day I went for my physical and the PA pressed on that area and I came completely off the table..  She sent me for ultrasound and that's when they found the gall stone.... They sent me to a surgeon and it turned out that all the pains I'd had previously was gall bladder attacks.  Had my gall bladder out about a week later and have not had pain since then................. A couple months later my husband had similar symptoms and I made him go to the doctor - yep, a few days later, he was having his gall bladder out too......We both had the gall bladder surgery laproscopically and HE was upset because *I* had 5 - 1" incisions; he only had

Anyway, I'm hoping that it turns out to be something as simple as that........Hang in there....  I will be praying that you get some answers very soon and can be out of pain......


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by peekawho, Jul 30, 2009
What is your H & H?  Severe anemia can account for the dizziness and confusion.   I'm concerned about you.  

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by TrudieC, Jul 30, 2009
In Feb. Hemoglobin was 97 and hemotacrit was .32.  Early June Hemoglobin 89 and hemotacrit .30.

Avatar universal
by greenwood112, Jul 30, 2009
Oh my goodness, I'm so sorry you are going through this.  It sounds terrible Trudie.  Remember that doctors are like people in any other job and they are sometimes not as efficient as they should be and can easily overlook things.  Your Rhum is right about really needing to push.  Do make sure you get that heart to heart.  I think it's important that he understands exactly how you are feeling.  Good luck!

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by vallieanne, Jul 30, 2009
I'm so sorry your having so much pain and your now missing work with your new job. You have been through too much this past year and this doctor (GP) sounds like an idiot.  He should have done these tests right away, not just sitting on his behind waiting for you to beg him for them.  If the rheumy told him you needed them done what is his excuse, and then he doesn't even mention this all to you.. unbelievable.

I have nothing personal against nurse practitioners, but there are times ( like now ) when they just aren't qualified for cases like yours with so many different things going on. You know the kind of garbage health care I get in the clinics here, same kind of deal,  the attending doctors just let the interns care for us and end up making mistakes that ruin our lives. Remember the idiot who took out my stitches less than a week after my surgery, it left a nice dent in my stomach that never went away. That's fine because it doesn't affect my health, but the doctors who ruined my urinary tract have yet to even figure out that issue... so you can't let them get away with this back and forth baloney anymore and the haphazard way they seem to be handling this case.

Your symptoms aren't just some minor thing and if the rheumy told the GP to have the tests done and he never even told you about that, he needs to be horsewhipped. Let him know that you just got back on your feet with the new job and you need to get this resolved now. Find out if the surgeon has someone else covering her while she's away so you can get a consult, otherwise ask for a different surgeon who's available now. Let them know how angry you are and don't let them get away with this b.s..
Is there anyway you could go to an emergency room and just basically go there doubled over and tell them all the symptoms, maybe they'd admit you and you could get the tests all done in hospital. Pooping clay is not normal, maybe you should bring him a sample in a baggie and just put in down on his desk when you go in there tomorrow.

Let me know how you make out after you get back home. I'm so mad for what they're putting you through I'd like to call them myself and tell them off, but with my paralyzed mouth I sound like a mumbling fool.

Had my visit with the ENT doctor yesterday, nice guy, did some tests and said it's a partial paralysis, will take a few months to go away. Made me imitate faces he was making at me and it was kind of funny, my brother Rick was trying not to laugh, we looked like two chimps making faces at each other..then he stuck some metal things in my ears and it gave me a bad headache all last night and today.. have no idea what they were. He's referred me to a facial paralysis specialist who works at the same location. Monday I have a test of some kind to measure the muscle activity in the inner ear that controls facial nerves, and next Friday I see the new doctor... this was all  set up by my neurologist on Tuesay when I went back to see her and she saw no improvement yet. She called her daughter who is an administrator at the hospital and got them to take my insurance as a favor to her. I've known her since she was a teenager, I got her a date for her senior prom because she was a shy girl and didn't date much back then, so I fixed her up with one of the guys in my acting class and she was a big hit that night. I guess she figured she owed me a favor!  Thank God I still have them in my life, I just hadn't been there for a long time before this new thing happened. She's in her 80's ( the neuro/ not the daughter)  but she's sharper than all these young smarty pants doctors put together.
Anyway, just get some rest tonight and remember we're all here for you, and will be with you in spirit when you go tell off that guy tomorrow.

