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Crohn's Disease Forum

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You're right Cat, ANA can indicate a number of autoimmune illnesses. After my ANA was positive, I was tested for more indicators of Rheumatoid Arthritis (bc my grandmother has it, and the joint pain in my wrists/knees), Sjogren's Syndrome, scleroderma, & mixed connective tissue disease. As far as I know, all those tests were normal for me. They say healthy people can have a positive ANA (like Lady Gaga...news reports said "Lady Gaga might have Lupus!" >.<), but when you have symptoms like this...no. lol :p

http://thelupussite.com/ana.html
 
haha lady gaga lupus? really? wowwww, that's crazy.

GUESS WHAT!!!
Soooo, the mayo clinic called me and they want me to come to jacksonville tomorrow morning, so i gotta leave at like 5:30AM to get there at 8 o_O crazinessss. but they want to do the morning cortisol blood test and the other bloodwork there tomorrow morning and also get an xray done. they want these blood tests done while i'm having the sharp pains. but the pains have already calmed down a bit, but maybe something will show in the blood work still. oh well, so yeah TOMORROW morning, my boyfriend and i are going to the mayo clinic to get things done! Really happy that i don't have to wait till monday, that's great news. Sooner the better! It was funny the lady on the phone was like.. well you could come here tomorrow but it's really early for you to make the drive. I was like... i've been in so much pain for so many years, that this morning drive tomorrow is really no big deal at all! I would drive across the world to get tests done tomorrow if i had to lol. If you have an opportunity to get things done faster... we go for it! :)
 
Allie, I remember reading an article about Lady Gaga. It said something like, her aunt has Lupus so Gaga had her ANA tested and it came back "borderline positive" but she's asymptomatic, so they're not sure if she'll develop full-blown Lupus later or if it was just a fluke. Some of her outfits look so crazy painful to wear that I can't imagine someone with Lupus could wear them! Like, I'm sure she can't sit down or move in certain ways in some of those outfits (I couldn't raise my arms or sit easily when I was in my Belle gown for Halloween and that was totally normal compared to some of the stuff Gaga wears!). So yeah, I'm with you, I doubt she's really ill and it was probably just a false positive or whatever.

Sunshine, so happy to hear that you don't have to wait longer for these tests! So the Addison's test you're having, is it just a cortisol draw or is it the ACTH test where it takes a couple of hours? If it's the ACTH test, bring a book or a laptop or whatever to keep yourself entertained, because that test takes awhile but most of the time you're just waiting (they inject you with something called ACTH, then test your blood every so often over the course of a few hours). Best of luck tomorrow! Got my fingers crossed for you!
 
It's just a morning cortisol blood draw. not the ACTH. I hope they do more to get an accurate answer though. because if this comes back negative... i'd hope that they wouldn't just throw the idea away. because just like lupus, sometimes it takes more than one blood test to find it you know? Hmmm we will see! Thanks for the luck! :)
 
I'm glad they fit you in Sunshine! That's very exciting! I hope it shows something! :)

Yeah, you are right, Lady Gaga's Aunt died because of Lupus. Her dad is starting a restaurant in New York in her honor! When I googled Lupus for pictures (motivational ones, etc), I got a ton of Lady Gaga pictures....it was kind of sad, lol.
 
Really not doing well...... :'(
da;fjioea;fjiodajf :(
I feel flushed, out of it, my head feels terrible... like it's throbbing, and my eyes are super sensitive :( and i feel cold ish? idk i just feel AWFUL! :( Like i could pass out or something. THIS IS SO SCARY :( People shouldn't have to go through this stuff... there are so many people who are undiagnosed and their health is in the doctors hands... and sometimes doctors won't even help anyone.. what are we, as the undiagnosed patients, supposed to do when the person who is suppose to be helping you, doesn't? :( My head has been feeling like this the past few days... :( it's really bad though now. what should i do? I took tylenol but it's just not working. I couldn't even do my project for school, and I do everything for school, but i couldn't concentrate enough and be able to focus on such a tedious thing with me feeling awful... :( i need a hug. sorry for rambling and freaking out. i'm just really not doing well. and this stinks. :(
 
Oh, Sunshine, that is a lot of sad faces! I sure hope you are doing better today, and you were able to make it up to the Mayo Clinic.

Thinking of you and sending you hugs! xoxo
 
I second that Sunshine!

Bit of a reversal for me today. Good news is my evening meal stayed in yesterday (as opposed to coming out before I had finished my bowl of food!).

Bad news is today abdo pain is really bad, much worse than it has been for awhile. So bad have been thinking of A&E. But reckon it won't come to that. *sigh* Feeling very sick too and only had a biscuit to eat since I don't seem to want anything.
 
Sunshine I am so sorry you are feeling so bad. :( I get like that too, and I have actually passed out. You just have to rest. You can't push yourself too hard. I really hope the mayo clinic saw you like that and helped you, and I hope those blood tests/Xray shows something.

I am having a bad day too....gosh we are all having a bad day. :( I ate Turkey, sweet potatoes, and green beans last night (wayyy too much fiber....) and my pain got really high. Too high to sleep. So I tossed and turned until 3am, then gave up and took my pain meds, then just laid in bed from 3am till 9am just watching the time go by. So I got maybe 2 hours of sleep for today. I am SO TIRED. And because of it all my symptoms are on overdrive, especially my pain.

The good news is...my rheumy appointment is TOMORROW!!!!!!:dance:

I'm REALLY hoping he just takes a stab at it, tries Lupus meds, or even goes ahead and diagnoses Lupus since I have 5 of the 11 criteria (need 4 for dx). He said at my last appointment he might also diagnose fibro, so maybe I will even get two more dx to add to my belt. I have a new rash on my chin he can biopsy, and another on my leg. Hoping I have enough evidence to get treatment.
 
Sunshine, when they first investigated me for Addison's, they did a cortisol blood draw and decided the results of that were enough to warrant giving me the ACTH test. Hopefully they do that for you too. Best of luck today! I hope they're able to see how ill you are today and do something to actually help you. Sending a big hug your way!

Allie, best of luck tomorrow! Fingers crossed for you that you finally get that long-awaited diagnosis (or two!) and some treatment and relief. Tomorrow I've got to help my friend set up for her wedding on Friday, but I'll check the forum when I can and I'll be thinking of you! Big hug to you too!

Star, that sucks that you are in so much pain. Keep us posted, I hope you don't have to go to the emergency room, but if you do have to go then I hope they help you (as I recall, they gave you some really nice pain meds and treated you well the last time you went, right?). And I hope this doesn't affect your surgical appointment either! Hang in there, big hug to you too and I hope it gets better soon.

I'm doing a lot better today, feel nearly back to normal. Still playing it safe with food because I cannot miss this wedding on Friday. It's snowing heavily here which is not fun, it's the first snow of the year so we went from green grass to white everywhere! It's super windy out too so the snow is blowing sideways. Yuck! It seems way too early in the year for it to be snowing like this already. About half the time we don't even have snow on the ground in time for xmas, so to have this much snow in early November is ridiculous! I guess we're lucky, they said 2 inches for my area, but up to 8 inches further north of here. I guess I'll be happy with 2 inches and glad it's not 8!
 
Grrr...I had long response typed up and I accidently hit my back button and lost them! Has that ever happened to anyone else? Well, here's my abbreviated post:


I sure hope the pain passes soon, Star. You can't seem to catch a break! You were able to keep you meal down, but then you suffer all of this pain. It's not fair.


Best of luck tomorrow, Allie. I'll be eager to hear how your appointment goes.


Snow?!?! We actually had a snow storm about 2 weeks ago (we got about an inch), but today PA is seeing 70 degrees!
 
Jill, yes, that has happened lots. Also on PMs which is not cool.

Sorry for those who are feeling poorly.

Ugh for the snow, Cat. It's warm here today, and it keeps doing this thing where I guess a front moves through and cools it off to 55 or 60, then it creeps back up to the 70s, and then starts all over again. No consistency. Irritating as heck. But I'll take that over snow in November any day. ;)

How are you doing, Jill?
 
guess what everyone... surprise surprise everything came back normal.... i'm devastated! I'm in so much pain and i don't understand why nothing is showing up! :( The mayo clinic told me they are not sure what's next as far as testing goes, they are waiting for my stool tests to come back from the fat diet.
I'm going tomorrow morning to my GP to talk to her about what's been going on and get her opinion on what kind of route i should be going, or maybe she will order some blood tests or something. I don' know, sometimes you have to go back to the basics. The mayo clinic is great, and I will continue to get help from them, but I'm in so much pain I need some guidance on what i should be doing in the mean time. I'm so 'out of it' lately I can barely keep my eyes open and focus on walking around and stuff. I feel like at any moment i could just pass out. it's so scary... :(
What do you all think??
 
Have you thought about seeing a Rheumatologist? Allie and I have had really good luck with ours.

Still in alot of pain, if it hasn't gone tomorrow I will go to A&E (and yes they were so good with me last time). Actually am worn out with tiredness just through being in pain all day, you know what I mean? I know what my normal tired feels like and this isn't it.
 
UPDATE:
mayo clinic just called. they said that they believe that what i'm experiencing is not gastro related (even though i'm losing weight and have D all the time) and that i should go to my primary doctor and get opinions on where i should be going in what direction in the mean time until the mayo clinic figures out the next steps they want to take... weird, right??? :/ well good thing i already made an appointment with my primary doctor for tomorrow morning...
I'm thinking she will send me to a Rheumy but we'll see.
 
The snow has finally stopped, thank goodness, but it's sticking to the grass, cars, roofs, etc. Everything is white! I'm jealous of you guys who have temps in the 70s, 60s, even 50s - it's been in the 30s and 40s here lately. It had been raining for 2 days straight but then the rain turned into snow and it snowed for a good 6ish hours today. Yuck!

Jill, yes, I think we've all done that and yes it sucks! Super annoying when you've just written a long post and have to start all over again. How are you doing today?

Sunshine, I agree with Star, it might be time to start seeing a rheumatologist. You could ask for a referral at your GP appointment or maybe ask your Mayo doctors if you could start seeing a rheumy there. As Allie discovered and as I'm sure you know, other autoimmune illnesses can mimic IBD-like symptoms and a rheumy would best be able to check you for those kinds of illnesses.

