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Gotcha. Yeah, I agree, I need to be on something else at the same time. In Germany I could end up in the hospital very fast if I have to wait 6 months for this to help. They don't play around with illnesses like this! I agree with you on yours probably being AI as well. But it wouldn't work for Crohns, would it? I know it is mainly used for lupus. Thats great that it helped with your hair..I would love for my bald spots to go away!

So I have hit rock-bottom. I have been on the max amount of tramadol to try and keep myself comfortable while I stay with my inlaws, but it wasn't helping my pain at all. I've been trying to relax as much as I can, but my MIL has something planned every day. Today was a HUGE dinner at this house with the entire family. At about 4pm I fell apart because the tramadol was making me somewhat loopy, but not helping my pain. I begged Stuart to call my rheumy and get better pain meds, but when he called, they didn't answer. I completely lost it, and he sent me to bed. How embarrassing. I know I need the rest, but I also know that my judgemental in-laws are going to think I'm either exaggerating or lazy. The next 4 days are packed....only only one event is with my parents, the rest are with Stuart's family. I don't know how I'm going to get through this. The pred takes several days to kick in for me...about 5. We need to finish our Christmas shopping (Stuart and I) and tomorrow is our last opporotunity...so we have decided to go to one big store (Target probably), and use a wheelchair. I cannot believe it has gotten this bad. I am way too tired of fighting this, and I am so mad this had to happen during Christmas. But my body is way too weak to be busy for over a week straight. Dinner tonight, dinner with the SAME people tomorrow night, stuart's immediate family Christmas eve, my family Christmas morning, another big meal with Stuart's family at lunch on Christmas Day, then back to my parents, then all day with the same family from lunch on Christmas day all day on the 26th. In the email she sent a few weeks ago, she literally said we can do all this because we are all healthy. And now she sees that I am clearly not, and I am REALLY suffering from all this running around. I am so embarrassed and frustrated right now. I just want the holidays to be over and be back in Germany. :(
 
It doesn't say anything about helping crohn's, but I guess it doesn't mean anything. I've noticed that alot of same DMARDs and biologicals get used for a variety of AIs. I'm still having trouble, wicked pains all within the lower abdomen today, but, surprisingly, no D. I expected it, but it hasn't come. if it's going to, I hope it does before we leave tomorrow so I'm not in agony on the 10 hour drive.

Allie, can you go to an ER? They may give you a small prescription and inject pain relief.. or at least inject pain relief. I _know_ it has to be obvious how much trouble you are having.

I'm really glad we're not going anywhere when I'm at my parents. I have my own room and bathroom on the second floor of their house so if I am ill I just go up there to rest or whatever.
 
Allie - I feel so bad for you with all those holiday plans. (I did not reply earlier when you wrote about that email from your MIL but I thought it was awful!) I wish you could stay with your family and just rest. Gift cards are fine gifts too! Everyone can find something themselves at Target. Good luck!!
 
Oh, Allie, I am so sorry you are suffering so. I really wish your in-laws were more understanding, too! I sure hope that the pred will kick in for you, so you can enjoy the holidays a little bit. And try not to worry so much about the shopping. If you have to, let Stuart go on his own. Just give him a detailed list of what you need...boys and shopping don't mix. I'll be thinking of you.


I probably won't be on the forum too much over the next few days. I wish you all very Happy Holidays & Merry Christmas!!!
 
WEll, Just wanted to let you guys know _ I am officially diagnosed.... Crohn's - as the GI put it - "not bad" - go to see him for a follow up in teo weeks and figure it out from there I guess..
 
First off just wanted to thank everyone for the warm welcome. Everybody's messages have made me feel better and more hopeful than I have in a long time. Having undiagnosed stomach problems can sometimes make you feel like you're all alone in the world and want to give up, but coming here and seeing such a wonderful online support system has made me realize that there are other people like me who are struggling with the same thing I am and haven't given up. Hearing your stories and daily struggles, I just hope that I can continue to fight the battle of being undiagnosed with the same strength, courage, and bravery that all of you have shown because I know it's not easy. And I hope to be there for all of you in whatever way I can until you find a diagnoses.

Second I wanted to suggest a new drug for everybody to look into if you haven't already. I know all of you (or at least almost all of you) suffer from extreme pain, like I do. At least for me taking pain killers barely puts a dent in my pain (I'm on Fentanyl patches and Percocet), but my doctor brought up a medication called Neurotin, which I had never heard of before. He told me that instead of working like a pain killer it actually stops the pain signals from getting to the brain. Neurotin was designed for people with seizures, but has been tested and found effective in about half of patients with chronic pain. I started taking it last night (and it may be a placebo effect-time will only tell), but my pain went down from an 8 to a 4 (my pain killers were also much more effective). It's supposed to get more effective over the course of a month so I'll keep you all updated.

Sunshine-Glad I wasn't intruding. :ybiggrin: I know that friends can be difficult in situations like ours. I have friends who have stuck by me throughout the last year only to pull stunts like staying away two weeks after I have surgery. It's really hard and it hurts. It seems that a lot of people are uncomfortable with having to deal with any sort of long term sickness or illness. I think in some messed up way they think that by giving you space they're giving you what you want. I've had mixed results talking to people. Either they're responsive and take what you have to say to heart or they pretend and just keep on doing what they were before. But you never know until you try.

Cat-Thanks for the information on microscopic colitis. Interesting, but from what I read about it the main symptom is diarrhea? One of the weird things about my case is that I mostly suffer from constipation (could be a side effect of the pain killers I'm on), but I do get diarrhea occasionally. The doctor thinks that I might have Ischemic Colitis which means that one of the two major blood vessels providing blood to my colon may be clotted. He thinks that may be the case because I had a DVT (leg blood clot) and PI (lung blood clot) earlier this year), which is rare in someone my age (23).

AllieI'm so sorry that you're feeling so badly Allie. I know long busy trips always make me feel horrible too and that's without having the added pressure of a mother in law that thinks you can do what everybody else can do. Just try to remember that if you need to take time it's ok-the world won't end (even though it might feel like it). And try to find breaks as often as you can for yourself. If theres a room that nobody's using and you're not talking to anybody, slip away for as long as you can to rest. I hope that you can get through the holidays and this difficult time as quickly as possible.
 
Thanks everyone for the kind words. :) I have thought about he ER several times, but with my MIL judging me the way she is, and how many things we have planned, I just don't want the trouble it will cause. Plus the ER might still think I'm a drug seeker even though I have a legitimate diagnosis (Well I am afraid of that anyway). I have not gotten any better, so we might be skipping church tomorrow. Just trying to trim as much as we can I guess. I cannot wait for all of this to be over! I used to love Christmas so much, but this is just pure torture. :( I'm hoping the pred kicks in in the next day or so, but I'm wondering at this point if it will be enough. This flare is the worst one yet and it is only a 10mg dose, and I go down to 7.5 mg on Wednesday.

foxfire, I'm glad they have helped you understand why your health hasn't been good! That is great that it is only mild crohns. :) I hope you start treatment soon so that you can start to feel better!
 
So, I went to my GI doctor appointment yesterday morning. I told him about my D episode I had last saturday and he seemed concerned. He then felt my tummy and honestly pushed around and stuff for a while.. I was really tender to the touch and he kept saying, "why are you so tender there my dear?" I was like.. i don't know hahah.. :( He then told me he talked to my mayo clinic doctor and that the only way to pin point what is going on is to do another pill cam (which I already knew about from the mayo doctor). He told me that the ulcerations that I have, there were SO many and they were really deep, and that he KNOWS this is not IBS and that it's not in my head. First time I EVER heard that.. he said it's just the fact that we have to get a biopsy and pin point it to make sure it is Crohn's because once I get on crohn's meds it's hard to go back the other way if it's not crohn's. He says clinically speaking he thinks I have Crohn's, but the fact that it went away for the mayo clinic, it's very unique. but he said I could be one of those unique cases where the inflammation comes and goes randomly and causes deep ulcerations through out the small intestine, which is dangerous because that's why it's been undiagnosed for so long.. so he just is concerned as the mayo doctor is too, and he just wants to make sure they know what we are dealing with FOR SURE. which i'm thankful for.
He did say the only way to do this is that he wants me to get VERY SICK.. he said throwing up, nausea, D, chills, just everything, like how I was the last few times I flared up. then he said to call him when i'm sick, and he'll order the pill cam. and then he said once they look at the cam, if it shows ulcerations within the first 4 ft, he will get a biopsy himself. but if the ulcerations start after 4ft, he said he'll have to get the mayo doctor to do a double balloon endoscopy and get a biopsy.. sooooo once i get sick, it's going to be VERY VERY VERY hectic and crazy to try to get all this done. he was like.. maybe you won't get sick again! But, honestly, i'm on 10mg of pred now, and yesterday and today have been awful with D and tummy problems.. so I doubt that never getting sick again is a choice for my tummy lol... :(
He wants me to be on 10mg of pred for 2 weeks, and then 5mg of pred for 2 weeks.. and that will be the end of the steroids. and the beginning of being on absolutely NOTHING again. Then we just wait.... :(
He said if for some reason, the biopsy comes back 'normal' when I get sick.. that they are still going to have to figure out what's causing those ulcers, he said sometimes doctor never find out what's wrong, and he told me he knows that's not what I want to hear, but that it does happen. But he said just to let him know when I get severely sick again, and we will get things rolling. And if for some reason when I get sick, if the pill cam doesn't show anything, I think we are all going to be completely shocked, so I've prayed everyday that God will show them the answers when I get sick again, especially since I have to get severely ill, like almost going to the ER again ill... :( but 3rd times the charm right?!
He did also mention, he has absolutely no problem with my GYN checking for endometriosis, because he would like to know if I do have that or not.
He was very kind to me, and I really appreciated that.
He ordered blood work, and stool tests, so I did both of those yesterday (as I had no problem getting those stool samples as my tummy was hurting). So i felt very accomplished yesterday lol.
Sorry it's so much that I typed! Just feel like he said so much at the appointment lol didn't want to forget anything.
 
Wow Sunshine, you really are having to go through it to get treated. I hope that if you do get worse then they will arrange everything quickly for you.

Allie, hope your new meds start working at least a little soon so you can get relief. Could you see your GP for better meds, how about a patch to give you better relief over the day and night ? You could ask.

Trueblue wolf, hopefully a more definitive diagnosis is near for you so you can get better treatment.

It seems so strange and unfair the things that so many have to go through just to reassure doctors minds that the diagnosis is correct, particularly when the treatment is so often the same.
It seems that some doctors don't trust their own eyes or judgement and feel that prolonging the suffering or making people more unwell is the correct thing to do. I don't know, perhaps they are right, but if the symptoms are right, the tests show a problem visually and then a treatment trial works...is this not enough. They are happy to label with you with a less serious problem that doesn't really tick the boxes...

Anyway, for all of you lurking on here cat, star, shan, carrie, mayflower, jill and everyone else, have a christmas and and hopefully a better and healthier 2012.
 
Sunshine, I'm so sorry they want to literally torture you to get an exact answer. What happened to good bedside manner? My dad had me read the hippocratic oath the other day, and this is really against that. Just because they could find an exact answer that way does not mean they should. Cat and I are both very good examples of doctors just assuming it is what it is because medicine worked, even though test results showed nothing. I hate doctors that assume everything needs to be decided via tests, because it makes us feel awful when nothing comes up yet we feel like we are dying! One of my GP's explained to me that Crohn's, at its beginning stages, can cause ulcers that come and go so fast that tests just don't find any evidence. So yours does not sound uncommon at all.

My pred is finally kicking in. I woke up this morning with almost no pain, but at this point I've almost run out of spoons because I have been so excited. But I am definetly feeling better. Thank goodness! I'm sure my inlaws can tell as well. Last night my husband went downstairs by himself and they completely interrogated him on my illness when they have not acted a bit interested when I'm around. They are so confused as to why I am doing so bad, and why the meds are "just not working". I guess they expect me to just get up and go as soon as I start taking the meds. ~.~ I don't like that they can't talk to me about this to my face. Its just awkward.

I hope everyone is having a WONDERFUL Christmas Eve, and a great Christmas Day tomorrow! I will be at my parents house finally (my inlaws have seriously been taking up all of our time) so I won't be around that much.
 
Hi everyone! I'm at my parents for Christmas so I'm not really "online" I just wanted to come by and say hi!

Sunshine, that sucks on so many levels that they want you in a bad flare to try to diagnose you :( :( I hope it works at least.

Allie, I'm really glad to hear you're starting to feel better! that's great!

my blood tests are released automatically to my account online so I see the actual results. My endo probably hasn't seen them yet, but my ACTH and Androstenedione are both high. I have a 24hr urine cortisol to do next week. I'm trying not to get my hopes up that we'll figure something out, but I am.
 
@Sunshine - It seems like your docs are like mine. They want a biopsy to diagnose. This is so frustrating. If it walks like a duck and talks like a duck - it's a duck! I don't understand why a biopsy is so important. And speaking of which, why should you even bother with the pill cam if the biopsy is so key; your doc should just go straight away to doing an endoscopy. I don't get why you should do a pill cam, and if it is bad, then an endoscopy. Just do the endoscopy and be done with it. Doesn't that make more sense?

@Allie - I am so happy to hear you are feeling better today. I sure hope you can now enjoy your Christmas.

@Carrie - So, what exactly could high ACTH and Androstenedione signify? I sure hope this means you're getting closer to some answers.


I hosted Christmas Eve dinner for my husband's side tonight. It went pretty well, except that my hubby drank too much and has had his head in the toilet all night. Sometimes he thinks he is still in college (he's now 30). I am a little ticked, because we couldn't make mass tonight. Now, we'll have to wake early and go to the 8am in order to avoid the crazy crowds at the later masses. And I am feeling a bit anxious over some things said tonight. Nothing awful, but my mother-in-law sometimes demands too much of us. We spent all night together, however, she still has listed several other obligations we must attend next week. I feel a bit pressured and stretched too thin. I hope this anxiety passes and doesn't take a toll on my health. I hope everyone who celebrates has a Merry Christmas tomorrow.
 
Yeah, it is awful that they want me to get in the flare again. but, it's all in good reason to figure out what's happening. So, I just have to think of the light at the end of the tunnel!

Jill, yeah it's ridiculous, I think though the reason behind the pill cam first is because they want to be able to know how much is being affected with the ulcerations and where the beginning and ending of it is, and if it's gotten worse. It just seems like A LOT of stress on my tiny body especially when severely ill... :(

I don't know if I told you guys this or not but yesterday was awful :( I ate, and then 30 minutes after my boyfriend and I were driving home, and in all the christmas traffic trying to get back and I got "that feeling" and then got all these sharp pains and cramping and I felt like I literally was not going to make it in time! I started crying because the pain was so bad and I was scared, and then when I got to my house, I ran to the bathroom and had D... SO MUCH D... I DON'T UNDERSTAND!! :( I just don't get it... what is the point of me being on Prednisone on such a low dose for a whole another MONTH if 1) it's not working obviously, and 2) it's just wasting a month that I could just be in a flare and get these tests done SOONER than later...
And i feel like I need to call my GI and tell him about this incident that happened. but I know he's just gonna say, well it's probably something you ate... like.. NO, it's not. it's the fact that I feel exactly like how I used to feel without meds slowly everyday. I even get the "nausea/indigestion/acid reflux/gastritis" feeling at night again now... :( ughh!

