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@stacenrach- I never noticeably passed my capsule either. I wasn't looking very hard, though. There will be definite warning signs if it gets stuck.
 
The one I took is called Osmoprep. I don't know if it's still available. I have heard it got yanked off the market, but I don't know. Even when I took it (March 2010), there were warnings about kidney damage and stuff. My GI said that they can't use it with old people. It's a privilege for the young. :) It doesn't seem to be widely used. The only down side is that you have to consume copious amounts of clear liquid with it. I chose white grape juice, which I haven't been able to stomach since.
 
Gotcha. Well, one packet down. As soon as I smelt it I started gagging. BLAH! And I know this is one of the easiest preps.....
 
:) Thanks. I tend to agree!
So I timed it...8 minutes from drinking the prep to my first round. I think i'm unlucky...
 
Whoah!! That is some seriously quick transit time.

When is your scope? Make sure you are drinking tons. If it's not til tomorrow, you could get really dehydrated. I'm sure you know that...
 
Tamesis, I just got a Kindle Fire and I love it for the longer bathroom trips! I keep a Sudoku book and a pen in the bathroom at all times just in case, and I used to bring my Nintendo DS in there with me but now I bring the Kindle. Iphone sounds fun too, I'm sure you can get a lot of fun games and apps to keep you occupied. That's too bad though that you didn't get it in time for prep. :( Do you have anything else to keep you occupied? A laptop or a portable DVD player or even just a good book (or a Sudoku book)? Good luck tomorrow, I hope the prep is worth it and they find something they can treat! Keep us posted and I've got my fingers crossed for you!

Oh, and I've never done pico salax prep. I've done the Gatorade & Miralax prep twice, and both times I got horribly dehydrated. I'm not sure if it was just me, as I do tend to dehydrate very easily. But both times I ended up on IV fluids and it was pretty miserable. My hands & arms start twitching and tingling when I get dehydrated which is just freaky. So anyway, I wouldn't really recommend Gatorade & Miralax as a prep! It was easy to get down, although I did vomit the first time I did that prep (the second time, I just had to do 1/2 prep plus I took lots of Zofran, so I kept it all down that time). But the dehydration is just not worth it. I'm not looking forward to whenever the next time I do prep, as one of the nurses last time strongly suggested I just do the Go Lightly next time - I've heard such horror stories of how awful it is and how hard it is to keep down, I'd almost rather just do the Miralax again and deal with the dehydration!

Stace, welcome to the forum and the club. I'm in agreement with the others - the pill cam is very easy to miss when it comes out. I never found mine and I was kind of looking (I'd look at each poo but didn't pick through it). Mine definitely passed at some point though. And like the others have said, if it gets stuck, you'll know it as you'll get obstruction type symptoms - incredible pain, projectile vomiting, etc. IF that does happen, get to the ER immediately. But it probably won't happen. The capsule typically only gets stuck if there's something like a stricture preventing it from moving, and with all the tests you've had, if there was a stricture they would've most likely found it already. Long story short, try not to worry! I know that's sometimes easier said than done. Good luck and I hope the results find something.

May, I've heard of a pill-only prep but I didn't know about the potential kidney damage. Sounds kind of scary! But still, if it's palatable and not vomit-inducing and not overly dehydrating, I still may ask about it if/when I do have to do prep again.

Allie, I'm glad to hear you have a good GP - wish you could bring her with you back to Germany! How much longer are you guys going to be living in Germany before you come back to the US for good? At least it sounds like there's a plan in place, either get diagnosed in Germany or if not then come back here and try to get diagnosed. Phew! Between two continents you'd think somebody could figure something out! And that's interesting about how your GP thinks it could be both Lupus AND Crohn's! A scary thought for sure, but at least both can be treated with pred (and now we know pred works for you). I do recall reading somewhere that when you have one autoimmune illness, you're more likely than the general population to develop another AI illness. I know a girl who has something like 6 AI illnesses, she's got UC and RA and a bunch of other stuff and fibro too. It would suck having an illness on top of an illness, but then again it'd probably be easier to get approved for disability if you wanted to go that route.