Star, sorry to hear that you're still doing so poorly. If you do go to the A&E, perhaps that will help you at your surgical appointment? If they hear that you've just been to the emergency room for pain, I would hope that would push them closer to the decision to go ahead with the surgery. Good luck and I hope things improve soon. I'll keep you in my thoughts and I'll check on this thread when I'm able to.

Okay, so here's something random and funny which will hopefully bring a smile to everyone's face. I went to the gym during my lunch hour - and all over the floor, there were sprinkles. You know, like when you get a donut or a cupcake and it's got sprinkles on it? Yeah, those - they were all over the floor of the gym, as if someone was pigging out on donuts in the gym! Who does that?? And how weird! I have been known to indulge in the ocassional bakery item, but I'd never take a donut down to the gym to eat it! I'm trying to understand the logic - "Hmm, I want to eat this high-calorie baked good but I also want to burn off some of the calories from it right as I'm eating it - I know, I'll eat it right in the gym! Who cares if my jumping-jacks and torso twists make sprinkles fly everywhere!" :p
 
sunshine, i 3rd the rheumy idea. also, have you considered getting a referral to endocrinologist? i know hormones and thyroid problems can do a number on all different systems. i'm even considering going to one, just because even on the remicade i still seem to have more frequent bowel movements than most people and still some mucus, and (this will sound weird) but it's like i can feel myself having hormone surges. it's hard to describe, but i felt the same way when i was pregnant and nursing. not like hot flashes, but like surges of something going thru my body like near my girlie areas. and i'm only 33, so i doubt it's menopause.
i had a follow up with the GI tuesday and i forgot to ask about the hormone thing because it was just the PA, who's kind of an idiot (did you have surgery? uh no, did you even bother to read my chart??). at least my bloodwork all came back normal.
 
Cat, sorry to hear your having troubles :( :( :( hope you have a better day tomorrow.

I turned in my fat diet stool samples and my 24 hour urine this morning. they don't have any appointments to get blood work done before 8am until next monday!! gosh so far away... I wish i could just drive up to the mayo clinic and have them do the blood work. :( and tonight at around 7 i started getting those sharp pains near my stomach, under right ribs that radiates to my right side and right back... it's so bad that i can't move!! :'( it hurts if i move back or forwards. so i have the heating pad on... but this is terrible... :'( It's gotten worse as the night has gone on. I feel fever ish again, head ache, nausea, everything.... :( Going to call mayo clinic tomorrow morning and tell them my update of how i'm doing..

I don't know if this makes you feel any better or worse but again I have the EXACT same symptoms. Also if we include the enlarged spleen thing what rheumatologist type problem could you have?
 
I am sorry you didn't get any answers today, Sunshine. Good luck with your GP tomorrow. I hope he/she has some insight for you. I think seeing a rheumatologist is a good next step.


I have been doing pretty well GI wise. I have only been going to the bathroom once a day, and it is more normal than it's been since my GI issues began. And no urgency, blood and only a little mucus and ab pain. I really do think the Lialda was causing many of my symptoms. But, was it keeping my Crohn's (if I have Crohn's) in check?

However, the one complaint I have is issues with my mouth. Lately, I have developed a small mouth ulcer here and there, but it also feels like my cheeks and throat are swollen. I have always had an issue with my tongue feeling swollen. All of my doctors (GI, GP, ENT) could never visually see an issue or explain why I get this. These mouth issues aren't painful, but very uncomfortable and annoying.
 
jill - our issues sound so much alike. very odd. i have the mouth issues, too. not just the ulcers, but with tongue swelling and irritation in the sides of my mouth, gums and throat. it's under control right now with a steroid cream, as the remicade doesn't seem to be helping it so far.

when i was on prednisone it cleared up right away.

if you want to ask your dr about the cream, it's clotrimazole & betamethasone. it's actually a steroid and an antifungal, so you don't get thrush from the steroid part.
 
Thanks for the advice, Flowergirl. It seems to be a bit better today. But who knows for how long. I will keep your suggestions in mind.
 
Waiting for some test results...

I'm 21 and being tested for Crohn's. I'm also a female.

Been calling in sick to work for, about 7 weeks now. Stomach pain, nausea, no appetite, constipation & some batches of diarrhea lasting all day.

Colonoscopy was normal
Had an upper Gi & an endoscopy- both normal.
Blood work shows inflammation & developing anemia
Small intestine x-ray shows inflammation of the small intestine/ dilation/enlarged areas of intestine.
Had a laproscopy to look around my abdomen to see if they could find anything- normal besides ovarian cysts (that have since gone away)
Ultrasound was normal.
Haven't been able to sleep in weeks (though, just started taking melatonin which helps immensely)
Tired, dizzy, fatigued from doing hardly anything.

Can't eat hardly anything, nothing sits well. Greasy foods give me awful diarrhea, healthy foods give me constipation.

Having bloodwork to test for Crohn's but have to wait 10 days for results which is around 11/22.

I'm so lost, and in so much pain constantly. Nothing helps me. Currently on Chlordiazepoxide/Clindinium caps. So far, that doesn't help any of my symptoms.

Been hospitalized 2x, ER 3x for severe abdominal pain.


I don't know if this is Crohn's or UC or if its just something that they'll never find a rhyme or reason for that I have to live with.
So, I guess from everyone else on here- does this sound like Crohn's? Do you have any suggestions for getting better while I wait for results?

Thanks.


-Used to get mouth sores a lot during high school.
-Had my gallbladder removed in '09 due to gallstones.
-When they did the laproscopy they took out my appendix just in case
 
Hi Artsy and welcome. Your symptoms do align with IBD, especially that inflammation was found in your small intestine. Being that the case, if it is IBD, it's most likely Crohn's; UC is limited to the colon.

What is the next step for testing? Has your GI suggested a pill cam? That would probably be the best shot at finding inflammation hiding in your small intestine.
 
He said that could be the next step if the new blood work doesn't show anything. But, I think he's hesitant to do it- I keep getting bounced around through different GI's so basically I get a new doctor every time and have to keep starting over. It's getting very frustrating.

He's hoping the blood work will point to Crohn's though, as far as I know this should be the last test I have- unless its inconclusive and then I suppose it's the pill cam.
 
Well guys...that was the worst appointment I have ever been to. By Far.

He basically walked in and said he doesn't think its Lupus because there isn't enough evidence. He said my rashes must me eczema, my wrist joint pain carpel tunnel, and the rest fibromyalgia. He said I have the looks of someone developing Lupus, but it isn't 100% possible. He was very rude about it, and we ended up bickering for thirty minutes. I asked him if there was any way to try a medication and see what happens, and he said "what, pred? Pred is a miracle drug, it will work on anything. It wont tell us anything on whats wrong with you".

He ended up putting me on two weeks of pred anyway. To see if it "breaks my pain cycle". And if the pain goes away and doesn't come back, then I just move on. How could that happen after 17 months of this awful pain??

I asked about my ANA being positive....and his answer? "Tons of people have positive ANA. It doesn't mean anything." He then went on to say I went online and diagnosed myself over the internet. Um, excuse me, having this antibody in your blood means something. I know he is a professional but lots of Lupus patients have positive ANA, and thats the only thing that shows up in their blood. He said I must not be in that much trouble because my CRP is 0....I have read EVERYWHERE that that is normal for Lupus patients. My abdomen is swollen and warm to the touch. I don't care what my blood tests say.

He is sending me to another Rheumotologist for a second opinion. I got nowhere today. And I only have a month ish left in the states....so I feel completely hopeless. I feel like he completely let me down.

I am a mess...I haven't stopped crying since the appt. Its been one big panic attack. This is a complete nightmare...
 
Allie, I am so sorry to hear that, and I can relate 100% to how you are feeling right now. It's good though that you are getting a second opinion. He sounds like a jerk. :voodoo:

I am in such a panic about tomorrow. I do not want this op at all and if there was anyway I could get out of it I would. What makes it harder is I am only having this since the Pill Cam & PET scan were denied purely on cost grounds, both easier, less invasive tests. So I get to go through the trauma of surgery since some pen pusher decided I wasn't worth spending the money on :mad: :(

I hate the thought of it 100%. My Nan went in my Hospital to have a cyst removed from her ovary. Well she woke up with a colostomy bag since the Surgeon nicked the bowel, nicked it so badly she nearly died, was in Hospital for months recovering and they told her at least a year before it could be reversed (which she later decided against). The Hospital could not admit liability quick enough which i'm sure you'll appreciate is most unusual. With all due respect to her, i'm sure it must have been a god awful shock, but she's always been at her happiest in baggy clothes and let's say she'd been sleeping in a single bed for around 30 years. So no impact over the obvious. She was 78 I think at the time... big difference from being 24.

I can't stand the thought of that happening to me. I mean I could never wear anything nice again and as for sex well forget it... Even if it was only temporary for a year well that'd be another year spent 99% at home lol.

So maybe you can better understand my fears. That and the fact my close family have all reacted very badly to the anaesthesia. I really have been dreaming of getting a call/letter saying they've found my problem as my test results were mixed with someone else's etc and I don't need the surgery after all... or I could have one of the denied tests after all and that found out the problem.

Not coping at all and tomorrow I get to hear all the things that can go wrong and how many months I get to sit and think about said things!

Mum has seen how upset I am and has said in the future she will just book time off work and I can change my mind as I feel fit, but I still have to go alone tomorrow, and I hate early Hospital appointments with a passion, so hard for me to get up early and my bowels are always worse in the morning so I always worry about being able to leave the house and having an accident along the way...

If it was an afternoon I could have asked a friend along too but she has alot of health problems and I was not happy at asking her to get up and out so early.
 
Oh, Allie, I am so sorry your appointment didn't go anywhere near to the way you had hoped. I think the best part of the whole thing is you are getting a second opinion. However, I wouldn't go to anyone he recommends. Most likely it will be someone he went to school with and has the same thinking. If I were you, I'd find my own second opinion. But regardless of who it is, I hope you can see them soon and they are more proactive with your case.


Star, I wish you all the luck in the world tomorrow. I can only imagine how stressed you must be. We'll all be thinking of you tomorrow. Hang in there.
 
