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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. :(
 
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!
 
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. ;)
 
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!
 
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.
 
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.
 
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.
 
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!
 
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!
 
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. ;)
 
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...
 
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!
 
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.
 
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. ;)
 
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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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?
 
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!
 
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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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 :D

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!
 
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!
 
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.
 
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)!
 
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.
 
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.
 
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!
 
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! ;)
 
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).
 
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.
 
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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
 
Thanks! I know we all need to vent sometimes, lol.

Cat, that is really interesting! Is there any other tests for addisons that could see if maybe thats it? Its weird that you only rose a little bit yet they didn't investigate that further.

Star, yeah, I do have the pill cam after that, so I'm hoping at least one of the tests shows something. With my pain being so high right now I'm thinking something will show, so I just need to somehow get the flare to last till the test. Easier said than done, and sounds crazy, but oh well!

Trina, don't feel bad, we all suffer and get frustrated with our own situations. I could see having a vague diagnosis just as frustrating! I have seen so many on this forum have a diagnosis, and then it be taken away, like your son, and I think that is just ridiculous! If I get a crohn's diagnosis and they try and take it away I'm switching doctors before they can make it official! ;)
 
Ooh, I know what you mean Allie, I haven't had major major pain or major major D since...about a week ago? And my CT is on Monday. As crazy as it sounds, I'm really hoping both of those come back by the time I have to get my CT scan done so that it's not just a waste of a test. Hmm, what can we do to NOT feel better but feel worse?? LOL!
 
I googled "length of time for crohn's diagnosis" and found a medical journal that did a study that found that the average length of time from start of symptoms to diagnosis was between 8 and 11 years! Thats insane! They said it can get worse if they crohn's is only in the small bowel, and even worse than that if the patient also fits the Rome criteria for IBS.

http://www.medversation.com/medversation/hcp/section/PRE/S615DBF1F-1858-49E3-9C9D-605CC59491A3.html

I'm almost on year 7 of having this illness, so I'm really hoping these tests figure it out! O.O

I just realized I am getting way into these medical journals, lol. ;)
 
Well I'm still officially a member of the undiagnosed club, even after a very very expensive stool test :(. But what the heck, I'm looking outside now and its bright sunshine and I'm looking forward to a nice walk in Buckinghamshire with the Hampstead ramblers.

Going to try really hard to not let this get me down, been feeling sorry for myself the past few days.

I'm very sorry to read that a lot of you fellow undiagnoseds are suffering so much. Cat I know the feeling with the bloating and farting, I seem to spend me entire day looking 9 months pregnant. It does have a few advantages, like sometimes people give up their seats on the tube, but at the same time, its a bloody nightmare and I hate it.

Allie, constipation is a tough one. I suffered with it chronically for years. The thing that I found most helpful for it was a lymphatic massage. It is fantastic, but they aren't cheap! It will def get you running to the toilet though and will help to relax you as well. I think stress makes us a lot lot worse. I find when I'm relaxed I feel so much better.

xxx
 
yeah, it was hard for years, but I only suffer from it now if I take my tramadol for a few days, lol. My trick now is caffeine (coffee or energy drink) when I wake up on an empty stomach. It kicks my bowels into high gear! lol ;) When it was chronic I found miralax the best way to help it out. One time in college I let it get so bad that when I took miralax I went 6 times in one day..of course, that is normal now with the D, but then I was shocked!
 
Hi All,

I've just started on this diagnosis journey, you may have seen my post in my storey but I'll recap....

Always been a 'bloaty' person but it became particulalry bad a couple of years ago after a trip thru South America, suffered very badly with altitude sickness and diarrhoea, my tummy never seemed to recover. THe bloating was so bad it'd double me over and really hurt my back. Knew in my heart all was not good but man is denial a powerful thing!
January this year the diarrhoea started and hasn't stopped since, also extremely fatigued with joint pain....easy to ignore until the symptoms started to stack up
-erythema nodosum
-sclertis in my left eye (man i was miserable with that)
-extreme fatigue
-blood and mucous
-anal skin tags and boils
-5kg weight loss (the one and only silver lining!)

And once I finally accepted that it was happening and went to my GP my bloods showed raised CRP and white cells and borderline anamia.
I have been feeling a little better over the last 3 weeks, the fatigue doesn't seem to be quite so bad. Looking back over the first 4 months of this year I reallyt dont know how I've managed to keep going, with constant diarrhoea and doing 12 hour shifts sometimes without eating due to having no appetite what-so-ever...like I said denial is a very powerful thing.

I'm a nurse and had already diagnosed myself (with the help of Dr Google) with chron's before I saw my GP, but when she agreed it was likely the case I have to say I was pretty gutted. She's referred me for a hospital appt which I'm still waiting for.

One of my biggest fears is that even with all the symptoms stacking up as they are that I wont get a diagnosis. I cant imagine how frustrating it must be to know how ill you've been and then be told that everything looks normal....

....and YES!!! My nostrils have become CRAZYILY sensitive, I work in ICU and we are confronted by some very awful smells every day, it makes me feel so nauseated and is that bad that I have seriously began to wonder if I can stay in this job.

So now that I have come out of denial and got the ball rolling I'm anxious I'm just waiting and wondering what the outcome will be, hoping I dont have to be part of the undiagnosed club for too long!
 
Sorry you have to join us soretum! I think we all understand diagnosing yourself here - my GP first told me crohn's was probably what I had (she was pressuring me to go to a GI because she was afraid I was getting worse), and since then I have stuck to this and it fits perfectly. Its interesting that you got it after a trip to South America.. have you been checked for parasites or a bacteria that might be causing your problems? I was tested for it to see if it was something that could be treated, which would be much better than a chronic illness! I hope your appt goes well and you figure out what is ailing you soon!
 
That's interesting, because while I have had minor stomach problems (namely what I referred to as a "bubbly" stomach), my real problems started this winter after having had the stomach flu. I was sick, and then got better, but from then on I have had these IBD-like stomach issues. Soretum, welcome to the club, I hope you don't have to stay too long either (I am new-ish too.)

I wonder how often it is that people get IBD symptoms after having been sick.
 
Saphira and Soretum, welcome to the club! Sorry you have to join us, but hopefully you can take some comfort in the fact that you don't have to go through this alone - we're all in this together!

