Can someone please help me?

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Keona

Keona

Joined
Mar 22, 2010
Messages
1,493
Okay so I am at the end of my rope here.

I did a search on here for yeast today. I have had this problem for awhile and it comes and goes. I thought it might have been a dental issue and it caused little pain so didn't get it checked out. Then, I started coughing up these evil little curd chunks. Again, didn't think it was anything major - thought it was undigested food - GERD related...again, didn't do anything about it as I told the GI I have regurgitated food.

Last week, I was constipated for 6 days..went (saw pieces of what looked like toilet paper in it)..then constipated for 6 days..went then constipated for 9 (saw blood in it)...all in succession. This is not normal for me as it is usually the complete opposite.

I called someone today as I found the post re: yeast then clicked there may be a connection. When the doctor asks you what symptoms do you have..how on earth are you supposed to know that coughing up cheese chunks or having a white tongue may be related?? or even a rash for that matter?? Keep in mind that I have not been diagnosed with anything but GERD (hernia and gastritis). This is all very, very new to me.

I went out last night for the first time in a very, very long time. I was asked by 2 people if I were anorexic...as I have lost a lot of weight. I was also watched as I ate at the dinner function I went to. It was mostly fruit and vegetables/wraps etc so there was little selection.

I called a friend today and told her about the thrush and curds. She told me to make a doctors appt. asap. I did....when I told them what the reason was, they asked how fast I could get there. I got there, as soon as they called my name the fire alarm went off... not once..but twice. This man came out. A doctor I have never seen before but in the same clinic at my university. My GP is on sabbatical and an intern is in her place... she told me my hip prob and stomach prob's were basically in my head and to take advil (while at the same time she is making a requisition for a GI for possible ulcers.) She has been really snobby to me so I told her I was no longer going to go back until my doc came. I checked it out and it is not double doctoring. She also wanted me to see a psychiatrist b/c the moment she asked about family history, I had to tell her I don't have any. When you do that - you are immediately slotted into the category of "neurotic or unstable" and of course it all has to be "in my head". I went to the shrink to get her to send a letter saying I am not psycho and it is post trauma stuff. The intern literally came out and called me 'paranoid." The shrink sent her a report refuting that and basically blasted her. I wanted the report done because all this paper trail follows you and I am tired of being slotted in to a category for something I am not...
The shrink wanted me to make an appointment with Dr. Foley at the same clinic - which I did and she was not convinced I have Crohn's - she thinks I have endometriosis. The MRI in June will be testing for both...then a PH test and a colonoscopy.
This doc I saw today "McCloud" was for the thrush only. I didnt want to go all week-end coughing up curds and peeling white sh*t off my tongue. Underneath is bright red - almost bleeding and it hurts to eat or drink. The insides of my mouth has sores in it and also white spots and my gums have a think layer almost like skin peeling off. I can't eat. He diagnosed it within seconds. Asked me how long it has been like this. While printing off the script he then reprimands me for having so many doctors. The shrink, Dr. Foley, my doc on sabbatical, the intern, the GI..now him. Everytime I see the shrink she ups my meds (wellbutrin major depression and 3 cymbalta for anxiety). He asked me how my depression was and in my head Im thinking "oh, here we go again" holding back from busting in to tears. He tells me that I need to go back to the intern and I told him about the advil. He told me Dr's learn from patients and to go back and not to be so "snarky" with her. I told him I wasn't going to go to a doctor that labels me paranoid. He got quiet and stared at me and then said "she said that?" - I couldn't speak - I was about to start balling..and I don't cry, especially in front of people. He said that he was concerned that something would go unnoticed if I see all these doctors... and if I am seeing all these doctors then I don't appear to be getting good medical care. NO SH*T!!
I asked him in frustration "then who am I supposed to call?" Am i supposed to go all week-end not being able to eat or drink anything other than water and hot water?
He asked me straight out "what do you think is wrong with you?" I said I didn't know - again, trying to stop myself from crying. He said I must have an idea... I told him I didn't know only because if I said anything I would have broke down. I don't know... that is why I am there...even they don't know but I find it confusing that they are telling me that they think that I potentially have a serious, chronic disease but yet they aren't helping me. It has been a year and a half of this! I couldn't even bring up the constipation or the blood or the tissue in my BM. I took the script and couldn't get out of there fast enough. What I have learned from here (thank God) is that there are tons of symptoms. I dont get how you're supposed to know what ones go where?? Is it GERD...is it Crohn's... is it endometriosis???? and why am I only getting medicine for depression???? Every complaint I have made has panned out to be something. Hernia, gastritis, thrush, rashes...etc. When I showed the GI the rash, he told me it looked like psoriasis ...did the endoscopy and never saw him since. That tells me I have to go to the GP to get something for it. I feel like I am being run around the block and if I do have a compromised immune system...why are they wearing me down even more?!?! He asked me today if my throat hurt... My throat always hurts...I have GERD/hiatal hernia...what is what??
My friend convinced me today to go to the doctors - I didn't want to go b/c I am afraid they think I am a hypochondriac or something. She told me to because an infection is nothing to fool around with. I don't want to talk to anymore doctors... My friends told me last night I look grey and anorexic. I was told not to buy over the counter laxatives as they are harsh on the system and could have a rebound effect. So...what do I do then??? explode? I bought something anyway.. I seriously can't do this anymore. I am falling apart and feel sooo worn out. I told the doctor that I am lucky if I can get dressed in the morning. All I want to do is sleep - I am so exhausted all the time. I don't know what to do anymore - this is not a life I have over a month to wait for the tests and likely another 10 days for the results... THEN will they take it seriously??? I'm invisible until then???

