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05-04-2011, 01:19 PM   #301
Cat-a-Tonic
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Oh, The Mrs, that's awful! Now that you mention it I do remember you saying that you've been on pred for a long time. I had a few problems tapering my Entocort too but I seem to have finally gotten off of it. I hear so many horror stories on the forum of failed pred tapers or awful symptoms upon tapering, I guess I should be happy I wasn't on it for very long. I hope you're somehow able to get this flare under control AND get off the pred! Easier said than done I'm sure.
05-04-2011, 01:28 PM   #302
littlemissh
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Cat you were correct about the amitriptylline. It is only effective as an antidepressant at doses higher than 100mg and probably 150mg. At doses of 50mg or below it is used as a pain killer (particularly neuropathic and chronic pain), for migraine prevention and also as a mild sleeping pill. It is good as it is not addictive but it can cause constipation in some...a good thing if you are having constant diarrhoea!
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05-04-2011, 01:36 PM   #303
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Little Miss H, you're right about the constipation! I used to have d pretty much all the time, and since I've been on Amitrip I go back and forth between d and c. If I take something like Zofran or Lomotil it seems to compound the constipating effects and I sometimes don't go for a few days. I took a Zofran this morning for my nausea and haven't gone since (and was having 10 or so d per day for the past few weeks up until I took the Zofran this morning). I will probably take a stool softener this evening if I still haven't gone by then. It's hard to say which is more annoying, going all the time or not going for days at a time! Both are uncomfortable in their own unique ways.
05-04-2011, 02:03 PM   #304
allieinwonder
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Cat: Ugh I hate colonoscopy prep! It sucked to go through it in the hospital and then not get it done. ~.~ They don't have privacy here in Germany in hospitals, and I had two roomates, and I had to get an enema in front of them....soooo embarrassing. I hate the "pee out of your butt" thing too...when my flares are at their worse I do that without prep, actually did it today...not fun.

I get the dehydration thing, I've drank 64 ounces of gatoraid after I took my tramadol tonight. And yeah, the amitryptiline does seem to slow down things maybe a little...maybe lol. I don't get constipated from zofran either, or I don't think so..but I'm usually in tons of pain when I'm nauseous. My husband says the amitrptiline does help with the anxiety that I get due to the IBD, and I am only at 25mg. It doesn't help with my pain though...

Yeah...I think D is better than constipation, just because constipation gets uncomfortable! I would rather know that I'm not blocked up. When this started at 15 it was much more constipation then D, and it seemed like a constant struggle to get it under control. Ab pain was different then too, but not associated with the constipation. I would take D since you don't have to remember if you pooed or not!

TheMrs: Wow that is a long time to be on Pred! I'm glad you are on meds though, I just hope you are able to taper!
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05-04-2011, 03:22 PM   #305
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Allie, my nausea and pain seem to happen independently of each other (except when I'm in a full-on flare, then all bets are off!). Sometimes I'm in pain but not nauseous, and vice versa. I tend to have nausea in the mornings and pain in the evenings, I'm not sure why that is. I've always been the sort of person who cannot stomach any solid food for the first few hours after I wake up in the morning, so I think my nausea might be a part of that. I was already nauseous when I got up this morning, and it got so much worse when I was packing my lunch, I couldn't even look at my sandwich as I was assembling it and I was holding my nose so I didn't have to smell it! But by lunchtime the nausea was gone and I ate my lunch with no problem. But now I can feel the pain starting to creep in.

Does anybody else get pains like you can feel food moving through a bad spot in your guts? I get that with certain foods, like Pringles. If I don't chew them to a pulp, it feels like the little sharp edges just cut and scrape me all the way through and it's especially bad in the LRQ.
05-04-2011, 04:26 PM   #306
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Guys, good news! I just got back from the appointment I had with my GP. It was the first time I met her, she's really nice, and basically reassured me that we WILL do whatever it takes to get me diagnosed and feeling better! I won't go into too much detail, save to say that it was a really good appointment and I am very pleased with her. She took ALL of my symptoms into account, including my hip pain, and she did note about the Accutane and said we will have to consider the possible connection. She explained everything to me, she told me everything I had read on her which is a great comfort. She said that if the biopsy results come back negative, then that's UC ruled out. Oh, and she also took my pANCA and cANCA because a couple years back my pANCA came back abnormal. She said that CD is NOT ruled out yet even if the biopsies do come back negative because we would have to run all the tests possible before ruling it out.