Tomorrow morning going to church and then going to my boyfriend's family's house for dinner, so hoping my tummy cooperates with that. I hope that you all have a safe christmas and a good tummy day tomorrow!!! :) *hugs
<3
 
:hug: Sunshine :(

Jill, they could show an issue with my adrenals. Problems with adrenals can cause D and other digestive issues so it could explain some of my problems. Somewhere, I can't even remember where now, I saw that you can get peptic ulcers from problems there, and I just healed up my peptic ulcer. A couple years ago now when I started really pressing to find out why I was getting progressively sicker, I started seeing a variety of specialists including a Rheumatologist, GI, and Endocrinologist. Having lived in this body and dealt with all of my issues, I feel pretty strongly that I have an auto-immune illness of some sort. It gets confusing there, you know? A lot of symptoms cross-over with different AIs. It seems like (my) doctors are quick to accept prior diagnoses and then not dig further unless I make them. It's really annoying! Another annoying thing is that, I swear, my body throws out some kind of abnormal test result every time I get sick of the search and want to give up looking.

anywho... its Christmas! I'm trying to only think about the positive stuff. I'm trying not to think about the family drama or the resultant lack of extended family christmas eve gathering, but oh well. I'm sure they're all getting together somewhere else. My parents, Kelly, Babydoll (our dog) and I have had a very nice evening.
 
Hey everyone.....
I've just been wallowing in my own self pity for the past couple weeks, haven't even really skimmed on here. I hate this crap...Really, really hate it. :( I'm back at work because I can't afford not to be, end up spending hours in the bathroom, and everyone giving those looks...You know, the "You're not really sick you're just pretending and going into the bathroom to play on your cell phone and pretend so you can call in sick and not get in trouble" looks....Same with the inlaws, the family...ARGH. I hate Christmas, I hate that I'm sick again/still for Christmas, and I hate my f'ing life. :(

ARGH! Sorry for the pity party....

I'm sorry that nobody else seems to be having any improvements. :( How awful what our doctors make us go through just to get some help....Like Jill said...If it quacks like a freaking duck!

I hope everyone is able to have a lovely Christmas, and that all our problems are on hold for the next few days!! xoxoxo, Pam
 
@Sunshine – If I were you, I’d contact my GI and ask if I could just stop the pred. Obviously, it’s not doing anything at this point, so why drag this out any longer.

@Carrie – I agree, you most likely have an auto-immune issue going on here. Are all of your doctors working together to try to figure out what is going on?

@Pam – I am so sorry you have been feeling so poorly and couldn’t enjoy Christmas. I really hope you get answers soon and can start to feel better.

I hope everyone made the best of Christmas. Unfortunately, I paid a bit yesterday for all the festivities. I was in the bathroom a few times passing lots of mucus with blood. Luckily, the blood and pain is still minimal. I did hear back from my GI, and she agreed to do a flex sig during my Jan. 6th appointment. I am curious to see the status of my colon, since I have been off meds for over 2 months now.
 
Jill, yes, I am calling him tomorrow. because this is just not working anymore.. i totally agree, why drag it out any longer than it has to be. then i can get into the flare sooner and get this stuff done faster...
i felt sooo crampy last night and then I woke up this morning with the same crampiness.. then i had D for like an hour in the bathroom... my tummy felt AWFUL. and then my mom later on was like, lets go get our nails done maybe it'll help you feel better so i said okay.. but then on the way to the nail place, my mom had to pull over at the Publix up the street and i ended up running to the bathroom (running the WRONG WAY!) and had to run across the other side of the store to get to the bathroom, and by the time i got to the bathroom i could of sworn if the bathroom was any further i would NOT have made it... it was a close call... but anyway.. had more D :(
so tomorrow i'm going to call him and ask him if we can ween off pred every 3 days again.. or maybe just 1 week of 10mg and 1 week of 5mg instead of the 2 weeks of each. idk i'll call tomorrow!!
Also... I just got a referral to go to Shands Hospital at the university of florida sooo maybe they will have a new outlook to this stuff. my mom just wants me to go to see if they think I should just get sick as well, or if they have any other kinds of tests they can do. idk, my doctor just thought it would be a good idea in the meantime since we are just waiting for me to get sick anyway...
 
Jill, I don't have a single doctor coordinating my care although they all have access to my entire medical record (all of my doctors are in the same network - cleveland clinic). I may push for one of them to take charge of coordination this year. Not sure how that works?

We drove home over two days and got in yesterday afternoon. The biggest fail of the trip was Babydoll's barking in the hotel room. It wasn't really bad til morning when everyone started leaving their hotel rooms and she would bark at the door noises and stuff. *sigh* other than that everything was totally workable.

tmi fun ahead:




I woke up this morning in massive stomach pain and had one of those awesome kitchen sink emesis funtimes (not). Kelly came rushing downstairs to see if I was okay. I must retch incredibly loud. Anyway, saw a little bit of last night's food and some large white oval thing(?). Do some pills swell in the stomach? all I can think of is the vitamin d gel which doesn't make sense. I have a request for a stomach emptying scan that I have to schedule next month, but from what I've been reading, all that does is confirm a diagnosis of gastroparesis?? It seems like a waste if it won't tell us anything that isn't obvious already. Anyway, I'm starting to feel a little better now an hour later. I have a 24h urine to do, tomorrow since I forgot to start today, to check my cortisol levels.

They haven't done a pill cam to rule out any issues in my small intestines, but other GI tests are leading me towards a different AI issue. Obviously I'm still going to come over here! But I (probably?) don't have CD.
 
Hi everybody, I hope you all had a good holiday (one down, one to go!). I'm doing fairly okay in spite of the stress, lack of sleep, and eating holiday treats I shouldn't have. My hubby brought around some tins of xmas candies to the neigbors. Well, our neighbors on either side of our house are Hmong and I'm not sure if they celebrate xmas or not, but they repaid the favor by sending us some amazing homemade spring rolls! Yummmm. Full of stuff I shouldn't have - they were fried, a bit spicy, and full of pork and cabbage. I ate two anyway and my guts weren't too keen on that. They were soooo good though! And at any rate, I survived the holidays so far. Just gotta get through New Year's now! I hope you all are doing well and have avoided eating too many tasty but dangerous holiday foods. :)

Carrie, no worries, you're welcome to hang around the club all you like. I'd never kick any of you guys out, even if you get diagnosed or if it's another illness or whatever. The big picture to me is, we're all ill and need support, and that's what this forum and club is all about to me. You've been undiagnosed for quite awhile, as most of us have been, and you're "one of us" regardless of what happens in the future or what you get diagnosed with, and you don't need to leave especially if you don't want to.

I have to make this a short post! I'll try to post more later. Hope everyone is doing well!
 
@Sunshine - I am glad you are phoning your GI. Let us know his response.

@Carrie - My dog would have gone nuts in a hotel room. She barks at everything. I guess your doctor wants to have the stomach emptying scan as just one last test for confirmation. I hope it isn't too awful of a test...it doesn't sound pleasant.

@Cat - Homemade spring rolls - yum! Along the same lines, my hubby and I made dinner reservations to a fancy Japanese/Korean/Thai Restaurant for New Years Eve. They make the BEST sushi. I have had a little sushi since diagnosis, but not a whole meal of it (we plan on getting several different types to share). Do you think this is going to be dangerous???


I had less mucus yesterday and today, which I am grateful for, but I have this awful nagging pain in my left side today. If it isn't one thing, it's another! Sigh...
 
Jill, with regards to sushi - I love the stuff but I try to play it as safe as I can when I eat it. Sometimes the sushi place I go to likes to sprinkle sesame seeds on certain things, so I always make sure my waiter knows "no sesame seeds!" as they just do not digest (TMI, but they don't even come out in my poo, they come out separately and plink-plink-plink into the toilet, gross - not to mention the fact that they hurt while making their way through my guts). I also obviously try to avoid spice although wasabi doesn't seem to cause the issues that other spices cause for me. I also try to avoid eating a lot of raw fish. I usually go for stuff like California rolls as they're made with "crab stick" which is almost always imitation crab - in other words, cooked whitefish made to look & taste like crab. But it's been cooked and is pretty safe to eat. Miso soup is always easy on my tummy as well and so is unagi (broiled eel) - unagi is a favorite of mine, at the sushi place I go to you can get unagi over a bed of rice, or you can get it as sushi or in a maki roll, but however you get it it's been broiled so it's not raw, and it's really yummy. And the old standby, when I'm feeling really crappy, I'll just have plain white rice or plain noodles! So even if you're not feeling that great, you should still have a few options of safe foods to eat at the sushi place.

I'm drooling now just thinking about sushi, ha ha. :p Yum! Sometimes hubby and I make homemade California rolls. We're getting pretty good at it. We're going to a comedy club on New Year's Eve but we're eating dinner at home beforehand, and I'm thinking now we might make some California rolls at home for dinner that night. Yum yum!
 
The stomach emptying scan isn't supposed to be too bad. I have to eat some kind of radioactive food (I'm hoping it isn't eggs!) then they will do scans of some sort to see how long it takes to leave my stomach.

I'm currently on a "liquid" diet until my stomach feels less full. I can't imagine anything was left in there after how violent my episode was this morning, but I guess you never know. It was so bad I thought I was going to suffocate briefly, but I managed to catch my breath before I heaved again. It's so awfully painful and scary when it happens :( It makes projectile vomiting pale in comparison. I don't know if I should call my GI or not. I told him about it when I went in for my upper endoscopy recently, but I didn't really explain how bad it gets? I just said, I've been waking up out of a dead sleep and have to dry heave and vomit. I don't know. I kind of want to go back to sleep and skip today.

I love sushi. I haven't had it in a while.
 
Ahhh.....sushi....I love it, but my tummy now hates it. I'm thinking its because of the rice and fresh food. Fried Sushi actually does better!

Carrie, good luck with the scan!

I'm so glad the holidays are over. That was way too much for my body to handle. Yesterday we did all of our errands in the same day, and I can't believe I got through it all. We were doing stuff constantly for 10 hours. By the end, 8pm, I was falling asleep on the couch. Phew!

I got my health records yesterday from my rheumy, and they were interesting. I was called "pleasant", and they based their entire diagnosis on the pred working. They want me on plaqeunil as soon as I get back. They also want me to get an appointment at Emory (a very good university hospital here in ATL) when I get back as well.

I hope everyone is doing well. The New Year is so close!
 
Argh....I had a whole long message typed up but I lost it....And i'm babysitting a couple monkeys right now and one just woke up, so i'll have to try again later....Blah!
 
Hi I'm new on this so please bear with me! I was told I had IBS through stress for over ten years and eventually diagnosed with Crohns, i've kept it at bay for another ten mainly with mezalazine (i think spelt right) and a short spells on steroids. Eventually had a resecton operation 4 weeks ago and have had the best xmas in 15 years because i was able to eat without being S or having D ( i think ive worked out the codes!). I know this isnt much comfort at a time when you're awaiting diagnosis but i just want to say i felt the same year after year but it really will be ok. I wish I had bothered my Dr's more but wouldnt as i just hoped it would settle down, so make sure you keep on at them. Get their work email address and update them with your symptoms. Crohns is a relatively modern disease and many Doctors are interested in it's unique nature.Here in the UK there are many undertaking research.I'm sure they'd be happy to hear from you. May I suggest contacting the Hopsital in Oxford which has a wonderful unit and undertakes international research? Good luck
 
Hi Carrie,

I had the gastric emptying study recently. It wasn't bad at all. I had to eat a microwaved scrambled egg with the radioactive stuff on it, dry toast and a small cup of water. They say you can't taste the stuff but the egg was pretty gross! They scanned me at 1 hour, 2 hours and 4 hours. Each scan was about 90 seconds so it was mostly just a lot of waiting around. Good luck with your test.
 
Mikrime, welcome to the forum and thanks for sharing your perspective. I'm sorry to hear that it took 10 years for you to get a diagnosis, but thanks for reminding us that there is a light at the end of the tunnel! I'm on mesalazine (Asacol specifically) as well - my GI and GP both agree that they think I have *some* form of IBD, they're just not sure which one - and it's been helping quite a bit. I'm glad to hear surgery went so well for you!

Cb323 and Carrie, that radioactive egg test sounds disgusting! Is there not a drink they can have you drink instead of an egg? That's just so weird. What happens if you're allergic to or just don't like eggs? (Or are freaked out by the idea of a radioactive egg?)

Carrie, if it were me I'd definitely be calling the GI - and describing the episode in graphic detail so he knows how serious it was! I've had "puke in the kitchen sink" moments too but nothing like what you described. This is a long shot, but have you been checked for kidney stones? When my hubby had kidney stones, his only symptoms were pain (at first his pain was LRQ which made us wonder if it was IBD or his appendix) and nausea/vomiting. He started out with ocassional pain and vomiting, but nothing awful. The night we went to the ER was the night he vomited for about 10 minutes straight into the kitchen sink (that's what made me think of this). Just a thought - you made it sound like the sudden and frequent vomiting is a newer symptom, so it's possible it could be something unrelated to your AI illness such as kidney stones. At any rate, I hope you figure it out soon, it sounds absolutely awful!

Allie, so rice is one of your trigger foods then? How awful, I don't know what I'd do without rice! It's one of my very safest foods. And since I get low on sodium especially in flares, rice with soy sauce (very high in sodium) is pretty much the perfect flare food for me. So fried foods are relatively safe for you? I can do certain fried foods, like potato chips and french fries, but anything else that's fried, especially deep fried or breaded foods, will make my guts very unhappy.

How's everybody else today? I'm in cramp city because my period started today. Blah! But I'm hopeful - hubby has, not really a job interview, but an appointment with a place he'd like to work at. Hubby used to do a lot of freelance work, and a guy he used to do some of his freelance work for now works at this video editing/production place. So the guy put in a good word for hubby and the people in charge decided they'd like to meet hubby. I hope this leads to him getting a job! He's applied for dozens of jobs in his field (art & animation) but hasn't found anything decent. He's had a couple interviews but full-time work is still elusive. I'm trying not to get my hopes up too much, but I really do hope that today's meeting pays off in his favor. Wish us luck! We really need it!

If I don't have a chance to post again before then, I hope everyone has a happy new year!
 
I've had kidney stones in the past. Last time they did a ct scan there weren't any and that was within this past year. Also - it doesn't feel at all like kidney stones. It's definitely stomach area, way above belly button, not in back. This weird vomiting thing has been coming and going. It has happened before in the past, it's just not been often. I'll call the GI after the holidays. I suspect he'll want me to get in for the emptying scan sooner rather than later, and I have no idea when that can happen (it's the busy season at work). It might just have to wait a couple months.