I definitely count myself among those who got this illness after catching a virus. I've always had a "sensitive stomach" and I can remember having anal fissures in high school and college, but I never had symptoms that were horrible or debilitating back then. In October 2009, I was at work one day and feeling fine one minute and just awful the next. Waves of awful nausea, abdominal pain, and weakness just shot through me. My hands started shaking and I started sweating. I went home sick, and about 5 days later when I was getting worse instead of better, I went to urgent care and got IV fluids and anti-nausea meds, and I was told that it's probably viral gastroenteritis and that I should be feeling better soon. I slowly, slowly started to get better but I never felt 100% back to my old self. Then my symptoms came back in full force again, and again, and I realized this is something chronic and no longer "just a virus".

I've done a bit of reading on this, and from what I've read, researchers still don't know exactly what causes IBD, but they think it's a combination of things. Genetic predisposal (my grandfather had UC so there is IBD in my family tree), a gut environment that's susceptible (I'd been taking a lot of ibuprofen before I became ill and also antibiotics for recurrent UTIs, so I probably killed off a lot of the "good" bacteria in my guts and made an ideal environment for IBD), and a trigger like a virus or bacteria to kick-start the immune reaction which then cannot turn itself back off again. So yeah, I think I fit all those criteria perfectly, unfortunately.

Allie: With regards to the Addison's test, I actually had two tests. The first one was short and just measured my cortisol, which was low in the afternoon (it supposedly starts out low in the morning and then naturally rises throughout the day). Based on that result, my GI and GP agreed that I should have the longer test, which is considered the "gold standard" for diagnosing Addison's. Even though the results weren't what they should be, my GI and GP both agreed that it rose sufficiently enough to rule out Addison's. I asked GI & GP several times if I should be referred to an endocrinologist just to be sure and to get an expert opinion, since GIs & GPs don't normally deal with Addison's. But I never got that referral. So it's just been in the back of my mind. They're probably right, I probably don't have Addison's. I have IBD symptoms like joint pains and night sweats and I don't have other Addison's symptoms such as skin darkening. But I guess I'm just not 100% sure in my mind that it's not Addison's, you know? It'll always be a little bit of a question mark for me. But I do still think this is probably IBD, as it does fit better. Still, Addison's would explain why every IBD test has come back normal.
 
I'm so relieved to find this thread and to know that I am not the only one who is going through this.

I'm 21 and I've had symptoms for as long as I can remember but lately they have been getting increasingly worse. I have mouth sores, D, hair loss, fatigue, muscle and joint pain, and more. For the past year or so I thought it was celiacs (gluten-intolerance) but now I suspect that there must be something else going on because no matter what I eat I keep on becoming increasingly ill.

I'm going to a diagnostic clinic this week so hopefully I'll finally get some answers.

Good luck to everyone else here :)
 
Welcome tessa and good luck at the clinic!

Does anyone else find that they're constantly dehydrated? I mean, I'm ALWAYS drinking and I still can't satisfy my thirst! And I haven't had any D lately, either. Actually, today was a pretty good day. I had several BM but none were D, in fact if it wasn't for the sheer number of BMs I would think to say I've been a little constipated. Which is weird.

But anyway, just wondering about dehydration. I'm just always thirsty. Could I be losing water even without major D?

I know there was no inflammation in my colon (colonoscopy proved that), but if I have inflammation in my SI it wouldn't be strange to associate dehydration with that, I would think? Considering the SI is where liquids are absorbed?
 
I didn't know there was a drinkers club! I think I'm officially a member, I glugg back about 4 liters of water a day and STILL i'm parched.

I read somewhere that having a build up of toxic metabolic waste inside causes constant thirst and also excess acidity. But I think loads of things can cause thirst, including diabetes.

Cat a tonic, those symptoms sound dreadful, and you are still undiagnosed? IBD is very difficult to diagnose it seems, since there are so many of us in the undiagnosed club.
 
Happyballerina- the colon is where liquids is absorbed, not the SI. If your stools are liquid or runny, that means you are not absorbing the water you drink. Since you're producing fairly normal stools, there could be another reason for yoyr thirst such as diabetes, and you should get checked by a doctor. Also, have you tried proper rehydration drinks? Check out our wiki www.crohnsforum.com/wiki/diarrhea There's a link to a recipe for a rehydration drink.
 
Great news everyone, got my CT whole body scan appointment through today for this Thrusday at 7pm! So so so happy. Not before time either I am feeling awful these days.

Only prep is to drink half a litre of fluids but I can pee if I want too and do it at the Hospital if it will make journey difficult.

Going to raise the WBC scan issue before the test and ask them to pay special attention to my belly area.

Got to email Rheumy as in the past i've been kept waiting a few months for positive test results with that department. So I am going to suggest I am either called in sooner or a report sent to my GP if they can't give me a new appointment.

Meanwhile we will plan our complaints service meeting and i've said if this scan doesn't show anything then it will have to be the second opinion in London. Because if negative GI won't be any more helpful and Rheumy wants to trial immunosuppressants as next step.

And i've also been invited to Australia for a schoolfriend's wedding which is amazing. I won't be able to afford to go but I can say i've been offered an Aussie holiday hehe. Also won £5 on the Euromillions Lottery last night. So good things do come in three's! Kind of makes up for how awful I feel this morning!
 
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StarGirrrrl that is fantastic news! Wow I am really happy you re getting this test done and I really hope it can show the results, which will lead to you getting the help, care and support you need.

xxx
 
Thanks! So excited and getting hopes up although I know I shouldn't. 5 years of high CRP, a positive WBC scan (since it was!!) means this one should should find again the inflammation and GI won't be able to refute 2 scans. Pleased it's a full body too as the WBC scan only scanned belly area.

Even if this leads to more tests and waiting at least I will be getting looked at again and taken alot more seriously.
 
Thats great star! I am so happy for you!! I really hope it shows the reason why you have been feeling so bad. The liquid you drink is barium to show the lining of the intestines. Very easy test!

Tessa, sorry you had to join our club! I hope you appt gets you answers!