Thanks guys. I agree, the second opinion is a good idea, but it is being facilitated by this rheumy. I can't go to a rheumy without a referral from another dr. I guess I can go to my GP, but my rheumy basically said he is going to send my entire file to a rheumy he knows near here and set up an appointment for me. I really don't know what to think about that, because I leave here in December...do I even have the time to see him/her? I guess I will start seeing a rheumy in Germany as well, which will be a second opinion too.

I'm hoping the pred helps, to show that it is autoimmune, or at least something that is treated with pred. It would be nice to feel better for the next two weeks.

Star, I'm sorry you are so nervous. Its going to be ok! Hopefully the operation will show something and help you in the long run. That's why you are doing it and it will be worth it in the end!
 
Gosh I am so upset to to hear about that Allie, you have no idea!! :( adjfo;aiejfad gosh, this is just ridiculous.... :( so so sorry! *HUGS!!*

After the big ordeal with the mayo clinic telling me to go to my primary care doctor, I went this morning. I don't think she understood what she had gotten herself into when she asked the question, "So, what brings you here today?" I looked over at my boyfriend and we both just started laughing! Like hmmmm where do we start here?!!?? lol Oh welll, that was the humor in that appointment. A good laugh.
Anywayyy, I told her EVERYTHING! From my painful periods, joint pain, weird "kidney-ish" pain, my big flare last month, my ER visits, my grandma having Addison's disease (with no skin color change), the Mayo clinic tests, my last GI's tests including the positive crohn's pill cam results. Funny thing is, she said the same thing as everyone else, "Gosh! He's such a great doctor, I really trust him and what he says." So, it just confuses me more, like is he right? ahhh i don't know what to think anymore. She asked me a lot of questions too and she seemed very thorough in her questions and what she wanted to know about me. So, hopefully she can point me in the right direction. But anyway, she said she would try to piece everything together and figure out what blood tests and other tests she wants to do, but she said she can't see me until December 1st... so that's 2 and a half weeks away. Better than a month I guess. She even tried to put me on some meds to help the nausea but she said everything that i've already taken before and it doesn't work, so she said that's all she can recommend for me at this time.. so still no help with meds. :/ And this pain that starts in the front of my right ribs and goes over to my back is STILL there, it hasnt gone away yet. It's been there for like 3 days I guess now. It's gotta be a sign of something, stuff like that doesn't just pop up every now and then for nothing.
I really hate this going back to square one thing... it feels awful... because everything i've been through almost has to be re evaluated because everyone said something totally different. But, we will see what my primary care doctor says in 2 weeks. Trying to be optimistic. listening to music keeps me sane lol :p
 
Just got some blood results back- inflammation (cbc?) came back normal..

So, now what? Am I back to not knowing what's wrong since I don't have inflammation anymore?


skfnlskmfldkfmslfglmkdla;lsmda;slm.

I just want to feel better already!
 
Flank discomfort as one of your symptoms

I don't know if this makes you feel any better or worse but again I have the EXACT same symptoms. Also if we include the enlarged spleen thing what rheumatologist type problem could you have?

Hey I found this information on Pancreatitis... It really makes sense. i don't know if you have had your pancreas checked but it's worth checking if you have the symptoms!!

http://www.mayoclinic.com/health/pancreatitis/DS00371/DSECTION=symptoms
 
Artsy, not all people with crohn's have CRP levels in their blood. CRP also does not mean crohn's (there is no blood test for crohn's).

Since your small bowel x-ray showed small bowel inflammation, I think a pill cam is your next step. Upper endoscopies and colonoscopies do not go deep into the small intestine so it would not have shown problems there. The only problem with the pill cam is it doesn't collect biopsies.

I'm sorry about the disappointment. :( We all understand here, and we are here for you!
 
Star, I hope everything goes well tomorrow. I agree with Allie - try to focus on why you are doing it and the possible positive outcome. Have you mentioned your family's issues with anesthesia to the anesthesiologist, or will you be able to tomorrow? Maybe he could put you at ease about that.

Allie, that sucks about your appointment. Well, worst case scenario, you see another rheumy in Germany. Man, I was so sure you were turning the undxed corner...

Sunshine, I hope your GP can figure something out or a direction to go in at least. Have you been checked for pancreatitis? Or would that have come up in all the myriad tests they've been doing on you lately?

Artsy, I don't think a blood test alone can rule out inflammation. Plenty of Crohnies on here have regular inflammation markers all the time. Are you talking about CRP? I think SED rate is the other one or something like that. But CBC is complete blood count, so as far as I know that's not a test for inflammation. I am taking melatonin now also. I love that stuff. I hope you get some answers. What bloodwork are you expecting back on the 22nd? Is it the Prometheus IBD 7 test? That test came back positive for me and that's why my GI did a pill cam. Even though it's kind of a spurious test to a lot of docs, it at least made mine look around some more to the point where I could be comfortable that he didn't find anything.

Cat, I hope you're able to do well at your friend's wedding.

Alright, well, time to clean the kitchen. Blurg.
 
I think he did mention the pill cam- but we're still waiting on other blood work to come back- he said it was to test for Crohn's and that it would take 10days... but if there's no blood test for it, what are they doing?

I'm so confused. I wish I had a doctor who was actually upfront about everything not a foreign guy I can barely understand (no offense). I'm also sick of being bounced around to a million people. =/ Its just so frustrating. I want to know what's wrong with me so I can do something about it and go back to work.
 
I'm not sure if anything has tested or shown my pancreas... I'm going to call my GP tomorrow and see what she thinks about it. She did mention that where my pain was when she pressed, was above my liver (that caused pain to radiate to my back which i've had a lot in the past year). So, idk if they have seen my liver or pancreas with anything... If they have I guess it's normal. but i'll ask my GP if i can get a hold of her tomorrow morning. otherwise i'll have to wait for my appointment in 2 weeks, which is when she will guide me on what she thinks and what tests should be done next. She seems very thorough and concerned so hopefully she'll maybe have an idea of what tests need to be done. She did make a connection that the first time i got my period was when i was 13, and yet i've been having problems since i was 13...? soo idk, she's definitely trying to put some signs together, so i hope in 2 weeks she gives me so advice.
 
@Artsy - That sounds like the Prometheus IBD test I am talking about - from what I have read, it is better suited for distinguishing between Crohns and UC, if it can even do that. It takes the amount of certain antibodies in your blood and then compares it to confirmed IBDers' results. Then they crunch the numbers using their "smart algorithm" and voila - the results come back either "consistent with IBD: Crohns Disease / Ulcerative Colitis" or "results not consistent with IBD." It is not the end-all test, though - I don't think any docs will diagnose off that blood test in the absence of visible disease evidence. It's not that your doc isn't being upfront about that blood test - it's just that some docs put more faith in it than others. Even though my doctor ordered it, he readily admitted that a lot of people think it's voodoo science.

@Sunshine - Cool, sounds like she's going to do her best then. Thorough at the least. I love my GP too. She's also very thorough.
 
Well, what I didn't like was that he pressed around and was like we'll do bloodwork to see if you have it. Kbye.

Like, he didn't talk to me or anything. I just wish a GI would sit and discuss what they think is wrong not just say we'll try this test but see you in a month. Hope you get better.

It's been 7weeks. I really don't think it'll miraculously get better in a few weeks of doing nothing different.

They just aren't very proactive about finding out what's wrong. =/
 
I'm sorry, I completely forgot about that particular IBD test. It was never used with me because my GI's don't think its reliable. Sorry!
 
THIS! (from http://labtestsonline.org/understanding/analytes/ana/tab/test)

I swear...the more I read on REPUTABLE websites, the more I think my rheumy is insane. I have also read up on pred...and it is not a MIRACLE drug.

I'm now at the point where I am just happy he gave me meds to help. If it is lupus, or another autoimmune illness, this will help me feel better for finals and the end of my projects. I will then take this positive ANA and pred trial to a NICE rheumy and get REAL help. BOOYA!






ANA tests are performed using different assays (indirect immunofluorescence microscopy or by enzyme-linked immunoabsorbant assay, ELISA) and results are reported as a titer, often with a particular type of immunofluroscence pattern (when positive). Low-level titers are considered negative, while increased titers, such as 1:320, are positive, indicating an elevated concentration of antinuclear antibodies.

ANA shows up on indirect immunofluorescence as fluorescent patterns in cells that are fixed to a slide that is evaluated under a microscope. Different patterns have been associated with a variety of autoimmune disorders, although overlap may occur. Some of the more common patterns include:

Homogenous (diffuse) - associated with SLE and mixed connective tissue disease
Speckled - associated with SLE, Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
Nucleolar - associated with scleroderma and polymyositis
Centromere pattern (peripheral) - associated with scleroderma and CREST (Calcinosis, Raynaud's syndrome, Esophogeal dysmotility, Sclerodactyly, Telangiectasia)
An example of a positive result might be: "Positive at 1:320 dilution with a homogenous pattern."

A positive ANA test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. While this is not common, the frequency of a false positive ANA result increases as people get older.

Also, ANA may become positive before signs and symptoms of an autoimmune disease develop, so it may take time to tell the meaning of a positive ANA in a person who does not have symptoms. Most positive ANA results don't have significance, so physicians should reassure their patients but should also still be vigilant for development of signs and symptoms that might suggest an autoimmune disease.

About 95% of those with SLE have a positive ANA test result. If someone also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then she probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered (often as an ENA panel) to help confirm that the condition is SLE.

A positive ANA can also mean that the person has drug-induced lupus. This condition is associated with the development of autoantibodies to histones, which are water-soluble proteins rich in the amino acids lysine and arginine. An anti-histone test may be ordered to support the diagnosis of drug-induced lupus.

Other conditions in which a positive ANA test result may be seen include:

Sjögren syndrome: Between 40% and 70% of those with this condition have a positive ANA test result. While this finding supports the diagnosis, a negative result does not rule it out. The doctor may want to test for two subsets of ANA: Anti-SS-A (Ro) and Anti-SS-B (La). About 90% or more of people with Sjögren syndrome have autoantibodies to SSA.
Scleroderma (systemic sclerosis): About 60% to 90% of those with scleroderma have a positive ANA finding. In people who may have this condition, ANA subset tests can help distinguished two forms of the disease, limited versus diffuse. The diffuse form is more severe. Limited disease is most closely associated with the anticentromere pattern of ANA staining (and the anticentromere test), while the diffuse form is associated with autoantibodies to the anti–Scl-70.
A positive result on the ANA also may show up in people with Raynaud's disease, rheumatoid arthritis, dermatomyositis or polymyosis, mixed connective tissue disease, and other autoimmune conditions. For more on these conditions, visit the American Autoimmune Related Diseases Association patient information page.