I probably won't be back until after new years so I hope everyone has a fun weekend!
 
Carrie, you mentioned the vomiting comes and goes, and that makes me think of cyclical vomiting syndrome. I don't know a lot about it so I just googled it. Here's a decent link I found, see if this sounds like what you've got going on:
http://ghr.nlm.nih.gov/condition/cyclic-vomiting-syndrome
If it's not that, then I have no idea. Probably related to whatever AI illness it is that you've got but it sure sounds miserable. Vomiting is my #1 least favorite symptom and I'm one of those stubborn people who will do everything in my power to not vomit. If I had the choice of vomiting and then feeling better, or feeling nauseous all day but not vomiting, I'd absolutely pick the latter. No question. I hate being nauseous, but I hate vomiting more.
 
Hubby just emailed me, and, in his words, "the interview went well." !! I didn't think it was a real interview, and maybe it wasn't, but still! Good news and hopefully it leads to a job for hubby! (Back to the subject of kidney stones, yeah, he racked up more doctor bills than I did this year with his kidney stones and we're still paying them off, so a job would be a very good thing!)
 
Yeah, you got it right: rice is a no-no, fried is ok. Basically anything considered good for you hurts me, and anything bad for you doesn't. I hate it! Before I got sick one of my favorite dinners was a giant fruit salad with yogurt, or a salad. I was thin for a much different reason!
 
Another quickie message, Carrie, did you say they're thinking it's gastroparesis? My friend just got diagnosed, and random projectile in-controllable vomiting and pain in the spot you described were her exact symptoms....Are you diabetic, by any chance?
 
Tamesis - yes they think its gastroparesis. I'm not diabetic, I am (was? I'm no longer testing into the pre-diabetic range while on metformin) pre-diabetic though.
 
Diagnosed- finally

Hey Everyone,
Sorry I haven't posted in SO long- have literally been sick- like out of don't know where I am sick- since right after Thanksgiving- I barely even remember Christmas. Been in and out of the ER/ doctor's appts/ tests on my brain/ etc.

Anyway, to sum it up, I don't have IBS, or Crohn's or anything at all to do with the digestive tract. I have a nerological disorder- I have Vertigo. Good Lord, that is why I have been vomite 5-6 times per week for the past, like, year now and why I have passed out twice. My MRI was normal- no Menangitis either. So I have extreme Vertigo and a neurological migraine disorder, which why I had a constant migraine for 3 solid weeks- they just could not get it under control. I could not move, at all, could not sit up or stand- if I tried I would either vomit on the floor or pass out. But now I will be on meds from now on to try to control the symptoms, as it is not cureable, but at least the room will stop spinning, and I can get my pain under control and stop vomiting ALREADY! Yea!!!

I am so happy to have an answer- see World- I am not crazy! At least not any crazier than I already was :ylol2:

I really hope you can feel better Sushine- I think of you always and praying that you feel better and get on meds that work for you REAL soon. Thank you Cat and Sunshine and EVERYONE else for all the support. It has really helped me through such a difficult time. Love you all :hug:

Happy New Year to All!! Hope 2012 brings us ALL some answers, help and hope!!
 
Shan, I am SOOOOO Thankful that you are okay and that you have an answer and get to feeling much much better!!! Goodness, I am soooo happy for you!! :) *HUGS HUGS HUGS*

As for me, I dropped down to 5MG of Prednisone today and will be on it for ONE WEEK. then... i'll be completely off any meds and we just wait... :/
My throat is swollen, hurting, scratchy and sore, and when I swallow it hurts :( I think the prednisone made my immune system weak, and I'm getting a cold or something, but it's not fun :( and I'm nauseous :( great way to bring in the new year! but as my mom said, we knew the beginning of this year was going to be a tough one for me so just gotta hang in there and try to get through it the best as I can.
I'm going to be scheduling an appointment with Shands Hospital in Gainesville, FL. They said I should get in by the end of January, so I'll be getting another opinion there. and until then, I just wait around and if I get in a flare, then we do all the tests and stuff. I feel like a ticking time bomb lol... we're just waiting... :p ugh...

On the bright side, I made a video on happy tips and I posted it in the undiagnosed part. I'm making one also on what I do at night when I can't sleep because of the tummy lol. that should be a funny one as I'm sure you all can relate!
Hope everyone has a wonderful time bringing in the new year! <3 love you guys!!! :)
 
SunshineSmile,

Sorry to hear you are not doing too well. I know the feeling of not being given a diagnosis for awhile as well as the feeling of being on prednisone. I was on low doses for two years. At some point, the dose becomes so low that it's statistically insignificant. You should ask your GI about that. You may be taking such a low dose that it doesn't effect you.

As for Shands (UF), I do not have any experience with the GI group (yet), but I do have experience with the orthopedic group and hospital, both of which are excellent.

Hopefully Shands can give you an answer to you problem without having to go through another flare. I would think that evidence of inflammation would be present even without external signs of a full-fledged flare. If you would be willing to share the name of the GI you are going to see at UF I would greatly appreciate it.
 
Not much happening here. Shoulder pain (especially shoulder blade) is back with a vengence after a 3 month near remission :( So I was hoping to have a drink tonight but no-can do. It's very bad this time, taking codeine again, along with hot water bottles, and ibuprofen gel. Glad my bone scan is on the 9th Jan and I will have them scan my back to get a good view of that if they don't already scan both sides. My body is adjusting to the meds again, no longer dopey lol but bm's in the morning do require a bit more effort which is nice but should wear off soon.

No news on MRA, heart test or PET, but I did get an appointment this morning for February 28th at Endocrinology. Wasn't expecting this- has been considered in the past and ruled out after Rheumy asked Endo for opinion. So either Rheumy is covering all bases before referring me to another Hospital or something was found in the last lot of bloods. Am anxious to know why but as I see him on the 11th Jan I won't email for an answer to phone his secretary. The prospect of a fresh look from another specialist should please me, but all I feel right now is dread at yet more waiting and this whole situation dragging on even longer.
 
@ShanBanana - I am happy to hear you don't have Crohn's and now have an answer as to what is going on with your health. How is Vertigo treated??

@Sunshine - I am glad your on 5mg of pred now and for only a week. Hopefully, you can get thru this quickly and with the least amount of pain & discomfort as possible.


I have been feeling pretty well this past week. I think all the food and entertaining is getting to me as I regularly feel bloated and sort of uneasy, but nothing worthy of complaining about. I had my last group of company last night. Tonight is New Years Eve and hubby and I are off to enjoy some sushi tonight. Thanks again for all the feed back; I can enjoy my meal with a little less fear. HAPPY NEW YEAR EVERYONE! Let's up 2012 will be a healthier & happier one!
 
Shan, oh my goodness, I don't know what to say! I am so sorry you are going through this. I hate when our bodies are so sick we can't remember whats going on like that, it makes things so much worse. :( I am so glad they have figured out whats wrong though, and that you are on the mend.

Sunshine, I'm both happy and sad you are on your last week of pred. I hope this process of getting sick again and finding evidence happens quick and as painless as possible. My diagnosis came so quickly because a lot more evidence showed up once I was off my first pred taper - my symptoms went into high gear, and I started having true arthritis. Maybe that will happen to you too since this pred has not put you into remission?

Well, I'm back in Germany, back on my own couch in my own home! The journey here was awful. We went to bed when we got here, just a nap, and I woke up in a big ole mess. My tramadol had worn off, and my pain has been the worst its been lately. That with waking up in a differen't country, my body started going into shock. :( Not fun. Thank God Stuart knew something was wrong, fed me tramadol, and talked to me to get me through it. I now can barely remember getting here because it was so painful. Glad I don't have to fly in awhile.

I don't have a job yet here in Germany...so I have time to focus on my health, but I feel guilty and useless because of it. I want a job, a purpose. Now that I am not a college student I need to find my path. Too bad jobs here for military wives are few and far between. I will be auditioning for a musical with my theater troop in the next week, but its not the same as a job!
 
Switalski, that's great that your experience with Shands was good. i'm going to be seeing Dr. Grover. She is the only GI Crohn's Specialist. I hope I can get in soon! :)

I have the flu, so I've been just resting, and my tummy has ben awfully nauseous... just trying to get through this the best that I can. And hopefully like what happened with Allie, my body will show what it needs to, to get the diagnosis sooner than later. I'm nervous, but I'm trying not to think about it. My puppies are sitting in my lap and they keep trying to type to you guys! haha They are so silly :)

Even though i'm not feeling well, I'm going to go out for a little with my boyfriend to bring in the new year. Going to see some fireworks :) I know I'll probably not feel well tomorrow because I'm gonna go out for a little tonight, but I just don't wanna be sitting at home in bed on new years... so hoping that goes well tonight... lol
HAPPY NEW YEAR EVERYONE!! Hopefully this year will bring good health for us all and a diagnosis!! <3
 
I think going and seeing the fireworks will be worth it! You probably will need to rest tomorrow though! We only have a couple hours left of 2011 over here, and I'm still at home. Germans are serious about new year...I will be able to sit on my porch and see tons of fireworks. :) That's why we came home today!
 
Hi Everyone,

Happy New Year!! A few people had asked me what Vertigo was and how it was treated. I am now taking three different meds- one is for the dizziness/spinning which is Diazepam (Valium) low dose twice a day, another one is for my balance, not sure what it's called, and the third is for my nausea/vomiting which is a high dose of Phenergan mixed with something else I don't recognize- but it's not Zofran I know that for sure.

What does it feel like to have Vertigo? The best way I can describe it is to be on ride at Six Flags that spins you in circles- like that tea cup ride or the spinnaker. When the ride stops and everyone gets up, you are still on the ride and still spinning. I can be sitting on the couch and go to stand up, and if I forget and stand up too fast, I fall down or vomit or both- is so so awful. I have had to keep little trash bags in places around my apartment because I don't know when I am going to throw up- very embarassing- I hate it! I can't wait until my meds kick in- could take up to 6 weeks! I hope not. So far, I have passed out twice, fallen and hit my coffee table- have a beautiful black bruise on my hip from that, and have lost my balance and hit the top of my head on my bathtub- that was bizarre. It hurt really bad but I didn't get a knot on my head or anything- it just gave me a bad headache, so I took some migraine meds for it. I feel drunk all the time- it is weird. :shifty:

Allie and Sunshine, I am so sorry you both feel so awful :ywow: Allie I hope you can start to feel better soon now that you are home in your own house away from your in-laws and can relax and take it easy. Don't worry about not having a job- just take care of yourself. Maybe when you get to feeling better you can find a job then but for now just take it easy! :wink:

Sunshine- sorry you the flu!!! Yuck! That is awful! I hope you feel better soon- did you go to the doctor and get meds- stay in bed and get better!!

Thank you guys so much for all the support. Everyone stay well and take care and try to enjoy your New Year's Day!! :heart: u guys!
 
Soooooo new years was nice last night with my boyfriend. It was wonderful. We went to Disney and saw the fireworks! :) It was so pretty and I couldn't have asked for a better new years with my love! :)
but after when we were walking back to the car, i don't think my body was ready for all the running around and stuff, so my tummy started hurting and my chest actually felt pain when I laughed really hard.. very weird, and it's happened before, but I don't know what that was. Probably because i'm congested from the flu? I don't know. Not gonna worry about that.
When I got home, my nose started running and getting stuffy :( and I was up till 7am. then woke up at 12 this afternoon and just have been feeling awul. D, headache, throat is still swollen a little, fever, and my sinuses are hurting. I took some flu meds and headache meds but that's it. i'm just trying to relax and deal with this flu the best that I can. I'm still on pred for another week, but the preds not helping my tummy issues anymore, so now i'm dealing with the flu and tummy issues.. i'm worried that since i have the flu and my immune system is so weak, that when i get off the prednisone, i'll flare up really fast and really bad.. but i'm hoping it's not too bad :( i don't wanna be sick... :( but i would like to get this flare done and over with, i don't know mixed feelings of course..

hope everyone had a wonderful new years :)
 
Happy New Year everyone!

I hope everyone had a good time during the holidays, and hopefully didn't feel too bad to enjoy it.

I've been sick with the flu since Christmas Eve and still feel bad. On top of that, I've been getting a lot of diarrhea which makes my fistula get irritated because stool goes through it. So it hurts to the touch, I'm sick, and now I officially have no insurance. {@ Cat-a-tonic, I wanted to get a 2nd opinion at Mount Sinai hospital which someone on this forum suggested I go to, but as you now know, I'm screwed. Hopefully I'm able to apply for some type of insurance without paying because I have no type of money coming in. I'm not sure what to do now.} I'm just tired of living this life....I have no energy for it anymore. I'm sorry for being so negative but it's how I feel. I just don't want to deal with this anymore.
 
sorry i've been gone so long. had a long vacation to the parents and inlaws. was a good trip. not too stressful. the fistula is still (very slowly) healing. all of my labs while on the remi have been perfect. have had 3 infusions now.

i skimmed everyones stuff....
loner - i got a dx, mainly based around the fistula. i also had mucus (which i still have slightly, depending really on at what point i am in my menstrual cycle), mouth ulcers/inflammation (which the remi doesn't seem to be helping, but i have a steroid cream that keeps it at bay), arthritis, those red spots on my legs and rectal pressure. oh and hemis. i hate those things. i had a ct and 2 colonoscopies with biopsies, neither of which came back positive for crohns'. i also have a family history, so they were more open to the idea of me having it.
allie - glad you have a dx, even if it is a sucky one. do you think you'll get better care in germany?
shan- yay for not having crohns! hope your meds kick in soon.
sunshine - what on earth do they mean about not being able to go off crohn's meds if it's not crohns? you just stop taking them and go on something else. hello. the only reason they don't like you stopping the biologics is going back on and having an allergic reaction. what a bunch of weirdos. who are you seeing at shands? i saw dr. valentine. he was the crohn's dude. i only saw him once, but he was cool. he did want to do more testing than i ended up doing, but did say that he probably would have put me on remi regardless of what the tests came back, he just wanted to test to see if he could get a definitive biopsy. expect more testing, but also expect to have your symptoms paid attention too as well. seriously, write down everything you can think of. i took a notebook in so i remembered all the symptoms i had.

i'm making an appointment to have all my hormones checked out. my mouth still isn't clearing up and my PMS has gone into the stratosphere. i'm thinking something in that area is not helping everything, could be one of the causes, and if i could get it under control stuff would heal faster.

is it any wonder why loads more women get autoimmune diseases? i truly think there's a hormonal component.
 
Flowergirl, I'm so glad you are doing well! :) wow already 3 infusions, time goes by fast! I'm glad your fistula is healing even though it's healing slow. and i have no idea what they mean lol, my last day on prednisone is TOMORROW! I feel like i'm graduating from something but i'm not sure how to feel about it lol. i'm happy i'll be off of them, but then that means we just wait for a flare. which is kinda hard to think about, so I just try not to lol. But yeah. I'll be seeing Dr. Sara Glover. Still waiting for my appointment date, but i'm glad to hear what you said about Shands. They sound like a wonderful place! I'm glad they are taking care of you as well. I'll definitely bring my notebook with me :)
 
Boy, back to work, and I am so busy! I was so spoiled with being off so much with the holidays. I don't feel too hot today, so I am going home to crash. My GI appointment & flex sig is on Friday. I don't know what I'll get out of it, but we'll have to wait and see.


