Afraid, fed up, in need of tests with long wait list, and feeling alone

[gatheringroses]

Hi everyone!
I am new to the form, and I am looking forward to getting to know you all. I am a 23 year old female from Vancouver, Canada. I am an aspiring medical student (or, possibly educational policy person), and in the second term of my master's degree in Psychology. I have a lovely life by the sea with the most lovely girlfriend ever, and all sorts of exciting things that I want to do with my life. This is all great, but I am curled up in a ball crying most nights in pain (sometimes pooping, sometimes puking, and sometimes wishing I could have a satisfying poop or puke to get me out of the cry-ball). Thus, instead of going out with friends, studying for the MCAT, going to school (one prof has offered to let me skype into class), partying on the weekend, and hiking up the many mountains within kilometres of my house, I am watching all of the documentaries ever made, engaging in extensive dialogues with my cats, and watching law and order re-runs (which is only awesome, as I am sure many of you know, for the first 300 episodes). So, this sucks.

Here's my story:
Pre-Celiac
I've basically been sick with one thing or another for my whole life. I've been tested for mono around 14 times, but constantly remained mono-free (except for the end of my first week of university - that time, I had mono, and got to go back home for a month). I was incorrectly diagnosed with a number of psychiatric disorders when I couldn't get out of bed most days, and when I was running around my apartment in an anxious rage after dinner. My speech began to get slurred, and my eyes started to twitch randomly. My skin broke out in a rash. I felt like I always had the flu. The doctors shrugged, and upped my prescriptions, and told me to go to therapy. The therapist asked me if I was jealous of my sister (as a source of my issues), and I was really just upset that I couldn't get out of bed. However, one day, I encountered a girl with celiac, who told me something, in one sentence, that changed my life.
"Hun, please don't take this the wrong way, but it looks like you have celiac, and you're eating gluten. Go gluten free for 3 days, and see how you feel."

HEALED. Or, so I thought. I've never had a test confirming celiac, but I know I get bedridden if I eat gluten. That was 2 years ago.

Current issue
Around November, I took a little adventure to Ecuador. I got a tummy ache there, and stopped being able to eat food. Being prone to every possible illness, I took a prescription of anti-parasitic medicine,and I took it as soon as I noticed symptoms, and I felt a little better. I was 145 lbs (and, 5'3) when I left for Ecuador. I came back at 137. "SCORRE!" Or, so I thought.

I came home from Ecuador in mid-December, and had a fever. However, every time I travel, I get a bug from the plane ride back, so I just thought i was sick.
I still felt sick after a few weeks, so I went to the doctor around Christmas. She referred me to a GI (as I wanted to get a skin biopsy for celiac, and to make sure my symptoms were normal). She tested me for parasites (notably, those one who is prone to catching everything can get from hanging out in South America) and to go home.

I went home, and felt a little off for the next few weeks. Nothing notable, but on the afternoon of New Years Eve, without drinking anything, I randomly threw up. I am not a thrower-up-er unless I am seriously overserved, or unless I am about to get some nasty virus. So, I felt sick for about six hours, but around midnight, I was fine...cracked open a few (gluten-free) beers, and joined the party.So, that was weird.

I was fine for the next two weeks, but around the end of January, I started getting crippling abdominal pain. And, I started puking all the time. Here's a list of my symptoms:
- Pain in a circle around my tummy. It feels like I have swallowed razor blades
- Fever every night (at least 1 degree C and F higher than my morning temp.
- Worse insomina than normal: I am a 3 am person, but this is turning into 6 or 7 am most days (sometimes due to pain)
- Getting sick with most vegetables (the only things that don't seem to make me sick are dairy products and carb-related foods)
- Sudden, crippling abdominal pain (relieved when leaning forward...somewhat... or somewhat relieved with pressure and heat)
- Occasional puking (notably at night)
- Feeling like, after pooping, that I would love to poop again (despite sitting on the toilet for an hour with no results)
- Slight relief from pooping (large relief if the poop happens to be diarrhea) . Huge relief from puking
- Sore teeth
- Rash on face that appears for a few hours after eating something "bad"
- Unpredictable good/bad days
- Worse at night
- Weak
- Tired

It's also not gluten. My house is 100% gluten-free, and I don't eat out.