A doctor must rely on test results, clinical symptoms, and the person's history for diagnosis. Because symptoms may come and go, it may take months or years to show a pattern that might suggest SLE or any of the other autoimmune diseases.
 
@Allie - So do you think he was just going on the blood tests you had after the positive ANA? Did those come back normal or something? I must have missed that post. Did he discuss your pattern or anything? I like your attitude!!

@Artsy - Yeah, if he won't take the time to talk to you and is just throwing tests at you, then sounds like you may need another doctor. You should feel comfortable with a GI. They are poking around in some uncharted territory.
 
All my other blood tests have come back normal. I haven't been told how high my ANA is, or what pattern. He did other blood tests that can be certain levels for certain patients, as well as tests for RA and Sjogrens. I'm not really that educated on all this, but those blood tests, except the anti-DNA one, are not used as part of the 11 criteria for dxing lupus (I have 5 of the 11). I know he is the doctor, but most of the things he said made no sense...and he passed off everything as something else when they ALL click with lupus (the rashes, joint pain, abdominal pain, mouth ulcers) when the last appointment he said they were all related. He even did a "quick test" for carpel tunnel, and when it didn't go his way, he said I must not have done the test long enough. The entire thing was childish. >.<
 
Hi all. I had my surgery and am home. I can't sleep but I'm home. No endometriosis was seen, but my bowel had attached to my pelvic wall and I had lesions on the bowel. The doc was able to burn those off and get the bowel free. I am hopeful and confident this helps the IBS.

I had amazing nurses and docs. I joked I wanted a local as we were all laughing and joking so much, right up to going under. My recover was almost 3 hours. My vitals dropped a few times due to my asthma. I ended up getting a breathing treatment. It seems ok now but I still have a deep congested cough.

The kitties are by my side and the foster pup is slowly learning not to be a lap dog. He's not happy and jealous of the kitties. I'm in good paws. : )
 
Meg, nice to see you and glad the surgery went well!

Well, I didn't get anywhere with mine. Spent 20 mins giving my 5 year history to the junior Dr, and then Surgeon saw me, said he'd never done one for my symptoms and doesn't feel it would be appropriate. As CT scan (months old) was normal and didn't show any inflammation. Suggested a new GI (but the one I have now is new) and go back to Rheumy. At least he seemed to acknowledge the seriousness of my GI symptoms.

So since I couldn't get a Rheumy appointment until January (supposed to be next month but no free appointments), I will email him and see what he is willing to do in the way of tests until the next appointment in the interests of saving some time. Maybe he will go ahead with the bone marrow biopsy now. He is pretty good at arranging things between appointments for me.

I see GI next month too. Don't know if he'll be much help. Really don't want to do any repeat Gastro tests yet.
 
Meg, I'm so glad the surgery went well and it found something and FIXED it! That is wonderful news!

Star, I cannot believe you didn't get anywhere either. That makes three of us this week. Is there something in the air?? That really upsets me. :(

I am now on the dreaded pred. I can feel it....oy. I'm hoping these weird side effects die down and it starts helping all my other symptoms. I'm on tramadol as well....waited an hour after I took the pred, to see if it would help, since I don't like taking the tramadol, but my pain was at an 8, and I was tired of it. So this mix of meds is making me feel a bit weird. Glad I can spend today in bed. :) Going to a concert with my little sister tonight! Little sister in the sorority that is. Its not a normal concert, its a band playing at a really good restaurant near here, so I can stay sitting the entire time. Another good thing about today.

I hope everyone has a good day! And a good weekend!
 
Thanks Allie, I honestly think they should make a new disease name and tell us we all have that... lol.

Just feel I am getting nowhere again. I see the immuno-suppressant trial as an option but I blow hot and cold on it. Am just scared Rheumy will give up on me soon too even though he has been fantastic so far and no reason to think that other than my fears... How long do I hold out for a dx? I really don't know what the answer is.

Abdo pain really really bad again today sigh. :yfrown:

If I could just have one of those tests I was denied! It seems like now there really isn't much left to do apart from the drugs trial which I really am in two minds about.
 
Gosh So sorry star, Allie is right, that makes 3 of us! Something is definitely in the air.
I hope your new GI can get you some help!! Keep us posted!!

Allie, sorry about the side effects! I hope you have fun at the restaurant tonight for the concert! :) Sounds like a really great time!

My family is moving about an hour away tomorrow, so today we got the moving truck and i'm packing. it's really hard to pack when my sharp pains are radiating to my back, because it makes it hard to move around. but i'm doing my best! My mommy is helping me pack because she knows i'm not feeling good, and my dad thinks i'm crazy so he's just doing his own thing.. o_O My family and my boyfriend and I went out to dinner the other night and my dad was like, "Maybe nothing is wrong with you." And I was like, "no, something is wrong because I keep getting worse..." and then he was like "well your cheeks look rosey." I said, "that's blush, make up can hide a lot of things." My boyfriend felt awkard because he hates when my dad picks on me like that because he thinks nothing is wrong (just in my head), even though he's seen me lose almost 20 pounds. so my boyfriend walked away haha. then I looked at my mom and gave her "the look", like "see?" lol because she doesn't believe me that my dad thinks nothing is wrong. so i left and my mom talked to my dad, but he just doesn't get it. oh well... :(

I called my GP this morning because i looked up pancreatitis and i have like all the symptoms especially the pain that radiates to the back! and the nurse said that she wouldn't let me talk to the dr. and that she said "i'm fine" because my family history doesn't show anything with the pancreas... how does that make any sense at all? I asked her if she could order a simple blood test, and she said no because she thinks everything is fine.. I'm like.. okay.. She doesn't even know that pain i'm in or have been for the past 8 years! She has no right to tell me "im okay" because I'm not... Oh well.. I'll just have to wait till December 1st to see what the GP thinks i should do for testings. I swear, no one listens!!!! :(
 
I agree, no-one listens, if you have normal tests or not enough coming back abnormal!

Don't expect GI to be helpful but will see. Last time he said if the IBS diet (which I was deemed, unsurprisingly, not appropriate for) doesn't work then he will look at things again. While telling me it was IBS but admitting night attacks don't fit with IBS, his words.

Have a feeling he will want me to do another colonoscopy as it will be a year since my last. But I can't face a prep at the moment!

I'd love him to try a Pill Cam special application for me but is unlikely.
 
I'm here! Did a quick glance through the newer posts but will have to go back and re-read everything more in-depth later. I'm exhausted! The wedding went well for the most part - the bride's mother is a bit of a psycho and decided to be a real b**** before and during the wedding (calling the bride, saying she wasn't coming, then hanging up - then when she did show up, she wasn't dressed up at all, just in a sloppy sweatshirt and jeans, and acted like the bride should apologize to her, etc). And then, I got home a little after hubby did, and when I came in the house I didn't see my dog anywhere and said "Where's Lily?" Hubby said, "She's fine, I just got a voicemail, one of our neighbors found her." What???? Apparently when the guys were loading up the cars with stuff for the wedding (after I had already left the house) they left the door open and the dog got out of the house and was wandering the neighborhood for a few hours until a very nice neighbor of ours saw her, recognized her (he has a dog too and we often see him walking with his dog) and called us. He sat in his car with Lily waiting for us to get home, but he fell asleep in his car so we waited awhile for him to bring Lily back, and of course I was panic-stricken, super angry and also crying. So stressful and upsetting! Lily's my first ever dog and I've had her for less than a year, and she's never run away before. I'm so so so glad we got her back. I tried to give our neighbor a reward but he wouldn't accept it.

So yeah, my stress level went through the roof and beyond today! Good thing I've got the weekend to recover, although my guts so far haven't been affected (knock on wood). I'm going to quickly try to respond to the posts I saw...

Allie, that sucks so much, your doctor sounds like a real ass! I sure hope this second opinion guy can do something for you, and in the meantime I hope the pred works. What dosage are you on?

Meg, so glad the surgery went well and I hope it makes you feel a lot better. Glad you are recuperating with pets. :) Is it hard to foster a dog? After losing mine today I couldn't imagine having to give up a dog!

Sunshine, so glad your GP is taking you seriously, but it still sounds like you've gotten no relief and have another wait on your hands. :( If you think it's pancreatitis, you might just want to go to the ER. Pancreatitis isn't something to mess around with, and the ER would at least do tests and probably scans.

Star, sorry to hear your appointment was basically worthless. Seems like there's a lot of that going on lately! I hope your rheumy can do something for you before January, that sounds like a long time to wait. Did you ever end up going to A&E?

We're making dinner so I've got to go, I'll read more and post more later!
 
Thanks Cat, and you are right, he is an ass. I'm on pred for two weeks...10mg now, taper to 5mg next week. I know its a super low dose but I'm still hoping it helps me! Its enough for some side effects at least, lol.

I saw your post on Facebook about Lily! It made me super sad. Thank god you got her back. Kallie has never even tried to run away...I don't even need a leash with her outside, we only use one due to laws. Even when that other dog was attacking her a couple months ago, she stood right next to me protecting me. Poor Lily must have been freaking out with all the people. :(

Its actually pretty amazing how Kallie acts with me. She knows I'm sick, and its amazing how she has reacted to it. She is VERY protective of me. When I'm so sick I stay in bed/on the couch all day she is by my side the entire time, and when we are out together she's on guard the entire time. Its like she senses I'm weaker than other humans and she needs to help! I love her so much. :)
 
Some of the things he said have still really stuck in my head....

The reason he put me on pred is because I asked. At first he said no, it was too dangerous, and it wouldn't pinpoint whats wrong. He laughed and said it was a miracle drug, everything responds to it. When I explained your situation Cat, how you were on it for 5 days and it worked, so it pinpointed that you did NOT have IBS, he said "no, pred would even work on IBS. It didn't show anything for her condition." When I fell apart (when he told me I was just going against him and I had diagnosed myself on the internet), he goes "you know what? I'm HAPPY to put you on pred. Maybe it will break your pain cycle and this whole mess will be over." What an ASS.