sorry for the longwinded rant... I don't know what to do anymore...or who to talk to.:confused2:
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Ford Escort (North America)
 
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I'm really sorry to hear all that you have gone through, Keona. I'm not sure how I would have been able to handle all of the repeated brush offs you've had to endure from all these various doctors. Unfortunately this is not the first story I've heard like this on this forum.

Have you considered going to another doctor? Perhaps they would take you more seriously? Or is there a trusted friend you could take with you to future appointments that would help voice some of the frustrations you have and stick up for you when doctors start to "put you in your place"? For some reason there are some docs it seems that enjoy toying with the emotions of patients. I don't get it. Why would he ask you what you thought it was? How rude. I really am all riled up for you!

If I were you I wouldn't go back to the same doc if they treated me like you have been. OR like I said take a trusted friend who's not afraid to speak their mind. I wish I could be more helpful. Stay strong and vent all you want. You have every right to!
 
Ugh, my heart goes out to you! I've heard some horror stories and this is definitely one. I'm so sorry you're suffering this way. I'd sure like to grab one of those doctors by the shoulders and just say LISTEN! I'm just gonna tell you what I would do, and you can add it to your list of suggestions I'm sure people are making.

I would go to a random, brand spankin new doctor. I would say I'm a new patient and here are my symptoms. ALL of them, on a list. I would tell them what tests I have scheduled and then I would say my current doctors aren't helping me and I'm sick and scared. No file, no notes saying you're "paranoid" just straight up, this is the deal, I need help. I'm worried about you as I'm sure a LOT of people are, and I think unfortunately you need to stand up and say LOOK, I NEED SOMEONE TO LISTEN TO ME! If you cry, you cry, but if you're in pain you're going to cry anyways so you might as well get some action out of it right? :)

You could also try contacting a new specialist, although they will prob request your records I would think. You could also go to the ER. It just sounds to me like this string of recommendations and doctors you have going is not working and it's urgent that you get someone who you trust and that will listen to you and help you. I know the last thing you want to hear is "see another doctor!" but the truth is you can't figure it out; you need a doctor and the ones you have right now are not doing their job. Also, I know it may be more expensive but keep in mind you don't have to keep going to that doctor if you have University coverage, you just need someone to get the ball rolling at LEAST and my guy is you need to get out of that clinic. Even if it costs more at first, the sooner you get this figured out, the more likely you are to avoid more serious complications from the problem going untreated for so long. Just a thought from a broke person....

That's my opinion, and I'll be praying for you please let me know if I can help in any way. In the meantime try to stay strong, know that you're not alone and you're not crazy, and you deserve to have some kickass doctors doing everything they can do to make you feel better!

Melinda
 
I agree with everything Melinda said. She said exactly what I was thinking and wanting to say :D (Good job Melinda!) I was also going to suggest the ER if you don't want to go through the hassle of new docs right now but need care RIGHT NOW!

Don't let them treat you that way! I've heard from many people on the forum they had to fight to get their doctors to take them seriously and when they couldn't they got new doctors. I was also thinking...I don't know where you are located, but maybe look on the ccfa.org website to locate your local CCFA group. Perhaps you could meet new people and get good doc recommendations! :)
 
Thank-you Marisa and Melinda. I am one of those people who needs to be dragged to the hospital - and I am almost to the point where I am willing to walk in myself. My hesitation is that if they give me an IV, and then send me home I will lose it.

I was really taken aback by the doctors response today b/c I went for thrush. I wasn't going for anything else and I had every intention of passing the "new symptom" on to my G.I and the fill in for my GP. The two doctors are in the same clinic so I don't see what the big deal is - my file is computerized so the fill-in GP would get the info re: todays appointment. I have thrush..I needed medication...
As for him asking what I thought it was..and then I must have an idea... I don't know what it is - that is my frustration. I do really understand and relate to what people are posting on here though and I do find it an enormous source of support here. If I didn't relate.. I wouldn't stick around. This is the only place that I feel that someone actually gets it. My friends last night were telling me I don't eat properly - thats my problem. How do I explain without getting graphic?? They told me celery was good for me and all the fruit!