My guts aren't super pleased with me today. I was starving yesterday and after lunch I still wanted to eat more (never a good idea in the first place) so I had some Cheetos even though I know they're corn-based and corn products are not my friend. So today things are a bit grumbly in the tumbly, and of course they served a big holiday lunch at work today and I could barely stomach any of it. I lost weight over Thanksgiving and I have a feeling I'll be losing weight again over xmas! And you guys are the only ones who understand - if I try complaining to friends or co-workers, they're like, you're crazy, we'd love to lose weight over the holidays! I'm like, okay, want to trade? You can deal with the nausea and pain and diarrhea and not eat what you want and be kind of afraid of food and lose 5 lbs, and I'll eat what I want and not worry about it and feel great and gain 5 pounds, deal? ;)

Sometimes I wonder if there's a little something else going on. Either I'm not 100% in remission or maybe I've got IBS too if that's a real thing, I don't know. Even in remission I have to avoid all my trigger foods or I always end up paying for it. Stress is the same, too much of it can make my guts upset for days. But otherwise, as long as I eat only safe foods and am pretty relaxed, I feel great. I don't know. I see other people's posts about being in remission and most seem to say they can eat whatever they want including things that were trigger foods when they weren't in remission. My GI says I've got IBD although it's not official and he doesn't know which type of IBD, and he says I'm in remission and I do feel like I am in remission most of the time. I just wish I didn't have to stick to low-res bland foods 24/7, you know? And when I do stick to those bland foods, I feel wonderful - so wonderful that I get lazy with my diet because I feel so good that I feel like I could eat anything. And then I feel like crap again for a few days and go back to the low-res diet and the cycle repeats itself. I don't know, I just wish remission meant feeling 100% like my old self again and able to eat all the foods I desperately miss without consequences. I guess that's a little too much to ask for though.
 
Tamesis, good luck with the prep! I've been given the pill prep as well, but I still had to drink a ton of "golytely" to keep hydrated. I added a bunch of store brand lemonade mix to it to make it somewhat bearable. I also started going just a few minutes after I started drinking the prep...yuck! I also had to take a bunch of anti-nausea meds to keep from throwing it back up. :( To keep a little more comfortable I would consume as much as you can that YOU like...jello (not purple or red) is my go-to thing during prep. Make sure you go through the entire list of things you can have and take advantage of it! I hate being hungry on top of doing the prep...

Cat, I don't think she thinks its both...one or the other. She believes all my GI tests were just too soon or my pill cam was done when I wasn't sick enough for it to show up. But she believes I don't need to be seeing a GI right now, just a rheumy (since Rheumys can help Crohns or Lupus). I think I have plenty of evidence for a lupus diagnosis...I have more than enough of the criteria, AND I respond to the medication. If its crohns and not lupus, it is treated with the same meds. So the misdiagnosis is BETTER than being undiagnosed. I am going to explain that to my Rheumy, ESPECIALLY if my CT scan showed bowel inflammation! I'm also going to see if I can get a small amount of percocet for the breakthrough pain...tramadol just isn't doing it anymore...
 
Well, my daughter seems to think this is fun, every time I eat Jello she's at my feet begging like a dog for some. (She's 1) Cute, but relatively annoying....I wish i'd gotten daycare today, I really just want her to leave me alone!!

Two and a half hours in and i'm already clear....Do I really have to do the second round of prep?!?!
 
Allie, my bad, I must have read your other post wrong. In that case, I'm glad she thinks it's one or the other, not both! Having both sounds overwhelming. I hope you can find some doctor, any doctor, who can figure out which one it is! I hope that CT finds some evidence of one or the other. Got my fingers crossed for you for that appointment on Tuesday (and I would love to see how your rheumy responds if your dad brings the hippocratic oath to this appointment!). And your hubby arrives on Friday, right? So at least you've got that to look forward to in the meantime. Hang in there! Sending you a big hug!

Tamesis, how's the prep going? I hope it's not too miserable!
 