I have had a bad night myself. My inlaws are here and I have trouble having bm's when people are around (it took months to be able to in front of my husband). So, I am not having D, but awful constipation. I have been on tramadol on and off the past few days because of really bad pain, and now they are here, so my system is a bit backed up. I am in so much pain now I couldn't stand straight or walk...I am so embarrassed! I didn't want my in laws to see this! We walked around all day, and I ate lettuce...I am a little stupid, yes, lol. I'm just hoping nothing is seriously wrong (Stuart suggested the ER again...oh goodness). So now I am on more tramadol, and I also took ducosate, which lets the intestines absorb more water, so I'm hoping that will help. Chugging gatorade here I come! :(

Its days like these where I cannot wait until I get my diagnosis. IBS wouldn't put you on the bathroom floor, curled up in a ball, crying. Having the correct drugs will make this so much easier to live with!
 
Sorry to hear about your bad time allie :( I know what you mean, IBS can be nasty but not like we are experiencing.

For my scan it's clear fluids I have to drink before the appointment. Rheumy wanted an FDG-PET scan which is an injection of a type of glucose (attracted to inflammation, like the radioactive stuff I had for WBC scan) from what I can gather, and appointment letter states full body CT.

So I won't know exactly what is happening until I get there :)

I just hope I can last out until Thursday and then the results, things are getting quite bad.
 
Allie, could your husband take his parents out of the house for a bit so you can do what you need to?

I heard from my GI that my stool sample was normal. She rushed off the phone so I don't know what my other labs showed but I assume I'll hear soon. I think the prometheous test takes awhile.

I'm actually feeling a lot better, except I'm still running a fever and I'm still having some occasional nausea but I am mostly able to eat again so that's good.

In other words: same sh** different day.
 
Allie I am the same, when other people are aro9und I just can't have BMs at all, I don't know whether its the embarrassment of them hearing or something, but the constipation it causes is awful.

When it comes to pooing with other people in the house I think it takes getting used to in the long term. I agree with The Mrs though, could you ask your husband to take them out and leave you to it for a short time?

You take care chick and look after yourself
xxx
 
Wow, lots of new posts here. Here goes my attempt to respond to them all...

Hi Tessa, welcome to the club. Hope you don't have to stay in this club too long! Good luck at the diagnostic clinic, I hope they can get you some answers.

Ballerina, YES, I get dehydrated frequently and easily. I had to have IV rehydration maybe a half dozen times in 2010. I always get dehydrated when I do colonoscopy prep too. I keep a lot of Pedialyte and Gatorade on hand and I make sure to try to drink a ton of water every day. Even so, I still get dehydrated easily and often, especially in a flare when I'm having bad watery d.

Heidi, yes I'm still undiagnosed. Going back to my GI in June and am going to ask for more tests then. I still haven't had SBFT or MRI of my guts (MR-enterography).

Star, I'm so glad to hear you've got a test coming up soon. I hope it gives you some answers! Keep us posted, we'll be thinking about you on Thursday!

Allie, sorry to hear you're not doing well. How long are your in-laws staying for? I used to not be able to poo when other people were around, but I've gotten over that lately. Especially at work, because there's 3 stalls in each bathroom so I frequently have to go while other people are sitting like a foot away from me on the other side of a little partition. Lately I've taken the attitude of, so what if they know it's me - wait till they hear the sounds that come out of me, they'll feel so awkward and embarrassed and I'll be laughing on the inside! Then I put a little smile on my face and fart & poo to my heart's content. :D

I'm actually having a really good weekend - which automatically makes me suspicious, wondering if this is the calm before the storm. I went garage sale shopping with my good friend (who is a Crohnie), then my mom came over and the 3 of us went chocolate shopping, then my mom and I went out to lunch and I actually ate spaghetti with cheese on it which is a HUGE no-no for me as cheese always kills me - but, I was fine! Then I took the dog for a walk, rested a bit, and went to a comedy club with hubby and a few of his friends. Today I slept in, took a nice bath, took the dog for a walk, and am just about to eat my leftovers from lunch yesterday. You know, with cheese! And I've had normal solid poos yesterday and today. It's insane. I feel almost normal. I know it's not going to last, which is why I'm having a hard time appreciating it now. It's not normal to feel this normal!
 
Okayyyy, so remember I just said about how my nice weekend was the calm before the storm? The storm hit right after I posted that! I'm still fine health-wise (although the stress may make my bowels bad very soon). Some man who was apparently on drugs or something just started ramming into parked cars on the street right in front of my house. There's a big tree in front of the house which possibly prevented him from driving up into my yard My neighbors cars got smashed up - our cars were fortunately in the driveway so no damage to anything except our tree, and no people got hurt. And they caught the guy right away. Still, it was really scary! This psycho was slamming into cars at top speed and continued spinning his tires after he'd hit another car. I'm like shaking, it was really awful to witness something like that happen! All in all I think 3 of my neighbors cars got hit, and 2 have really bad damage. So scary!
 
Cat -- so happy for you that you've been feeling well!

You know what? ME TOO! It's AWESOME.

Both my stomach and my hips have been feeling great, and really I'm just hoping it'll last! I have even been having normal BM -- not even loose stoold today after I had my luna bar with black coffee (and that always makes me go urgently and with loose stools.)

I have my CT scan tomorrow but I don't even care if it doesn't show anything as long as I keep feeling this good. Maybe I don't have IBD! Maybe it was just something random, who knows? We'll see I guess, but honestly as long as I keep feeling well (especially my hips, I know it sounds weird that I care more about that than my abdominal issues, but hey they're really important as a ballet dancer) I'm quite satisfied. Less stress, that's for sure.

And if I start feeling bad again then I can start investigating again. I'm keeping my CT scan appointment, but I doubt they'll see anything because I've been feeling so well. Here's to hoping it stays that way!
 
Wow cat!! I must not have refreshed the page before posting my reply! What a turn around of events :(

That sounds very scary, but I'm glad no one got hurt and that you don't have the burden of dealing with any damaged cars and whatnot.

On the plus side, I'm glad you're still feeling well.
 