@Sunshine - I am glad you enjoyed your New Years Eve, and I am happy to hear you'll be done with the pred. Let's just get the inevitable over with. I just hope it won't be too painful for you and a dx will come quickly.

@Shan - Thanks for the info. I hope you'll see an improvement soon!

@Loner - I am sorry to hear you are not doing well and without insurance. Is there any hope of coverage soon?

@Flowergirl - You may have a good point that hormones play a part in autoimmune diseases. Many have issues around their period, and pregnancy seems to have an effect, as well. More studies need to be done on the subject.
 
Hi everybody, I'm here! Like Jill, I've also been super busy with work so haven't had much time to post, although I've been lurking and reading.

Shan! So happy to hear that you finally have a diagnosis and can treat this! I hope the medications work well, and please keep us posted on how you're doing. You posted some info about Vertigo but I'm curious about a couple other things - specifically, can it go into remission? It sounds to me like the meds you're taking are more for controlling the symptoms rather than the illness itself? Can the illness get better or is it more a matter of just keeping the symptoms under control? At any rate, sending you a big hug and hoping you can get back to feeling well!

Jill, best of luck at your GI appointment, and I hope you can figure things out one way or another (either confirm that it is indeed Crohn's or determine that you need more tests or a new GI). I've never had a flexi sig - do they sedate or numb you at all? If not, it sounds pretty uncomfortable! Good luck, fingers crossed for you that it's a productive appointment!

Sunshine, congrats on "graduating" from pred, ha ha. ;) I was only ever on pred for a couple of very short times (5 days and then 6 days) so I'm not terribly experienced with the stuff, but after stopping it the first time my symptoms came back with a vengeance, so I wouldn't be surprised if you flared up right away. I hope when you do flare that it's not too miserable and that you can get in for the tests right away. Good luck! Oh, and I watched your Youtube videos - they're very cute and helpful for people in our type of situation! I especially liked the one where you talked about what you did when you were awake all night. I can so relate, I take handfuls of Tums too (even when I'm not flaring - I cannot exercise unless I take at least 5 Tums beforehand, otherwise I get too nauseous and my reflux gets too bad to exercise).

Allie, glad to hear you made it home to Germany safe and sound. What's the game plan now? Have you gotten a referral to a rheumy over there? Still on pred?

Loner and Sunshine, I'm sorry to hear you both have the flu. :( I get my flu shot every year but it seems like about half the time I'll still catch the flu anyway. I got the flu a year ago - I was on Entocort at the time which lowered my immune system and I got a lot of colds and viruses at that time too. Not fun! It just seems so unfair, to get a flu or a virus on top of already being chronically ill. And apparently getting the flu shot doesn't help all that much! I got my flu shot this year but then I read somewhere that it was only something like 55% effective, great. Feel better soon, you two!

Flowergirl, you may be onto something with regards to hormones and illness. It certainly seems like the Undiagnosed Club is primarily women! And of all the people I know "in real life" with IBD and other AI illnesses, I can only think of one male and all the rest are females. Interesting!

Well, I'm not doing so great. Been having a lot of cramping and nausea this week. I'm not quite sure why. I felt great over New Year's - I ate unsafe food (real pizza with lots of greasy cheese!) and didn't pay for it. I messed up my sleep schedule by staying up late to ring in the new year, and I didn't pay for that either. I exercised a lot too over the holiday weekend and felt good. But then yesterday & today I've not been feeling well at all. I haven't been able to exercise the past few days, I'm exhausted but have a hard time sleeping, and have had vivid strange dreams when I do sleep, and have been having quite a bit of nausea and abdo cramping & pain. I'm not in a flare (no night sweats nor chills nor any other telltale signs. Maybe the holidays and the stress just caught up to me? I'm not sure.

I hope everyone else is well! Mayflower, Star, anyone else I may be forgetting - hope you are well and had a good New Year!
 
@Cat - I did one with "twilight sedation" and another without anything, and this time I am having it without anything. It is uncomfortable, and I imagine it could really hurt if you are badly inflammed. But the procedure takes 10 minutes w/o drugs. With sedation, it turns into a 4 hour event. And the nurses always have such a hard time finding my veins for the IV, that I suffer the most pain with the nurses stabbing 10+ times. So, I am having my flex sig without anything at all. Hopefully, it will be like pulling off a band aid - painful but quick!
 
@cat - i sometimes finds that it takes me a couple days after the holidays to get run down. like you're running on adrenaline and then you come back and your body realizes what you've done. :eek2: like this morning i wake up and my husband says you look really tired, you have huge bags under your eyes. thanks, honey.
once you get back into a routine you'll probably feel better. my acid has been bad too. the couple weeks before my last period it just felt like i had actual acid sitting in my throat. then off my period i felt really good for a little over a week. now i'm just getting over the ovulation hump and it's coming back with a vengeance. i can feel my zantac wearing off as i type.... :tongue:
 
Hey Everyone!
Well my world is still spinning- haha-literally. :yrolleyes: Somebody stop this crazy ride; I want to get off! :runaway:

@Cat- no chance of remission for me- I will have to take meds from now on, and yes, to only treat the symptoms- No surgery and no cure is possible. And to boot, if I let my meds run out and don't stay on top of it, I will have a major relapse, like the ones where I passed out or when I threw up for 6 straight days and ended up in ER- so I will really have take care of myself or it will me 10X worse than it is right now. At least I am feeling some better- the major pain in my head is MUCH better and I have not thrown up for 2 SOLID weeks- yay! :dance:
I have to admit though that I am still very dizzy and "spinny", but it is going to take some time for the meds to kick in. I cannot wait to feel normal again. (as normal as possible anyway)

@Jill- what is a flex sig? What does that test for? I am clueless... I hope you get some answers soon!

@Sunshine- I hope your flu is better, and I LOVE your videos- so cute. It was funny when you crammed all those Tums in your mouth. :ylol:
 
Thank you Shan and Cat about the videos that I made! :) I'm just trying to help people like us!! :)
I'm trying to think of another video idea, any ideas you guys?!? :)

Jill, thanks I hope I don't have too much pain too. Watch... I won't even flare up! lol we're all waiting for it, and I bet it doesn't even come back again hahah :p that would be awesome, but I doubt that...lol funny to think about though!
And GOOD LUCK with your flex sig! I had one done before! I can't believe your are doing it without any sedation!! :( That is making my butt hurt just thinking about it! You are very brave!! I'm sure it will be fine though. :) I hope it can give you some answers! I'll definitely be thinking of you!! Hope everything goes well :) *hugs*

Shan, so happy for you that you haven't had any headache pains or any nausea!! YOU GO GIRL!! :) so happy for you!!!

Cat, that is usually how I am too when it comes to being really busy and active. If I feel like I'm having some good tummy days, I end up going out to the movies, or going to the mall and stuff, and then a couple days later it really hits me and I end up getting sick. It's ridiculous lol :p
I went on the eliptical today and my acid reflux is bad now, why does exercise make it worse?? it makes absolutely no sense. lol again... just ridiculous! :p So sensitive to everything!

I'm really excited for my "graduation" of Prednisone in the morning!!! :) I feel like I accomplished something lol. Meanwhile, my mom is in the other room nervous as anything... but I will be okay, and when the time comes that I get really sick, well then it's time. but I'm not going to worry about it yet. Just keeping positive!
 
@Shan - A flex sig is a scope that can see the last 1/3 of your colon, unlike a colonoscopy, which can see your entire colon. My main issue is in my rectum, so a flex sig is helpful for me as I don't have to always do a full colonoscopy.

@Sunshine - That would be awesome if you didn't ever flare again! But being that you haven't been feeling too hot, I doubt that will be the case. But we can hope for a mild one! Thanks for the well wishes on my flex sig. I didn't find it to be too painful last time. The worst part is when it reaches the end of the descending colon; that can hurt a bit.
 
Sunshine, exercise makes my acid reflux awful too! I have figured out a system that works okay for me. I don't eat anything for 1 to 2 hours before exercising and I only drink water (even Gatorade can make my reflux worse when exercising!). I take a Zantac about 1 hour before exercising, and 30 minutes before exercising I start taking Tums. I have to take at least 5 Tums, but sometimes I take more than 5 if I'm feeling a little iffy (if I'm feeling a lot iffy then I skip the gym altogether). Then when I exercise I can still only drink water. If I do any abdominal/stomach exercises whatsoever, then I have to stop and rest for a bit afterwards because those types of exercises are the worst for my reflux. When I'm done exercising I can eat and drink again although I take it very slow (like one bite of sandwich every 5 minutes) just to make sure everything's sitting well. Yeah, it takes a lot of work just to be able to exercise! I'm so jealous of healthy people who can just hit the gym without doing at least an hour's worth of preparation beforehand, ha ha. I have a GI appointment at the end of the month and I'm hoping he and I can work out a better plan for keeping my reflux under control. I take 2 Prilosec, 1 Zantac, and Tums as needed every day - and even so, my reflux isn't super well controlled. There's got to be a better way!

Shan, I'm glad to hear that the meds are working and that you're not in as much pain, and YAY for not vomiting in 2 weeks! But that really sucks that no remission and no surgery is possible. A wise person once reminded me that, although there's no cure now for what I've got (assuming I've got IBD), medical science is making great leaps and bounds. So hopefully in the not too distant future there will be a cure and/or better treatments (not to mention better diagnostic procedures) for both Vertigo and IBD.

Oh, and Shan, in your other post you mentioned you were taking Phenergan (sp?) and something else for anti-nausea but that you're still feeling "spinny" and dizzy. The other anti-nausea med isn't Compazine, is it? When I first got ill they put me on Compazine and one of the common side effects is dizziness. (It never did a thing for my nausea either but that's another story!) I literally felt so spinny and dizzy while on it that I was at my desk at work one day and suddenly had to hold on for dear life - I felt like my world was spinning and I was going to fall off if I didn't hold on tight! After a few doses of Compazine I got another side effect from it, I felt like I couldn't breathe (it was pretty scary and lasted for a full day!). I couldn't take a full breath and felt like I wasn't getting enough oxygen. So I stopped taking Compazine and switched to Zofran, which hasn't given me any side effects. Just a thought, if it is Compazine, it might be adding to the problem.

Jill, I have a similar problem with nurses sometimes having an issue with finding my veins. I have decent veins too so I don't know what the problem is! There was one week a little over a year ago, I had a bunch of blood tests and they were a bit rough on me so the crook of one elbow was all bruised and needle-pricked from that. Then I had my pill cam later that same week, and I ended up on IV fluids the evening before because the prep made me too dehydrated. The nurse who did that IV blew a vein in the crook of my other elbow so she then put the IV in my wrist. So then both arms and one wrist looked awful! I looked like a drug addict, and even though it was late summer I wore long sleeves until everything healed up because it looked so awful. So, I don't blame you for wanting to forgo the IV and the sedation - the flex sig doesn't sound pleasant, but it does sound worth it to skip all that other stuff and get it over with quickly. Good luck tomorrow!

Flowergirl, it's odd because usually I feel bad the next day if I'm too stressed or eating the wrong things. I don't usually get a delayed reaction so I don't know if this is a delayed reaction to the holiday or something else. I have been noticing bright red stuff in my poo lately, but it isn't blood. When I eat tomatoes, I always see the tomato skins in my poo later, and this looks quite similar to that but I haven't eaten tomatoes lately. The only red things I can think of that I've eaten lately are M&Ms - but I didn't eat just red ones, so if it was that I would think I'd also see green, yellow, etc in my poo, not just red. I don't know what is up with that! It's not blood, it's not tomatoes, and I don't think it could be M&Ms. It's not the same color as any of the pills or supplements that I take. It's a mystery! I am feeling somewhat better today, so I'm just going to take it easy for a few days and not eat any red stuff.
 
Cat,
No it is not Compazine- it is just a very high dose of Phenergan (50 mg-2 at a time when I am vomiting severely) which is a LOT so I only take that much when I am home because it knocks me out (I usually take one- 50 mg). The spinnyness is just the Vertigo- it is just going to take time for all the meds to kick in- he said it could be up to 6 weeks, but he really thinks I will be much better in 3-4. Tomorrow will only be one week, so I just gotta be patient.

Dear Lord, grant me patience- I WANT THEM NOW! :ycool:
 
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Hey everyone,
I've also been super busy, and haven't even read since I last checked in....Claire has an ear infection, I have a sinus infection, am still working full time, etc....Argh! the hospital called today though, and my MR Enterography is booked for Monday...So excited! I did some reading, and they say it's nearly as effective as a pill cam, so i'm hoping they find something. :)

Sunshine - As much as I wish you never had problems again, I know it's probably not likely...So, I wish you a flare that comes hard and fast, so you don't have to suffer long. (That's sounds so awful.....)

Shan - I hope your pills kick in soon.....My husband suffers with very mild vertigo and I know how much it affects him...I can't imagine it being that severe, how awful! :(

Cat - I hope that things settle for you soon, and you start feeling better again, like you were over the holidays!

Allie - I hope that you are able to hook up with your doctors in Germany soon, and they can help get things settled, and you'll feeling better soon.

Jill - Good luck with the Flexsig....I agree with the others, no way would I ever be able to do that without sedation!! EEK! :(

Flower - Funny how it is with the hormones.....When I was pregnant I had NO problems, pulled me out of a flare actually, and all my life i've had bowel issues around my cycle!

Well....I'm off to bed....I'll try to be better at keeping in touch!! :)
 
I am back from my scope. All was completely clean. No sign of any inflammation.

Hubby and I had a long talk with my GI. We discussed all my results from start to finish. She said we've done "extensive" testing, and at this time she does not have evidence for a diagnosis. She said that who knows what the future will bring in a year, 5, or ten, but at this time, there is no sign of IBD. We also discussed me getting pregnant this year, and she said go for it.

I have done A LOT of testing, and I think I am going to have to just accept being undiagnosed for a bit longer. I have my highs and lows, but overall, I am managing well and I should be greatful for that, I guess. My goal this year is to start a family, and that is where my focus will lie.
 
Wow, Jill, I don't know what to say. I hope she's right, I guess!

Best wishes with starting a family. Kids are something else! It's interesting seeing yourself and your husband in a person you both equally had a share in producing.
 
are palm readers the way foward?...supose i will find out very soon!

hey everyone happy new year!

hope everyones not been suffering over christmas with all that gorgoeus but pain full food!i suffered but wanted to try and enjoy a atempt at my xmas dinner this year..was yum,but ov normal pains and real swolleness...but i kept trooping on.