Tamesis, I think I was writing my response as you posted yours. As for going clear, I've always been told that once I start going clear that I can stop the prep (continue drinking clear liquids so that you don't dehydrate, of course). You might want to call your doc to make sure, but if you're going clear now then it should be fine to stop.
 
Dangitt, i thought I was clear, then had a little bit of sediment. Second packet not due for another 4 hours though!!! Oh well, rather do it right then have to do it again. Scope is at 1030 tomorrow morning....It's 2pm here now. (Pacific time)
 
I'm surprised you had to do prep so early! I've always had to wait to start that stuff until late in the afternoon. I would not want to sit on the toilet for that long! You will be running into the bathroom a lot, right up until the test starts tomorrow morning...
 
Yikes, I'm with Allie, I've always had to start prep the evening before. It's been awhile, but I think it was something like between 4 and 6 PM was when they've had me start prep. I've never had to do it in two batches, either. Just drank it all in one go, went to the bathroom a zillion times, got dehydrated, went to urgent care and got IV fluids, went home and went to bed. Maybe I'd get less dehydrated if I split it up into two batches? I'll have to ask about that too if/when I do prep again.
 
Mine was in two batches. I started taking the first set at 5pm and the rest i had to begin at 8. My scope was first thing the next morning. Right when I started taking the second set things got moving. Ahhhh memories...
 
Hmmm...Yeah, I had to do the first packet at 11am, second packet at 6pm. Honestly though, it's been the best prep ever so far....I've only gone 4 times, and I think i'm done until the next package, the urges seem to be gone!! Probably because i've been mostly clear fluids for over a week though.
 
Over a week on mostly clear fluids! You poor thing! Even with a grumpy tummy, that makes me hungry just thinking about it. Was that doctor's orders or something you did on your own?
 
Just on my own, Just felt so rotten, it helps me a little.....I was eating soda crackers, and the past two days had one evening meal, but that's about it. :(
 
I've done that before on my own. I felt so much better I didn't care about the hunger! I still had the liquid D 8 - 14 times a day, but my pain went down a lot. The most solid thing I would eat was jello and applesauce...and I loved it! I only stopped because I was having a test done and I didn't want the damage to heal to the point it wouldn't be seen.
 
my prep was pills around 3pm, then prep (miralax) a couple hours later with the option of doing prep one more time if necessary. so glad it wasn't. I have an upper endoscopy Thursday. whee! I'm so glad though, that the prep for this is so easy.
 
Yeah, "don't eat after x:00" is worlds better than "don't eat and here, drink this so you have explosive, napalm-like diarrhea for hours." Hope your scopes go well, to all who are having them.
 
thanks everyone.xxx

hi thanku all fopr your replies. you all seem lovely,and its such a shmae everyone here is suffering with bad symptoms and no answers!i have been continuelly messed around and passed for pillar to post!they even put me in for a mental assesment!!!! which i passed with flying colurs. even the mental health assesor said u can see its medical as i was suppporting 8-9 month pregnant looking belly after eating a smalll ham bun for my dinner. so jusrt waiting around in limbo,my consultants are even thinking it may be a new illness or disease with me? i think there clutching at straws 2bh!theyve have told me numerous time ive baffled them medically,as they can see how swollen my stomach is on my tiny size 8 frame.i have looked and seen alot of peoples medication lists and recognise some of them,the medication my consultant has put me on is paracetomol 1000mg,co-dine (max amount)cyclizine,mebevervine,amitriptyline,zopiclone.all these are to be taken every 4-5 hours.is anyone else on this medication?or have been on it?,only painkillers seem to take away a lil bit of pain away?no other tablets seem to be making any difference!my question to them why all these tablets when they dont know whats wrong!! also ive read abut the different preps u guys have had..ive had picolax and moviprep. they keep giving me it for procedures and im allergic to it, so not only facing the prep situation also allergic reactions at the same time,said they have nothing else but ov reading all ur guys threads there is. does anyone know of other procedures and tests which dont involve fasting as my problem is when i eat or drink i swell up everytime and have pains..still havent seen my cam have been looking,but not thro it,ive gtta go and get the results on monday so will just mention it too him, but like u say i think i could easy miss it.i havent experinced vomitiing just feeling really ill but i do everyday anyway,and the feeling of something foriegn in my body,and experiencing constent pain under my left ribs not a usual pain but dont knw if just pyschological?its a bearable pain but i do have a big pain barrier,so dnt knw.confused.com.will keep u all posted.thankyou for all ur replys and ur support .dont feel alone anymore.xxx
 