Anyway, it was so good to hear that, because she does believe that something's not right and she does suspect CD. She said that if EVERYTHING comes back negative, we will still have to investigate what that upper right quadrant pain I'm experiencing is.

She's ordered a CT scan with contrast for me, which I have to schedule still. She's having me keep a symptom diary -- what I'm eating, BM, blood, mucus, etc. And I need to see her in 6 weeks.

I just had to share because it was a very encouraging appointment. Except for the blood labs part, they had to take like 8 vials and aren't sure they got enough. They had a very difficult time getting it out of my veins, maybe I'm still dehydrated from the colonoscopy, or maybe it was because my BP is very low (114/50).

Aaaanyway, I didn't get a chance to read all the new posts here because there were a lot today! But I wanted to share the "good news" real quickly.
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05-04-2011, 04:37 PM   #307
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That *is* good news!! Hopefully they find out what you are dealing with for sure.




Weird question: does anyone ever find they have an exaggerated sense of smell? The last week everything smells terrible to me.
05-04-2011, 04:51 PM   #308
Cat-a-Tonic
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Ballerina, that's great news, so glad to hear you got a good doctor! I hope the CT scan can find something. From what I recall, drinking the CT contrast was not bad at all. Certainly not as bad as drinking colonoscopy prep! I have low blood pressure too and for a few days before my CT scan, my BP had dropped even lower and I was just dizzy and felt miserable. After drinking the contrast, my BP went back up to normal and I felt great! So I was happy to drink that contrast, ha ha. I'm not sure why it did the trick - I believe the contrast was barium mixed with lemonade. At any rate, I actually liked it.

The Mrs: YES! Even years before I became ill, I'd sometimes notice weird smells that nobody else around me seemed to smell. Then I'd blow my nose a few times and wouldn't smell it anymore. I was like, EW, gross, was I smelling my own boogers?? I figured I must have a very weird sense of smell if I can smell that! I'm sensitive to other smells, and if I'm flaring the smell of food makes me feel even sicker. Sometimes my husband makes popcorn and the smell of that just smells like pure pain. Oh, and once my mother gorged on cheese popcorn (used to be one of my favorite snacks!) right in front of me and I swear the smell nearly killed me!
05-04-2011, 04:58 PM   #309
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Even my pillows smell funny. It's driving me nuts! I had every window in the house open today to see if that'd help. Every time someone opens the fridge I smell something but no one else does. So weird!
05-04-2011, 05:16 PM   #310
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The Mrs, have you tried blowing your nose? For some weird reason that usually works for me (I hate to think that I'm actually smelling my own nose goblins, blecch). Weird about the pillows too. Have they been washed lately? Maybe some of that fabric deodorizer stuff would help? And maybe put a box of baking soda in the fridge, that's supposed to absorb odors.

Okay, this reminds me of a story. A few years ago, the fridge in the break room at my work smelled awful to me but nobody else could really smell it. I happened to have one of those car air fresheners, the kind you hang from your rearview mirror, so I put it in the fridge because we didn't have baking soda at work and it was the only thing I had that I thought might get rid of the smell that only I could smell. But apparently putting an air freshener in the fridge just makes everything smell WAY worse. Suddenly all my co-workers were complaining about how awful the fridge smelled. (It smelled the same to me, I didn't notice a difference in the level of stank.) Finally one of them decided to clean out the fridge and found the air freshener and it was determined that it was the cause of the smell. I don't think anybody ever found out it was me that put it in there (and honestly I didn't mean to make things worse!). Eventually that fridge broke and now we have a new one in the break room that doesn't smell... yet.
05-04-2011, 07:25 PM   #311
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I have an insane sense of smell, I smell anything and everything, so much so that I have trouble eating some foods because their taste/smell is so strong that I get tightness in my chest! And I hate it, because it's a huge bother. My mom had to change her favorite perfume because it was bothering me so much, and I am just so sensitive to every scent. My hearing is rather acute too, though, so I'm not too sure how much it has to do with any of this abdominal stuff.

cat, that's funny!