Here's what seems to trigger the symptoms (I am a vegetarian, by the way)
- Any raw vegetables
- Most cooked veggies (which sucks. I love veggies)
- Raw tomatoes = evil
- Sometimes, water
- Tofu, but not soy
-Spice
- Likely mild relationship between stress and symptoms, but TBD.
- ??? To be discovered

Here's what seems to not trigger the symptoms
- Mochas with soy milk
- Gluten Free Beer
- Dairy
- Gluten-Free pizza
- Olives
- carb-type things
- I can TOLERATE Avocado sushi (with GF soy sauce) in small doses.
- Ensure
....... Which is, to me, really, really, really weird. WHY does an onion make me ill for an evening, but why can I drink beer and eat pizza and not get sick at all?!?!?! While this is an enjoyable diet (I have to eat in small doses), one cannot live off of my "food that doesn't make me sick" list alone; the food that doesn't make me sick list is filled up with food that WILL make me sick if that is all I eat. Ever.


Doctor Issues
One doctor told me that because my white blood cell count was normal, I couldn't be sick. She told me I was inventing a fever, and asked me if I was having mood swings. I found a new (good) doctor.
However, Doctor #1 sent me to a GI in December, but her office messed up the paperwork... it's three months until I'll see the GI. It will be another 6 until I can get any tests done (thanks, public health care...).

All my bloodwork is normal (aside from a slightly elevated CRT level). I've been tested for parasites 3 times, and I've had nothing. I had an ultrasound done, and... nothing.

So, I have to wait 9 months, even with the good doctor, to get any tests done.

In 9 months, I'll waste away. I am quite happy being 120 lbs, but I don't want to be 105 while I wait for the gears of the Canadian medical system to turn (and, possibly, churn out an incompetent doctor).

Questions for you guys
Canadians: Any advice on how to see a specialist sooner? I was thinking of eating every single food on the "this will make me sick" list, and going to the ER. Does going to the ER result in tests, or will they just tell me that I need to follow-up with my family doctor? (who will, in turn, not be able to do much but tell me to wait for the GI doctor)

Americans on the West Coast: What is the cheapest GI doctor I could see? I am broke, but I am going to have to quit school next term until I recover if I don't get help soon. I might come to your land of private health care, and get some health care (seeing as how it seems unavailable in the True North Strong and Free).

Everyone: Any advice you have for me? How can I get help? What do you recommend doing?
To me, this sounds like IBD, and I refuse to accept a diagnosis of IBS unless everything else is ruled out. However, I can't seem to access the tests I need.


Do I just poop out all of my body mass, curl up in pain, drink all of the ensure possible, discover another TV show to watch, and quit graduate school for NINE months?

Help?

 

[Cat-a-Tonic]

Hi GatheringRoses, welcome to the forum. My goodness, 9 months to wait for tests! I often complain about our medical system here in the US, where we can get tests relatively quickly but have to pay through the nose for them (even with insurance). I'm not on the west coast so I don't know of any doctors in that area. In my experience, honestly it helps if you cry on the phone. That is what worked for me. When I had my colonoscopy a few years ago, the soonest opening they had was like 4 months away. So I waited about a month but I was miserable. I called the nurse and just burst into tears, I told her I was so sick and just couldn't wait so long. She took pity on me and got me in the following week. My tears were legitimate, it wasn't like I was fake-crying, it was real and it worked. They hold a few openings for emergencies and they got me into one of those slots. I'm not sure how it works in Canada but I would imagine they'd hold some slots open for emergencies there too - you can also check to see if they've had any cancellations so you can get in sooner.

One thing about your post that jumped out at me was that you mentioned a rash on your face. Rashes aren't uncommon with Crohn's, but facial rashes are most common with Lupus. Do a google image search for "butterfly malar rash" and see if that looks anything like your rash. Lupus can sometimes produce Crohn's-like symptoms including fever, digestive issues, etc. The good news is that there's a blood test which should give you a good idea of whether you've got Lupus - ask your doctor (your GP can check for this) about testing your ANA. It's not a totally accurate test (no blood work ever really is, it seems!) but it should be helpful anyway.

As for eating all your trigger foods and then going to the ER - it might be helpful but probably not. The ER can run some tests - my local ER has a CT scanner - but it's a toss up as to whether or not they'll actually run tests, given the anecdotal evidence I've read here on the forum. They may realize you are legitimately ill and admit you to the hospital and run lots of tests. If you show up to the ER in pain, they may just give you pain meds and send you home. Or they may treat you as someone who's just there trying to score pain meds and send you home. Worst case scenario would be, if you eat all your trigger foods and cause yourself an obstruction, you may require emergency surgery. That might get you a diagnosis, but it's probably the worst way to get a diagnosis. If you need the ER, of course go, but don't purposely put yourself in a position where you need to go to the ER. I'd recommend seeing your GP while you're waiting on the specialist & tests, and have your GP run as many tests as they can from their end. Stool samples, blood work, etc.