Stace, I'm sorry to hear you're in so much pain and on so many meds. I'm not familiar with some of them - I am on Amitriptyline myself. I just take it once a day at bedtime as it makes me really sleepy. What dosage are you on? I'm on 25 mg - at that dose, it supposedly helps calm the guts (I haven't noticed a difference though) and it also prevents headaches and helps you sleep. At higher doses it works as an anti-depressant, so if you're taking it every 4 to 5 hours I would imagine you're on it for that purpose? And I see you're on paracetamol which is called Tylenol or acetaminophen over here in the US, that's a mild pain reliever, and codeine is a slightly stronger pain reliever. What are your other meds for? I'm not familiar with the rest.

I still feel crappy today, ugh. Guts are grumbly and crampy. I had solid stools yesterday, but frequency was an issue - I probably went at least 10 times yesterday. The last few poos were really painful, and apparently on my last poo of the day I developed a new hemorrhoid, lovely. The last time I had a hemmie, it lasted several months and it was really annoying. This new one feels smaller and doesn't hurt as much as the last one, so I'm hoping it doesn't stick around as long. The last one seriously stuck around so long that I ended up giving it a name - it was Herbie the hemmie! I'm putting Tucks cream on it every time I go, even if I just pee (I took some Zofran which has slowed things down a bit and hopefully I will only go once or twice today). Blah! Hubby and I have tickets to a play tonight and am not sure how comfortable the theater seats will be (it's at a 100+ year old theater). Thinking about bringing my donut cushion with me but not sure how weird that would be - I'm acquainted with some of the actors but none of them know about my illness, and I don't want their early impressions of me to be that I'm the weird girl with the butt troubles, ha ha. I really want to see this play too so I might just have to be uncomfortable in my seat for a couple hours. Yuck, I hate hemmies! They're so annoying!
 
I'm nauseous, that'll be fun. I'm glad they give you stuff so that you don't dry heave when they're doing the scope because I bet I would.
 
bring your donut. who cares? if you have a large purse you could put it in there and not whip it out til the show starts.theater people are very forgiving.
 
Agree with flowergirl, Cat - plus aren't those things for people with back issues as much as anything? They might not even think about it being for your booty, if they even see it.

Carrie, they're not going to sedate you for your scope???
 
Carrie, are you allowed to take Zofran or anything like that before your scope? I'm pretty sure I was allowed Zofran - even during the "no food or water" time, they said I could take needed meds with a small sip of water.

Flower, I do have a large purse that I could stuff my donut cushion into. I might do that. I just feel weird about sitting on a donut cushion in public, you know? Even if probably nobody will see me, it still feels weird. I didn't bring the donut cushion to work either (and I sit all day at work too, although my chair is fairly comfy) because I didn't want people to whisper about the fact that I'm gross. I'm probably just being paranoid, I don't know. It's like, my illness is usually invisible. Now it's like, oh, there it is, a sign that I'm ill, a big ugly lump right next to my bumhole, so I'll sit on a cushion which everyone can see and they'll all know that I'm ill. I'm probably just being silly, but yeah, I guess in a way I prefer it when my illness is totally invisible. Easier for both me and others to ignore if that makes sense!
 
Hiiiii everyone... Sorry I havent been on here much lately.
A lot going on..
I'm still tapering off of the prednisone, and my doctor actually wants me off of it sooner than he did before.. So now, I was on 40mg, but now I'm on 30mg for 3 days, 20mg for 3 days, 15mg for 3 days, and so on..
Already tapering off from 40mg to 30mg I'm feeling crampy again.