I live in Canada so money isn't an issue as we have everything covered except drugs. I can afford that ..barely - as a student. My only options left here are a walk-in clinic and E.R. If I go to a new doctor without "firing" the old one, I could get in trouble for double-doctoring. That was why I had to tell the intern I wasn't going back. I could access the university clinic as it is deemed as a walk-in (only you have to make an appointment.)

My friend is a great advocate and has no issues speaking on my behalf. I took her to my G.I appointment and to the endoscopy. They were very nice and respectful to me then. She was working today so couldn't go with me... and I suspect he would have been different if she were.
The GP's are the ones who are making me feel like Im crazy. Dr. Foley was nice - she was the one who wanted the endometriosis tests done along with the small bowel MRI so I wouldn't have to wait another several months for a new appointment. I don't have issue with her even though she doesn't think its Crohn's. The constipation, blood, tissue and thrush all happened after I saw her.
I am going to look in to that group you suggested Marisa. I just wish I could curl up and go to sleep until June 8th for the MRI.
I noticed I have been making sure I have all my info in my purse and have all my med's in a big ziplock - it's in my thoughts to go to the E.R more and more.
Thank-you both for the extra push and encouragement. It is really difficult when you feel exhausted.
I'll tell you what though...when I do eventually get this diagnosed I am going to take copies of my results to every doctor that tried to make me feel crazy...put it on their desk - thank them for their lack of help and walk away.
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Ford gt picture
 
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Hi Wendy

Don't know what else to say, Marisa and Melinda have said it all!
I feel your pain, you know that, cos it happened to me too!
When this happened to me, I stopped all the anti depressants, cos I wasn't crazy, and I got my strength and psyche back to fight them, and I did. These drugs make you groggy, more depressed and sleepy,
This takes some balls to do this, I have faith that you can too, you have to prove that you're not mental or depressed or neurotic, you're in pain and need to be listened to, Take someone with you, that's a great idea!
Try not to listen to other non Crohnies as well, whilst their intentions are highly honourable, they have no idea what you're going through!
Hope you find the strength and start this mission for answers, and feel better soon, rooting for you Wendy!
Hang on in there sweetie
Joan xxx
 
Hi Keona, wow..your story sounds almost like mine. A year of hell and fighting between the Gi (who believed in me) vs the surgeon who took out my appendix and said nothing else is wrong. My doctor GP was fairly new in the game and she was caught in the middle. Gp's dont tell surgeons what to do and my Gi is not a surgeon but tells both of them I have Crohns or colitis and needs more testing. They also sent me to a shrink too, the guy was a moron, and never recommended squat. I was lucky tho, no antidepressants were given to me. I was in so much pain and so sick and had a 4 year old scared.

After being on pain meds and lost 40lbs I couldnt take it any more and I got mad, and told my GP and GI I want all my files because I am going to see my doctor in Toronto, I have had enough!!!! My GP said wait til I talk to the GI and they both sent me down town away from the hospital they deal with (and idiot surgeon) and I got an amazing teaching doctor who dx right away!!! I had a endoscopy and barium follow through from nose to intestines and it was hell but... dx right away because of the teaching doc's findings. If it werent for him, I don't know where I would be. With all the crap and hell I went through my GP quit, and my Gi continued to look after me until I moved away from Toronto GTA.

Don't give up, and don't let them think it is all in your head, this disease is so hard to dx. Go to a another specialist or demand your Gp send you somewhere to get answers. It is your life, not theirs, and some have ego's that don't want to be wrong, who really cares, you just want help. Hang in there, keep us posted ok!!! Big ((hugs))...
 
Jettalady said:
Hi Keona, wow..your story sounds almost like mine. A year of hell and fighting between the Gi (who believed in me) vs the surgeon who took out my appendix and said nothing else is wrong. My doctor GP was fairly new in the game and she was caught in the middle. Gp's dont tell surgeons what to do and my Gi is not a surgeon but tells both of them I have Crohns or colitis and needs more testing. They also sent me to a shrink too, the guy was a moron, and never recommended squat. I was lucky tho, no antidepressants were given to me. I was in so much pain and so sick and had a 4 year old scared.