And about the contrast, I'm a little confused, because she said that I'll also have an IV with contrast. Does that mean I have to drink contrast AND get it through IV? I like lemonade...although I was close to swearing I wouldn't come close to it after drinking my "lemon-flavored" prep...
05-04-2011, 08:15 PM   #312
Cat-a-Tonic
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Ballerina: Yeah, they'll most likely both make you drink contrast and inject it via an IV. I was warned beforehand that the IV contrast makes you feel really uncomfortable for about 30 seconds. To put it bluntly, when they inject the dye, for some reason it makes you feel just like you peed your pants! It's not a nice feeling but fortunately it's just for a short time. I've heard some people say that it makes them feel warm all over, whereas others just feel warm "down there" like they peed themselves. So don't worry if you get that feeling, you didn't really pee yourself!

I think every hospital does their barium drink a little differently, I'm not sure if you'll get lemonade or not. I've heard others say they got a choice of flavors so it might be a little closer to prep than you'd like. But however they prepare it, it's still much easier to get down than prep!
05-04-2011, 08:25 PM   #313
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That's so funny, such an awkward feeling. I still need to schedule the appointment, so I assume they'll tell me all about it then. Isn't barium the stuff used in explosives? LOL.
05-04-2011, 08:31 PM   #314
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I'm not sure what barium is used for besides being a contrast. It certainly doesn't sound like something that should be ingested - when I first found out I had to drink barium, I freaked out! Like, wondering if it was going to make me glow in the dark or something.
05-04-2011, 09:22 PM   #315
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Like, wondering if it was going to make me glow in the dark or something.
"Stones made from impure barium sulfate glow when exposed to light and will glow in the dark for up to six years if intensely heated in the presence of charcoal."
http://education.jlab.org/itselemental/ele056.html

05-05-2011, 06:31 AM   #316
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Yeah sometimes I get so sensitive to smells (for me it's cooking smells) that it makes me feel sick right in my mouth- do you know what I mean? Like hyper sensitive.

Been on the 4 different meds nearly 5 weeks now and getting worse if anything, whether that is a natural downhill progression or the meds I don't know. Finishing the Spasmonal tomorrow and didn't get a refill since it ain't doing anything for me, had some really really bad pains the last few days and D not been great.

No GI appointment through yet (which is not exactly a loss) or heard anything about the scan I did remind Rheumy last week I was still waiting.

The more I think about it the less through I see my GI has been. No CAT scan/MRI, upper scope, stool test (one in 2006 and one a few years later which checked for norovirus after flu) or Pill Cam (which for those that don't know I had booked and then withdrawn). Seems he never even seriously considered IBD but was happy to think IBS dx in 2007 was right all along, as I have suspected. He's telling me my blood would show him CD but he is ignoring 5 years worth of raised CRP!!

Although I didn't want to take the fluxotine I did think it might work since I had success in the past with Amitryptiline for a similar effect but it hasn't done anything. 5 weeks as I said and supposed to start working after 2. And it's double the dose of the old one. *sigh*

On a positive note I finally got my garden kneeler/seat which should help me out alot. But surprise surprise not well enough to test it out today! Shoulder is killing me, going to have to force some crackers down so I can take a painkiller.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
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2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!

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05-05-2011, 09:04 AM   #317
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Ballerina, that's crazy! I really might glow in the dark after all! Eek!

Star, I think you're right, it sounds like there's a lot of tests your GI hasn't ordered for you. I've had most of those tests and you've been ill for longer than I have, that just doesn't seem right to me. Sounds to me as though he decided early on that it's IBS and isn't willing to change his mind. In that case, I really really hope your rheumy can get you that scan and/or that the gastro specialty place can help you towards a diagnosis.

What's the garden kneeler seat for?
05-05-2011, 09:45 AM   #318
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Thats great news happyballerina! I'm glad she assured you that they want you on the road to diagnosis. Yeah, the barium IV made me feel like I peed my pants too - both times I got my CAT scan. Freaky feeling! But its easy, and the barium doesn't taste bad. One time I had no flavor, the second time lemon.

Sat, I'm so sorry you are feeling so bad. I am really hoping you find another GI, this one just sounds terrible. You need a dr that isn't set on you having IBS. I'm really surprised you haven't had a CT or upper scope. Thats insane!
05-05-2011, 02:25 PM   #319
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The garden kneeler is to help me with the gardening, I have a massive amount of weeding to do before I can continue with planting. I can't do as much as i'd like now but I can do a little now and then. I really enjoy it and find it relaxing I take more of a natural approach, like weed, plant the plug plants, water, chop off dead bits. Not like my Dad who is more of an ornamental gardener, removing stones from the soil lol!