Soooo something crazy happened... My mayo clinic doctor called my GI doctor out of the blue today because he wanted to know what was going on with me, since I didn't go to my appointment at the mayo and they talked about what they both had seen with me. and my mayo clinic doctor called me at around 5 today and told me that apparently they BOTH are confused about what's going on with my diagnosis.. and that even my GI doctor, the one who did my pill cam and found crohn's, is still 'confused' how only the pill cam has shown something (even though in person he tells me with no doubt that it is crohn's...) Soo they both agree apparently that once I'm off of this prednisone, they want me to not take anything at all, and see if I go into a flare, and when I do, they want to do ANOTHER pill cam!!! :(
Soooo now my mom is upset because she said she has to watch me get extremely sick all over again, and then how do we know how sick I need to get to get the pill cam done again, and how in the world am i gonna be able to get it done on such short notice whenever I am in a flare??? This is just RIDICULOUS. I've never been so frustrated in my life I'm tired of doctors keeping secrets from me, and then diagnosing and misdiagnosing me! Like, come on! Let's get to the bottom of this alreadyy!!! ahh! :(
SOO, i'm making an appointment to see my GI to get a plan on how we are gonna just out of the blue get a pill cam done when i'm in a flare without actually making an appointment, because as we all know... you can't plan a flare... ajfeioa;fjeaio;fj
AHHHHH JUST SO FRUSTRATED!!!! :( why do doctors do this!!!! I just want to cry and give up!! :(
and then what happens if they do another pill cam and they don't find anything again.. then where do we go from there?!?! I JUST DON'T UNDERSTAND!!!! :(
 
What in the world, Sunshine? That is horrible!!! Why can't your GI doc tell the Mayo doc that he's as sure about your dx as he tells you he is??? That is the worst thing I have heard in a long time. You poor thing! I cannot believe that. I am so ticked off for you. I thought you were finally going to be taken care of. And now they are just experimenting on you again? You should ask your current GI what he plans to do if this other pill cam comes back negative. You deserve to know. B/c this is a load of crap.
 
sunshine, i feel so bad for you. i don't even know what to say at this point except you must be a pretty strong trooper. try to keep it up!

i'm trying to not get sick right now. hubby is sick. not horribly, but i still don't want it. i can feel my mouth trying to flare up again. which doesn't surprise me, because i always used to get canker sores when i was sick. remicade still hasn't seemed to do a whole lot for my top end. thank goodness for steroid cream and chamomile tea.

cat - i guess once i got really sick i just stopped caring what other people thought. i figure if i can get around like a pseudo normal person then that's a good thing. who cares if my fistula still farts? someone will think i'm weird for a minute and then they'll get on with their lives. and if they don't, then they've got problems. i've got enough of my own problems to worry about someone else's. i hope you can get to that place and bring your donut. it's easy to be discreet in a dark theater. :blush:
 
Sunshine you poor thing..i know this has to be so frustrating for you :ymad:

Now, please don't be mad at me, but I'm going to attempt to point out the positive in all this :shifty-t:

A few weeks ago I understood that you were upset at the Mayo doctor because you felt like he was just giving up on you because he wanted to prescribe antidepressants to see if it helped lessen some pain, and pinpoint a more specific pain(s). And also there weren't any more scheduled tests to run at that point.
Also, and correct me if I'm wrong, your current GI, the one who did the first pill cam, isn't he also the same doctor who so easily threw the results of that exam into the garbage before any other doctor had a chance to review them? and now he is the doctor who, after all your testing at Mayo, decided to go ahed and diagnose you based on the test results he threw away?

Ok, so my opinion here is just that, my opinion and it could be worth zero to negative zero for all I know. LOL.
First off, I would be VERY leery still of the doctor who threw out your very important results. I still don't understand that, and I think its extremely irresponsible.
Second, maybe you could think of these two doctors discussing your case together as a sign that they very much believe that there is something wrong, that does need to be treated, but they just are being cautious that they are not treating you for a possible disease, instead of a definitive disease, and that treatment could end up doing you more harm than good if it is the wrong diagnosis. :) It seems to me that your Mayo doctor was not giving up on you at all, just the opposite. You obviously have his attention, and by not showing for your appointment he followed up on you with your other doctor,and you. that's saying something in my book. They're paying attention.