The next thing he said it that if I had lupus my tramadol would not be helping my pain. That if my pain was being caused by inflammation, the tramadol wouldn't help because it has no antinflammatory properties. My response was "but tramadol wraps the pain sensors, where you can't feel the pain". Then he goes "but it doesn't matter. I can throw all the pain medicine in the world at some of my patients and their pain wouldn't go away." My pain doesn't go away completely! and TONS of Lupus, Crohn's, etc patients are on tram and other pain medications and it HELPS!

Nothing he said makes any sense to me....its really bothering me...I don't even know if I want to go to my follow up appointment with his assistant in two weeks...

Sorry I'm ranting so much to you guys about this...it has just really upset me!
 
No worries Allie I get that... the surgeon today was like " I didn't know this was why you were here/what was going on". I was kind of thinking, wtf, I do exactly what I am told in terms of medical stuff and I get bitched at?? Isn't it your job to know what's going on? You can be damn sure if I skipped the appointment I would have been criticised for that too!

Sorry it was such a stressful day for you Cat (and coming home to the stress too! Omg I would be frantic if that was my cat), but hope somewhere you got some fun out of it.

I didn't go to the ER in the end, pain finally dulled down yesterday afternoon (and i knew if I went, no way could I get up early for the surgery appointment), but has been quite bad off/on ever since.

Hope Rheumy will do something for me in the meantime, he has done in the past. I feel sorry for him, he is trying to help me, but getting told "no we won't do the op, no we won't do the scan" at every turn etc. Not as sorry as I feel for me though lol. I didn't want the surgery but I did not expect an outright refusal, another dead end you know?
 
If that is his assistant you are being referred to then I wouldn't bother, Allie. What a jerk!! I thought he was nice the first time?

Glad your dog is alright, Cat. Nice that you have the rest of the weekend to recover.

I hate that everyone seems to have had a rough week and bad doctors appointments. Hopefully things will improve soon.
 
Okay, so I'm not 100% sure that I belong here, but I feel like I have to cause nothing else sounds so similar to what I'm going through. I don't have D or C, and I don't weight loss. On the contrary, I seem to gain crazy amounts of weight if I eat something wrong. Like, I gained 4 pounds in two days. If I lose weight its more just because I'm not eating anything. I get horrible terrible cramps where I have to curl up in the fetal position and I can't stand up, shortness of breath, headaches, fatigue, and bloating so bad I feel like I'm going puke. Its particularly bad when I eat anything like nuts, fruit skins, uncooked veggies, soy, sugar, preservatives, anything greasy or fried, dairy, gluten, and quite a few other things. The doctors have been telling me I have acid reflux for 8 years now but I'm pretty sure its total bull. I have a colonoscopy scheduled on Monday and endoscopy middecember, but after everyone's stories about nothing being seen I'm terrified they won't find anything! Please tell me I'm not going crazy??
 
allie - what a dick. my mom has lupus. she takes lortab for pain. it has no antinflammatory properties. it still helps her.
so what exactly does he think you have if you don't have something autoimmune? because if it was something bacterial/viral, i imagine prednisone would make it worse.
 
Allie, that's so wrong what your rheumy said about pred! It would NOT help IBS, every doctor I've talked to has agreed on that! At one point when I saw my GP, he hadn't read through my file in awhile, so he asked me to refresh his memory on why we weren't saying it's IBS. I told him I respond to pred, and he said, oh right, then it's definitely not IBS! My GI feels the same way. IBS isn't inflammation! Wow, your rheumy sounds like a real piece of work if he feels that pain meds won't help Lupus and pred will help IBS. I'd give the assistant a shot (maybe he hates and or disagrees with his boss, that certainly wouldn't be unheard of) but definitely get a third opinion from a new rheumy when you go back to Germany. This is just so ridiculous! Anyway, I hope the pred is starting to do something?

Hi Cassandra, welcome to the club. Try not to worry too much before the fact - many people get diagnosed from the scopes (make sure they get lots of biopsies, and ask if they can stain for mast cells too). IF you don't get diagnosed from the scopes, it doesn't mean you're not really ill or anything like that. Crohn's can manifest anywhere from mouth to anus, and often hides out in the small intestine, and only very small portions of either end of the small intestine is seen on the scopes. So other tests, such as scans, small bowel follow-thru, or pill cam would be the next step IF you don't get diagnosed from the scopes. In the meantime, try not to dwell on the what ifs (I know, easier said than done). Hang in there, good luck with your c-scope on Monday. The scope itself is pretty easy, the prep is the worst part. Good luck and keep us posted!

So it seems the drama is not quite over with my dog - she's vomited 5 times since we got her back, twice last night and 3 x this morning. I started another thread about this so I'll write the short version here. She's been vomiting stuff like dry autumn leaves and I'm worried about her developing a possible blockage. Obviously she was eating stuff she shouldn't have when she was on the loose and I'm worried about her guts, which is in turn putting stress on my guts. Ugh! She seems fine right now, sleeping with her head on my foot, but if she pukes any more I just won't know what to do. There's an emergency vet in town (of course our regular vet is closed on weekends) but they're so expensive and we don't have much money... I'm just going to keep a close eye on her for now I guess and go from there.
 
A month ago I would have been a member

At the ripe old age of 60 I just got diagnosed! It was done with a blood test for antibodies that is patented and done by only one lab, Prometheus.
I've have nausea and diarrhea off and on all my life. Anorexic as a teen, I was not afraid of getting fat, food made me sick. In my 20s I was told there was nothing wrong with me, it was in my head. In my 30s the line was it was irritable bowel syndrome, but they didn’t really know what it was or what to do about it, but since I was a teacher it was probably caused by stress. At 35 I was diagnosed with osteoporosis and it was determined that I had malabsorption syndrome, but they didn’t know why. When the arthritis became so bad I started on NASIDs. When drugs came out for osteoporosis I also took those, the combination of both these drugs ate my stomach and I wound up with stomach surgery 2 years ago at age 58. All the time my weight went up and down as the nausea, diarrhea and occasional vomiting came and went.
I’m sure I have a mild case of Crohn’s, otherwise an obstruction would have put me in the hospital and, hopefully, it would have been identified a long time ago. As of 3 weeks ago I have an anti-inflammatory drug that has gotten rid of most of the nausea and has cut down on the diarrhea. I’m learning more about diet than I had by just trial and error over the years. I can’t believe that a disease that has affected my whole life is just now being treated.
 
Thanks guys. :)

May, my appointment with his assistant is just a checkup to see how I'm doing. I'll be just a few days away from being off of pred. I'm not expecting ANYTHING from that appointment.

Cat, I knew you would assure me that he isn't as educated as he thinks he is. :) His words have stung, a lot. The pred is helping overall, but not on my specific ab pain. I was told it wouldn't fully kick in for about 72 hours, so I'm glad I'm getting as much relief now as I'm getting. I'm only on day two. :) Last night at the concert I felt like a normal human being again, other than a little ab pain. It was amazing!

I'm so sorry about Lily. :( I hope she feels better soon!

Flowergirl, he thinks I have, and I quote, "just fibromyalgia syndrome". He said it in the worst way possible. Doesn't fibro cause widespread pain? Mine, the worst of it anyway, is in a very specific place. It just doesn't make sense.

Cassandra, I wouldn't get too worried about the scopes and what they see! Just take things as they come. Some of my symptoms are very similar to yours...my pain is much worse with fruits/veggies/fiber. Hang in there!

Moggs, sorry about your new diagnosis! I hope it is mild crohn's as well. I suggest you make a thread on the "your story" part of the forum so everyone can get to know you! You will find lots of support here from other who are diagnosed with Crohn's. :)
 
Thanks Allie. Lily seems to be doing somewhat better. She's pooed so I know she's not blocked. She did barf once more, but I found an eyedropper and managed to administer a bit of Pepto to her (it's safe for dogs) and she seems to be doing okay for the most part.

I'm so glad pred is working! Yay for feeling human again!! :D I felt superhuman when I was on it but my symptoms came back with a vengeance as soon as I stopped taking it. If that happens to you, definitely let that assistant dude know, and hopefully he'll put you on a longer taper. It'd be nice to be on pred until you graduate! Have you noticed any extra energy or anything like that?
 
Definitely. I normally sleep 10 hours and still feel tired...I only slept 6 last night! And I got to sleep easily last night, like a normal person (I normally toss and turn in pain). Its all little things that add up to going, "hey, I remember how this feels like, this is nice!". I don't feel superhuman, and I haven't had any of the "Euphoria", but I have had minor mood swings. I'll take that over whatever this is any day. :p
 
That's great, I wasn't able to get to sleep easily while on pred but that and the euphoria were the only side effects I noticed. Glad to hear you were able to sleep! And I agree, it's things like that that you realize you missed, but you don't really realize it until you start feeling human again. Like, I don't have to be petrified of all foods and spend 2 hours minimum daily in the bathroom??? Is that how normal people live, I had forgotten! Healthy people have NO idea how good they have it or how much they take for granted. Anyway, I'm rambling on but I'm so glad that you're finally getting some relief and some rest. Long may it continue! :)
 
Big update from GP I went to the other day!