After being on pain meds and lost 40lbs I couldnt take it any more and I got mad, and told my GP and GI I want all my files because I am going to see my doctor in Toronto, I have had enough!!!! My GP said wait til I talk to the GI and they both sent me down town away from the hospital they deal with (and idiot surgeon) and I got an amazing teaching doctor who dx right away!!! I had a endoscopy and barium follow through from nose to intestines and it was hell but... dx right away because of the teaching doc's findings. If it werent for him, I don't know where I would be. With all the crap and hell I went through my GP quit, and my Gi continued to look after me until I moved away from Toronto GTA.

Don't give up, and don't let them think it is all in your head, this disease is so hard to dx. Go to a another specialist or demand your Gp send you somewhere to get answers. It is your life, not theirs, and some have ego's that don't want to be wrong, who really cares, you just want help. Hang in there, keep us posted ok!!! Big ((hugs))...
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Forgot to send this link http://www.canesoral.ca/en/advantage
if you suspect yeast, it is new in Canada and a $5 buck coupon bought some yesterday. Can't hurt to try it.
 
So sorry that you are going through all this Keona. I can't add much else to what everyone said, except to agree with them. Hang in there! Hugs to you.
 
Oh, and now that I know you're in Canada, you should go to ccfc.org to find local groups. That's the Crohn's and Colitis foundation of canada!
 
After reading your report, I think Michael Moore's "Sicko" is a crock of sh*t! I had no idea about "double doctoring" or the other restrictions you have there under your national care system. Here in the US our health insurance system may be seriously in need of overhaul, but we can choose our dcotors and fire them at will!

Hopefully you can go back to Dr Foley and tell the intern to bugger off. Doctors can be so arrogant at times!

Hang in there - we're all rooting for you! Good luck on Jun 8 - hopefully you can hold out that long but I hope you get some relief in the meantime.

- Amy
 
Keona said:
Then, I started coughing up these evil little curd chunks. Again, didn't think it was anything major - thought it was
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OMG I HAVE HAD THESE!

except not so much coughing them up, they seem to come from above actually, i have been thinking that it was just solidified mucous from the sinus cavities? i know my sinuses are often clogged up, they always seem to have problems. and sometimes i can almost FEEL a chunker in my throat before it is really there you know? somtimes i look and i think i can see, its like, almost right behind your jawbone INside your mouth there seems to be a little opening? sometimes it looks like theyre stuck in there and i was wondering if thats where you nostrils connect to your throat?!
udh i dont know. but it has been a long time ive had this, i remember the very first time it happened io was in 8th grade lol, i thought i mustve had a bit of food stuck in a tooth or something, but it kept happening..not ALL the time and certainly not as bad as yours, but every now and then. frequently enough that its not a suprise.

ok well i didnt really read further into your post so im gonna go do that now, but i was so, excited, well not really buit you know what i mean, that i knew what you were describing and i had to post NOW.

edit:: oh wow if you google "yellow chunks throat" (ew btw) it comes up with a load of stuff. apparently this is not a horribly freaky thing? check it out.
 
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holy hell!!!
that is a lot :(

i cannot believe that with all those symptoms, especially some that are so clearly visible, they are labeling you as mental. i really really do not understand how that even happens, these people went tpo school for 8+ years?

agreed with the others, get a new doctor. i know how it is to just wnt to run out of appointments before you cry and not get a chance to tell them everything, try to type out a list or something that you can HAND them a copy and it can even be put in your chart i would think. that way before the stupid a-holes make you cry, all of the topics have been made known.

good luck hun, try hard to take care of yourself. youre doing good at being strong, keep on keepin on.
 
Ya Kelly, as I was reading your post (your very excited one..lol) I thought about how yours sound like tonsil rocks... the link you posted. The ones I have aren't lodged anywhere but I cough them up from my throat and sometimes I have to work hard at pulling them up. I think they look the same though. Both are pretty gross huh?

Astra, I usually have 1 hour appointments with the shrink and only stay about 10 minutes. Last time I saw her, she asked how I was told her the meds aren't really doing anything and how do I know if it is depression or my physical health?? She told me last time that the physical health can exasperate mental health and gave me a new drug that would give me energy. It also helps in smoking cessation. It hasn't given me energy and I had a cigarette (okay, a few) after my doc's appt yesterday. I looked up the side effects and apparently welbutrin also causes seizures. The pharmacist also told me to be careful b/c the other anti-anxiety drugs she has me on (Cymbalta) and Wellbutrin can cause a serious condition called Serotonin syndrome - potentially life threatening. My thought at that time was "what the hell??" I have started to wean myself off Cymbalta gradually and will likely be getting off everything so I can start from scratch. It's funny how they tell me to not take laxatives as it can mask symptoms yet these other drugs can cause symptoms.