Thanks Ballerina. I'm still kind of shaking, the police are still here and they still haven't towed any of the damaged cars away yet (at least one of the cars looks undriveable). My neighbors on either side of my house are the ones whose cars were hit, and both were having family get-togethers for Mother's day. My neighbors are really nice people and I feel so bad for them! What a bad/memorable Mother's day for everyone in my neighborhood. I was just about to eat lunch when this happened - lost my appetite now though! :(
 
I just went to the bathroom and the BM was normal except...there was blood! And i was doing so well :-/

But it was only when I wiped and only a teensy tiny bit so I will record it in my food and symptom journal but I doubt it's anything to worry about; well I hope. It really was only a bit. And bright red. I bet I just have a scratch on my bum. Even though I haven't had to wipe like a madman recently, and it doesn't hurt like I have a scratch there. But let's just pretend it's nothing...

Cat, that really is a shame that they were having family get-togethers while it happened. It must be have been really shocking. Was the crazy man that did all the damage hurt himself?
 
Ballerina, I have no idea if the crazy man got hurt - he didn't seem to be hurt when he finally did drive away (the cops caught him just up the street thankfully). The cop that my brother talked to said that there is definitely something wrong with the guy, but they're not sure if he's on drugs or what. I'm going to watch the news tonight to see if they say. I think I have to call the city too because the tree that got hit is technically the city's tree (it's on that bit of land that's between the street & the sidewalk, which is owned by the city and not by us). I have to make sure the tree is still structurally sound after all this and won't come down on our house or anything like that. So maybe I can get more information about the guy since my tree is involved. I want to know his identity for sure so I can make sure to look out for him in case he ever comes around here again. I don't think he lives in the neighborhood as I haven't seen him before, but that doesn't mean he won't come back and take more drugs or whatever, you know?

Sorry to hear you had some blood - do you have an anal fissure or a hemorrhoid? Both of those can bleed bright red so hopefully it's one of those and not coming from your intestines. I get fissures fairly often, usually when I have a hard BM I can feel my anus tear just a little bit, and then I get a bit of red blood on the TP every time I wipe until it finally heals. So hopefully it's just something like that and you can heal easily. Internal hemorrhoids don't hurt but can bleed, so it might be that too. But I think hemorrhoids tend to bleed quite a bit, so if it was just a little blood and just when you wiped, it sounds like a fissure to me.
 
I don't know if I have a fissure or a hemorrhoid. My colonoscopy showed internal hemorrhoids but it said they were non-bleeding. How do I know if I've got a fissure? And I don't think I've got an external hemorrhoid, but what do I know? I don't even know how to tell if I've got one! Lol.
 
I haven't been able to see my fissures when I get them, I just feel a bit of pain when I'm having a poo (it's basically a little cut or tear in the anus that can get irritated and sometimes can open up again during every bowel movement). And I get a little bit of blood on the TP when I wipe. But I've never needed medical attention for my fissures, as they seem to heal up after anywhere from a few days to a few weeks.

You'd know if you have an external hemorrhoid - as someone else on the forum once described, it's like a pea between your cheeks! You can feel a lump on the outside of the anus and you can see it if you hold a mirror up to your backside, and it can hurt like crazy. I had an external hemorrhoid that took many months to finally go away and it hurt a lot especially when it first appeared. But it didn't bleed, I think internal hemmies tend to bleed much more than external ones.
 
Yeah, they leave tomorrow, so I'm not too worried about it as much atm. My pain is better today, and I was able to do, but it was covered in blood. It was the amount a really bad cut would have. I'm not sure what caused it, but I'm hoping it doesn't happen again. I drank a bunch of water and gatoraid today and took more docusate. Once they leave tomorrow I know I will be able to go easier...I wish it wasn't a subconscious problem!

Wow cat, what an ordeal! I hope he has to pay for all the damage he caused. I cannot believe someone would do something like that?!? I hope you feel better soon as well. I hate it when I feel better, think maybe it was all a phony thing, and then it hits you worse than ever before.

happyballerina, I hope you continue to feel better, but I also hope if you have something wrong that the CT scan shows it!

TheMrs I hope they figure out something soon! :(
 
Ah a fissure so that's the name of it! Knew it wasn't too scary but I get them from time to time. I recognised the signs so don't panic on those occasions when I see blood.
 
Yeah, I'm pretty sure I get fissures too, which is why I bled so much yesterday. I don't think it was the external hemmie that caused it because I checked and the bleeding was coming from much higher up...covering the stool and the tp. DH was concerned but the bleeding slowed down, thank goodness!

I hope everyone has a good day! :)
 
Hey guys I just got home from my CT scan! It was a bit intimidating, actually, I started tearing up at one point and getting lightheaded/short of breath, I think it was just anxiety. I had an MRI a couple years ago before my second ankle surgery but this was much more "frightening", but I think only because of the IVs. As usual, the tech had the hardest time finding a good vein, and then when she did find one she was not able to insert the IV as the vein kept slipping away. After heating pads and beating up my other hand for a bit she finally got in, but then it stung terribly with the IV contrast (only for a few seconds though). And the warmth was so strange! But overall it was quick and easy and the tech was great, so nice and really tried her hardest to make me comfortable. The barium contrast I had to drink was not nearly as bad as the prep like you guys all assured me. It wasn't particularly tasty, to say the least, but it also wasn't that bad.

Anyway, I just though I would update. Obviously I don't have the results yet.

On a different note...do you guys get bloaty like me? It seems that, especially when I wake up in the morning, I feel swollen/bloated. I hate it, because it feels like I'm waking up full from the night before which in my opinion is a bad feeling, I like waking up hungry. But I know I'm not actually full, just bloated. Curious if that's common. I really do hate it!!

I had some really bad stomach cramps a little while ago, no idea if it's from drinking the contrast or whatever, maybe it's just gas. It's gone now, anyway, after a loose BM. I was feeling so good...I hope I don't start feeling bad again.
 
Ballerina, yes I get bloated pretty frequently. It was really bad after the gastritis that I had a few weeks ago. I got so bloated that, even though I had lost about 5 lbs, pants that normally fit me were suddenly tight and uncomfortable in the waist! When I get really bloated like that, it seems like I fart and fart but I still can't get all the air out to where I'm comfortable again. I hate it and I haven't found a good remedy for bloating yet. Anybody else know of a good way to reduce bloating?