I went to my GP on Thursday morning and had an HOUR talk with my new doctor. She is just a general doctor, no specialty. She honestly seemed more concerned than anyone I have ever seen before. She asked me a million questions, and i had told her EVERYTHING that i had been feeling for the last 8 years.
Soooo... we left and still wasn't sure what was happening. she said i would see her december 1st, and she's going on "vacation" next week so she couldn't see me next week...
well she CALLED me personally on my cell phone on Friday after hours because i had called early morning friday because i still had that pain that radiated to my back and i was very concerned that it might be pancreatitis. she called me and told me she got all my tests from the mayo clinic and she is waiting on the tests from dr.hilal (the one who did the first pill cam and saw crohn's), and said that from the blood work from the mayo clinic looks pretty normal so it doens't look like anything is wrong with my pancreas, but the pain i'm feeling she said sounds like it could be my pancreas but it could also be caused by my intestines. But she said if it hurts extremely bad to go to the hospital that she works at and they will call her and she will come by to make sure i'm doing okay. She also then explained that she thinks that the mayo clinic was too fast to think that I didn't have crohn's. she said that the first pill cam obviously showed ulcers and crohn's, and she said that sometimes if your in a very bad flare they will show up, and if your not then they sometimes hide. which makes sense because the first pill cam i had i was bent over in pain, throwing up, having D, cramps, basically felt like i was going to die. the second pill cam i was really relaxed and just felt a little bad but nothing near how i felt the first time. So she said she wants to call dr. hilal (first pill cam guy) after she looks at his results and see what to do next about that concern. And she said she is still looking over all my tests and all of my symptoms i gave her the other day, and she's still trying to put the pieces together. She said she's not ruling out anything yet, even Addison's which the mayo clinic did one test for and called it quits). She said that next week she is suppose to be on "vacation" but she said she's not going anywhere, so she will work on putting the pieces together with my stuff next week on her week off!!! How sweet!! She is really going out of her way to help me... i wanted to cry i was so happy someone was listening to me, and not just going with what the mayo clinic said, just because they are the mayo clinic, you know?! I'm just so pleased that someone is looking at me, realizing i'm very sick, and trying to put the pieces together. She said she will call me if she has any questions or any more news about what she's thinking. So i'm hoping my appointment with her on the 1st is a very productive one. She will hopefully tell me what blood works to do and testings to get done. I feel like she will figure it out sooner or later. I just have a good feeling about her... This is just frustrating that one person says oh it's crohn's, then the next says no it's not, then the next says yes it could be... gosh let's just try to get to the bottom of this already!! I'm glad that she's going to basically CHECK EVERYTHING, because it could be one thing or a couple things causing my pain. She is SO OPEN MINDED!! WHAT A RELIEF!! :) SOO HAPPY. It honestly made my day yesterday.

Sorry it's SUCH A BIG message, but I just had to tell you all everything. :)
I'm glad she's checking everything, because i really don't want to get misdiagnosed ever again. Wouldn't that be ironic if the mayo clinic actually was the one who messed up after this big mess? Crazy... I just want the right diagnosis... Glad she is willing to get to the bottom of this. plus she said she's pretty curious herself to know what's going on. I'm so glad I got to see her, she's great! :)

Feeling hopeful! :D
 
For all of you undiagnosed, I have collagenous Colitis very rare disease im 29 now started having problems when i was 20. It took two colonoscopies, and a doctor who had a hunch that it could be this, to order the right test. Under a normal scope everything looks ok maybe some redness, biopsies have to be taken and stained and to see if you have microscopic colitis. It is not fun to have at all, and everything you read about it will be so vague, and the part that always gets me is it does not increase cancer risk and it's not going to kill us so it isn't rated very high on the disease scale. But it doesn't make it very enjoyable to live with. If your doctors have not tested you for this please instruct them to do so.
 
Hi Crystal, thank you for the info. My GI has tested me for microscopic colitis but all the biopsies came back negative for any form of IBD - however, I understand that both Crohn's and microscopic colitis can have a skip pattern (in other words, manifest in patchy inflammation so the biopsies need to be done in the exact right spot). So I'm wondering if they just didn't do enough biopsies or do them in the right areas for me. My GI still feels that Crohn's or microscopic colitis are the two most likely suspects for me, and he's told me I've got IBD, but I'm still technically undiagnosed. (I was told that I don't have UC because I don't bleed.)

There is a thread on the forum for info about microscopic colitis - it was started by David, one of the forum admins and also the owner of this forum - if I'm remembering right, he has Lymphocytic colitis, the other major type of microscopic colitis besides collagenous. I believe that thread is in the General IBD section somewhere. Have a look for it. I know there's not many folks on the forum with microscopic colitis, but there's definitely a few so you're not alone!

Edited to add: I found the link to the Microscopic Colitis club. It's here:
http://www.crohnsforum.com/showthread.php?t=18407&highlight=microscopic+colitis+club
 
Sunshine, that's wonderful that your GP is going to such lengths to help you, she sounds like an amazing doctor! I hope she can get some answers for you! And the fact that she's doing some of this while she's on her vacation, that is just dedication and caring. Hang on to that doctor! She sounds awesome!

As for me, I'm doing better than expected. I thought my guts would be pretty bad from all the stress I went through with my bestie's wedding and my dog running away, but I haven't had any d nor cramping - feeling great! My dog is on the mend too. She vomited 6 times total yesterday and most of it was leaves, but I fed her last night and this morning and so far she's kept her meals down. I'm going to visit my parents later today and I might bring the dog. I'm a little nervous about taking her in the car because I do NOT want to clean barf off of my car seats, so I think I'll give her another dose of Pepto before we go just to be on the safe side, but she seems totally fine now (knock on wood).

How's everyone else today? Having a nice relaxing stress-free weekend I hope?
 
I am so glad to hear that Sunshine! :)

Well i've got a plan of attack now. I have booked into see my MP (Member of Parliment) 9th December. Will discuss the Hospitals neglect with him and see how he can help. In the meantime I will pursue a complaint with the complaints service as you have to do that first, even though I know it will be a waste of time. Basically telling them they are failing to care for me because I do not conform to the standard tests results/ symptoms. And why should I not have the more expensive tests when the standard ones haven't found the problem. And threaten them I am seeing MP so they better give me a response quick!

Email Rheumy tomorrow to see what comes next, should hear from him within 2 weeks if not sooner.
 
Hi Crystal, great information! Thank you so much, we all love getting more ideas and information about what could be going on, because we are all so confused on what's happening to us. This means a lot! :) Thanks! Hope you are doing better!!

May, Cat, and Star, thanks again!! :) She is a wonderful doctor, and I hope she can get to the bottom of all this. I know it will take time, which is really hard when I keep getting worse everyday, but I know I am in great hands with this doctor! I'm glad she is going to be thorough because she knows something is really going on, and that it's not just in my head! :)

Cat, i'm glad that your tummy has been doing well through all of the stresses!! That's just wonderful! I can imagine how happy you are about that. your poor puppy :( poor thing is still startled from it all. Give the puppy a hug for me! :) I love dogs!

Star, glad to know you have a plan of attack now! That is awesome! :) I hope they can figure something out with your tests! and good for you for standing up for yourself!! That seems like the only way to get doctors attention these days.. sad, but true! So, I'm proud of you! :) They better get you in soon for some of the better tests!
 
How is everyone doing today? I had a terrible night. Had bad adbo pain again but figured I would sleep it off. So went to bed and woke 4 hours later and it was really bad. So bad I couldn't get back to sleep so I read for a few hours, and then tried to sleep again, although it took me awhile. The pain had mostly gone when I woke up. So of course that has had a knock on affect on how i feel today, to be honest it's been 5pm and i've been in bed all day :(

I have never had such a disturbed night, usually I am out like a light! Mum can get up, shower, get ready for work and I sleep through it all now lol and she isn't that quiet.

Sent email to Rheumy, I feel a bit better now that has gone out.
 
Hi everyone! I hope you're all feeling ok today. Sunshine, I hope your new GP gets back to you with some ideas. I'm glad to hear she's receptive and concerned.

Cat, I just ordered this dog hammock thing that attaches to the back seat and then the back of the front seats to keep them clean and keep the dog from falling to the floor. I hope it works :)

I'm tired. I have all these doctors appointments to make (still). The problem is that I don't know when I can go to them!
 
Star, I'm glad you have a plan of attack, and it sounds like a good one. If it comes down to getting your MP involved, I hope they can help you get some of those tests you were denied for. Pill cam, PET scan, and now laprascopy (am I forgetting any?) - it's be nice if getting an MP involved meant those would be reconsidered for you! Fingers crossed, good luck. Keep us posted on what your rheumy says and how the complaint process goes this time around.

Carrie - I love the new title, you are the Prettiest Princess! :) Let me know how that dog hammock thing works, I'm intrigued. Is there a size/weight limit for it? My dog is a corgi but she's a big corgi! Usually corgis are something like 25 to 35 lbs max - well, my Lily is a whopping 50 lbs! She's got a larger frame than the average corgi plus she's a bit fat. She usually either rides in her dog carrier/crate thing or just sits on the seat when she's in the car. (Long trips = carrier, short trips = just sit on the backseat.) A nice middle ground would be good, so that she's still somewhat restrained but can also look out the window. So anyway, let me know how you like it as I may be interested in one too!

Does your boss not give you a little time off of work to go to the doctor? My boss is really nice about that kind of thing, although I usually try to schedule appointments during my lunch break. I get an hour break for lunch which is usually enough time for a regular appointment without any tests.

I'm tired today - didn't sleep well last night - but I'm doing well otherwise and am very happy that my dog is back to normal too. She hasn't vomited since Saturday and she seems completely healthy again. I told my hubby that he's got to be more careful about our dog. He grew up in the country, so they'd let their dogs roam around (that didn't always go so well either though - hubby's childhood dogs didn't always live to old age). I explained to hubby that we're in the city and there are lots of dangers out there for dogs, we can't let her roam and we need to keep a close eye on her and make sure she doesn't get out. I hope he understood. He was a little gruff when I told him all this.

How's everybody else today? Everyone with pets, give them a big hug for me! As Sunshine said in her video, sometimes pets are our medicine. :)
 
there's no size/weight limit for it. the weight of the dog should be on the seat, the hammock part is to keep them from hitting the floor if they go forward for whatever reason. The picture had a larger dog on it. We got it because she's coming to Massachusetts with us for Christmas, and it's a 10+ hour ride.