Jettalady - ya, it does sound similar. I understand that doctors need to rule stuff out - before doing more expensive tests such as MRI's however, I have changed my eating habits dramatically, tried to quit smoking (made it for about 5 weeks until yesterday), went to physio therapy thinking it was arthritis in my hip, I no longer run (b/c I cant) and only do yoga a few times a week (helps my back). Down to one cup of coffee a day, etc. When you first noticed "symptoms" did you call your GI or GP?? Thats what I dont understand.. what if I have a symptom and it is non related and call my GI?...They're just going to tell me to call my GP and think Im a pain in the ass. I didnt know thrush could be crohns related until I read it here... and it may not be as the guy who posted the thread was receiving chemo, which can be the cause of thrush. So, who do I call??
The GP gave me an oral swish stuff that I take 2 droppers 4 times a day. It is called nystatin 100,000U/M. My tongue looks better but it is very painful once the white stuff comes off...which the meds seem to do. I have chunky things in my mouth that I keep spitting out and pieces of skin that comes off. Ina word... "EWW".

Amy, I have yet to see Sicko. What I seem to notice on here it that since out health care (tests, etc) are covered, it seems the wait time is sooo long. I think because there may be some unnecessary tests being done and people don't give it a second thought because they aren't paying for it. There was also a bill that just passed where surgery wait times may take longer (or the surgery themselves) as they are wanting the surgeons to do constant inventory of everything during surgery before and after they use instruments, etc. Nurses are now allowed to stop the surgery where as before they couldn't to label everything and do inventory during. The debate is that waiting lists will be longer where others are saying it will reduce the amount of surgeon errors...therefore reducing the list of surgery patients. The entire team now has to meet with the patient before surgery.
I have told the intern to bugger off and haven't returned. The doc yesterday was pushing me to go back to her and to not be so snarky..lol.. Im not sure how he got snarky but I told him Im not going back to someone who thinks Im paranoid. I think my worry is all this will be written down somewhere and I will be deemed as a "difficult patient" if I stand up for my rights and then no one will want to treat me.

It has been a LONG ongoing thing that when doctors ask me my family history (and I don't really know it) they slot me in to the mental category. They always ask why and I tell them and they switch automatically from physical health to mental health. So, anyone who has no family don't have physical issues??!! Thats the mental part! I found the same thing when I was a kid and needed help to navigate the system, a worker would call for me and they would be sooo nice to her and give her answers. When I called they didnt know or passed me onto someone else, etc. I caught on after awhile to call and say I was a worker calling on my clients behalf - I got answers..

My "friend" who I bring to my appointments use to be my worker and I am still in touch with her after all these years. Only thing is I only have access to her during business hours - she has been great taking me to some appointments thus far and knows exactly what I am talking about. She sees it all the time in her work, so I am lucky to have her. I'm calling her on Monday to let her know everything and she will likely go with me to one of the doctors and set things straight. I feel like a wuss b/c I am so drained and feel breaking down in front of them - thus looking more like a basket case to them.
Thank-you Lydia, Kelly, Amy, Marisa (thanks for the new link!) whysoserious, Jettalady, Joan and Melinda - I cant thank you enough. I dont know where I would be without you guys and this forum..seriously... I also wonder if the doctor was taking his frustration out on me for the fire alarms going off and now he had to stay later on a Friday - all the appointments were likely backed up. Regardless, Im not going back to him and will be taking my friend to the next appointment.

THANK-YOU EVERYONE!
________
YAMAHA P-120 HISTORY
 
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My doctor gave me Nystatin too didnt work. I went to my gp for that, my appts are closer with my GP, Gi's I dont bug him for little stuff. Hang in there, I would try the new oral canesten could work for you!
 
Keona said:
It has been a LONG ongoing thing that when doctors ask me my family history (and I don't really know it) they slot me in to the mental category.
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Maybe you should just start making stuff up! Tel them family history of IBD, etc. This would alleviate the "mental illness label" and lead them to look at Crohn's or Colitis seriously....

Okay, I'm kind of kidding, but after all the nonsense they have put you through... they deserve it!

- Amy
 
hey, i have used nystatin powders on the skin around my stoma, as that area gets really bad yeast infectiony things. it worked for a while, and then i switched over to just plain and simple athletes foot powder and it is like magic.
i wanna say that it is Micanizole?

maybe they have an oral solution of that if the nystatin doest work out for you.


also, have you heard of anti-yeast diets? sugars, starches, etc are what the yeast feed on, several days not eating these foods will starve the yeast.
it works, i promise, i used to be on flagyl for years on end and ALWAYS had terrible thrush, again none to your extent, but my tounge was gross. i tried the SCD (a diet similar to anit-yeast) and whenever i was diligent about the diet, my tounge was nice and normal, and whenever i cheated and ate something forbidden, my tounge was a fun house again.

might be worth a shot.
 