Had a bit of a eye opener today as i decided to go see a phychic for a reading....she was totally spot on with everything to do with me and my partner and our lil girl,and many other things,BUT i did go with alot of intention of answers.
i walked in and yes i do look ill,very pale dark rings round my eyes and just weak looking...basically like i have an eating disorder!BUT.....
As so i walk in the door she said ur problems not in your head...your b6 and b12 level are barely exsistent!!!you need to get them out or ur gna be fainting and in and out of hospital again!!! now i know nothing much about this but i know this can be the cause of generally feeling really ill and weak and struggling to get out of bed,,she mentioned i may have to have injections.she also told me i suffer with regular blockages and alot of trapped gas, and also a hidden ulser somewhere, she also said that i have had damange to my left side thro child birth which hasnt been notice, and maybe the scar tissue is some of the pain..she said i was a very nevous person and that i worry too much and that i cause most of my problems with all these problems i have with my nervous system...which i do understand in some circumstances.
she advised me to totallly stop drinking coffee as this is justa no no for me. said to fill up on mash and horlicks!lol! hate the stuff but hey...felt quite upbeat when i left as i was going down that deep dark hole again...the one i supoose we have all tryed climbing up to our diagnosis...which seems far away.
she was correct about alot of things,however she did say the massive mass moving in my stomach is gas,however 5 different consultants have seen it and said they have never seen it before in someone in their medical career. so was a bit confused there!anyway i thought id let u guys know...see what ya think?does anyone know anymore about b6 and b12 ?and can other problems and symptoms that can acure with these? also been having really chronic back ache when im walking,dont think the swollen belly helps...but ouch :( going to see my gi on the 9th jan for all the pill cam results(finally) and ask him deffo if my b6 and b12 level have been checked?sure its worth a try.! sorry cat if u have to edit all this lol! im a forum virgin,lol
keep smiling peeps hopefully we will all get our proppa answers one day!take care.xxx:blush:
 
Jill, I'm sorry you still don't have an answer. I hope you continue to do well and have a great new year. I have also done a lot of testing. I have another pill cam scheduled and possibly a double balloon endoscopy. I think if the pill cam comes back negative I'm going to wait on anymore testing. I'm really worried about the debt thats starting to add up. May have to just wait and see if I flare again. It's hard to know what to do. Best of luck on starting your family!
 
Tamesis-
I guess you are familiar with Vertigo then, being around your husband. Does he walk and act like he has been drinking? I have had so many people ask me, "what are you on? Are you drunk, are you high?" I just laugh and say no, I have Vertigo! So hard to put into words, but it's like I have all the side effects of Happy Hour with none of the fun- haha- and I mean NONE of the fun- No more alcohol for me, ever- doctor said HUGE NO NO- will mix with my meds and make me very very sick- I guess it is a good thing I am not much of a drinker. I just hope it doesn't get so bad that I have a wreck- that is my worst fear. If I had a wreck with my condition, I could possibly lose my license. Everyone- please pray for me that that does not happen! Hope the meds kick in before that happens. I have so many bruises on my body- it is awful- I think I have run into or fallen over every piece of furniture I own- it is sad!! Haha :ytongue:


Jill-
Sorry you didn't get any answers, but think of the blessings and joy a baby would bring you. I was never able to have children, so I am happy for you!!! I wish you all the best! :heart:
 
Jill, I'm sorry no answers right now, but things do happen for a reason. maybe it's your time to have a baby and then after, you'll have your answers. I'm so excited for you to have a baby, you have to keep us updated!! :)
I hope that you continue to do well though, hopefully your symptoms don't start to get worse for you. Definitely keeping you in my prayers! <3

Cat, You should definitely tell your doctor to figure out something else for your acid reflux! Sounds awful, all the things you have to take just to get your exercise! They should have just one nice pill for you to take that will help for your reflux! Your doctor needs to get a move on helping you out! You shouldn't have to take all that stuff :(
 
Jill, I am so sorry you are still stuck in this limbo. I have never understood taking away a diagnosis like that, and I don't think I ever will. Like people say, if walks like a duck, quacks like a duck....its a freaking duck. I hope you are able to manage until you get final answers, and if you are going to try and get pregnant, I wish you the best of luck!!

Shan, I am a little confused on the vertigo. Is yours chronic? All the vertigo stories I have read were temporary cases. I'm really glad you haven't thrown up lately!

How is everyone else doing? Sunshine, how are you doing off the pred?

I am tapering off the pred myself, and my flare is just getting worse and worse. Every time I go on pred, and go off of it, my symptoms are much worse, and much more visible. The main issue I'm having is my weight. We weight my dog every Sunday (she is on a diet, needs to lose just 5 more pounds!), and I have been weighing myself too...and I just keep losing more and more weight. My husband gained 8 pounds over the holidays, and I lost 7. >.< Then this past week I lost another 3, even though I tried to eat three times a day and dessert. I have tried to find a way to gain the weight back a healthy way, but the best way is to exercise...and I don't think I have the spoons for that! Most people would love this but I don't.

My appointment with one of my doctors here in Germany is the 18th. That was the soonest they could get me in. I explained that I had a new diagnosis and I needed to get on all the right medications. Hubby wants to come to explain to them that the tramadol is doing nothing for my breakthrough pain at this point, and I need a small amount of something stronger for those times, because he thinks I won't be able to get it on my own. But he will be leaving that day for 2 weeks away for Army training. It will be the start of long stretches of being alone here in Germany, which I am very worried about. As for seeing a GI and Rheumy (which has been highly recommended by my rheumy in the states), I don't know if it will happen or not. I'm kinda hoping we can just go on with treatment since tests aren't really going to help at this point. Any specialists I need to see with either be a 3.5 hour one-way drive to the military hospital or a German national that barely speaks English. I'm kinda screwed either way.
 
Happy New Years Everyone! It is great to read that some of you are having successes in finding diagnosis. It sounds like a few of you had some awesome NYE experiences too! I like many of you have hope for the New Year.

I'll try to catch you all quickly up on my recent trials...So in Oct I hit a low. I had never felt so horribly in my entire life. The GI doc did a CT Scan to look for fistula, which she didn't find. Only found an inflammed liver which nothing was done about. So the IBS diagnosis continued and I stayed on probiotics and antibiotics. Tired of it all I decided to go extreme and start on the Specific Carb Diet. I started feeling a bit better, but still had my bouts of problems. In Dec I went in for a follow-up with the GI doc still IBS (obviously since I didn't have any further testing) she decides to prescribe me Donnatal for my pain. Within 24 hours of my first dose I am back to how I felt in Oct. I keep going for 3 more days and I get worse and worse. She finally tells me to stop. I am still recovering from that. So I don't know if spawned a flare or if the reaction was just that bad...

The nurse from my GI doc called and let me know that I was being way to nice to the doctor. That I should demand more from her, so she schedules another appointment (thats in a week). Until then I have my first appointment with a Rheumy on Thursday.

I am just tired of hearing the same thing over and over. No new test to confirm or deny otherwise. My husband and I want to have another baby, but I am not going to subject myself to pregnancy until I have a more clear answer. Some days I don't even feel like I can care of myself and my son, let alone try to have another one. Luckily I have a terrific husband, who is empathetic, even if doesn't really understand everything I am going through.

I like the rest of you would just like an answer, so hopefully a new year will bring that :)
 
Wow, what an interesting thing for the nurse to say...I wonder what she means by that? Maybe she clearly knows something is wrong and they want to help? Whatever the reason it sounds like you are in good hands! I hope the rheumy can help as well...I don't know where I would be without my rheumy!
 
@Allie, I just think she feels like I am being to passive about the whole thing. She has seen the files and I think she is thinking it is something more than IBS but figures I am not being demanding enough to get further testing done. She is super sympathetic with my situation I suppose. It is nice to have someone on my side...lol.
 
Jill, I'm sorry to hear that you'll remain undiagnosed for awhile longer, but I am glad that you're moving forward with plans to have children. Congrats, and I hope you're able to go into remission during pregnancy - I've read a lot of stories on the forum of women saying they felt much better when they were pregnant, so hopefully you can have a similar story!

Shan, I hope your meds kick in soon so that you can drive safely! And of course I hope they kick in so that you can feel better. I can't drink anymore either - not worth the pain and d it causes - and if it makes you feel any better, I'm such a clumsy klutz that I also frequently have lots of bruises! I trip over my pets all the time too (I have a corgi which seems ideal for tripping over as she's short but sturdy, and cats are so good at being underfoot, ha ha). Maybe we can start the "No alcohol but lots of bruises" club! ;)

Tamesis, I hope your MR-Enterography went well! That's one of the few tests I haven't yet had (I had an MRI but it was of my liver). I hope it was an easy one and that they didn't make you drink anything vile. More importantly, I hope it can lead you closer to a diagnosis! Good luck!

Stace, no worries, I won't edit your post. If long posts were a problem then I'd be public enemy #1! Ha ha. As for the B vitamins you asked about, I know that B12 is frequently low in Crohn's. If I'm remembering correctly, this is because the terminal ileum (end of the small intestine) is the spot that absorbs B12, and that's the area where Crohn's most commonly manifests, so if the TI is inflamed then it won't absorb as well. You can take B12 supplements - I take a sub-lingual (under the tongue) B12 losenge every day. You just pop it under your tongue and let it dissolve. If your B12 is really low you can also go to the doctor and get injections of it. The first step would be to get your levels tested so that you know where they're at, if you haven't done this already. As for B6, I don't know much about that one. But if your B12 is low then that's another sign that this could be Crohn's.

CB323, good luck on your pill cam and DBE! I hope they can shed some light and get you some answers!

Sunshine, you're off of the pred now, right? How are you doing? And you're right, there should be a better way than to take all those antacids just to be able to exercise. I'm going to talk with my GI at my appointment later this month and see what he thinks.

Allie, up until I was in remission I was the same, the weight kept dropping off of me. In a flare I'd lose weight and then during the better times I'd try to eat and eat a lot, but I'd only end up maintaining the weight I was at - then another flare would come along and I'd lose more. It wasn't until I was on Entocort that I was able to gain all my weight back (plus a few extra pounds, oops) and since I've been off of Entocort I've maintained my healthy weight within a few pounds up or down. I know I've gained muscle since I've been exercising regularly which must mean that I've lost some fat since I'm at just about the same weight as I was when I first started exercising. So, it's a good thing! I hope you can get to remission too - when you're so ill it seems impossible to gain weight, but trust me, it's possible (steroids definitely help!). I hope at your appointment on the 18th that they're able to give you some better meds and/or keep you on pred for longer.

Space, they found that your liver was inflamed and they did nothing??? Did they have any explanation as to why it's inflamed? I think it's a good thing that you're going to a rheumy - I've learned from Allie that autoimmune illnesses like Lupus can inflame the organs and Lupus can also mimic Crohn's symptoms in some cases, so you might want to let your rheumy know about your liver and see if he/she can check your ANA. (It's a simple blood test - I had mine checked awhile back.) And as for possibly having a bad/long lasting side effect, I don't know with regards to that specific med, but sometimes side effects can linger for awhile. When I was on hyoscyamine, it caused awful nausea and vomiting so I stopped taking it after a short time - but the nausea lingered for several weeks afterwards. I hope you start feeling better soon! Good luck with your GI and rheumy!

I hope I didn't miss anyone! Hi May, Star, everybody else.

As for me, I'm doing pretty well lately. I am enjoying this weather - NO SNOW which is unheard of for January in Wisconsin. Literally, there's just brown grass and dead-looking trees, no snow on the ground nor in the air, I love it! Also it was 45 degrees (fahrenheit) today and it's supposed to be 50 tomorrow! It's usually like, 20 degrees this time of year. It's awesome! I went to the zoo and I also went bird watching with my mom over the weekend. We saw a snowy owl and a bald eagle. I'm glad that both my health and the weather are cooperating at the same time - how often does that happen??

Oh, and I've been trying to be on the forum more, really - but our internet at home is down and the repair person is supposedly coming tomorrow (but it seems like half the time they can't fix it and have to make a return visit at a later time so I'm anticipating that). It's so annoying having no internet - I have no smart phone either, and although I do have a Kindle Fire, it's Wifi only, no 3G, so I can't get online with it either (I'm posting from work right now). So I'll post as often as I can and fingers crossed that my internet at home is fixed soon!
 
Allie, im glad your appointment is soon!! of course, not soon enough! Sorry you are not doing well tapering off of pred :( so sad... :(

I haven't gotten any worse being off of pred really. tummy cramping and stuff but nothing worse that I've felt before. I do have this like crampish feeling in my chest that kinda is near my sternum, it's been going on for a few days idk what it is, it comes and goes. maybe just coming off of the pred, is making other things work weird? idk lol. and I've been getting head aches! :( really bad ones! :(
but I'm hoping that I get sick sooner than later (sounds so bad saying that lol). My mom got me tickets to see Kelly Clarkson in concert on February 2nd... and I am just hoping that I don't get sick close to that date :( because I want to be able to go!! That's something that I'm really looking forward to and I hope I can go and not be in the hospital at that time! But, of course health comes first, but i'll keep hoping.
I officially have an appointment to go to Shands at the University of Florida in Gainesville on January 30th!!! It'll probably be just like talking to the doctor and going over recent tests and stuff, but then hopefully she has a feeling on what's going on or what tests need to be done. or maybe i'll be in a flare at that time, and she can order the pill cam? who knows, just taking it one day at a time! I am on a waiting list though as well for if Shands has a cancellation. So there's a slight chance I may be getting in sooner than the 30th, but we'll see.
I started a new project :) I am making my very first PURSE!! I'm sewing it :) so excited! It's turning out pretty good so far, I'll have to take pictures of it when it's done!
School started again, i'm taking an online class. Hopefully it's not too much stress with all this health stuff going on.
Hope everyone is doing okay!!! <3
 
Well....The MRE was THE most mortifying experience of my life. :(
I had to drink slightly over a liter of what they told me was oral contrast....500ml, then another 500ml 20 minutes later, than 150ml 20 minutes later, then 100ml 20 minutes later - right at test time. After I finished the second 500ml I was gagging, burping....trying as hard as I could to keep it down. I was unsuccessful, and ended up projectile vomiting all over the bathroom from the entrance. :( So, of course...I had to re-drink the crap. After that, they tried to start an IV in me...That was fun, five pokes later it was finally in.

At this point, i'm getting really bad cramps, gurgles, and I say to the tech "This is really running through me....Is this normal?" to which he says "I don't know, we don't use it often". I said "What if I have to have a BM while i'm in the MRI?", and he tells me "well, we can't stop the test. You can go before you go in, and if you have to we would have to rebook you for another day". I said to him "Yeah, I can go before I go in, but did you look at my paperwork? Chronic diarrhea? Urgency? Seriously buddy!!!" Anyways, I had some time to go to the bathroom, tons of the big D....Yeah...In my puke covered bathroom.

So, the radiologist comes in to inject some Buscopan, to paralyze my bowels for the test. I asked if the stuff I was drinking was supposed to act as a laxative, and, low and behold, it is! Anyways....test went OK, I didn't have too many urges when I was in there, and when I did, I was able to just breathe through them...I'm sure the Buscopan, and laying down, probably helped. Sucked to hold my arms above my head for 45 minutes though!!