Glad to hear you made it through the CT and had a good tech. I hate having an IV put in on my hands and especially on my wrists, that area just hurts so much! I have pretty good veins in my arms but even so I sometimes get a nurse who is insistent on putting the IV in my hand/wrist. I hate that!

Allie, I haven't had a fissure where blood coated the stool, usually I just get blood on the TP. I suppose it could be a large fissure, or internal hemmies (those don't hurt but they can bleed) or possibly an ulcer/fistula/something else like that which is bleeding higher up. You should definitely tell your GI about it the next time you see him, just in case it's something besides a fissure.

Well, my guts are bad today. It's partly from the stress of seeing the crazy person smash up all the parked cars yesterday, and also partly from the stress of seeing my hubby in awful pain, again. He's got kidney stones and yesterday was his worst pain yet. And, his doctor had promised to send a refill prescription for vicodin to the pharmacy. Hubby only had one vicodin left and he needs two when the pain is awful, so I took him to the pharmacy - but no prescription. The stupid doctor forgot! It's been cleared up this morning and hubby's feeling much better, but basically I can't sleep when he can't sleep, I stay awake worrying about him. So I am stressed and exhausted today. :(

I hope everyone else is doing better than I am. Star, only a few more days till your scan, and Allie, only a few days after that and you get your SBFT! And Ballerina, your CT results should be back soon too! I hope everyone gets some answers! Good luck to all!
 
Ballerina, if you are having cramps it could very well be from the contrast - the Barium I had to drink before my CT gave me horrific cramps and D. I was worried I would not make it through the test b/c I started cramping in the waiting room before it ever started. Also, my OBGYN requested a copy of the results for himself, and they told me that these would be available later that same afternoon. I don't know what they told you but I would call the doctor who ordered the CT tomorrow or something to see if they have them. And I recommend requesting a copy of the report for yourself. I have had a couple of different nurses leave out important information when reporting test results over the phone and I only caught it by getting a hard copy for myself. Just my two cents.

Good luck.
 
I always have blood taken from my hand with a butterfly needle, it is painful but I am used to it really! Pointless trying my arms, they won't get anywhere. I have very deep veins as do the majority of females on my mothers side. My Dad has great big pop-out veins!

One Path nurse always fusses that she doesn't like to inflict a hand sample on me but totally normal to me.

I've defeated Drs in my time trying to draw blood lol and I won't even go into what happened at the WBC scan when they tried to give me the cells back. :ywow:

Yes Cat thank you not long until my scan although currently I have no clue when I will get the results. I have gone from being glad to be having it to scared honestly, I know in my heart I have CD but while having it confirmed will be an enormous relief it's such a big thing.

Trying to keep distracted so either sleeping alot, trying to garden (I am making great progress) or anticipating all my deliveries that are due this week- lots of eBay wins and Saltines yey, the UK company who import american food haven't had them for 6 months!
 
Yeah HappyBallerina, its probably the contrast that is making you feel so bad. Hopefully it is over soon!

I have awesome veins....I'm almost proud of it lol. I'm skin and bone and my veins show up really easily. But I still have a scar from the UV from the hospital visit, since they were using it so much.

I'm feeling a little better today! Of course as soon as they left I went 5 times today. My body can be insane sometimes ~.~

Thanks for the tip Cat, I will let him know at my appointment in two weeks. I also took a picture of the awful ulcer I have on my tongue..it hurts so much to eat, so I checked, and I have this ulcer the size of a fingernail. :( I don't think thats normal for "canker sores". Yuck!
 
I just posted this to the "your story" thread:

Hello all. I hope it is okay that I am here without a confirmed diagnosis. I am 34 years old, own a private catering company (part-time), have a full time desk job, mentor, and an avid official in roller derby. I am an active woman that has had a hard time keeping up with everything the last few months.

A little about me: I've had GI issues since 2 years of age. I was told it was IBS in the early '90s. Since then, I have had several major surgeries, 2 with abdominal incisions. I have been diagnosed with asthma (although I never truly have attacks). I have also been diagnosed with low b-12 despite eating plenty of it daily. I was a vegetarian, but I now eat meat. I suffer from allergies, arthritis, bad feet (tendons), migraines, gluten intolerance, painful cramping in abdomen, and daily diarrhea. I am currently self-administering b-12 injections, yet I am still exhausted. My current symptoms have persisted for several months. I'm amazed I am not paper thin with as much time as I spend in the john. (I hope that was not offensive to anyone here).

I saw a great GI doc Friday and he did blood work and ordered a colonoscopy which will take place on the 19th. I am worried. I am stressed. I am nauseated and have no appetite. This is a symptom and not from my stress. I have gained weight the last 6 months. I haven't been eating great, as a result of my feelings. I admit, I eat to comfort. I do not want to be diagnosed with Crohns, but a diagnosis would give me relief and a plan of attack. If he finds all is well, I assume I will be diagnosed with IBS. However, my research says that malabsorption is not common to IBS. Of course, it could be Celiac sprue too.

I guess I am looking for some guidance. Some yes or no that this sounds similar to your stories. My doc is out this week, and this waiting is no fun. I was also tested for Diabetes and rheumatoid in the last few weeks. It has been a trying time. I am at my wits end but I am also close to finding out what is wrong with me. It felt good to hear my doc say, "You're too young for all this." I am grateful I found him.

Thanks all!

Meg
 
Hi Meg. Sorry you had to find us this wAy. I don't think anyone here ever gets offended by potty humor! I hope your doc figures things out.


Update here: my vasculitis is back on my left leg. I left a message for my rheum but I see her wed anyway.
 
Star, I didn't know that Saltines were an "American" food and not something commonly found on UK store shelves too. I'm sick of Saltines, my grandmother sometimes gives me groceries and recently she got us something like 4 boxes of saltines. They're great in a flare, but the rest of the time I'll pass on them. To me they taste like they're stale even when they're not.

Allie, glad to hear you're doing somewhat better today. And you're right, I've never heard of a canker sore that big! I've had some large ones myself but always just assumed they were nasty canker sores - I'll have to pay more attention to the size the next time one appears.