And one more thing - when you see the doctor, be it your GP or the specialist, do not let them tell you it's just IBS. You do not lose weight with IBS and IBS does not cause fevers. Good luck with everything and keep us posted!

 

[Ihurt]

I am so sorry you are dealing with this. One thing I wondered, were you ever tested for lyme disease? Some of your symtpoms fit. I mean the rash on the face( this can also happen with lupus as well) and the twitching. You said you hiked up the mountains, were you ever to your knowledge bit by a tic? Unfortunately with you being sick fo already so long, it will be very hard to get a positive lyme test. You would have to go with a special lab like Igenex. When a person contracts lyme disease they have to be tested for it fairly soon after the exposure. After 5 months the body stops making antibodies to it and it is way harder to detect. What makes it worse is that if you live in an area where lyme disease is not high( I live in Chicago IL)you wont have much luck finding a lyme literate doctor. There western lab test for lyme disease is Very unreliable and there is a HIGH rate of false negatives. That is why Igenex is a bit better of a lab from what most lyme specialists have said.

That being said, I guess the best thing would be for you to have a few tests done. It sucks that you have to wait so long. Ughh, here in the States you dont have to wait too long at all( 3 weeks at the most to get a test done usually), but the prices are OUTRAGEOUS here for health care. I had to have an MRI/MRE. They charged over $6000 for it. Here a colonoscopy will cost about the same. They LOVE pushing people in for tests here, I mean look at all the money they are getting from charging each patient these amounts..Hospitals are rich and greedy here...

It is good you have an appt set up with the GI doctor. Like Cat-a-tonic said, I would maybe call and plead with them to get you in sooner. Tell them you are in agony and you cannot wait that long. Or, you could go to the emergency department ( It is free over there right??). I mean if there is no cost to you, going to the ER may get you in quicker and tested quicker. It is just an idea. I mean I would love to that here, but just walking in the ER you are charged over $2000.

Hope you can get some help and answers soon!

 

[dannysmom]

Hi and welcome. I know some people in US and UK that have gone to the ER and gotten appropriate testing done. If you are curled up in pain crying, and cannot see a specialist for months, I think an ER trip is justified.
It is normal for temperature to fluctuate 1 degree F higher at night than in morning. Does your temp change more than that?
I hope you get to a GI soon so you can have scopes and imaging done.

 

[caytee]

I am really sorry to hear about your struggle. I hope that you are able to get in to see your specialist sooner than later. Being curled up in a ball in pain isn't much fun and am sure that many people here can relate. I agree with some of the earlier posts to take a look in to Lupus. I hope that you find some relief.

But I have to say I do the same thing as you in that I watch as many documentaries as possible, talk to my cat, and watch SVU re-runs.

Best of luck

 

[Laura44]

Sorry to hear about your struggles! It is good you have a trigger food list - I found that using a food journal really helps. It felt so scary to think that I might not eat some of my faves ever again but once I started getting things under control with LDN and my safe foods then I was able to add back a few of the things I really missed. It becomes worth it it avoid those in the bad list to feel better. Hang in there - you sound like you have a lot of really great things going for you!!

Wondering if you have considered LDN? I started on it 19 weeks ago --- along with an elimination diet, anti inflam sups, probiotics, high doses of bit d and b12 shots I finally see the light again. Just a thought - you might read up on it and see if it is an option for you.

Take care!

 

[AlliRuns]

Can you go back to your GP and ask them to maybe put a rush on the GI referral? It only took about a week for me to get an appointment at the GI clinic here. Getting into a surgeon is a different story though.

 

[gatheringroses]

Thanks SO much, everyone!!! I really appreciate all of your help. It has made me feel less alone.

I also appreciate the validation that I shouldn't let this get written off as IBS or "stress." Everyone is telling me that I am simply stressed, but I know that is not the case. I've had WAY more stressful times in my life, and I've never vomited, gotten a fever, or curled up in a pain ball!!!
I am surviving off of pizza, gluten-free beer, soy mochas and ensure drinks right now (which are, very strangely, the only things that do not seem to make me feel sick....which is SUPER weird since, pre-strange problem, all of these things would cause an upset tummy). You'd think "Oh, I've got to drink beer and eat pizza to avoid wasting away since all other things seem to make me vomit/curl up/poo" would be a lot more fun than it actually is. :/ I simply cannot keep living like this; although eating pizza, drinking beer and drinking soy mochas was fun for a bit, that's going to cause other problems.