Love you,

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by lvfrogs, Jul 31, 2009
I am so damn sorry for everything you are going through. You KNOW that I understand. We know our bodies and when something is wrong, we know that. I don't understand why your GP will not listen to you. An endoscopy and colonoscopy are simple procedures that he could easily have scheduled for you. Abdominal pain is not normal. I swear sometimes that these tests (ultrasounds especially) do NOT show everything and you were on the right track about your gallbladder. I feel your frustration and tears.  Please let us know what happens today, ok? I will be thinking of you all day!!

and Val, you know how I feel about everything you are going through. I am so glad that you saw the doctor yesterday and they are doing what they can for you. Stay positive, keep making those faces if it helps you laugh! and let us know what happens at your appts on Monday and Friday, ok?

Love you both,

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by TrudieC, Jul 31, 2009
Val, love your suggestion of delivering poop!  I did manage to get an appointment at my GP today at 3:20.  It will not be pleasant for him.  I will insist on a HIDA scan to really rule out my gallbladder and to get the other tests moving.  Will update later.

Avatar universal
by Katie116, Jul 31, 2009
Trudie, it's terrible the way you've been treated. But ladies, I've learned one thing. We have to be our own advocates, and we have to push and push. Who cares if we drive the doc crazy? How about just showing up in his office - with or without an appointment - and refusing to leave until he sees you? What's he going to do? It's your life, for God's sake. And if he won't listen to your please, then show up and force him to see you.

Anytime I've shown up in doc's office unannounced, they see me. They may night like it, but frankly, Scarlett, I don't give a damn. Sometimes we have to take all of the action in our own hands.

Other ideas: write your state/country's medical board, say like the American Medical Association. Write your insurance company. Write your elected representatives. Make sure you copy all of the above so that the doc's office know you're serious.
Good luck to you, and I'm hoping you feel better and know more today.

Avatar universal
by teko, Jul 31, 2009
I have heard that clay like stools, has to do with live function, but I am certainly no doctor. I would go to the ER if I were you and bypass all of them!  Something is definately going on and needs checked out. Keep us posted and let us know how it is going and please consider hitting the ER!

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by peekawho, Jul 31, 2009
The ER is likely the worst possible place to go, at least in the US it is.

The attitude is "treat and street".  They can't look into obscure possibilities, or do anything in depth.  They are meant for emergencies.  If you have something other than that, they will simply refer you back to your own Primary care physician.

Perhaps it works differently in Canada?

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by TrudieC, Jul 31, 2009
No, no difference.  You might get a test faster but that is it.  I'm hoping to take my husband with me this afternoon to the doctors.  I'm hot with fever again and am very fragile emotionally.  A prospect yelled at me on the phone this morning and I pretty much fell apart - so not me.

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by swampcritter, Jul 31, 2009
Where is Dr House when you need him!

The big question is -- which of the symptoms are original and which are side effects?  Anemia sounds like an original symptom. A problem with liver or pancreas could also be. Heck, it could even be onset of appendicitis with anemia.

The clay poop -- the medhelp symptom checker actually lists that one with 25 possible causes.

Of course, Swampy gets clay poop when he accidentally eats too much dirt. It happens when is is burrowing into the mud to hibernate.

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by lvfrogs, Jul 31, 2009
If you can't have Dr. House at least you have Swampy to cheer you up! always cheers me up :)
I can't wait to see what happens this afternoon. They had better take care of you! I might have to come up there and kick some Canadian buttsky!

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by lozzyroo, Jul 31, 2009
i'm so sorry to hear you still haven't heard anything....keep pestering them,jesus you pay for them to look after you so they should do their job

Avatar universal
by ufo2kitty, Jul 31, 2009
Have they said you might have Pernicious Anemia ?  It's where you can't absorb vit B-12.  It sounds like you have several things going on and anemia is just one of them.  I really feel for you and pray for the best so you find out something soon.  Best Wishes your way.  Sandi

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by TrudieC, Jul 31, 2009
Swampy, you do make me laugh.  Do wish I still had an appendix and it could be something that easy.  Yes, I need Dr.  House!

ufo2kitty, it is not pernicious anemia.  My B-12 is OK.  

I just got back from my appointment.  I had a really good talk with my doctor.  He really believed that the issue was that I might have Crohn's instead of the ulcerative colitis I'd been diagnosed with 25 years ago.  When they did my surgery to remove my entire colon (15 years ago) I had to wait a year with an ileostomy as they weren't sure if it was UC or Crohn's.  Since I stayed healthy they went ahead with my ileal pouch operation and I've done well since.  He had not been scheduling the other tests because he wanted my original surgeon, who is an inflammatory bowel specialist, to check that out.  He asked me if I'd heard from her and told him about the holidays.  I told him I knew that the rheumatologist wanted these other tests done and can we not move forward with those without the surgeon?  He agreed and is going to find a local gastroenterologist to take me on and get the tests done.  