Meg, welcome to the club and of course it's all right that you've joined the forum even though you're not diagnosed yet. The forum is for everybody with these kinds of issues, diagnosed or not, and also for friends & family members of sufferers. Good luck on your upcoming colonoscopy - just remember, the prep is the worst part. The scope itself is a breeze and you probably won't remember it nor feel a thing. As for your other questions, low B12 is pretty typical for Crohn's and you're right, malabsorption isn't included in IBS. If your doctor does try to say IBS after the colonoscopy, I'd recommend getting a different doctor. Crohn's can manifest anywhere from mouth to anus, so if your colon comes back clear you could still have illness anywhere in your small intestine, stomach, esophagus, even mouth (like what Allie posted about the giant sore in her mouth). I really hope you get some answers and relief soon. Keep us posted on how the scope goes!

The Mrs, I'm not quite sure what vasculitis is, but I hope your rheumy can get you on the mend quickly. Good luck on Wednesday!
 
Well I've been waiting over a month for my pill cam results. I got a confirmation call today for my follow-up on Wednesday. Unfortunately, I found out that I still have to pay $100 for the office visit. This is after paying them a $450 deposit just to have the pill cam done...and I still owe another $450 on top of that. This is insane. Why should I have to pay to get the results when I'm already paying for the procedure? Shouldn't that be included? I don't have $100 right now...period. I feel like I'm being held hostage. I was hoping to get some real answers from this, but it seems money is more important than the life of a human being. How am I supposed to get better, and get my life back on track if I can't get a proper diagnosis? On top of all that, it seems as if my health continues deteriorate on a daily basis. I'm so f'ing deflated right now. :yfrown:
 
Ifeelsick, that's ridiculous that you have to pay so much money. Can they send the results to you in the mail or do a phone consultation? My doctors usually do that, my GP is really good about sending me a letter saying what my results are in "doctor speak" and then he writes a little bit below that explaining it in terms that I can understand. And my GI has said, office visits cost money but a phone call is free!

I feel for you, I racked up a ton of medical debt last year. I applied for a financial assistance program and even though I didn't meet the criteria, I was accepted anyway, and as a result, I went from several thousand in medical debt to having a zero balance. Most hospitals have programs like this, you might want to check and see if there's any type of financial aid that you could get to help you with your pill cam bills. Good luck, I hope you're able to get the financial stuff taken care of and I hope the pill cam gives you some much-needed answers and relief.
 
Cat - Thanks for the kind words, as always. :) They refuse to do a phone consult because allegedly the results are "too technical to discuss over the phone". To me that's a load of B.S. Being that I've had a multitude of health issues over the years, I've made sure to educate myself quite well in human anatomy, physiology and general medical practices. I actually quite enjoy reading medical journals and text books. So I understand a lot more than they think. I tried to tell them that, but to no avail. They just want the money. I just wish they could at least tell me over the phone whether or not they found anything, so I would know if it was worth it in the first place. His bedside manner isn't all that great, either. He always interrupts me when I try to fully explain my lack of quality of life. That's definitely a red flag for me. I think I'm just going to have their office send my chart and all the diagnostic results to my dad's PCP(who specializes in internal medicine) since he knows me and my family, and might actually give a damn. He usually gives me a pretty decent discount on office visits since he knows I'm flat broke and uninsured. He hadn't been practicing here for the last year or so due to some family issues he had to tend to...but now he's back, so maybe he can offer me some answers(and relief). I think being treated by a doctor that knows you, and sees you as an actual person goes a long way for people in our position.

As far as charity goes, I'm already on a program at the hospital I see my GI at. Any procedure or diagnostic testing I have at the hospital is free. Unfortunately, even though my GI's office is in said hospital, they lease the space. Because of that, the charity program I'm on does not extend to anything done inside his office. Doesn't make any sense to me.

I'd like to try to work with them to get some of the other costs lessened, but I just don't have the energy or emotional capacity to deal with the bureaucratic mess that would ensue. The medical care where I'm at is just horrible in general; from administration down to the actual doctors. It's like they want to get as many patients in and out as possible; without any regard as to whether or not we're actually being helped. I'm just a dollar sign to them, not a person...they've made that perfectly clear. I'm hoping to move back home to California in a few months where not only is the quality of care much better, but it's a lot easier to get on programs where you don't have to pay anything to receive the necessary treatment.
 
They refuse to tell you the results over the phone? I got my pill cam results over the phone - of course, they were normal, so there wasn't really anything technical or complicated to discuss.

It sounds like your dad's doctor is the way to go. Is he located where you are now, or in California? Either way, I hope you're able to get some affordable & appropriate medical care from him!
 
It's ridiculous, I know. It's nearly impossible to get anyone at their office on the phone period; let alone get them to tell me any results(or lack thereof) over the phone. And forget about getting a call-back if you leave a message.

My dad's doctor is here, thankfully. And his office is closer to where I live than the hospital, so that saves on gas too. He should be willing to put me on some sort of treatment, so I can at least get back into the workforce and get some insurance. Then I can find a GI that is going to be willing to work with me over time in order to get a diagnosis. Then we can figure out the proper, long-term treatment plan for whatever is causing all this. There is a great doctor that I used to see back in Cali that is familiar with my issues. My condition wasn't as bad back when he was treating me, but at least he'd know for a fact that I've been suffering for a long time. I haven't seen him in almost 10 years, so for him to see how much worse I've gotten might give him the sense of urgency that has lacked in all the doctors I've seen subsequently.
 
oh wow...I am so sorry you are going through all of this ifeelsick! I hope you figure out a way to get those results..they might have found something! :(
 
Thank you TheMrs and Cat. I appreciate the welcome.

I have chosen to go on a bland diet this week to try and quell these symptoms. I am so exhausted! I have sores in my mouth that have creeped up over night. Just little bumps on my inner cheeks. I truly hope that I can get some diagnosis so that I can get a treatment plan under way.

I've had to partially back out of a commitment this weekend for fear that I would have an attack and not be in a position to accommodate it. I hate that. I am not that kind of person. I feel bad. I hate that something inside me is making these decisions for me.

Thanks again all.
 
Meg, good luck with the bland diet. It's good to start out really bland and then slowly start adding foods in one at a time to see what affects you and what doesn't. Keeping a food diary would help too so that you can track your diet and symptoms over time and see if you notice any patterns.