I know your tired of being sick, and tired of not knowing, knowing, and then not knowing; that's awful, and I wouldn't' wish that on my worst enemy. I'm just saying I guess that maybe you shouldn't be angry that they are talking and working together, maybe you should be hopeful, because as they say "two heads are better than one " right ? :thumleft:

Anyhow, you're always trying to stay so positive , so I just wanted to try and help you see a positive side to this if I could. If I failed miserably, I apologize. If I didn't make any sense....just blame it on the lack of sleep from sitting here at Mayo and going stir crazy for the last 3 days :ylol:
Take care and best of luck ! :)
 
Sunshine, I feel like you and I are being treated the same f*ed up way. they want to see how far they can push it to satisfy their stupid tests to feel better about themselves. This is just CRUEL. I would stand up for yourself and REFUSE. This makes me so angry I want to spit nails....
 
OK...so I'm a little worried here...

I touched my ear a little bit ago, not for really reason, and I found that its swollen. Well part of it anyway, part of the side. I go to look at it in the mirror..and a really weird colored freckle is right on top of the swelling. Its hard as a rock. I don't know whether to ignore it like its nothing or go back to my GP and see if it is something to worry about. Skin cancer runs in my family, and I know one of the signs is weird freckles. >.< Am I freaking out over nothing?
 
Well...that was an epic waste of time. :( NOTHING was found. And it was excruciating...they had trouble turning a corner, and I was screaming in pain, they were pushing on my stomach and all sorts of things. Then they finally gave me more drugs, but it was awful!!! So...she said to take Metamucil, Probiotics, and Imodium. NOt that any of the above will help my pain, whatsoever. I just want to f'ing drive off a bridge, i'm so tired, sore, frustrated, and just defeated. I don't even know what to do. I'm going to get a referral from my GP for a rheumy, look into booking a private MRE so I don't have to wait a million years, and see a naturopath. I'm so done ....wtf is the point, it's all getting me nowhere, just more upset with every f'ing test. :(
 
Thanks everyone, I'm just hanging in there!

Crohn's mom, I'm looking at it the same way! You made perfect sense! Although I am beyond frustrated about all this, at least I know that maybe if they are "working together" maybe they will be able to figure it out this time.. My mom is extremely worried about this though, since I'll be on nothing again, and the last time I flared up i went to the hospital and was dangerously low in everything in my body :( So my mom is very worried about having to basically MAKE myself flare and get as sick as possible... :( Poor mommy.. I feel so bad for her. And I can't believe I have to go through this again as well.. Maybe whenever I do the pill cam, if they do see something again, maybe they can go and get a biopsy at the same time or day or so later? I don't know if that will be possible, but i'll have to talk to my mayo clinic doctor and my GI here. And this time when I do the pill cam i'm doing it at the hospital so that they keep ALL the photos and video! I'm just nervous on how we are going to work this out.. you can't plan a flare and I can't schedule the pill cam because I can't schedule a flare..lol. this is gonna be a tough one! :p buttttt we'll figure it out soon! I still have about 3 more weeks left on pred, and then when that stops, i'm sure i'll flare up pretty soon after being on no treatment again. I hope this happens sooner than later. and I hope something shows up so we can get a FOR SURE diagnosis, orr if nothing shows up, figure out what's going on!! DETERMINED over here! Just wish I didn't have to go through this pain all over again :(
Thank you so much for the positive-ness! I love it! :)
 
I'm really not doing too well :( It's 5AM and I still haven't slept yet. I've been in the bathroom for the past hour, cramping is really bad, and i'm so nauseated! :( Guess I'm not sleeping tonight, and I'll be spending my morning in the bathroom...
 
Sunshine, I'm so sorry to hear about all of this. Like Crohn's Mom said, at least your doctors are working together now. But to essentially force you to flare, that just seems cruel. I know they want a definitive diagnosis, but at what cost? It seems like you've been through so much these past few months and the roller coaster ride just won't end. :( And to diagnose you not once but twice now and take it away both times plus taking away your treatment, this is just awful. I wish there were something more I could say! Sending you a big hug. And I hope these doctors can get their sh** together soon!