Then the awful happened.....Came out of the machine and had to go, they unhooked me and I booked it to the pukey bathroom, which the housekeeping was now cleaning. Urge passed, I was like, ok, she's almost done, I can wait....Changed out of ugly hospital gown, into my clothes, head to the bathroom, oh, nope, not going to make it. :frown: Pooped my pants...in front of the whole waiting room. :( So, I went to the bathroom and cleaned up, then back to the change room just hoping they had some pants I could wear, but no go. So...I got to ride all the way home, 40 minutes, with poopy pants. Urges when I was pulling into the garage, and I didn't make it to the bathroom....again. Needless to say, I called in sick to work, and have been having a pity party day. What a miserable experience.

Anyways....I'm sorry, but i'll respond a little later, I'm out of spoons.
 
I'm sorry to hear about that :( I have to say you're not the first person i've read having that reaction. I will refuse if that test is ever suggested for me, I am not willing to go through it. I had a prep effect while at the Hospital from a Hydrogen Breath test drink which was not nice and made me more determined never to risk that happening again!
I'd like these damn Drs and techs to have these tests done to themselves, then we'll see how many alternatives they suddenly come up with!!

I had my bone scan yesterday and it went fine, apart from the last scan they did, I had to stand with my elbows on the special plate with head back out of the view and it was so awkward and painful on my shoulder. Took 5 minutes too! I was a bit dissapointed as after a 2 week god awful flare of the pain it really calmed down at the weekend, typical. I did tell myself though that the problem would still show if it was my bones.

I get the results tomorrow at Rheumy which I am surprised and pleased at, no way did I think the results would make it in time and thought I would have to wait until my next Rheumy appointment after that which will probably be 2 months or so.

If something is found I will find it interesting that this will be my second "hit" with nuclear medicine testing, unlike the conventional ones. Of course that only strengthens my case for the FDG-PET since that is much the same, injection of radioactive stuff. Whether the money men will see it that way is another matter!

No cardiac appointment through or MRA so I will get Rheumy to chase. I feel enough time has passed for the appointments to be booked at the very least.

If I am not around much it is because my sleeping patterns are all over the place and I am up and awake at the oddest times, yet still getting through ever more ridiculous amounts of sleep. I had to go to bed at 8pm a few nights, I just could not make the effort to sit downstairs I was so exhausted, but of course that meant in the small hours I was awake. I am going to try and regulate them ie set my alarm for 6pm so I am not sleeping until 9pm like I did last night- I know I was tired from the test and the backwards and forwards but that was just silly to be asleep that long. Better I get up for a few hours and go back if neccessary.

I continue with my efforts to do a little but more with mixed results. I figure mentally I will be better off; since I am going to feel bad anyway, and i'd rather feel bad from doing something than nothing. I am hoping to meet a friend tomorrow for half an hour before I go to my Rheumy appointment, and have comitted to a meeting for Volunteer work next week as the venue has been changed to somewhere much more local (and I think there is a better ratio of toilets to people- the last place was a long drive to a room in a pub so you had 3 ladies toilets for a pub full of patrons and staff, plus us!).
 
Hey Guys,
Hope everyone had a great weekend and hope everyone's tummies behaved.

Tamesis :thumbdown:
I am SO sorry you went thru all that- I totally understand... something similar happened to me too- after my CT scan when you have to drink 4 cups of that chalky white stuff (whatever it was, it was gross). I had to keep going to the bathroom every 5 minutes while I was drinking it, then went for my scan and made it through, but THEN, after I had gotten dressed to go, my bf at the time was waiting for me to drive me home, and we got into his car, and he was like, "you hungry?" and I was, so we decided to go to lunch, and we no longer pulled out of the parking lot, when boom, pooped my pants, and to make it worse, I was wearing shorts, so it got all over his passenger car seat- UGH!!! :yfrown: :frown: At the time he was cool about it and with some carpet cleaner it all came out, but then a month or so later, we were hanging out with friends, and he was like, "Hey, remember the time you pooped in my car?" And the room roared with laughter, and I wanted to die :shifty-t: Yeah... there is a reason we are not dating anymore. :mad2: So, don't feel bad- everyone has got a story similar to this- it has happened to us ALL. I sure hope you find out some answers!!!

Allie- yeah, my Vertigo is chronic. My doctor estimated that I have had it for a long, long time. He said if it was acute, like the kind of Vertigo people get from head trama, or an inner ear infection, or changing meds; etc, then it would have been gone long ago. But the fact that I have been getting steadily dizzier and the vomiting has been going on for over a year 5-6 days per week, he said it would never go away, and we would just have to use meds to get me to feeling as normal and as good as possible by treating the symptoms. :yfrown: No cure is possible. The test he did with the water in my ears showed that I had damage to the vestibule, and my inner ear fluid (that helps your body keep it's center of gravity) is greatly deminished. He doesn't know why, and I don't either, but the test confirmed that it is chronic Verigo and it is here to stay. Yay- so excited (not). Oh well, at least they can treat it, and hopefully with time, the swirling with stop, and I will be off this Tilt-O-Whirl ride that I haven't been able to get off of! :thumleft: Yay for meds! I hope you can get your pain under control and eventually feel better- you poor thing- you have suffered way too long! :frown:

Cat- how are you today? I hope you are better. Sunshine- are you flaring yet, or are you still in limbo? Hope everyone has a nice evening and can get some good sleep and have a better tomorrow. :rosette2:
 
Sunshine, the purse sounds awesome! Can't wait to see pictures of it! And I hope you are able to make it to the concert...it sounds like you will be though, because it is pretty close and your appointment is right before it. Just keep your hopes up!

tamesis...holy cow, what an ordeal. :( The good thing is you are HOME and its OVER! I have never personally not made it (thank god), but my husband actually had that happen to him when we were starting an 8 hour road trip home from VA. He just took his boxers off and threw them away at the gas station we ended up stopping at, and he had to drive the rest of the way with no boxers. >.< I felt so bad for him...he hated that I was in the car with him, but I kept telling him I understood (I was already sick at this point). It can happen to anyone! I hope you are able to gather some spoons!
 
thanks cat!,
thanks for the info on b12,i did mention the b12 levels to him when i went yesturday,he said is the pyschic a doctor?cheek! but noticed on my blood sample forms it said b6 and b12 he was checking for!i really hope shes right if she is..i maybe close to some answers...i really hope so...he took 5-6 tubes of blood so hopefully checking for a few things,and like i said a mri on my back,can crohns effect your back aswell?..just seem to be in constant pain sitting,laying but more walking and standing in one spot. also im having strange anoying pains in both legs on a night time.does anyone else experience this? thanks for all ur advice guys!:) x
 
Tamesis, that sounds just awful. :( I have poo'ed myself once during the course of this illness, thank goodness I was at home at the time but it was still mortifying. I remember crying in the shower afterwards because I was so humiliated. I can't imagine having that experience in public, it must have been so horrible. I keep a "just in case" kit in my car that contains wipes, TP, spare pants and underwear, etc. I also keep spare undies and wipes in my gym bag and at work "just in case." I can't imagine how awful it would be to poo myself in public but it makes me feel a little better to be prepared for the worst. Hang in there, hopefully the test will find something and the awful experience will be have been somewhat worthwhile. I'd send you some of my spoons if I could!

Shan, what a horrible ex to announce that to the whole group! We can only hope that something similar happens to him one day, see how he likes it. This makes me think of my hubby, actually. He never did anything as awful as that, but when I first became ill he was not very understanding or supportive and even admitted he kind of thought I was faking or that I was not as ill as I said I was. Well, then at one point about a year into my illness, hubby started getting horrible LRQ abdominal pains and then the vomiting started. He told me he thought he might have an IBD as well! It turned out to be kidney stones (several small ones and one big one that was impacted in his kidney and ended up needing surgery to be removed - the LRQ pain was apparently deferred pain from the stones). His pain was awful and he vomited a lot. He's got a high pain tolerance but when I took him to the ER he said his pain was about an 8 out of 10. His doctors wanted to take the "wait and see" approach to see if he'd pass the stones on his own, so hubby spent about 6 months dealing with intermittent awful pain and vomiting. They gave him vicodin which didn't touch his pain but did make his head loopy and he couldn't concentrate and acted drunk while on it. So, he suffered quite a bit for quite awhile before they finally surgically removed the stones. He now understands what it's like to deal with awful pain and other symptoms that you can't control and can come out of nowhere and that you have to deal with over a long period of time, and he fully realizes now that I'm not "faking" and that he should be considerate of me when I'm feeling ill. He once told me, he thinks I put a voodoo curse or something like that on him to make him sick so that he wouldn't be such a jerk - of course I didn't, but I'm just glad he recognizes that he was a jerk and has mended his ways! So, long story short, maybe your ex will have a similar experience and realize what a jerk he's been too. (You could always try a voodoo curse, ha ha.)

Stace, what kind of leg pains? Is it like joint pain, or all-over muscle or bone pain? The only thing I can think of that causes leg pain at night would be restless leg syndrome - I don't have it myself but my brother does and a former friend developed it as a side effect of medication. I don't remember what meds she was on unfortunately. But if you're on any meds right now, check the potential side effects and see if RLS is one of them. My understanding is that RLS causes leg pain that can only be relieved if you move your legs (hence the "restless" part) and it usually only happens at night or when you're sleeping/trying to sleep.

Sunshine, I want to see photos of the purse too! How fun, I haven't made a purse in awhile. I have a big pile of projects to work on so I think I'm going to do some sewing this weekend. I saw on a craft website that pillowcases can be turned into really cute aprons, so I found this cute pillowcase at a garage sale for like 50 cents and I'm going to try to make that into an apron. I'm so excited that I get to sew again - with all the recent holiday madness, my sewing room became very messy but I just cleaned it so finally there's no more mess blocking my sewing stuff! :)

Star, that is very quick - good luck tomorrow with the results and the rheumy appointment! Fingers crossed for you! I'm glad to hear that you're getting out of the house a little bit more too, I hope everything goes well with that.

Allie, how are you doing? I usually see your updates on Facebook but our internet at home has been down for a few days (supposedly it's being repaired today) so I've been out of the loop (I'm at work right now and FB is blocked from here). How's the blanket business going? I know you've been crocheting a few other things like ipod socks too - have you ever made anything like leg warmers? I crocheted myself a couple of cute little wrist sweat band things for when I work out. Sometimes I do yoga at home but I'm usually cold for awhile until I get warmed up (we keep our thermostat low to save money) so I was thinking of making myself some leg warmers to wear with my yoga pants. Have you ever made anything like that? I'm not sure how much yarn to buy or anything, I'll probably just wing it like I usually do.

I'm still doing well today. Some co-workers took me to lunch yesterday to a restaurant I've never been to before, and I'm always leary of going to new places where I don't know if the food is safe or not. This was one of those mongolian barbecue places, so you get to pick all your ingredients but then they're kind of fried on this big flat grill thing. I picked a small amount of safe ingredients but still ended up with cramps and loose-ish stools yesterday evening (I rarely have d anymore now that I'm on Asacol, but this poo was borderline d). I seem to be fully recovered from that today though and feel fine now. I hope everybody else is well and is enjoying this lovely weather! 50 degrees and sunny with no snow in Wisconsin, in January!!
 
Still not in a flare yet lol kinda getting nervous hahah It's just my normal "not feeling well" feeling still. My appointment with shands on the 30th probably wont be doing much, she's prob just gonna talk to me and look over everything, but maybe i'll be in a flare by then and she can do some tests... ugh. who knows. This waiting game is just getting ridiculous. waiting to be sick... i don't like that.... and i'm nervous :(
 
Cat, I'm doing alright. :) My business is going well. I figured out as a military spouse I can't make this a full-blown business here in Germany due to German law, so its a hobby that makes a bit of $ on the side. I had so many custom orders in 2011, and only have one left (thats a hat, which is why its not finished yet), so I'm working on my stock for Etsy. Just put up a valentines scarf that I'm excited about. I've never made legwarmers before! Winging it sounds like a good idea, or you could search for a pattern! All my items are winging it for me too. :p I have the hardest time reading other people's patterns...I hate the abbreviations!
 
Oh, Tamesis, what an awful day you had. I am so sorry. Hopefully, that will be the last. Crossing my fingers something comes up in the test that gives you some answers and on the road to feeling better.


Well, I know I said I was going to put my undiagnosis on the back burner for now, but it is hard when you don't feel well. Yesterday, I was in and out of the bathroom several times. Each time there was lots of mucus and a good amount of blood. The blood is the most concerning factor. I know its not normal. Something has to be going on. But, as my GI said, I have done extensive testing and nothing has been found. It's so mind numbing. Where is the blood coming from?!?! Luckily, I only went to the bathroom once today, and the blood was much less. I am hoping yesterday was just one of my random bad days. In exactly one month I'll be off to Disney & the Bahamas, and I am crossing my fingers I will be well enough to enjoy it!
 
Allie, I've never made a hat, sounds challenging! I usually don't work from patterns either although I did buy a book this summer about how to crochet socks - I just found the book when I was cleaning up my sewing room, so I might give socks a try after I attempt the leg warmers.

Sunshine, you poor thing, that certainly doesn't sound like a fun wait. Sometimes it seems like all we do is wait - wait for an appointment, wait for meds to kick in, wait for a test and then wait for the results. It sucks that you have to wait to flare up! :( I was going to suggest maybe you could eat a bunch of popcorn or something to try to kick-start a flare, but that sounds too awful, and I don't want you to have an obstruction or anything. I hope the wait isn't too awful. Have you made any new videos lately? Maybe you could make a video about all the essential things all ill people must have? Heating pad, pets, a laptop (to bring into the bathroom or to use while you're lying down), a big water bottle so you don't have to keep refilling it often, crafts and games to keep your mind occupied, comfy sweatpants, etc.
 
Jill, I must have missed your post when I was writing my previous post. That really sucks that you're still passing blood & mucus. :( I think I suggested this awhile ago, but just wanted to reiterate, it might not be an awful idea to take a photo of your toilet contents after passing blood and email it to your GI if you haven't already. I've seen others on the forum talk about how their GI didn't really believe them or didn't believe the amount of blood involved until they showed their GI a photo of their bloody poos, then they were taken much more seriously. It's gross, but it's worth a shot.

I hope you're able to enjoy your vacation! Fingers crossed that your guts behave themselves and you are able to eat and relax and have some fun. And if worse comes to worse, I've read that Disney has lots of bathrooms and is really nice about letting people in wheelchairs jump to the front of the line... also on some Caribbean islands you can apparently buy meds like Cipro right off the store shelf without a prescription. Just a thought!
 
Jill, you poor thing i'm soooo sorry you had bloody poo :( when I read that, I literally felt sick to my stomach that your doctors can't find anything, but you have BLOOD! that's just awful... and scary. they better find what's going on soon.. you can't be undiagnosed forever.