And I feel for you about having to back out of plans for fear of having an issue with symptoms - I've had to do that many times myself. I usually take a little emergency kit with me whenever I go out, especially if I go out of town. It's got moist wipes, TP, spare underpants and pants, extra meds, a towel, plastic bags, etc. It's like a security blanket. I put the kit in a little box and put it in the trunk of my car, it makes me feel better just knowing that it's there in case I need it. But even with that kit, sometimes I still can't make it out of the house. But that's okay too, I've come to accept that I can't do everything I want to do. I think that makes me appreciate the good days more and I try to do a lot on the good days!

Ifeelsick, it sounds like you've got good options for doctors in both places, hopefully one of them can get you some answers and relief. If you go back to California, make sure to get all of your medical records from your current doctors (possibly easier said than done if they don't answer their phone or call anyone back though!). My GP is great, I went to see him when I first became ill and then I didn't see him for over a year because my GI was treating me. But he kept getting all my records and test results from my GI, and when I finally went back to my GP, the first thing he said to me was, "Well, do you have Crohn's or Colitis? Because I've seen your records and it's gotta be one of the two!" I was so glad to hear him say that, and I don't know if he'd be in that same mindset if he hadn't been seeing my records from my GI. So long story short, get all your records so that whatever doctor you end up going to can be up-to-date on everything you've had done and what the results were.
 
I truly hate to be a pest. I called my doc to see if there was anything that could help my worsening symptoms between now and the colonoscopy on the 19th. He is out this week but left a note with a nurse. She said my b-12 is high. I have been giving myself injections 2 times a week for a week and a half now. I was not surprised it was high, but perplexed as to why I am so tired. My vitamin d is low. He left in his message to take oscal with d twice a day. I told her I am just exhausted and tired of the diarrhea and wondered if there was anything that could be done now to stop it. She said, "we're doing a work-up to see what is going on so we can treat." I imagine if I had remembered to ask the doc this last Friday I would have received a different answer.

I told her I am trying a bland diet. She was going to ask the doc if he would recommend OTC diarrhea aids. Last night after eating a roll and white rice, I had horrible searing spasms in my gut. It was about 2 hours later. It felt like a bug with hot pokers was crawling inside me. Luckily it didn't last too long. I am growing scared of what I am feeling in my body. And I am mad at myself for not going to a GI doc sooner. I have let this go on too long. I would say this "flare", if that's what it is, has been going on for 3-5 months.

The signs are definitely pointing to Crohn's. It would explain so much of my past. Decades of symptoms.

I don't want to consume too much water since I am in a "flare." Online research suggests too much water can worsen the symptoms. I am drinking Gatorade. Any other suggestions?

Thank you again. I apologize if I am being needy. I am still worried, stressed, tired, sick and anxious. Not good if I have Crohn's.
 
Meg, no need to apologize for anything! We understand what you're going through and it's okay to be emotional about it - when I'm in a flare, I cry about every 5 minutes. It's truly awful to be going through something like this and you shouldn't worry about being a "pest" or "needy" - you're not, you're ill! If your doctor thinks you're being a pest, it's time to get a new doctor. My doctors are glad to answer my questions, I probably end up calling one or the other an average of once per week - and I've been ill for a year and a half! It's not pesty, it's just what you do when you're ill. You take charge and try to get your health under control, and do whatever it takes to get there.

As for the water thing, I haven't heard that. I was told by both my doctors to keep drinking so that I don't get dehydrated when I'm flaring. I drink water, herbal tea, gatorade, pedialyte (I believe gatorade & pedialyte both have fairly high sugar content, so I usually water those down). Some days I don't eat but I drink what feels like gallons. Especially if you're having diarrhea and/or vomiting, you need to drink more than usual to maintain fluids & electrolytes.

If even bread & rice are hurting you, have you tried those drinks like Ensure or Boost? Those have a lot of calories & nutrients and can help if you're not able to stomach solid foods.

Keep your chin up, not long to go now until your colonoscopy and hopefully some answers and relief. We're all here for you and can completely empathize with what you're going through. We're all in this together! Please, again, don't worry about feeling pesty or needy - you need support and we're here for you! :)
 
Thank you Cat. I truly appreciate your kind words. So far, bland diet seems to be working. However, I had brown and wild rice. I think I am going to regret that. I didn't check to see if this would be okay. Research today shows that's not good for a bland diet. : )
 
Ooohh, yeah, brown rice is higher in fiber than regular white rice. Fiber can hurt because it's hard to digest. For a really bland diet, think in terms of white foods - potatoes without skins, white bread, plain pasta, white rice, baked chicken/fish, soft white cheese (if you can handle dairy), crackers, bananas, applesauce, egg whites or scrambled eggs, etc.

One of my go-to foods in a flare is cooked & cooled pasta mixed with a can of tuna and some mayonnaise. Tuna sandwiches are good too. I also do a lot of plain pasta with butter, that's always easy on my tummy. I'm lactose intolerant but for some reason I can still tolerate butter & ice cream. Bananas are great too, they're one of the only fruits I can still eat (blueberries being the other, but with the seeds & skins I wouldn't dare try them in a flare, too risky). Anyway, I hope that helps you a little bit. Good luck with the bland diet and the colonoscopy too! Let us know how it goes!
 
Hey all here is an update. I just went to my Primary care doc, I have to have sugery on an internal hemroid that has popped out and is the size of a golf ball, it sounds weird but this is a good thing because they are going to want a colonoscopy to see why I had one so big. So im crossing my fingers that this is what gives me a diagnosis. I also have to see a pulmonologist due to my Reflux causing scar tissue in my lungs. everyone please cross your fingers and say a little prayer. :) Thank you everyone for your on going support, you are all true friends.
 
Hey Beer guy, thanks for stopping in and updating us. Can I ask about the reflux in your lungs? I never had reflux until about Dec '10, and it's gotten fairly bad lately. For the past few days, I've had this pain in my left chest behind my ribs, it feels like the pain is in my lung. What does reflux in the lung feel like? Is it just pain? This pain is better when I sit still and gets worse if I lay on my left side or if I stretch or move or anything like that. Eating doesn't seem to affect it so I don't think it's my stomach or guts. It feels like my ribs or my lung.