Lyme disease... Hmm, I wonder if I can get tested for that. I am going to look into the lab that was suggested. I used to be in conservation/environmental education, so I spent a lot of time working outside in Ontario. I also generally really like being outside, and I've travelled enough/hiked in enough places where I could have gotten a bite. While I do not remember getting bitten by a tic, it is quite possible. I've recently hiked (within the past 3 years) in BC, Ecuador, the jungle in Ecuador, Ontario, France, Cuba, The Dominican Republic (well, more like "sat on a beach"), and rural India. I am sure they hang out in some of those places.

As for lupus, all my RBC/WBC counts are normal, my ANA test was normal, my liver/kidney/pancreas functions were also all normal. I will ask my doctor about it next time I see her. The rash doesn't really look like the butterfly rash, but I am not sure.

So far, the only slightly abnormal results were a C-reactive protein test (1.1), and apparently there is a small ball of fat growing on the tail of my pancreas (which might be an imaging problem, but I had two doctors tell me not to worry about it). :/ I do have some hormones that are out of whack (DHEA and .. one other one), but those have been out of whack since I stopped being a kid...and, it's likely just PCOS. I did a barium swallow, and it came back normal. It's terrible, but when my doctor told me that the barium swallow was normal, she presented it as GOOD news. I didn't find this to be good news. I wanted SOMETHING abnormal to show up. Honestly, I've gotten to the point where I really just want to know what is going on, and while I really do not want a chronic lifetime illness, or cancer, or anything, if I have it, I want to work on managing it or treating it!!!

As for the GI.... I called the clinic almost crying, and told them that I was slowly wasting away, and that I couldn't wait the 9 months for the appointment. My previous doctor only sent the referral in February...when I had asked for it in December, ARGH!!!! However, I am at the top of the cancelation list now, and I am going to call them all the time once the doctor returns (she's away until April). In the mean time, my GP sent a referral to another GI. My mom is also looking into paying to get me to see a GI (they can see me in 2-4 weeks), but the GI is just going to tell me I need a colonoscopy (or, so I suspect and hope...), and then we're going to get a $3,000 bill....when it could be $0 if I play my cards right with the receptionist. Man, I never thought that the only thing in life I could possibly want (aside from a new Law and Order season) would be for someone to stick a camera up my bum.


At any rate, my current doctor is doing all the tests possible (we're ultrasounding a somewhat weird lymph node on my neck that she wouldn't normally be worried about, she booked a rushed abdominal CT scan, and is sending me for more blood tests). The only test she can't book for me is a lower GI examination. I went into her office freaking out after I ate a VERY small salad, and on the 10 min. walk home from the food joint I was at, I ended up puking on the street three times. She wants to rule out cancer, but she told me that she thinks it is IBS.

I mean, I'd love to have IBS instead of IBD, but I don't want to be written off as having IBS because my symptoms have a very mild relationship to stress!!! Thanks again for reassuring me that I shouldn't accept that as a diagnosis with my symptoms; it's the impression I am getting from Dr. Google, but Dr. Google always ends up also telling me that every headache is brain cancer. So, I appreciate the real-person support.

Argh, I want to go to medical school, and to be able to help people like us who present non-traditional/confusing symptoms...and, think of creative ways to help them. However, as long as the only activities I can engage in are puking, crying after puking, pooping, curling up in pain balls, watching SVU re-runs (my personal favourite Law and Order option), and engaging in monologues with my cats, I can't even think about how I am going to get it together to write the MCAT....not to mention, go to medical school!


Anyways, I am rambling. Thanks so much for the support, everyone!!! <3

 

[gatheringroses]

Hi everyone,
I actually have good news!!! The GI had a cancelation, and I am seeing her on Friday! She's one of the best-rated GIs in Vancouver, so I am really hopeful she won't shrug, and go "IBS."

Since then, I've also had some new symptoms; the most worrying one was waking up in the night in pain. I think this means it is not IBS for sure.

Also, the doctor prescribed me an anti-anxiety pill for when I throw up (every time I throw up, I get REALLY upset. I am used to pooping since I've got celiac, but I am not used to puking).