He really listened and is considering the idea of a HIDA scan.  It is not something they do very often here.  He now understands that I don't have a lot of diarrhea, and that the pain is very concentrated in the areas of my gallbladder, liver and pancreas.  But that doesn't solve the anemia issue.  He can see how pale and drawn I look and is committed to finding an answer.  He ordered all kinds of more blood tests and is checking my liver out too.  

It's a long weekend here and I am happy that at least I can rest and won't have the stress of work on me but so wish we had another work day to push on appointments and things.  I'm getting quite scared about my job as I am not able to do what I should be doing.  Thanks everybody for your support.  

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by SimplyStar, Aug 01, 2009
Trudie, since the Gall Bladder, Liver and Pancreus are all interconnected and altho they serve different functions  they do serve a comman purpose, they depend on each other, when one malfunctions it causes the other two and  other organs depending on them to not fit into the right digestive system.  the ducts connecting them do at times become inflamed and infected, this would cause your pain and fever,  Do not let anyone talk you into waiting for a dx of this, the longer you wait now, there more complicated it will get, they depend and will take a large amount of O2 from your system, that only adds to your anemia,  your white count may be elevated also if it is an infection. are you careful about what chemicals and solvents you use?  there are several really good articals on the GB,L and P  connections, they are too long  for me to print here.  this seems to be an area that is not well understood by too many of our doctors, what you need is a good internist that specializes in the endocrine system.  I wish you luck hun,   Marty

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by TrudieC, Aug 01, 2009
Marty, thank you so much for your comments.  This makes a lot of sense.  I know it has something to do with this area and with it being the bile ducts it would make sense that wouldn't show on the ultrasound.  I looked up bile duct infections and see the different reasons.  This scares the bejeebers out of me, especially since I have a background of ulcerative colitis (cured with surgery) and Lupus/RA/some type of auto-immune currently undergoing diagnosis.  I sure hope those blood tests are back on Tuesday after the long weekend and if they point to liver man will I be pushing.

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by calamfred, Aug 01, 2009
Hi Trudie,
Just chiming in with hoping you get some answers...and relief soon!! So, from what I gather you have not had a colonoscopy or endoscopy recently??..and I know I read of GP and Rheumy, but I really hope you can get in to see a Gastroenterologist sooner than Sept...Has your Rheumy checked you for or ever mentioned auto-immune hepatitis? I have an aunt who has it, and also my grandpa had, when I got my diagnosis of lupus with secondary sjogrens, I was worried about the genetics of it for my son...My Rheumy did say that there may be a tendency for something auto-immune, but not necessarily the same disease "passed down"...Anyways, just thinking of anything you may ask your Dr, (s) about...Sending you a gentle hug, too...and please keep us informed how it's going for you...uncertainty and "what ifs" are terrible!!
Take Care,

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by Lucey12, Aug 01, 2009
Man your having a tough time! I hate it when doctors over look things. I was sick for a year and a half and they suggested it was cuz of the birth control pill but the sickness started a couple months before I was on the pill. They did a few tests but were never really serious about it. I was nauseous constantly, puking every weekend (go figure, my boss never believed me that I was sick) and lost 80 pounds in a 5 months with no exercising and they completely didnt care. It was always, ok in a month we'll give you an ultrasound to check for a cyst, oh go for a blood test, go do a breath test, are you sure your not pregnant? They gave up and told me to go off all bc.I did and was still nauseous and puking. I stayed off them for 5 months to see if maybe it was still in my system but was still sick. I still get nauseous but not too bad. The last couple months I puked twice so thats way better than before.  I hope your doctors will put more effort in and make you better. All the best love!

Avatar universal
by helenl89, Aug 02, 2009
My gp dimissed my symptoms of ovc, and when went for check up in  fall of 2007. didn't even seem to notice that I had dropped a 100bs in 10 months. It took a trip to the emergency room, for fear of a heart attack, before they found a mass on ovary bigger than a golf ball. I pushed my gp and really got nowhere, needless to say.I really don't see my gp anymore. When in the mist of chemo saw him in july of 2008 for reg checkup. He didn't even apologize, and just let it go.. that guy is history. My onc found the mass right away, and he wasn't really looking for it. some of these drs shouldn't even practice medicine.  Last time i saw this Dr was  in Feb for routine blood work. I wasn't nice, let me tell you. We know our bodies and know when something isn't right. keep pushing and get nasty if have to. sometimes thats the only way they listen. I'm sending hugs, and a hope that you will get the answers soon. I know it's frustrating, let alone painfull but take one day at a time, and let them know loudly, scream if have to, that all is not well. Let me know whats happening, when you get some info