Cat, yes the waiting game is a familiar place for all of us unfortunately. at least we all have eachother though, because i think i would have gone insane a few months ago without you all!!And I haven't made any new videos recently I've been thinking of a couple new ideas, but was kinda stumped. so thanks for mentioning your idea!! I really LOVE that idea and i think i will make a video about the essential things a sick person needs! what a great idea!! THANK YOU!! I'll mention you in the video :) If any of you guys have any other ideas, just let me know, and I can make more to help others just like us :)

I really want to try to get things moving faster to get sick...
yesterday i had a burger and fries and today i definitely felt the wrath of that evil in my intestines today... rough day! cramps and D... but on the bright side...got a lot of reading done for my online class today though. that was good to get ahead!!
I can't wait to be done with my purse that i'm making so that I can go buy more material to make another one hahah :) i love crafts and i LOVE sewing!!! :)
 
Yes, Cat, you did suggest taking a photo and I did just that yesterday! Unfortunately, the first few times I passed a lot of blood, I was at work and w/o my camera phone. But I took one pic at home, but it had the least amount of blood for the whole day, but it is still visible. I am holding that in my pocket, and hope to get a better pic to send both to my GI.

Good point, Cat! If I am doing so poorly, I'll buy myself some pred in the Bahamas!
 
tam -- !!! <hugs> that stuff is awful. i only had to drink a half dose when i had my CT, and had a 5 hour ride home. not fun. almost didn't make it to the toilet at the rest area (with bright green poo, mind you) and ended up having to spend the night at a motel halfway home because i just couldn't make it home.
i also had a fistulogram? done at one point too, where they did this sticky contrast stuff and it made me go like the dickens. i was in the bathroom at the clinic for like half an hour, with sticky contrast coming out 2 different holes. :thumright:
cat- when i read mongolian barbeque my insides shivered. lol

sunshine - glad you have an appointment. hope you can get in sooner. they do show decent stuff on the tvs in the waiting room.
 
@sunshine, I am to that point too, the "I hope I get sick so the doctors might have a chance" which seems so dimented. Nothing against you personally, because I have similar thoughts. Here's hoping something goes your way soon! Shands is amazing so hopefully they will be able to help you. I hope you will share your final creation with us :)

@tamesis, I had a similar experience at the MRI. Not pleasant. Hopefully you test reveals something.

@Shan, your vertigo prognosis is so interesting. I learn something new everyday. Hopefully they will get you on the right regimen to start feeling better soon.

@Jill I leave in 3 weeks to Hawaii and I like you hope to goodness I am in a decent condition for the vacation. There is nothing worse then spending a lot of money to enjoy yourself only to spend it sick :( Here's to hoping you are on the mend!

@flower, never heard of a fistulogram, is it better at diagnosing fistula?
 
Had my next Rheumy appointment today.

Bone scan was normal, apart from my sinus area (I am stuffed up right now and had a terrible sinus infection a few months back, and with this congestion I am getting the tooth pain again), my right hip and my ankles. No idea why. I have an old ligament injury on each ankle, severe on the right and mild on the left, so I would think that may account for that. However he still had me do some xrays (and no my socks were not clean eeek lol). I am not sure why he is so interested in them. I get the odd pain there, very rarely, and am quite happy myself it's due to the old injuries. But what if they find out something is wrong there that has nothing to do with why I am there now :rof: You know, something that is barely a problem and I don't care about :rof: But they diagnose that!!

He's still keen for me to have the MRA and is going to chase it up. And also see where the PET scan application is at.

Bloods are interesting, my CRP has gone back to normal the last few times, and he said a great bit about "showing it to certain people to see the evidence has always been there", meaning Gastro!! Weird after being raised for years. Got to do the blood test again before next appointment.

But, my c3 and c4 compound blood tests, to measure inflammation, are hugely high. They were quite high in July and even higher December. Normal range for the c3 as an example is 150-400, and mine was 680 in July and 750 December. C4 not quite as dramatic but 200 over the normal top end last time and again increased from the previous.

He still wants to refer me on as he feels he is reaching the end since I have had many of the tests now. He said I can see one of his colleagues or go to the other Hospital, and he understands my feelings about cover-ups at mine since he said he thought I would prefer the latter. That or I can think about treatment, they have drugs they can use to treat the inflammation without knowing exactly what causes it.

He's referred me to Endocrinologist (end Feb) as another way of looking at my case, and apparently he is probably going to get told off for that but didn't seem worried! Apparently when he consulted them last time they asked some questions, some of which were answered and some were left, so a way of tying up loose ends.

I see him again in 6 weeks, Reception were great, he was fully booked but they did an over-ride and booked me in for 23/2/12 at the beginning of the clinic.

Had another letter from complaints service, response pushed back again to 23rd Jan. I appreciate their throughness but I really want an answer lol!!
 
I just got back from the rheumy...it was a wash. I went there told him my plight only for him to say "I am pretty sure its not a rheumotogical issue but I can run the test, but really you need to solve it with your GI doctor". HHHmmm, thanks I have been trying that for months and she doesn't listen either!

No additional test, no additional hope, but the same old crappy (no pun intended) problems. I guess I am just frustrated because everytime I see a doctor I feel like I am getting the "it can't be that bad" treatment. I guess I wait until monday so my GI doctor can tell me I have IBS again...oh the irony! I would just like a real viable answer.

Ok, I am done with my rant. I just had to vent... I am sure you all know how that goes.
 
Sorry to hear that space :(

I finally got my cardio appointment for 2 weeks time, but it will be normal like everything else, and I am not at all happy about what the test involves, but I have to do it.

Not happy with my current options either even though I understand Rheumy is getting to the point where he can do no more. Unless I suddenly get a private income or a partner to fincially support me, I am not going to have anything to make the decision easier.

At some point this year (I am 6 months overdue now) my disability is going to be re-assessed under the new rules and I will be failed. Which means I have to appeal, currently taking 12-18 months at least so many are being wrongly failed. That means a drastic drop in an already poor income. I have been through an appeal before and it is hugely stressful. Can I also cope with travelling and being seen at a new Hospital, more tests and the endless going over everything again.

Or do I take the treatment without a dx and end up too sick for unemployment and not sick enough (or rather not adequate grounds) for disability. Or stuck in some kind of loop, like the treatment works for a while so I get unemployment, but then I get sick again and they start re-investigating. But no dx means much much harder to get disability again and too sick for unemployment.

The new rules for disability are much stricter and I do not think without an adequate dx I stand a chance. And as mentioned the appeals system is overwhelmed, so a long time on a reduced income.

I just don't know what to do. I wish i could stick up two fingers to the benefits people and tell them where to shove it but I can't.

:stinks:

And to round things off I found the perfect thing to do for my 25th Birthday... but since I am sick I can't. If I go ahead and get tickets I will end up out of pocket which is what has happened several times in the last few years, I get tickets thinking I will be dx'ed/better but it never works out. I really could cry it is such a good opportunity that I will miss :(
 
Formal diagnosis

For all who may be interested, I have spoken to my GP today, and we have an appt together tomorrow to discuss, but she informed me that she spoke to my neuro doctor, and that my vertigo problems have just been a major symptom of what I am really diagnosed with. It's called Meniere's Disease. I have tried to insert the link but couldn't so here is some information. (hope I don't bore anyone :boring:)

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A.D.A.M. Medical Encyclopedia. Atlanta (GA): A.D.A.M.; 2011.

A.D.A.M. Medical Encyclopedia.

Meniere’s disease
Hydrops; Endolymphatic hydrops
Last reviewed: August 31, 2011.

Meniere's disease is an inner ear disorder that affects balance and hearing.

See also: Vertigo

Causes, incidence, and risk factors
The inner ear contains fluid-filled tubes called semicircular canals, or labyrinths. These canals, along with a nerve in your skull, help interpret your body's position and maintain your balance.

The exact cause of Meniere's disease is unknown. It may occur when the pressure of the fluid in part of the inner ear gets too high.

In some cases, Meniere's disease may be related to:

Head injury

Middle or inner ear infection

Other risk factors include:

Allergies

Alcohol use

Family history

Fatigue

Recent viral illness

Respiratory infection

Smoking

Stress

Use of certain medications

Between 50,000 and 100,000 people a year develop Meniere's disease.

Symptoms
Attacks or episodes of Meniere's disease often start without warning. They may occur daily, or as rarely as once a year. The severity of each episode can vary.

Meniere's disease usually has four main symptoms:

Drop in hearing

Pressure in the ear

Ringing or roaring in the affected ear

Vertigo

Severevertigo or dizziness is the symptom that causes the most problems. People who have vertigo feel as though they are spinning or moving, or that the world is spinning around them.

Severe nausea, vomiting, and sweating often occur.

Symptoms get worse with sudden movement.

Often, the person will need to lie down.

The dizziness and feeling of being off-balance will last from about 20 minutes to a few hours.

Hearing loss may occur. Usually the hearing loss is only in one ear, but it may affect both ears.

A person's hearing tends to recover between attacks but gets worse over time

Low frequency hearing is lost first

Roaring or ringing in the ear (tinnitus), as well as a sense of pressure in the ear are common

Other symptoms include:

Diarrhea

Headaches

Pain or discomfort in the abdomen

Nausea and vomiting

Uncontrollable eye movements

Signs and tests
A brain and nervous system (neurological) examination may show problems with hearing, balance, or eye movement.

A hearing test or audiogram will show the hearing loss that occurs with Meniere's. Hearing may be near normal after an attack.

A procedure called caloric stimulation tests eye reflexes by warming and cooling the inner ear with water. Abnormal results on this test can be a sign of Meniere's disease.

The following tests may also be done to distinguish Meniere's disease from other causes of vertigo:

Electrocochleography (ECOG)

Electronystagmography (ENG) or videonystagmography (VNG)

Head MRI scan

Treatment
There is no known cure for Meniere's disease. However, lifestyle changes and some treatments can often help relieve symptoms.

Your doctor may suggest ways to decrease the amount of water or fluid in your body. This can often help control symptoms.

Water pills (diuretics) may help relieve fluid pressure in the inner ear

A low-salt diet may also help (See: Sodium in diet)

Other changes that may help with the symptoms and keep you safe include:

Avoid sudden movements, which may worsen symptoms. You may need help walking when you lose balance during attacks.

Avoid bright lights, TV, and reading during attacks, because they may make symptoms worse. Rest during severe episodes, and slowly increase your activity.

Avoid activities such as driving, operating heavy machinery, and climbing until 1 week after your symptoms disappear. A sudden dizzy spell during these activities can be dangerous.

Gradually resume your activity after episodes.

Keep still and rest when you have symptoms.

Symptoms of Meniere's disease can cause stress. Make healthy lifestyle choices to help you cope:

Eat a well-balanced, healthy diet. Don't overeat.

Exercise regularly, if possible.

Get enough sleep.

Learn and practice relaxation techniques, such as guided imagery, progressive muscle relaxation, yoga, tai chi, or meditation.

Limit caffeine and alcohol.

Your health care provider may prescribe medicines for nausea and vomiting. Symptoms such as dizziness and vertigo may respond to sedative/hypnotics and benzodiazepines such as diazepam (Valium).

You may need ear surgery if your symptoms are severe and do not respond to other treatments.

Cutting the vestibular nerve with a surgical procedure helps control vertigo. It does not damage hearing.

Placing an antibiotic called gentamicin directly into the middle ear can help control vertigo.

Removing part of the inner ear with a procedure called labyrinthectomy helps with vertigo, but it causes complete hearing loss.

Hearing aids may be needed for severe hearing loss.

Expectations (prognosis)
The outcome varies. Meniere's disease can often be controlled with treatment.

The condition may get better on its own. However, Meniere's may be chronic or disabling.

Complications
Inability to walk or function due to uncontrollable vertigo

Hearing loss on the affected side

Calling your health care provider
Call for an appointment with your health care provider if symptoms of Meniere's disease, such as hearing loss, ringing in the ears, or dizziness, occur or worsen.

Prevention
There is no known prevention for Meniere's disease, but prompt treatment of ear infection and other related disorders may be helpful.

References
Crane BT, Schessel DA, Nedzelski J, Minor LB. Peripheral vestibular disorders. In: Cummings CW, Flint PW, Haughey BH, et al, eds. Otolaryngology: Head & Neck Surgery. 5th ed. Philadelphia, Pa: Mosby Elsevier;2010:chap 165.
Post RE, Dickerson LM. Dizziness: a diagnostic approach. Am Fam Physician. 2010;82:361-369.
Review Date: 8/31/2011.

Reviewed by: Seth Schwartz, MD, MPH, Otolaryngologist, Virginia Mason Medical Center, Seattle, Washington. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.


A.D.A.M., Disclaimer

Copyright © 2011, A.D.A.M., Inc.

Causes, incidence, and risk factors
Symptoms
Signs and tests
Treatment
Expectations (prognosis)
Complications
Calling your health care provider
Prevention
References
What works?
Intratympanic gentamicin for Ménière's disease or syndrome Intratympanic gentamicin for Ménière's disease or syndrome Ménière's disease is characterised by three major symptoms: rotational dizziness (vertigo), hearing loss and ringing in the ears (tinnitus), sometimes accompanied by aural fullness. Intratympanic gentamicin is a relatively new therapy with promising results. Gentamicin is an antibiotic which damages the inner ear and the balance organ when it is applied behind the ear drum. This treatment may decrease the spells of vertigo in Ménière's disease. In this review we assess the effectiveness of this kind of treatment for Ménière's disease. Two randomised controlled trials, including a total of 50 patients, were identified which fulfilled the review inclusion criteria. Both of these found a beneficial effect of intratympanic gentamicin therapy for Ménière's disease, although the size of the effect differed between the two trials. Based on these findings, we conclude that intratympanic gentamicin may be an effective treatment for vertigo complaints in Ménière's disease, but it carries a risk of increasing hearing loss. Further research is needed to clarify the effect of intratympanic gentamicin on vertigo in Ménière's disease and the risk of inducing or increasing hearing loss. See all (7)...

FiguresDrugs of interest
Diazepam Diazepam is used to relieve anxiety, muscle spasms, and seizures and to control agitation caused by alcohol withdrawal. Digoxin Oral Digoxin is used to treat heart failure and abnormal heart rhythms (arrhythmias). It helps the heart work better and it helps control your heart rate. Read MoreDizziness Hearing loss Tinnitus Ear infection - acute Head injury Respiratory Stress and anxiety Fatigue Allergies Alcohol use and safe drinking
Meniere's DiseaseMedlinePlus.gov links to free, reliable, up-to-date health information from the National Institutes of Health (NIH) and other trusted health organizations.
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I am off for a few days- so everyone have a great weekend!! :ybiggrin:
 
Shan, thanks for the info! I've never heard of Meniere's disease. So, I skimmed the info you posted but I didn't see anything there about remission (I did see the part about removing part of the inner ear to help ease the vertigo, but it says that causes complete hearing loss - eek!). I'm glad you have a proper name for what's causing the vertigo and hopefully this diagnosis can help you get some good treatment and symptom relief!