Finally, I got tested for Lyme...results pending (likely to not be positive even IF I have the disease). Aside from that, nothing but new normal test results, and a lot of stress about how I can finish my term at school since it feels like I've swallowed razor blades, of varying degrees of sharpness, every day... :/

 

[Cat-a-Tonic]

Good luck with the GI appointment! Make sure to tell the GI about ALL of your symptoms, even if some things don't seem related to your digestive issues. If you do have something like Crohn's, it can cause extra-intestinal manifestations (joint, eye, skin issues, etc). I find that it's helpful to write things down ahead of an appointment so that I don't forget anything. I usually bring 3 lists with me - a list of all my symptoms, a list of all the medications & supplements I'm taking, and a list of all my questions for the doctor. That way, I can address everything I want to, and my doctor has all the pertinent info.

Best of luck on Friday and please keep us posted!

 

[gatheringroses]

So, the GI doctor (despite having really good reviews) was pretty rushed, and I don't think the history she took was really comprehensive.

She thinks it could be refractory celiac (whatever that is?), or an infectious disease from Ecuador. I have an upper GI scope next week, but I'd really like my lower GI to be checked out too (...since that's where my pain is...). I did a blood test to rule out HIV (although I really don't see any situation in which I could have contracted HIV in the past 2 years since my last test), so I am hoping that she'll be willing to do some lower GI checks to rule out Crohn's before I go on an infectious disease hunt.


She said if it was Crohn's, my symptoms are atypical (due to the vomiting)...anyways, it's looking like I am getting a mandatory summer vacation from school...

 

[Catherine]

Niks is also looking for answers for her daughter who also has a celiac dx.

 

[Niks]

Hi!

One of my daughter's possible diagnosis was refractory Coeliacs, but it seems that she may not even have Coeliacs now!

Pretty much all of her tests come back normal, but she has severe vomiting, has weight loss, chronic pain! She has also been told it is all in her head!

Keep pushing and fighting! I hope you get answers soon :ghug:

 

[UnXmas]

Hi, I haven't read all the replies to this thread, so I hope I'm not repeating things.

Do I just poop out all of my body mass, curl up in pain, drink all of the ensure possible, discover another TV show to watch, and quit graduate school for NINE months?

That sounds pretty much what I did, and for longer than nine months. Except I didn't quit university. If you can, try to keep up with your studies. There's no guarantee that even when you get the tests done or get to see a specialist, that you'll find successful treatment right away. It's better not to put things off until you're better, and try to adjust to managing your life and doing all the things you want to do whilst living with a chronic illness, if possible.

I'm in the UK so our healthcare is free, but waiting lists are usually very long too - several months for non-emergencies. I wouldn't go to the ER unless you have a sudden attack of more acute symptoms. ERs deal with emergencies, not chronic problems, so it's unlikely they'd issue tests to try to find an answer to your problems if you're not immediately at risk of some serious threat to your health. And doctors don't seem to include quality of life in their definition of urgent problems - they go by test results.

If you're having problems getting doctors to take you seriously, personally I find it easier to let them make decisions rather than trying to tell them what you think is wrong or what tests you need. Some doctors seem to dislike it when patients bring up their own ideas, no matter how accurate those ideas might be. If a doctor is being unhelpful, don't spend to much time trying to pursuade them to do more. It's easier to see another doctor instead, and keep seeking other doctors' opinions until you find one who can help you.

 

[dahlfacepoet]

Don't accept an IBS diagnosis. Something is wrong, a body doesn't just stop digesting food. We have similar diets, except I have have gluten. I hope you find relief soon. I have been living off of fried rice and ensure for about two years now.

 

[gatheringroses]

Hi Everyone! Thanks for your support. I've been feeling like I am in a bit less pain...I ate a full dinner tonight, including a small salad!!! I have yet to vomit, but I still feel like there is a razor blade in marshmallow stuck inside of the right and/or left side of my gut...

I don't think I can go back to school without a diagnosis; see, the school lets you get accommodations if you have a chronic illness (they can't discriminate), or a diagnosis. However, if you have something short-term, symptoms are not reasons for accommodations... they make you withdraw until you are "better," because being in Graduate school = you better be at seminars. I mean, I get that, and I respect that. I am also getting REALLY worn out from feeling terrible all the time. I am going to meet with my supervisor next week to talk about how taking the summer off will impact my progress.