Awww, sorry you're going through such crap.
If the otc laxatives are too harsh, maybe you could try a stool softener like Colace?
Hang in there girly, you know youself better than any doc, and if you know that you're not psycho, then you're not. My doc thought for sure that I had anxiety, but I didn't.
Hope things turn around for you soon.
 
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Thank-you again everyone - makes me think that all of you ought to be paid the money the docs are getting as I am getting more help through here than anywhere.

Kelly, my doctor didn't mention anything about the diet but I know you are absolutely right as I googled it right before I left for my appointment. No refined sugar especially. I am going to try to eat a lot of plain yoghourt if I can - the probiotic stuff. Haven't eaten anything at all today as the high humidity here gave me a wicked headache... if not one thing ..another. So freakin' grateful to finally have some relief!! I do have a question re: Crohn's and yeast. Here's my thought. When I researched yeast infections, it wrote about how those with compromised immune systems are more prone to it. i.e: HIV, chemo treatments, those on steroids, diabetes, etc. Here's my question... I can totally understand why all of you who have been diagnosed with Crohn's get this. I am wondering why I do as I am not on steroids. Wouldn't that mean if I had Crohn's my immune system would be overactive (as opposed to compromised) - which is why they give the steroids..to suppress the immune system?
I am only on this Nystatin for a few days I believe so if it doesn't work, I will go back to Foley and take someone with me to get this all straightened out.

Amy - I can totally get your suggestion and have tried that in the past with guys that I have dated. I found when I dated the topic of family unavoidably came up and since it was usually the first date, it didn't really go well. I was always too afraid to talk about it with them so I would make stuff up that I had a great family..hehe. Then it dawned on me that if they cant accept my situation for what it is/was, then they're not the right one. I had a guy break up with me b/c he thought about children and wanted lots of family - esp. for a child. I think it was a lame excuse but it was good I found out then.
As for medical history - all I know is my mother had/died of cancer and my grandmother had sclermederma and recently (about a 3 years ago) I found out that my brother has serious Crohn's. A police officer showed up at my door one day and told me he was really sick and I might want to go see him. That was all I was told and my oldest brother called them b/c they didn't know where I were and I had protection orders against them. I called the hospitals to see if it were true and he was in one, but didn't go. Not long ago, I found them on facebook and saw pics of him. He was emaciated in a serious way and had a bag attached to his leg. It isnt like the ones Nyx and Kelly speak about as I could see it and there was nothing in it so I don't know what it was. He was also in a Crohn's group on FB and another one called The Whitmore Institute. So I think it is safe to assume Crohn's. The doctors specifically ask for diabetes or heart problems which is where I say I don't know. Then when they want next of kin, they sometimes ask about why its not a family member since Im not married. I think the bigger question is why do I get this reaction from people?? I rarely talk about it and for years kept it a secret until lots of social workers/cas workers told me that I'm not the one who should carry the shame - I didn't do anything wrong and keeping it secret only lets them hide in the shadows. Since finally getting to a place in my life where I was able to talk about it (once publically) I was asked to sit on a committee with the police to help improve child abuse laws, etc. I wish there were a committee where the topic of stereotypes and putting the blame where it belongs or accountability was the goal. Makes me think it didn't all happen for nothing. Anyhow, your suggestion did make me laugh! (and I still giggle at Kelly's excitement of tonsil rocks!).

My butt hurts, I honestly get hope from here. I do believe that all this will turn around as I have read so often that it has for a lot of people here. I am a step ahead of you with the colace :) The GI doc only said laxatives. This is a stool softener.. okay semantics but had to do something. I bought Docusate Sodium..which is colace.. (googled it after you suggested it!)

I am feeling much better about going to the doctors with someone and basically demanding that they do something to get me through to the MRI. Feel much stronger - difficult when you feel so sick and drained and the doc says something offensive. I'm ready though - I've had enough!
You guys are the best!

Now if I could just figure out what is left TO eat!...lol... GERD diet, foods I cant eat due to possibly crohns and now foods not to eat due to yeast (anything with sugar, rice, flour, the list goes on and on.. doesn't leave much...

Thanks again everyone (including Cristin :))
 
Wow, you have been thru so much! It must be so hard for you to let people into your life, but you right to get the truth out there right away, especially when dating.

With your brother's history of Crohn's hopefully the docs will look at that seriously. I guess the best you can do is give them the info you have and they will have to test to fill in the blanks. It;s great you have your friend to be an advocate for you.

And in the meantime, we are here for you! Hang in there. You obviously have great strength to have survived all you have gone thru - you will get thru this too.