Star, do you know what treatments you'd be offered? Is it the same immuno-suppresant trial that you've mentioned previously, or are they going to give you a few options of treatments? As I'm sure I've said before, me trying meds is the only reason I'm in remission today AND the only reason that both my GI and GP now believe it is an IBD (I wouldn't have responded to pred, Entocort and Asacol if this weren't an IBD). So it's not all bad, definitely worth a try - best case scenario, the meds will work great and you'll get your life back. Worst case scenario, they won't work and you'll figure something else out. My experience is, it's definitely worth at least giving meds a try.

Space, so did your rheumy actually run any tests? Bloodwork at least? I hope your vacation goes well! Hawaii sounds so nice right about now, we just got a bunch of snow yesterday (it was literally 55 degrees and sunny here on Wednesday, and on Thursday it was 20 degrees and snowed all day - I want it to be 55 and sunny again!).

Sunshine, the burger part sounds painful to me but oddly enough french fries are usually a safe food for me. The grease sometimes upsets me but it seems that potatoes in any form, as long as the skin is off, are quite safe. When I first got sick my sodium level was really low and a doctor told me to eat potato chips. So I discovered early on that chips don't bother me. Anyway, I'm rambling. I hope your purse making project is going well! Are you hand-sewing it or using a sewing machine?

I'm doing okay today. Guts are a little grumbly but I did shovel snow this morning and that didn't make things worse, so I'm taking that as a sign that I'll be okay when I hit the gym later today. (Shoveling snow is surprisingly hard work and very intense exercise!) Yesterday we went from having green grass to having about 6 inches of snow, yuck! Winter has finally started here. This weekend I'll be sewing, crocheting, reading, watching movies, drinking hot chocolate, etc. I'm going out for a bit on Saturday because I had already made plans with my parents, but other than that I'm staying in and staying warm and cozy! I hope everybody else has a good weekend and that it's not snowing where you are.
 
Shan, I'm glad you have a diagnosis on why you have Vertigo!

Star, I agree with Cat, I would do the trial of the meds. My med trial is also why I have a diagnosis, even though my Rheumy said before we did the pred trial that it wouldn't help me get towards a diagnosis at all (I think he just thought the pred wasn't going to work!). At this point, I think it would be better to get to feeling better than try and go through this whole process over again.

Cat, it snowed here today too! It didn't stick though. :( This had been such a mild winter here in Germany...no snow, just rain. But it looks like that will change this week.

I am now on 2.5mg of pred...and I am definitively getting worse. Appointment is in a week, but since the plaq will take so long to kick in, I'm not really excited. Stuart is hoping they will put me on more pred, but I doubt it. Also hoping for some better pain meds. I'm having a hard time doing anything lately.

We have a four day weekend because of MLK, and today we went to IKEA and got stuff to improve my craft room and other little random stuff in the house. :) But it took all my energy for the day!
 
Allie, it snowed here a few times too but none of that stuck until yesterday's big snowstorm. It was feeling like springtime up until yesterday! Now it's definitely winter, the low temp tonight is 4 degrees fahrenheit. Brrr! Oh well, it had to happen eventually. It was such an atypical winter up until yesterday - it's unheard of to have green grass and temps in the 50s in the 2nd week of January in Wisconsin. It was weird weather but nice while it lasted! Now back to our regularly scheduled winter, ha ha.

How long are you on 2.5 mg of pred for? I wish it were working better or that you were on a higher dose for longer. Clearly you need something more since you're getting so much worse again upon tapering. I hope your rheumy can put you on more pred or better pain meds or something else that works. This will be a new rheumy, right? I hope he/she is good! Is this at the army hospital that's several hours away?
 
it's really hard for me to eat and not feel good everyday and deal with the pain and everything but not be in a flare... :'( If I'm going to have pain, at least it could be a flare so I could get these tests done and put an end to this. but this is just torture everyday it feels like.... :'(

What do you think I should do???
Any tips on how to get in a flare??? :'( sounds awful i know... but the pain I'm getting everyday from severe cramping and everything is just awful, and not being in a flare I feel like I'm just wasting time. Sorry for such a low and "down" post, but I just don't know what to do... :'(
 
Hey everyone. Every time I feel like I have the brain capacity to post on here, Claire starts pushing keys for me, and it just doesn't happen! LOL.

It's been a busy week here for me...I saw my GP on Wednesday, and it was truly a very encouraging appt. She got the biopsy results back from my Colonoscopy, same as always.....chronic inflammation in the sub-mucosa. Which, she said can occur just from a simple bowel bug. Then, she started on about IBS, dietary changes, etc. I said ok, however, if we're going call this IBS, why did I respond to Prednisone after a 6 month flare? AND, why do I have CHRONIC inflammation, not acute? She said I shouldn't have responded to the pred., (She's a new doctor since my first flare...I moved), and that yes, with seeing the ulcers with the first scope, and inflammation in all three of them, and family history, she thinks it's time to agree that I have an IBD, and treat accordingly. She wants me to ask my GI for a script for Asacol or Pentasa, and if my GI won't give it to me, she said she will! :) I asked for a Rheumy, and she said because my CRP has always been "normal" (Last was 7.9, which, according to some research anything over 7 can indicate inflammation?), he would probably refuse the referral. BUT, she did blood work...ANA, Neutrophil Cytoplasmic Ab, and Rheumatic factor. The first two aren't back yet, but my Rheumatic factor was elevated! Which, yes, it can be in some "normal" people, BUT, with my symptoms, maybe they'll take it seriously! So, i'm slightly excited, feeling like I may FINALLY be getting somewhere!

Allie - I'm so sorry that you are coming off the pred, and feeling so horrible. I can't imagine having the pain that you have, all day every day. I really hope your appointment next week will be positive, with some better pain management, and i'm with your hubby...Hopefully another dose of Pred until the plaq. kicks in!!

Sunshine - (hug) I hope you flare soon. Maybe coffee? Nuts? Popcorn? If you don't have strictures popcorn and nuts shouldn't get stuck, but might irritate it just enough? I'm sorry you're suffering. :(

Cat - I'm jealous of the snow!! We haven't even had a lick of it, all year. It was supposed to be this awful winter, and it's been ridiculously mild. I'm glad the snow shoveling wasn't too bad, enjoy your time at the gym! :)

Shan - Thanks for the info on Meneire's! Are you taking Circ? How are you feeling these days, have things stopped spinning? Hopefully they can get you on the right med doses to keep things on the back-burner for you. :) My Grandma-in-law has meneires, and I know when she outdoes herself things get really bad for her....So take it easy!

Star - That really sucks about the disability and such. Sometimes, red tape sucks freaking bologna. It really makes me mad sometimes that people can't just understand how sick we are, without needing concrete proof! And it's the rotten people in the world who DO fake it, that makes it so hard for those of use without a concrete diagnosis. :(

I hope I got everyone!!! Wishing for Flares for Sunshine, and happy bowels for the rest of you!! I was doing some research on different Autoimmune diseases, WOW, it's amazing how many things out there can affect your bowels!!!! :( Stupid bowels.
 
Tamesis, that's great that you get to try Asacol or Pentasa! A few months back I had asked my GI to try Pentasa, and he said okay but he decided Asacol would be a better fit for me so I've been on that one for a little while now, and it's been working pretty well. I very rarely have d nowadays, although if I eat the wrong thing or get too stressed I will still get cramps & nausea and the ocassional abdo pain. I'm not sure why that is - I'm supposedly in remission but I'm not always sure if I believe that. Anyway, both of those meds are really similar as you probably know, they are essentially the same thing but work on different areas. Pentasa works primarily on the small intestine, and Asacol works on the terminal ileum and colon. My GI feels I likely have either Crohn's or microscopic colitis, and if I do have Crohn's it's probably in the TI (my main pain spot is in the LRQ, about where the TI is located). So based on that presumption, Asacol would work on either TI Crohn's or microscopic colitis - Pentasa doesn't work on the colon so it wouldn't do a thing for microscopic colitis, at least that's my understanding of it.

As for CRP, it sounds like yours is probably still right around the "normal" range unfortunately. I've read a few things about CRP on the forum, and it seems to me that each doctor sets their own threshold as to what is the "normal" range and what isn't. My own doctors even differ on this - my GI says normal is anything between 0 and 10, whereas my GP says normal is anything between 0 and 8. My CRP is usually normal but at least once it was high, I know that about a year ago it was 17. So slightly high, but apparently I wasn't in a flare - that's another problem with CRP, it can be raised due to ANY inflammation. So it wasn't necessarily my guts causing the rise in CRP - I was having a lot of hip pain at the time (which was misdiagnosed as arthritis and later re-diagnosed as bursitis), so it could have been my hip that was causing my CRP to be a little bit elevated. Oh, and if you didn't know this already - something like 10% of Crohnies will never have a raised CRP, even in a horrible flare. So it's possible that you're one of those if your CRP is typically "normal". Confusing, I know! Long story short, a slightly raised CRP isn't necessarily grounds for worry, and CRP isn't necessarily a very accurate judge of whether or not you actually have IBD.

Sunshine, I'm afraid to tell you this because it's such a horrible thing to eat - but, my "last meal" before my first ever flare was this concoction of cabbage, raw veggies, and spicy peanut sauce that had chunky bits of peanuts in it. I know, it sounds like the most painful thing ever! But I didn't know because I had never flared before and I had no idea that there was this illness lurking in me just waiting to come out. I don't know if that meal actually triggered my flare or if I just happened to eat something so painful right before something else like a virus triggered it, or what. But I was in a world of horribleness when that flare hit the next day (I've heard that the first flare is oftentimes the worst one, and so far anyway that's true for me!). I got that meal at a restaurant, it was some sort of Indonesian salad, it might have been called Indonesian house salad? Not that I'm advocating that you eat it, because it was probably the worst thing a (probable-)Crohnie can eat. I don't think there was one safe ingredient in the whole thing. If you really want to flare, I would imagine that would be a big shove in the right direction. I'm cringing just thinking about it though! Maybe just try eating some veggies or chunky peanut butter on their own before daring to combine them?
 
Thanks ladies for the advice. At the moment I am leaning towards trying the new Hospital but I may well change my mind. It's difficult trying to find someone in my shoes, single, living in a poor family and dependent on disability, heck i don't even have access to a car through a friend or family member who can drive me around when needed or for the occasional Hospital appointment! I just have to struggle on the whole time alone with money and getting around etc.

As I said before it would be alot easier if I had a partner to financially support me or a private income...

But that ain't going to happen lol. :rof:

And when it comes to discussing things like future problems ie having/not having kids without a dx I just get blank looks. Since most have kids since they want them without thinking about what is best for the child. A child having a mother like me would not be a good idea but I just can't find anyone who understands. I would never judge someone for their personal decisons but how can I have kids when a) I risk passing on my problems or b) i'll end up in this god awful state again but as a mother, and having your kid worry and be upset about you at a young age is just not right. That is not what childhood should be about. If I have no dx I have no way of knowing what the odds of a or b happening are and life has not taught me to gamble in the belief things will come right in the end!

I am 25 soon and I need to think on these things as part of my decision you know? But trying to find someone in my life situation is proving impossible. 25 is pretty old to be single for starters!
 
Star, if the medication works then surely you could get a job and look for a boyfriend once you are feeling better? I was only barely able to work before I was on any meds, I was sick all the time, very depressed, and every single minute was a struggle to get through. Then along came my new best friends pred, Entocort and Asacol, and now my days are SO much better. Things aren't the struggle and the incredible exhausting challenge and the neverending fight that they once were. I know it's hard to be optimistic when this illness and horribleness is all you've known for so long. I don't have answers for you - I can't tell you that if you have a kid, you won't flare up a year or two or five down the road. I'm still on the fence about having kids - honestly, who wouldn't be after having an illness like this? I don't want to pass along this illness and would have to just hope extra hard that if I have a kid that they're healthy. If I flared after having a kid, I'd just have to have hubby help out more and do what I could. I know things look very bleak when you're so sick all the time with no end in sight. But, and this is just my own personal experience, meds and the remission that came about because of them have made my future seem a whole lot brighter than it did when I was really ill. I don't know how long my remission will last but now that I know remission is possible and pretty great, I have a lot more hope. I might have a kid and they might have Crohn's too - I'll deal with that if and when it happens. I know there's lots of "what ifs" and I am definitely guilty of being a chronic worry-wart and I'm generally rather pessimistic, but even so I have hope for the future. And I probably wouldn't have that if it weren't for meds and remission. This is way too long, but I just wanted to let you know that I've been in your shoes - there is a light at the end of the tunnel! Please try not to worry too much (easier said than done). Remission IS possible and you're still very young - I'm 32 and still not totally decided on whether or not I want a kid! You've got lots of time and I've known people way older than you who are marrying and having kids later in life. For now though, focus on you and getting better, and after that everything else will fall into place.
 
Cat, I will be on 2.5mg for a week. My appt is just with my GP, not a rheumy. :( But I'm hoping since I have a DX that they will just start treatment through my GP since getting specialized healthcare here is so hard. A rheumy would either be a 3.5 hour drive one way or a German national that might not even speak English. We shall see!

Thanks Tamesis! I'm so glad you are on the right track with your GP! It seems like anyone who responds well to pred for their illness gets better help than before...o_O

Star, I completely agree with you on the kids thing...I have gotten the baby question before too, and I am not even thinking about kids right now. My body cannot support a kid right now...wayyy too weak. I'm also afraid of having a child in the fact that this is hereditary. :( We still plan on having kids in the long run, but not right now.
 
Yeah, Cat and Tamesis, thanks for the advice on what to eat! haha I know it sounds AWFUL..COMPLETELY AWFUL to WANT to get in a flare.. but it's not that, it's just that I want this over and done with asap since everyday i'm in my "normal" amount of pain, but I think that maybe the pred is still lingering in my system because my acne hasn't gone away yet either from it :( which I did just get some Proactiv to try to help that, but yeah I have a feeling the flare might happen in a month or two maybe.. or maybe when I get my next period, because usually my periods have brought on my flares... idk if that's just a coincidence or if that's something else that could be an issue, still have to get checked for endometriosis. but yeah, hopefully Shands will have some advice to offer me when I go to that new doctor in Gainesville on the 30th. Thanks again you guys for the advice!!
 
Yes Cat that is indeed possible. That though is assuming the treatment works, works well and lasts. The trouble is I had treatment before which half worked for a while, so I was able to do stuff, and then it came crashing down when it stopped. Now I realise the drugs were totally wrong for an inflammatory disease but my condition was just tummy issues then and it did genuinely work a bit for a while.

That in some ways was harder than being sick all the time since I got a glimpse of a normal life only to have it taken away again. I can vividly remember telling someone Gastro had sorted me out with just one pill a day.

I don't know until I try how well treatment will work and that corresponds to what I may be able to do- change from disability to unemployment safely etc. I have to decide whether I am willing to take that risk- I rely on disability for an income and don't have work/private means/partner/family to fall back on for money.

There are already people in the UK with the welfare changes who are too sick for unemployment and not sick enough for disability. I am already facing a long appeal process when my disability is denied in the near future.

Arrrgh I don't know what to do, I have some thinking to do that's for sure. Who knows, maybe the MRA will turn something up, still waiting for that appointment though but Rheumy said he would get his secretary to chase.
 

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