On the bright side, I am really hoping to rule in/out Crohn's by the end of the summer. If I can get the GI to do a lower GI investigation (my partner is going to have to advocate for me after the upper GI - I don't, with my knowledge, think it's something that will be found in an upper GI), I am going to start looking at Weird Parasites from Ecuador... which, based on my current understanding, is still a very decent diagnosis (apparently, they miss a lot of bugs in the stool tests). I might also ask to get treated for Lyme (just in case) even if the test is negative (my partner FOR SURE was bitten by a tick in our back yard).

So, lots of antibiotics...and, hopefully the problem is not candidia.

Thanks for all of your help and support. I appreciate the confirmation that IBS = NOT an acceptable diagnosis. I was feeling that way when it was suggested to me, but it's good to have confirmation.

 

[dannysmom]

I hope you can try medications to help you feel better. My son tried a lot of different ones. Some made things worse - most seemed to have no effect. He is doing so much better now (3 very bad years and 1 not so bad one now). We do not know exactly what made him start improving, but after the prednisone and antibiotic treatments, he did a week of fluconazole (for possible Candida) and then 2 weeks of Alinia (possible parasites, etc.). The fact that there is a chance of weird parasites, made me think of Alinia for you. Good luck!

 

[gatheringroses]

Niks, I hope you get some answers for your daughter soon!! It sounds like we have similar symptoms. It's a shame that doctors are so quick to assume it's all in your head; I am really sensitive to this (unless, of course, all biological causes are legitimately ruled out) after 3 years in bed with a "mood disorder" that turned out to be Celiac. Argh! Is there a chance your daughter could have something related to celiac, like leaky gut? It sucks that it's so hard to confirm celiac when one is gluten free (my brilliant doctor suggested I go back on gluten for 3 months, and then do the celiac test to see if celiac was causing my problems....which was the worst medical advice I think I have received in my life..... why would I confuse the symptoms when whatever reaction I may or may not have been having to gluten was pretty terrible? Furthermore, that would ACTUALLY disable me at this point, arrrrrgh). Anyways, I digress. Have you considered seeing a naturopath? In confusing situations, I've found naturopaths to be a lot more holistic than doctors (although they tell you to stop eating everything that brings you any amount of joy, and suggest meditation...), and to sometimes be more creative. They've also got some really neat allergy tests that doctors don't use. In my province, they're taken pretty seriously; I think they have the rights to order some tests (including lyme disease tests that aren't used by doctors), and prescribe (but, that could be a lie). My only advice would be to do a pretty good check on the background of the doctor (some of them are quacks - notably, if they have been out of school for a long time). A recent graduate will also be more up to speed on stuff. Anyways, I hope your daughter feels better!!


I actually have a bit of news. I was able to self-refer to see a tropical medicine doctor!!! I have an appointment ONE WEEK after I emailed him, and I could have one on Thursday if I wasn't intending to try and go to school...which is awesome. Anybody who has ever tried to get health care in Canada was shocked by the fact I could self-refer, and that I got in to see him the NEXT time our schedules lined up! I guess he doesn't see many people who want to be investigated for tropical diseases in Vancouver. He even personally replied to my email (which has NEVER happened to me before in my whole entire life as a Canadian). However, he has apparently tried to prescribe a number of people atypical antipsychotics to "cure" problems. I am bringing my partner (a nice, quiet French girl who, despite being nice and quiet, is really good at telling people of politely - in a really scary way- when needed). She knows how sensitive I am to being told it is "in my head," and that I will likely lose it if anybody tries this (hence, making me look more like I am in need of a psychiatrist). Anyways, I hope that the my travel declaration ("I developed my first noticeable symptoms IN THE AMAZON JUNGLE...and within the last 3 years, I've gone hiking in rural India, Cuba and the Dominican Republic with no malaria medication") will make me at least poke my tummy.

The rush CT scan the doctor ordered actually WAS rushed (I got an appointment a MONTH after it was booked - that's unheard of), and I was triaged as urgent (once again - WOW canada!), so I've got that on Wednesday. It's a contrast scan. Has anybody had experience with this before? I am really worried that I am going to throw up the night I drink the dye, and make my toilet - rather than my bowel - radioactive. I'll need to find out if I'll need an IV for this. I have a needle phobia (which is NOT good since I want to be a doctor...that is, if I ever stop pooping and puking), but I've overcome that a bit. However, IVs creep me out SO much more than needles.