Good luck with your surgery and colonoscopy, keep us updated on how that goes. A hemorrhoid that size sounds awful! The external hemmie I had was maybe the size of a grape at its largest. Anyway, good luck and keep us posted!
 
Cat, well when people like us have Reflux when we sleep the acid come's up the esophagus. As we breath we aspirate ( inhale ) the acid. Gastric acid has a higher PH than a battery. There will be burning and some pain. You will really know how the reflux is effecting your lungs if you hack up alot of sputum in the morning. A good way to slow the process of aspirating if to build a wedge to put under your mattress, sleeping at an incline to make it harder for the acid to come up. I hope this helps :) ohhhhhhh im not sure what your on for Reflux but I have found that over the counter Zantac 150 or just generic ranitidine ( try not to get famomadine ) works better than a perscribed one for me I take 2 150mg pills when im burning.
 
Beerguy, I'm currently on 40 mg Omeprazole (Prilosec) and I'm supposed to taper down to 20 mg in a couple of weeks. I also take 300 mg of Ranitidine "as needed". For awhile I was just on the Ranitidine and that's when my reflux got way worse and I also got gastritis, so I was put on the 40 mg of Omeprazole to get things under control and then the 20 mg is going to be my maintenance dose for awhile.

That's weird that the OTC Zantac works better for you than the prescription version. I wonder why that is? My Omeprazole and Ranitidine are both prescription, I don't think you can get the doses I'm on OTC plus it's much cheaper for me to get them on prescription (I pay $10 per month for generics and I know the OTC versions cost more than that for a month's supply).

As for the sleeping thing, I've tried sleeping at an angle but I just can't fall asleep easily like that. I don't really hack up sputum but I still wonder if just a little acid got into my lungs which is causing the pain. This is day 3 or 4 of the pain and it's finally starting to get better. Just wish I knew for sure what was causing it!
 
I've been trying to distract myself from Thursday by coming up with the perfect retort for my GI when I am diagnosed with CD, it's rather amusing :voodoo:

I am also going to say I want to start on the infusions within a week, I don't care about the formalities, make it happen! He mentioned once the treatment would be Remacide if it was CD.
 
It could be that you got some acid in there. If the pain level isnt down by tommrow I would go in and get that checked out. They will probably start with a chest x-ray and go onto a upper thorax CT. Yea the highest dosage I can get OTC is 150mg but I pick up a month supply for a few dollars more at costco. Ive tried Omeprazole both OTC and prescription and they never really helped. Still cant figure out why the OTC stuff works better for me lol must be my chemical make up.
 
Prilosec twice a day stopped working for me eventually so I currently take 40 mg of nexium twice a day and rx zegerid when it gets especially bad. I've woken up spewing and choking on acid, then i cough for an hour. It STINKS.

Cat-vasculitis is an inflammation of the blood vessels. I get it on my legs, and there's been speculation that vasculitis in my GI tract is what causes my GI symptoms, but that goes back and forth.

I saw my pulmonologist today, and he gave me spiriva to try for the cough. It's really weird, you put a capsule inside a flat egg looking thing that pokes holes in it, and then inhale the contents of the capsule. Hopefully it'll help. I'm still running the low grade fever.

I see the rheum tomorrow but I saw her in the hall today and she said the prometheus test showed that the imuran isn't at therapeutic levels, I'm metabolizing it too fast, so they're going to increase it. I didn't have time to ask her details, but I wonder if it's cause I pass everything out so quickly.
 
Sometimes I get heartburn. It normally follows when I've eaten certain foods, foods which are healthy to ordinary people like Ginger, tomatoes, Vinegar, onions, garlic, Yogurt, anything fermented or anything remotely "heating" causes massive heartburn, even brown rice, rye and sometimes carrots can cause me a problem it just depends how "heated" I am in the first place.

It might not be the same triggers for you, but just thought I'd mention it, in case limiting these foods could help you. Its odd as well, I find that "Ghee" actually really helps to calm the acid. I also find that cooling foods like Ice cream (in small doses), cucumber and water melons are fantastic to cooling and calming my heart burn.

xxx
 
Finally got my next Gastro appointment through for the 25th May, hoping my CT scan results will be on GI's desk by then (although Rheumy has been copying info to GI I will have to email to make sure those are copied).

So gone from being nervous about the test and not knowing when I will get the results to likely having a day and time in advance, eeeeek!

Really want them from Rheumy but suppose i'll have to get them from GI :-/
Oh well, maybe I will be called in sooner or report faxed to GP like I asked and get them before GI.
 
Last edited:
Is this a symptom

:sign0085:

My butt has itched for about a year now. Is that a symptom of Crohn's? I have wondered if I had a parasite at times.

Also, is it common to sometimes have constipation or is it mainly always diarrhea?

P.S. I feel like I should say TMI warning at the start of this. : )

Meg
 
I think if that's your only symptom then chances are it's not crohn's. With crohn's its mainly always diarrhea. But then again if you have crohn's and IBS then I suppose it is possible you could be constipated when crohn's is in a flare, or if you've got an obstruction.

Maybe someone with more experience could give a better answer.
 
happyballerina said:
I think if that's your only symptom then chances are it's not crohn's. With crohn's its mainly always diarrhea. But then again if you have crohn's and IBS then I suppose it is possible you could be constipated when crohn's is in a flare, or if you've got an obstruction.

Maybe someone with more experience could give a better answer.
Click to expand...

There are actually a lot of people on here with IBD who don't have diarrhea. I believe it depends on the location of the disease in your GI tract.
 
Oh I have plenty of other symptoms. Daily diarrhea, with the exception of yesterday, for a couple months, off and on for a couple decades. This last bout was the worst ever though. Low b-12 and D (I did shots and my b 12 is now up), abdominal cramping, tender to the touch, arthritis (diagnosed at 25), migraines, muscle weakness, tingling and burning in extremities, GERD (in that I often feel like a get a little vomit in my throat),...

I did really limit food yesterday and I did have a salad at lunch so it was a good bit of roughage. And I really limited stimulants, like diet pop too.

Thanks HB
 
People with crohn's in their small intestine have more constipation than D...so it always depends! Everyone can be different with their symptoms sometimes. I know certain medications can make me constipated. :(
 

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