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by lvfrogs, Aug 03, 2009
I hope that after this long weekend, you will finally get some things going. I think you need all 3 tests, the HIDA scan, the colonoscopy and the endoscopy. You need to find out what is wrong. I am glad that you are pushing the doctors. As you know, I have had so much trouble this way and you are a strong woman so don't give up. It is hard for me to push against what i consider authority figures but we do know our own bodies, they don't and they don't really care except for a few of them. My iron was extremely low, they put me on iron pills, never bothered to send me for a re-check even though I was no longer having periods, it got too high when they did finally check, so I went off of them and now it is back down to scary low. You would think they would want to know why. Anyway, sorry about that, I just get so frustrated for you and for me.  Let us know what happens, ok. Praying for you as always,

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by Joni686, Aug 05, 2009

I came across your writing and I was just reading the previous posts.  I noticed you haven't answered in a few days and wish you well.  I have lupus and before I even came down with symptoms years ago I had endometriosis and had to have an overie(sp?) removed then two years later a full hysterectomy along with two fibroid tumors the size of large oranges, then my appenpix went out and I had it removed and then in 2001 I had a gallbladder attack.  They scanned it and it was 3% working, that's 97% broken.  lol  Not funny but....  I thought I was fine after that and maybe I was but I sometimes wonder if it didn't all have to do with the lupus I now have.  I was dx'd in June 2007.  Since then I have been up and down, mostly down actually.  In January I had vasculitis around my heart.  Anyway, I wish you the best and if you want to talk or have any questions about what a gallbladder attack feels like I can certainly tell you.
God Bless,

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by TrudieC, Aug 05, 2009
Thanks!  My doctor took my suggestion and I am scheduled for a HIDA scan Sept. 4.  My blood tests came in yesterday but he hadn't reviewed them so am anxious to get those today.  I had a Lupus support group meeting last night and problems in this area is pretty common with Lupus as well as in people who have had ulcerative colitis.  They also mentioned that my fevers may just be a normal part of Lupus and may not represent an infection.  The blood tests will tell.

Avatar universal
by teko, Aug 05, 2009
Trudie, keep us posted as to your results will ya? Hugs and prayers coming your way darlin!


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by Cherie762, Aug 05, 2009
Trudie is there any vague possibility that there could be a slight internal bleed? was the ct done with contrast? I dont know much about these issues, but I sure do care about you my friend, My turn to pray for you and I will, you know something weird happened to me in the hospital when I was most afraid I stoped and prayed and such a rush of peace calm and faith came over me . Push and push for help if you dont like the answers keep looking. In the meantime we are all here to talk, love and support.Cherie

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by TrudieC, Aug 05, 2009
There is a possibility that I'm bleeding in the bowel but for some reason the occult blood test is taking 2 weeks to get done!  The CT was done with contrast but when I had it done this was not the issue, the cyst was - this pain happened shortly thereafter.  They didn't even comment on my gallbladder in the results.

I got my blood tests today.  My hemoglobin is up a bit (was 89, 8.9 in US and is now 101).  Hemocrit is .327.  My MCV, MCH, MCHC, are all low.  Random distribution width is 24.6 and platelets are high (418).  My Fe is only 3 (low), UIBC and TIBC are high.  My Iron sturation is .04 (very low).  It says I have mild (1+) microcytosis and hypochromia.  Doctor never called about it so will see.  I am back at the rheumatologist next Wednesday.  

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by lvfrogs, Aug 06, 2009
Ok, Trudie, you definitely need that colonoscopy. Whad did the doctor say about that? and why wouldn't your doctor have called you about the blood work? You mean they send the results directly to you?? You need to call him. Obviously, something is going on.  I had low iron saturation and felt horrible, out of breath all the time.  Please tell me you are calling the doctor!! Love you, Colleen

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by TrudieC, Aug 06, 2009
They don't normally send you blood results like that.  I requested to have them sent to me.  Doctor won't call unless there is something he can do right away.  Right now he is trying to get me into a gastro so nothing more until that happens.  I posted a question on the Lupus forum hoping to find out how low an anemia others with Lupus have.  No response as yet.  Yes, the out of breath and tiredness is horrible but I'm at a point where it is a waiting game.  I went off the gluten free yesterday and today (I was weak).  Had a very bad night up every hour with pain, gas and visiting the washroom.  Hubby feels I need the gluten free.  I'd like to get tested for it and the test doesn't work if you adjust your diet ahead of time.  We'll see.

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by Sandymac, Aug 06, 2009
Oh Trudie.. what a nightmare ! I don't understand why the occult blood test is taking so long ... You MUST keep pushing these Drs. as you have been doing. And , is the HIDA still scheduled for September?? Please let us know..I just feel so horrible for you. This is just no reason for this.. !

Take care as well as you can,

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