Had a chat with Mum and we've decided to go ahead and ask to meet with the complaints service to discuss our concerns. And asking for an independant review of my case. Not intended as a replacement for second opinion but an overview would be useful we feel.

As for an upper scope, not sure how useful it would be. The WBC scan found the inflammation lower left but they only scanned my belly and not my chest. So maybe it would be useful. I just can't believe I haven't even had a stool test!

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05-05-2011, 03:30 PM   #320
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Good luck with the complaints service meeting -- will they be able to tell your doctor he needs to improve your standards? Or somehow intervene?

I just picked up the contrast for my CT. I called to make the appointment and was surprised when they said they had a slot open on Monday at 9:00 in the morning. I thought I would have to wait forever! Anyway, I'm scheduled for 9:00 on Monday morning and BOY do I feel I deserve a milkshake (or even better, vodka with diet sprite...) after all these drinks! Lol

They said not to eat or drink anything after having the contrast, but I can recall them saying anything about fasting before drinking it...does anybody know?

I'm nervous, I feel like I just know they're not going to find anything because...well, just my luck? We'll see, anyway!
05-05-2011, 03:38 PM   #321
allieinwonder
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happyballerina: I don't think you have to fast beforehand. But don't quote me on that, I've only had my CT scans in ER's, but they have never asked me about my eating beforehand. Good luck! I hope it shows something!
05-05-2011, 03:40 PM   #322
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Ballerina, when I had my CT I was told no food/drink for 4 hours before the scan. And I had to arrive 1 hour before the scan so I could drink the contrast there (so basically, 3 hours no food/drink and then 1 hour only contrast - and they told me I didn't have to drink the full amount of contrast but to try to drink as much as I could - they gave me 3 big glasses and I got down about 2 and a half in the span of an hour). You might want to call just to make sure, though, because every hospital/doctor seems to have slightly different instructions for prepping/fasting before tests.

Also, I hope you don't have a lot of plans after your scan. I've heard that most people get constipated as a result of drinking the barium, but for me it was the opposite and I had extremely watery, explosive d about an hour after I drank the contrast (I just barely made it home in time, almost had an accident in the car!). I guess that for some of us who tend to have d anyway, it just makes the d like 10 times worse. What fun.

Star, I wish I were as into gardening as you are. I had a little garden last year with just tomatoes and pumpkins in it. For some reason the pumpkins all "went missing" (we later found out that certain people in our neighborhood think that it's acceptable to cut through our yard even though it's not really a shortcut - after my husband had asked these people not to walk through our yard, we noticed our pumpkins were suddenly gone, so I suspect they were taken by those same people). So, I had tomatoes and that was about it. I don't have much of a green thumb or patience for plants, so I'm not sure if I'm going to make an attempt this year at having another garden.

I hope things go well when you meet with the complaints department. Let us know how it goes! I hope you're able to at least give your GI a wake-up call by doing this.
05-05-2011, 03:47 PM   #323
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I wonder if fasting helps with showing GI issues with the CT? I know recall I had eaten about 2 hours before I had the CT the last time - my dad came to my sorority house and dragged me to the ER right after my husband had gone to the airport to fly to Germany. I wonder if that made it where the CT couldn't show as much? hmmm...

I agree, you should call the hospital. I would make sure the test can show as much as possible.

I have a little garden started, but everything is starting slow lol. We have petunias, roses, and strawberries so far. We live on the second story of an apartment, but the balcony came with tons of window boxes that I am trying to fill. I can't seem to get it done though, since I haven't felt good lately. Hopefully tomorrow I will at least finish planting the petunias (they are still in pots outside)!
05-05-2011, 03:57 PM   #324
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Allie, I have no idea if fasting for longer would show more. I didn't do any prep, so surely I still had some food/feces in my intestines when I had my CT scan. 3 or 4 hours fasting shouldn't really make that much of a difference. It always bugs me when it's a no food or water fast - like, is water going to really make that much of a difference? It's going to go to my bladder, not my intestines. Maybe stuff's easier to see on a scan when the body is slightly dehydrated? I don't know.
05-05-2011, 04:12 PM   #325
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Thats true, it wouldn't make much of a difference I guess. Maybe the barium needs it drier to coat it? *shrugs*