Finally, my lymph node exam came back negative for hodgkin's lymphoma, so that's good news (...although it's a pretty treatable cancer, I'd really rather not have cancer).

In other news, I can't concentrate at ALLL on school. I am hypersensitive to caffeine, and it's doing nothing. The Dexidrine for (suspected) ADHD (taken at the max dose I am allowed to take) is also doing NOTHING. :/ Normally, coffee + dexidrine = pleasantly productive experience that mimics a hypomanic episode. Now, coffee + dexidrine = able to walk around..... (just to give you an idea, before getting sick, if I drank coffee

I am so far behind that it's getting really out of hand. Plus, I am kind of a perfectionist. So, make me sick, give me a "whenever you feel healthy!" deadline, and I start to become paralyzed with inefficiency. It's also hard to focus when I am so stressed out about WHAT is making me sick.

I am meeting with my supervisor tomorrow to discuss options for taking time off of school, and to have a frank discussion about "hand it in whenever" extensions, feeling awful most of the time, and perfectionism. I might ask her if she thinks it is a good idea to give me a pass on worrying about school work and papers until I get a dx (which, with all of the tests coming up, will hopefully happen soon)... I can't keep drinking coffee like this (notably, when I can't eat FOOD), and taking "focus pills" like this; otherwise, I'll get other health problems.

I've also booked an appointment with a naturopath...I think there's a pretty good chance I'll be told to do yoga. (By the way, if you live in Vancouver, I recommend this highly entertaining game: every time a health care professional suggests yoga as a treatment for your symptoms, you lose.... you will never win). However, a little bit of holistic investigation can't hurt.

So, fingers crossed that we all get SOME news soon.

 

[Cat-a-Tonic]

Hi GatheringRoses, I had a CT with contrast about 3 years ago. I'm not sure if they do things the same things there as they do here for a CT, but I did have to have an IV. They inject the IV with contrast that makes you feel really warm and flushed for a minute, and it also gives you a very disconcerting feeling like you've wet your pants. You won't actually wet your pants, but things will feel oddly too warm down there for a bit and will give you the impression that you have. It's a little weird but not too bad, especially if you know ahead of time what the feeling will be like. It only lasts a short time too, like 30 to 60 seconds.

And this is just my experience, but drinking the oral contrast wasn't too bad either. They gave me an hour to drink 3 big glasses of lemonade mixed with contrast. It tasted like chemical-y lemonade, it wasn't terrible. I was really nauseous going in so I was really afraid that I would puke up the contrast, but I kept it down, so I think you'll be fine too. And if you can't drink all of it, that's okay - I managed about 2.25 glasses of the lemonade, I just couldn't finish the last glass, but they said that should still be fine and it was. One word of warning though, the oral contrast tends to go right through you. After the CT scan, either go right home or head right to a bathroom! I went right home and nearly didn't make it in time, I had to make a run for the toilet as soon as I got in the door and had liquid poops for the rest of the day. That was probably the worst part of the whole CT experience for me.

Also, for what it's worth, maybe give yoga a try! I exercise daily (mostly weights and cardio, but about once a week I'll do some yoga) and it's made a big difference for me in a good way. Yoga shouldn't be substituted for actual medicine of course, but it can still help.

 

[dahlfacepoet]

Gatheringroses, at least you're getting into the specialists quick, which I know is unheard of. One of my best friends lives in Toronto, she's been dealing with bladder and kidney issues for a quite a while, so I'm familiar with how frustrating it can be.

I got sick over the summer. I was supposed to be transferring to a new university in the fall semester, but it was easier to just stop school all together. It's been almost 2 years and I do get super jealous when everyone starts their classes or graduates when I should have. I just have to know this is the right choice. It wasn't really a choice though. I couldn't afford it without working too, and I cant' do that at all. Also, I wasn't able to qualify for food stamps if I was in school. I didn't want to jeopardize my GPA. I see a lot of people struggle through school while they are dealing with all this health stuff and it just seems impossible, but somehow they do it. I hope you and your supervisor can come to a solution that will give you the relief from stress you need.

I had a CT scan too, to see if my gall bladder was the problem. It wasn't. I didn't get the cool lemonade Cat got, mine was just a clear liquid that didn't taste like water. It wasn't too bad and I got through it. The good thing about the CT is that you have to be lying flat, so when they give you the IV, you won't be able to see it. Maybe that will help with your phobia some?