I was so sick last year that I worked from home for most of 9 months. After that they put me on a strict attendance policy that doesn't really spell out any time for actually being sick or seeing a doctor. Since then I've spent most of my useless days in the office sick in the bathroom. When I have called off I've felt terrible anxiety about it, expecting to come back to the office and get a written warning for attendance. None of my doctors are close enough to go over lunch. Some of them are more than an hour away. Some of my doctors are close enough to go to over lunch if I'm working from home, but that's only allowed once a week and is usually saved up for the inevitable sick as a dog day. That said, I went and made a few appointments finally. I'm seeing the dentist this Friday which will hopefully be a work from home day. I am rescheduling the rheumy til December so that I will see her after I finally see the ophthamologist for the plaquenil eye check. I've been sooo terrible about that. I only ever had my initial check, and I've been on plaquenil for more than a year so I'm two checks behind. I have a message into the endocrinologist that I need an appt made and I need my blood tests re-ordered. I also have a call in to the GI to get the endo scheduled. I'm pretty sure that covers everything currently, although the numbness in my hand isn't getting better so I suspect another specialist is in my future :(

Speaking of my numb hand, I reached behind me last night to get something, and I slammed my hand into the corner of a metal ruler!! I have a 3/4" cut over my heart? line (the one in the middle) in my left hand (the hand I write with! so it keeps hitting stuff). It freaking hurts! It's red, but it's too soon to be infected so I have to just keep watching it. I'm worried about that because of where it is and because the feeling in my hand is diminished.

Kelly sent me an email this morning to tell me she went downstairs and saw Babydoll chewing on my tomato shaped pincushion :( :( She's at work now so I'm sort of worrying about Babydoll til I get home in a couple hours. I mean, I'm sure she's ok, it would be fairly obvious if she ate straight pins, right?!

I made a wreath for the front door out of ribbons yesterday. It's kind of cute, I posted a pic on my blog. I also made a cute little card. This was before I slammed my hand into the (now) evil metal ruler.

When I was a kid my dog roamed free and would even lie down in the middle of the street forcing cards to go around him :p I can't even fathom that nowadays. I have a hard enough time with our indoor/outdoor cat roaming.

I think I've spent more money on supplies for christmas cards than gift giving would have cost. oops.
 
Carrie, I hope Babydoll is okay! (And might I add, what a cute name! I didn't get to name Lily, she came with that name - her full name is Callalilly Star because she was supposed to be a dog show dog, but now she's just Lily the pet dog. There are a LOT of other Lilys at the dog park so sometimes I feel like I should call her Callalilly just to be different, but hubby feels that name is far too silly.) Keep us posted, I hope she didn't eat any pins. Thinking of you, Kelly, and of course Babydoll!

I saw that wreath on your blog, very cute - and your adventures with the hot glue gun sound just like mine - what is up with the zillions of little spiderwebby strands that form whenever hot glue is present? That drives me nuts! I hope your hand is okay and not infected, that's a little scary about the numbness. Pinched nerve maybe? I don't know of anything besides that which can cause numbness, although I think that's more finger numbness than entire hand (?). I don't know. As for the work & time off stuff, that sounds sketchy to me. You might want to apply for Family Medical Leave (FMLA) which allows you to take time off as needed for medical stuff without fear of being reprimanded at work. I have been on FMLA all this year and a good chunk of last year too. It's a lifesaver! When I need to call in sick or go to the doctor, I don't have to worry about losing my job or getting in trouble. Yes, you can get approved for FMLA even if you're undiagnosed (although this year my GP was kind enough to put Inflammatory Bowel Disease on my paperwork) - my HR rep explained to me that they just basically need to see on the paperwork that you have an ongoing serious medical condition that will require you to take more time off than the average person.

Oh, and that hammock thing sounds perfect - Lily is very apt to topple off the back seat and onto the floor if I should hit the brakes even slightly hard. I just put it down to corgi clumsiness (they are by far not the most graceful creatures!) but I also don't want my dog to hurt herself in the car so I think I will invest in one of these doggy car hammock things. Where did you get yours from?
 
Carrie, My numbness in my hand is associated with my arthritis....carpel tunnel basically. You said overall numbness? Does it ever get any better with rest of the hand?

I am doing alright today. Been watching this but not posting...I'm super stressed out over the end of the semester. The pred is working, but my stress is basically fighting it, so it isn't helping as much as I would like. Every day I get stronger, happier, and look better though. My friends have all said they can tell I'm on medication that is fixing it...they say I'm becoming my old self again. :)

Sunshine, I'm so happy your GP is so awesome. I really hope she gets to the bottom of this.
 
I hope shes ok too! I'll be home in about an hour. I keep looking at the clock! its moving too slow.

The GP does think I have a pinched nerve in my hand. The numbness is primarily in my thumb. I really don't think it's getting better :( I'm torn about whether or not I think it's spreading. It could just be waves of severity as far as the numbness goes, you know?

I've been worried about FMLA mostly due to the way all of the documentation is written. I always thought FMLA protected you, but it doesn't sound like it from the documentation here at work. The other issue is having to have weekly timesheets. I'm salary and work at all hours of the day, there's no way that'll be done with any kind of accuracy. Our paperwork has a limit of days you can take within a 12 month period, any more and you can be terminated, which sounds like not FMLA to me. IN any case, I'll probably apply next year.

the hammock thing is exactly for that reason! I bought it from amazon.
 
Allie, I had an EMG.. last year I think, but nothing was wrong. This numbness came about after using scissors. In fact, every time I go to use scissors I can feel the numbness feeling get worse when the scissor handle presses against my thumb even the tiniest bit. It's reduced sensation, not completely without feeling, so if I brush my hand against something I get a shock from the pins/needles feeling worse.
 
Wow, Carrie, that sounds very not FMLA-friendly. Is there an HR rep or somebody like that you could talk to and clarify some of the hypotheticals, such as if you are approved for FMLA but take off more days than the timesheet/paperwork allows for, are you still in the clear?

Allie, so glad to hear that the pred is working and that you're feeling better!! :D The stress sucks, but at least that's temporary and things will get better when you graduate, right? Only about a month until then? I hope things go as smoothly as possible until then and that the pred continues to work its magic. How's the blanket business going?
 
Carrie, I just looked at dog car hammocks on amazon - I think I can make something like that! Yay, sewing project. :) I've got tons of velcro and it looks like that's how it attaches to the head rests, and the rest is just essentially a rectangle of fabric. I could quilt it with some batting so that it's nice and thick and durable. Not sure if I have waterproof fabric but I might! I have two big boxes of random fabric at home so I think I'll look through my fabric tonight and see what I can put together. Yay, project! :D
 
Cat - I did cover it with HR, and they suck. They were (purposely) vague and made sure not to really answer any of my questions. Every time I talk to HR I feel like it's a session of, how can the HR rep talk without saying anything useful that I could potentially use as guidance from HR or, how the HR rep tries to avoid a hypothetical lawsuit? That's how it feels to me. they won't say anything to me directly because if something bad goes down now I can use it in a lawsuit. pisses me off

I went back onto our benefits page and it says up to 12 weeks of job protection, but then up to 16 weeks if it's non-fmla? And then after that it suggests that you can only apply for FMLA for one year, and if you have it for more than 1 year you lose your job protections.

Last time I tried to call benefits to talk to them because HR was useless, they told me I needed to speak to HR for FMLA questions. way to pass the buck. The same thing went down when I tried to find out how to add Kelly to my health insurance. I never added her because it will just make my medical costs go up (have to cover a family deductible instead of a single deductible)

I've brought up my concerns with my boss more than once. I have talked to HR about it more than once. I can only believe that they think FMLA at our place of business is fine because they've never tried to use it.

edit: also, it's unpaid and I can't afford even 10 minutes less pay.
 
Wow, that sucks, Carrie. My HR rep is good, actually answers my questions, and I'm not the first person here to apply for FMLA so they know what they're doing (several co-workers have been through cancer so they went through the whole shebang of FMLA, short-term disability and long-term disability). I'm not the only person with digestive issues in the office either - a co-worker has UC and actually the HR rep has, as she put it, "a bad digestive system" and she's lot a lot of weight recently (she went from a normal weight to being really skinny), so I wouldn't be surprised if she's got IBD too. I guess I am lucky that I got FMLA with no drama and that I have understanding co-workers!

Maybe you could put your concerns about FMLA (and health insurance and whatever other HR concerns) into writing and ask for a written reply. Because that all sounds fishy, like possibly time to get a lawyer involved fishy. I come from a family with a lot of lawyers in it, and they always tell me to get stuff in writing.

Edited to respond to your edit: If you get paid vacation days and/or paid sick leave, you should be able to use those even with FMLA. I use vacation days when I take time off on FMLA so that at least then I get paid. I was told by my HR rep that it's okay to do that, I can go unpaid or use a vacation/sick day.
 
Allie, I'm so glad the meds are working for you. I hope they can figure out sooner than later what is officially going on with your body and can give you a real diagnosis before you leave again!
I've been doing the same thing, reading posts, but not responding, as I am not doing well today. I've already been to the bathroom 7 times... :( I've been doing pretty bad for the past couple of days, and my soreness under my rib that radiates to my back still is hurting.. i don't know what it is. oh well, i hope everyone's day is getting better and better as the day passes on. <3
 
Carrie, that sounds exactly like carpel tunnel. Repeat movements like that cause the nerve to get pinched off, and you can lose feeling in your thumb, index, and middle fingers. Mine started with writing, the SAME EXACT time as my abdominal pain became consistent. WebMD states Carpel Tunnel can be caused by arthritis in the wrist and a number of other things. Its not suppose to cause joint pain, so I am pretty sure my carpel tunnel is caused by inflammation in my joints.

Cat, yes, I only have three weeks worth of work left, thank god. In that time all my group projects are due and I have a ceremony to say goodbye to the sorority. With it including Thanksgiving, its like only 2.5 weeks....crazy! I'm glad that the pred is working too...I keep beaming when my friends go, "Oh hey, there's the Alisa we know again!". :D That rheumy just doesn't know me well enough to understand this....

The blanket business is going well. As soon as I started it the custom orders came flying in, so my etsy page looks bare because I haven't had any time to make items for sale. I'm working on my last custom order now, but I have one more blanket in the middle of being ordered, as well as another ipod sock. I feel that my actual inventory wont get big enough to be a business until I get back to Germany. But thats not why I did this anyway...its not about the money, I just wanted an outlet for my crochet! And that is working beautifully. :)
 
Had a VERY bad weekend- SORRY so long!!

Hey Guys-
This weekend for me was NOT fun at all!! I need to vent for a minute and maybe you guys could give me your opinions...