I know for my small bowel follow through I have a 12 hour fast. Now THAT will make a difference lol, esp with the D I seem to have lately.
05-05-2011, 04:42 PM   #326
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Allie, a 12 hour fast?? A lot of that time will be spent sleeping, right? Wow, so a 12 hour fast and then a multi-hour test. That sounds like a very long day! Bring lots of stuff to keep yourself distracted and entertained!
05-05-2011, 04:55 PM   #327
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I know, its going to be a fun two days lol. Yeah, most of that 12 hours is spent sleeping, thank goodness! I've been doing research tonight and the hospitals in the states that have info on their SBFT actually have them prep like a pill cam...yuck! The only thing I'm worried about is the 3.5 hour drive on no food/water. Then the test itself takes anywhere from 2-6 hours, since they continuously take X-Rays until the barium is all the way through the system. I'm hoping to have a book or my iphone to keep me entertained in between takes!

The research I've done though gives me hope that this will help me with a diagnosis. It can see inflammation, ulcers bigger than .25inches in diameter, strictures, etc. Apparently it was how small bowel crohn's was diagnosed before the pill cam, and a medical journal I found says it is statistically just as successful.

Here is the link I found: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774782/

I really don't want to get my hopes up, but I am still hoping this is the test that changes my diagnosis from severe IBS to IBD. My husband and I just know this has to be crohn's, and I want treatment!!! I'm tired of being looked at like I'm crazy. Its so hard to figure this out in my head when all my tests have looked fine, my GI thinks my blood tests are spectacular...but I feel like I'm dying?! Its just very hard to sort out. I'm hoping this is the first test to finally physically show how sick I feel.

That turned into a rant...sorry, its one of those nights!
05-05-2011, 05:09 PM   #328
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Don't worry about it, I totally understand the need to rant (and the need for a diagnosis!). I really hope you get some worthwhile results from the SBFT! Especially after all that fasting and waiting 2 - 6 hours for the test to be over! That sounds like such a long test. I haven't yet had a test that's that long.

The longest test I've had to date was a blood test to check for Addison's disease, as Addison's responds to pred and it can sometimes cause diarrhea, nausea, abdominal pain, etc. And since it's an adrenal gland disease, tests like colonoscopy show up normal even with bowel symptoms present. So even though it's a pretty rare disease, my GI thought it was worthwhile to see if I have Addison's or rule it out, especially since I respond well to pred even in low doses (the ideal dose for Addison's is 7.5 mg, and I felt fantastic at 10 mg of pred). So I took the Addison's test. I had to get to the hospital first thing in the morning, like 7 AM. They tested my baseline cortisol levels and then injected me with this stuff that in normal non-Addison's people it makes their cortisol levels rise. In people with Addison's, their cortisol won't rise or will just barely rise. Then they check my blood every half hour for a few hours to see what my cortisol levels are at. I read that in normal people, baseline cortisol is between 20 and 30 (I don't remember the unit of measure), and at the end of this test their cortisol usually doubles or triples. Well, my baseline cortisol was 20, so on the very low end of normal, and it went up to 28. So it didn't double and certainly didn't triple! Which is why I sometimes do wonder if I have Addison's and that's why nothing shows up in the IBD tests, although I don't have other Addison's symptoms such as darkening of the skin (supposedly President Kennedy had Addison's and that's why he always looked so tan).
05-05-2011, 05:12 PM   #329
StarGirrrrl
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Don't worry that's what we are here for!

If the SBFT doesn't show anything then you have the Pill Cam next right? So you've got it covered either way.

The barium goes through people at different rates, I wasn't in the testing area 2 hours!

The meeting we want to set up is basically an "enough is enough" kind of thing, the delays, messing around with tests and GI's competence.

We are reasonable people and won't expect an instant diagnosis but it's been too long now and it's not as if I can live semi normally in the mean time. And there have been so many things happen that have to be a breach of clinical guidelines.

Last edited by StarGirrrrl; 05-05-2011 at 05:19 PM.
05-05-2011, 07:28 PM   #330
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I feel really bad complaining about a lack of diagnosis, at least we have IBD and are on treatment the Remicade is a miracle. I hope your tests find something!
Trina
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