- Amy
 
Keona
Diflucan is an oral medication for yeast it is a pill. Maybe you can call your
Dr and he can phone it in this would be in addition to the nystatin.
Bethy
 
Thanks Amy, Melinda and Bethy,

I am meeting my friend tonight for smoothies to see what I can do about all this to to arrange a time for both of us to meet with a doctor. By the time I get the help, I feel it will be June anyway..lol
Bethy, I will have to call a doctor regarding the thrush as although a lot of the white stuff has cleared up; it is still there and I can still feel it in my throat - sore throat and a rough feeling.
Thanks for listening everyone - I really do feel much better and almost got a second wind so-to-speak. Ready to go in there demanding some help.
Wendy
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Ford Discovery Centre History
 
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I met with my friend and she suggested I report that doctor to the college of physicians.
Just might do that. I went in for thrush and he brought everything else up.
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GT4
 
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Thanks Marisa,
I went to talk to the psychologist today and told her (she works in the same office) and she thought it was incredibly rude and uncalled for especially since I am only seeing one MD. Since I am finished the oral suspension and it didn't work, I was told to go back there which I did, and speak to Dr. Foley and tell her what happened and get the thrush dealt with.
LOL..unfortunately, when I went to make an appointment with her, she is gone until Monday - the nurse said it is too long to wait when you have thrush and made an appointment with another doctor I have not seen before ROFLOL....
She looked in my mouth told me I had thrush, took a swab and then called 2 other doctors to look at it. Adults don't usually get thrush unless they are using puffers, having chemo, diabetes etc....all of which I don't have/use.
She gave me an injection of Diflucan and some oral pills to take and if it doesn't go away I need to go to emerg so they can do some tests. The liquid the other doc gave me was the dose for a baby and wouldn't do anything for me anyway.
I'm not liking going to the doctors anymore...
Hope you are well :)
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LEXUS F HISTORY
 
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Well, hopefully the new meds they gave you will work for you or help somewhat in the meantime! :)

Haha, and I can sympathize with you about going to the doctors. I've never been to the doctor so many times in one year before! I went today to see my GP for my follow-up after I went to the hospital and was hoping to get a special blood test done my GI ordered so i can start Imuran. Unfortunately, they didn't have the proper items needed/ready to do the blood draw today (they need to put the blood on ice and ship it immediately to CA), so I have to come back tomorrow morning. And then I just remembered once I got home that it's about time I get my monthly blood tests done my GI doc ordered while on Humira. so, I'm going to have to schedule more appointments for that too!

It's annoying going back and forth, but hopefully once our health gets under control we won't have to do so much of the running around ;)

I'm glad your psychologist empathized with you. It always helps when a medical professional is understanding what you're going through!
 
I think we should pitch a tent outside our GI's home (or maybe office so it's not so creepy-like)...lol... Going to the doctors is a full-time job!

I think its funny that I got in trouble for seeing soo many doctors (when I have only been seeing one GP) and the doc who said that gave me a babies dose of oral suspension so I had to go back and see another one today anyway!! Dr. Foley is at a conference.

When you become a GI Marisa, will you take OHIP?...and when do you expect to graduate so I can mark it in my calendar and expect to have relief?...HAHA

P.S - couldn't they go to the local Mini-Mart and buy a bag of ice?? :)
________
XRV750
 
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Yeah, I'll let you know when I get my practice going, Keona ;-) OH, and my doc also said it would take a while to enter in the "special code" for the blood test. Apparently, I'm the first person EVER to get that blood test drawn at the office. :emot-dance: Haha.
 
Hope you're ok Wendy?
Looks like you're on the right path at last! Someone is listening!
good luck with the thrush thang! it's yuk, I always get it with anti biotics, metronidazole gave it to me last time.
xxx
 
Hi Joan,
I was given pills for the thrush and the doctor was scratching her head as to why I have it. When I asked she said "honestly, I have no idea." Unfortunatley, when I went to get the script filled, they told me it wasn't covered under my uni insurance - it ended May 30th for the summer! The pharmacist said it was 107.00 for 14 pills and to make a new appointment to get something different.
My tongue is a little better (but haven't actually slept - worse after I wake up, but still coughing stuff up.)
I didnt go back to the doctor as I am tired of going. How's that for an answer?...lol
I'm going back Monday when my reg. doctor is back. Im also waiting for the swap to confirm if it is in fact candida. (Im sure it is).
Hope your joints are better.
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Yamaha Ym2151 Specifications
 