 

[StarGirrrrl]

There are quite a few different CT's with contrast, some oral some IV; so you'd need to speak to them to find out which you are going to have

 

[gatheringroses]

Thanks for your support, everyone!!! They actually have a WORKING DIAGNOSIS (!!!) for me. Gastroparesis caused by a bacterial or viral infection!!!
However, I don't see how this relates to my lower GI pain...
Anyways, I see the doctor again in two weeks to go over the results from the endoscopy.

Thanks for all of your support!

 

[UnXmas]

Thanks for your support, everyone!!! They actually have a WORKING DIAGNOSIS (!!!) for me. Gastroparesis caused by a bacterial or viral infection!!!
However, I don't see how this relates to my lower GI pain...
Anyways, I see the doctor again in two weeks to go over the results from the endoscopy.

Thanks for all of your support!

Hi again, I have gastroparesis - which I don't think is related to having Crohn's, my digestive system just seems to have endless problems.

You're right that it wouldn't cause lower GI symptoms, although it's possible it might be part of a more widespread motility disorder. I have also read that if you have gastroparesis you're more likely to have problems with bacterial overgrowth which can cause diarrhoea - I'm not sure if this is proven or if it's just a theory though.

Gastroparesis can cause nausea, vomitting and stomach pain, so it might well explain some of your symptoms. Do you get really full and bloated or have you lost weight?

How did they make the diagnosis? How did they know it was caused by an infection, or was that just their theory because of your symptoms and history? I'm just curious because I'm so unsure about the causes of my own and its relation to my other digestive problems. Did the doctors talk to you about having a gastric emptying study to assess it more accurately?

Glad to hear you've made some progress, and hope these new doctors you're seeing can come up with some effective treatment.

 

[gatheringroses]

Hi UnXmas,
Sorry to hear that you have gastroparesis + additional problems...
I don't get really full-feeling, but I do get bloated, and I've lost tons of weight. They made the diagnosis because, when doing the endoscopy, they found my dinner in my tummy still (which I had consumed more than 12 hours before). They think it's an infection because of my fever, I think ( I was a little high when all of this was being explained to me - the drugs, sadly, didn't knock me out OR make me indifferent to the procedure, but just made me really stoned..).
They haven't talked about an emptying study yet; I am waiting for some biopsy results to see about some small intestine disorders, and I am following up with her in two weeks. I think, right now, the slow stomach emptying is being looked at more as a symptom than as a cause...? Or, at least, it doesn't explain ALL of my symptoms (based on what I've learned/understood while high). So, I don't think it's the final diagnosis, but a good way to explain some of my symptoms.


It would be awesome if this was a bacterial infection. Some antibiotics + probiotics + GI stimulants = cure.

At any rate, I trust my doctor now (I did not understand why she was looking at my upper GI when the lower GI was where the pain was)... However, the meds are not helping yet, so I am looking forward to them possibly kicking in soon... I am feeling A LOT more relaxed to have SOME news (even though it's not comprehensive), and SOME promise of progress... thank goodness for the new GP. I think I am going to write a nasty letter to my old GP, and point out that it was not good practice to ask me if I was having mood swings....

I'll keep you posted, and let you know if I get a more clear explanation. Maybe, there's something that I learn that will be of help to you.

 

[Tamanna]

Hello Gatheringroses, I am a Canadian too. When I found blood in my daughter's stool, I went to Emergency. First time when we went emergency, the emergency stuffs sent us back home after all night waiting. I went again after a week, they sent us back by checking blood and saying nothing wrong with her. Third time we went again, they told us that my daughter's name is on 9 months' waiting list. I told them, "I am not going back home tonight with my daughter who is dying and you are not taking it seriously. If something happens, you will be responsible for that ." I did not move until they promised to call my daughter ASAP. They called my daughter next week for colonoscopy and biopsy. I think you should go to your nearest hospital at emergency section and insist for your treatment. I feel so sorry for you. I wish I could be there with you at emergency room. Remember to cry in pain and act like you are dying. Sorry to say that. They don't take a patient seriously who does not insist. It's your health, you must be demanding for your treatment. Take care. May God help you.

 

[Tamanna]

Sorry, I did not read your last post . Good to know that you have good doctor now

 

[gatheringroses]

That's good advice!! I will for sure do that if I feel like I am at a dead end again. I don't think I was ever presenting clear "uh-oh" symptoms that would have indicated I was possibly dying (like blood), but if I had, I would have gone in for sure.

Great idea! Glad to hear your daughter got helped quickly!!!