Along with my GI tract issues, my loving mother also passed something else down to me. She couldn't have given me her beautiful blue eyes- Oh NO... she had to give her HIGH BLOOD PRESSURE!! I have been on BP meds since I was 30 (12 years now) and have always had problems keeping the BP in check. The meds always seem to work for a while, but somehow they seem to stop working and they have to change them. Well it seems that problem is rearing its ugly head again. :ywow:

It all started on Friday- I woke up feeling "off". I was shaky in my hands and knees, a weird kind of nauseous- not like I am used to- and I had a pounding headache. I sometimes wake with a headache, and just take my Imitrex and I am fine. This one was different- it was absolutely horrible- pounding so hard it was like my heart was beating in my head. I could barely see. I took my Imitrex and it did nothing! :shifty: It was weird. I went to work anyway, and thought it would eventually kick in. It didn't. The pain was so bad I thought I was going to pass out. I worked for 4 hours and had to leave early. I was vomiting my head off. It was so bad. Went home and it got worse by the minute. I finally went to the doctor first thing Saturday morning.

Well my doctor walked, took one look at me, looked at my chart, saw that I lost 5 more pounds from a month ago (total now is 30 lbs), and said , Shannon, why have you not been taking your BP meds? I was like, huh? She said, don't lie to me, I know you are not taking them right, otherwise, your BP would not be this bad. She told me it was 160/125 and my heart rate was 139. She said she was very disappointed in me that I wasn't taken my meds and that if I didn't straighten up and do right I was going to have a stroke. She treated me like I was 5. I was floored. If I had not been so sick, I would have punched her in the face!! I was pissed. I tried to tell her I was taking it EVERY day at the same time, but she would not listen.

Then, get this, she said, Shannon, I think you have an eating disorder. You have lost too much weight. Are you just trying to get attention or what? What??? :rof: Are you freaking kidding me? I have NEVER been accused of being to thin! Too fat, yes, to thin, NEVER! I tried to tell her I had lost weight because, HELLO, I am SICK!!! News flash! I have not been believed for being sick but I have never been YELLED at for it- it was bizarre. Then she threatened to put me in the hospital if I wasn't going to take care of myself. I am surprised she didn't put me in time out. It was stupid. Anyway, she changed my meds AGAIN, gave me some pain meds and sent me home. I guess the new meds are working because the booming headache is gone and my BP has gone down to 140/95, still high but better.

Sorry this had nothing to do with tummy trouble but it is a medical issue for me and I wanted some imput. What do you guys think? I feel like I have been scolded and I did nothing wrong!!! :voodoo:
 
Shanbanana, that's so ridiculous. Gosh, seriously, doctors really don't listen. whatever they have in their head, they just go with that and keep pushing it. If they just take a step back and realize what we are saying then maybe we could get help and get fixed already! I am sooooo upset that your doctor treated you that way! I think we have all had some crazy times with our doctors at one point or another, it just makes me so upset. :( You are very sick, and you need help! And then your doctor thinks your not doing what your suppose to? makes no sense! Goodness, they need to listen. And I hope that your blood pressure stays down, because that's really serious stuff, ALONG with your tummy issues... :( your body is probably freaking out. poor thing :( Well.. I hope that you get a little better as the night goes by. *HUGS!!* <3
 
Thanks SO much, Sunshine. That means a lot. I was having such a pitty party!! So glad you guys understand. I swear sometimes I think nobody does and it stinks. :stinks:

Hope you are feeling better too!! Someday, we will all have our answers. Someday... :redface:
 
Yeah, believe me, don't feel bad, you're allowed to vent here!! That's why I love this place :) Everyone truly understands!!! :)

And yes, ONE DAY we will all have answers.. hopefully sooner than later! Maybe the diagnosis fairy will come by tonight and give everyone some luck with getting a diagnosis! lol just maybe...
 
Ugh

I just had my colonoscopy and it came back normal. My GI doctor wants me to start eating gluten again before the endoscopy so now the headaches are coming back. Sshe just wants to see if I have Celiac (which I seriously doubt because I'm still having nights where I'm doubled over in pain despite no gluten). Its so frustrating to have a GI doctor not listen when I say literally one bite of popcorn can have me on the floor crying in pain all night, then have her say she doesn't think its anything but Celiac! Other than a colonoscopy or endoscopy does anyone have any other suggestions for exams that usually catch stuff? I've been at this for 8 years, its just so frustrating :/
 
ShanBanana, I'd get a new doctor. If your doctor doesn't believe you then you're not going to get adequate treatment. And if she asks why you're leaving tell her exactly why. You treat me like a child, you don't believe me when I say I take my meds, I am sick and you do nothing to help that.
 
I have been MIA for a few days, but I wanted to bop in and say 'hi' quickly.

@Cat - I am glad the wedding was nice, minus the crazy mother. I hope puppy feels better soon.

@Allie - It sounds like pred is certainly helping. I wonder what a high dose would do?!

@Sunshine - I am so happy you found such an amazing GP! I always dreamed of a doctor being so interested in my health to actually be proactive without me pushing. I hope she'll be able to put the pieces together for you.


As for me, not too much different. I am doing fairly well, but I have been dealing with more mucus than usual and passing it apart from a BM. Work and life has just been so busy lately, so I am just trying to take it day by day. I hope everyone has a good day!
 
Shan, I'm with Carrie - that sounds like horrible treatment and if it were me I'd definitely start looking for a new doctor! In the meantime I hope your BP gets under control. I have the opposite problem, my BP is usually too low and sometimes drops dangerously low. It's not fun - I don't know what high BP feels like, but low BP is pretty miserable, so I'm guessing high BP is similarly awful. :( Hang in there and start looking for a doc that'll take you seriously and treat you like the adult you are!

I'm having a bad day due to some personal crap going on. I started a thread about this stuff in the Members Only section if you guys care to know what's going on. Basically a friend (or so I thought) has apparently been lying about some very serious stuff. It's making my guts unhappy, I have no appetite today and I slept very poorly last night. I hate that stupid emotional crap can send my guts into a tizzy. But I also hate this massive breach of trust that's happened and I just have to figure out how to deal with it. Ugh. Not good.

I hope everyone else is doing okay today. I'd write more but I'm just feeling so blah, and I'm trying not to be a drama queen about it. Things will work out one way or another. Anyway, I hope you're all doing okay. Who's got appointments or tests coming up? Allie, I know you're seeing that rheumy assistant soon? Anybody else?
 
let's see. I have a dentist appt Friday, ophthalmologist on 12/1, lab work 12/5, endocrinologist 12/12, rheumatologist 12/14. I'm still waiting to hear back about my follow-up endoscopy.

feeling like crap today, all nauseous and such. Cat, I hope your drama resolves :(
 
Wow, it sounds like you've got a lot coming up, Carrie! I hope all goes well with taking time off work to go to these appointments. And sorry to hear that you're feeling crappy today. That sucks. I hope they can figure something out at one of your many appointments. How's the papercraft going? I like your blog, I really like your recent post where you made a turkey day wreath. I have no wreaths for any holiday so I'm tempted to try to make something although I'm not much good with paper. I might crochet a basic wreath shape and then add buttons or glitter or something. Do you have any ideas? I might make an xmas wreath because I don't know if I could make one in time for thanksgiving.
 
I haven't actually told my boss about any of the appts yet. I should tell him about the dentist soon. I think the nausea is because the gastritis and ulcer aren't going away. We'll see if thats true when my endoscopy happens. I am not expecting anything useful from any of the appts I have scheduled.

You like the wreath? its really easy to make. the metal frame I bought for it was only a couple dollars. you can also get wood/branch wreaths (all at craft stores or online) then hot glue whatever you want on any of the kinds of wreaths.

If you want to crochet a wreath I think you'll need to get wire or something to make it hold its shape.

that wreath only took a couple hours to make.
 
I've seen styrofoam wreath base things at craft stores, so I thought I might crochet something and glue it on top of the styrofoam base and then add buttons or ribbons or whatever. What are your thoughts on styrofoam? My only concern is that it might not hold up so well, especially outdoors in the weather and stuff. I do have some wire too, maybe I could reinforce the styrofoam with wire.

Are they doing anything for your gastritis? They put me on Prilosec, added Zantac, and I take Tums as needed. That keeps the reflux mostly at bay which in turn keeps the gastritis mostly at bay. For me, it seems that if one flares up then the other does too. But I don't have an ulcer and I would imagine that complicates things.
 
I don't think I'd attach it to the styrofoam, I don't think it'll do a good job. Plus, you'd want to wrap the styrofoam in the crochet so that none of it shows through, and that's not really feasible. You could wrap the styrofoam with yarn loops then crochet onto it maybe?

I'm on prilosec twice a day, double dose each time. I was on the carafate, but they started charging me for it.
 
Well i've done my letter of complaint (3 pages!) over the test failings in my care, should be sent off this week. And will be seeing MP on the 9th December.

It just takes so much energy to so this and I have none to spare! Been in bed all day again today. A combination of depression and fatigue honestly. :(
 
Carrie, you're probably right about the styrofoam. I really want to try making a crocheted wreath so I am going to have to figure something else out. I don't think wire by itself would look very good. Hmmmm.

Star, it sounds like the MP can get you in for an appointment quicker than your doctors can! That just seems wrong to me. At any rate, I hope it goes well. And, frankly, after all you've been through I'm surprised the complaint letter isn't longer than 3 pages! Although, after your last experience with the complaints people, I'm guessing it's not worth overdoing it as they're just likely to ignore you anyway.

As for the depression, I completely understand. I've been there and it gets worse for me during bad flares. I've read on the forum that depression is very common, nearly universal, with IBD - and being undiagnosed just makes it that much worse, at least for me it does. Hang in there, sending you a big hug. Something that cheers me up quite a bit is to cuddle my pets. I do this thing I call "purr therapy" with my cat. I'll pet her and pet her until she's purring quite loudly, then I'll just put my ear on her side and listen to the rumbling purrs for awhile. It's very relaxing and makes me feel a bit better. Cats can be wonderful when it seems like no people can possibly understand or even care. My dog is a big silly goofball and I love her, but honestly deep down I'm more of a cat person (as if you couldn't tell from the profile pic ;) ) and my cat really seems to understand that I'm ill. Anyway, I'm rambling. I hope things get better soon and that the MP can move some mountains for you. Hugs!
 

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