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Hi Wendy

hope you get something sorted, my tongue was really sore, like I'd burnt it on hot coffee! My doc gave me some lozenges to suck, but I cant remember what they were, they were orange, beginning with L, but were anti biotic, only on prescription tho, but they worked.
Thanks, I'm still suffering from joint pains, but seeing consultant on Monday to get the ball rolling on Humira, Yay!
I posted a thread about it, I found out that withdrawal from Pred causes joint pain and muscle aches, hopefully that's all it is!
hope you're feeling better soon Wendy
xxx
 
ya, I read about the lozenges - I think the drug is more powerful because she thought I had it in my esophagus as well... My throat hurts a lot especially at night. It sounds sort of the same idea like the swish stuff. It wasn't too bad but sickly sweet when you have to do it 4 times a day.
I am glad you found out what is causing your joint pain. Prednisone sounds evil :) I hope the humira works for you!!
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Almost a month and I STILL have thrush :(
I have done a lot of reading on it and it seems to be a cause of a lot of problems. My doc thinks I have systemic thrush...it is gone from my mouth but is in my esophagus. I read a study that patients with high candida levels can develop Crohn's - amongst other problems.
Here is an article - scroll down to the test...
http://www.ei-resource.org/illness-information/environmental-illnesses/candida-and-gut-dysbiosis/

I am hoping that maybe this is the cause of all my problems. :)
 
I took Nystatin which didn't work then I went back and they prescribed difulcan. It isn't covered and the other pill medication isn't either. It is over 100.00 for 12 pills and I need them for a month... I am already paying over 300.00 for medication. I will be taking a double dose of Nystatin to keep it at bay until I can apply for trillium... it is financial assistance for those with high drug costs - I was also suggested to approach the drug company as some will reduce the cost. I am a student and my insurance has ended the last day of school.
I am also strictly following the candida diet.
What are your thoughts on the article? I have heard sooo many theories about what causes Crohn's from well water to vaccinations to now candida. What I did read was that those who were diagnosed with Crohn's typically had overgrowth of candida prior to taking medication to treat Crohn's. Their family also has higher levels of the Candida in their system.
Theres so much information out there I don't know what is reliable and what isn't.
 
Well, I think Candida could certainly be a trigger for some people's cases. I think everyone has a different trigger and some people have things they highly suspect triggered their Crohn's and others who may not know. There have been a lot of things I've read about that are linked to people with Crohn's (ie northern regions, industrialized areas, environmental factors, birth control, etc.).

I think I'm more apt to agree with the general theory that people have this Crohn's gene and something sets it off and triggers the overly active immune system. But tat trigger is different for everyone. Candida could very well be yours. I hope at least it gets your docs to take your case more seriously now!
 
ya, me too. 16 days until my MRI on lower bowel and entire pelvis looking for endometriosis.. and then the colonoscopy and Ph monitoring test. Sad to say but I cant wait.

I was just feeling hopeful that maybe I don't have Crohn's and maybe it is just Candida.

I have a stool culture to take as well for the Candida and other parasites. Creeps me out that people actually get tapeworms etc. I don't think I have tapeworms but looking at all the the things they test for makes me shudder.
 
Yah it is creepy! I'm glad you are excited about getting your tests done. Positivity always helps :) 16 days isn't too far away either!
 
WOO-HOO! Found a way to get the medication paid for!! Wont be able to get it filled until Tuesday but I have had thrush this long a week-end wont make much of a difference. <happy dance>
 
Keona,

What a horrifying and truly sad story. I'm so sorry that you have had to endure such awful treatment. The only thing I can suggest is to take a notebook with you on every visit and keep a diary of what happens and what is said. It's really hard to spit out everything you have been through and get any sort of sympathy in the heat of the moment. But if you just whip out your journal and say read this. Well maybe it would evoke some empathetic emotion and you could get some proper treatment.

I just fired my first GI because the nurse told me joint pain is never related to Gastro issues and to go to my GP. How can a nurse in an office that treats autoimmune diseases ever say such a thing? Thankfully I could fire them and move on.

Good luck I hope things start to turn for the better and soon!
 
Crohnicaly Stinky

Sorry I missed your response until now. I think that is an excellent suggest you made about taking a notebook with me to the doctors. I am going to take you up on that.

wow eh? joint pain isnt related to crohn's? Good thing you fired them because I am new to all of this and even I know or learned that it does. I sincerely hope your new GI is more educated on the subject, after all... it is their specialty!

Cheers!
Wendy
 
hey Wendy
I've only just read that link, with interest I might add, not about the Crohns and Candida, but about ASD and Candida!! loads of kids in my school have either Crohns, IBS, Coeliac so it's interesting to see the correlation between ASD and anti biotic induced thrush, but alas, it's just another one of those theories, bit like the Midwich Cuckoos one!!! lol
BTW
regarding your thrush, my dental hygienist recommended Gengigel, it's for mouth ulcers and gum disease but she said it can get rid of thrush too
xxx
 
midwich cookos? LOL.. what is that Joan?...

Thanks for the tip from your dentist. I will see if we have it here in Canada. Im going to be well armed against thrush :) (Hopefully)
 

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