Tamesis, projectile vomiting is never a good sign! Especially right after a scope. If it doesn't improve, or especially if you get new symptoms like fever or awful pain (more awful or different than your usual pain), please go to the ER - it's rare, but it is possible that the scope perforated your intestines. Worried about you - please keep us posted and I hope it was just a fluke and you feel better soon!

Allie, yikes! I would get it checked out. That doesn't sound like something to mess around with. I would go see the GP ASAP. Especially since you said skin cancer runs in your family. I don't know much about skin cancer, but I do know that you don't mess around with something that could potentially be cancer (for the record, colon cancer and breast cancer run in my family). You said your GP is really lovely, so even if it's nothing I don't think she'd laugh you out of the building for being worried about your ear. Hopefully it's something minor - worried about you too!

You guys are all making me so worried, it sounds like everyone's doing really badly lately in one way or another. :( I hope things turn around for everyone very soon!

As for me, I am with everyone else - not doing well today. Went home sick from work yesterday afternoon and called in sick today too. Didn't feel all that great yesterday, and in the afternoon I kept getting hit with waves of nausea and abdo pain so went home and laid down with my heating pad. Today is shaping up to be the same. I had to take my Asacol yesterday, and you have to take it with food, so I had Ensure for lunch & dinner. Even with no solid foods for the better part of a day, and probably no solid foods today either, I'm still having quite a bit of pain although the nausea is thankfully gone. But I slept 8 hours last night and woke up exhausted, haven't done that in a long time. I'm not sure what's going on - I'm not in a flare, I know that for sure. I haven't had flare symptoms such as chills, pallor or night sweats - I haven't had d either. So I'm wondering if I caught a stomach bug or got a touch of food poisoning or something like that. It sucks, but I'll get through it - got my heating pad on and a mug of ginger tea which is helping. I hope you guys all get to feeling better soon too! Hang in there everyone, sending you a big group hug!
 
Tamesis, I'm sorry your colonoscopy didn't find anything! That entire experience sounds awful. :( Don't give up!

I think everyone isn't feeling too well right now. :( I pick up Stuart from the airport tonight...which is REALLY exciting...but the anxiousness and stress of it is causing the worst symptoms. Trying to get them under control so that I can pack!
 
Sunshine, I'm so sorry you're getting the run around. I'm glad you're able to have a positive outlook on it a98ll though. :) (Sorry, Claire's helpin.g me .t8ype...

Cat, I'm sorry you're also unwell....Hopeful it's just a bug, and passes quicklY!!

230.27.2378888
28Al3lie, I hope your reunion is all you hope for2, and you are able to ge2t some packing done!!! :)

trying to feel optimistic today, and the pain/vomiting from last night has settled...>We had chinese at my inlaws, maybe it was just too much after the scope? I dunno....Had a couple poached eggs for breaky, seem to be sitting well.
Claire has a nasty snotty nose, and is in a rotten mood...Lucky me!! But, i'm going to make an appt. with my GP, see if she'll run a lupus test, and then refer me to a Rheumy. When I see my GI next i'll be asking for a pill cam......Is that more effective than a CT?MRE?
 
Good for you to get tested for Lupus! Even though most lupus patients don't have gut issues, its good to get it out of the way. Pill cam IS more effective than a CT. A CT can see bowel inflammation, but it cannot see the inside...so no ulcers or things can be seen. A portion of crohn's patients have their disease entirely in the small bowel, and the pill cam is the only way to see it. You can also do a small bowel follow through (xray of the small bowel as barium goes through it) but it still doesn't see it as well as a pill cam.
 
Yes, it sounds like everyone is doing poorly. While I feel alright GI-wise, I woke up twice last night all sweaty. It was gross. I don't know if that qualifies as the night-sweats that some of you speak of or if I just got hot while I was sleeping or something, but it was weird.

Sunshine, you continue to amaze me with your positive attitude. I'm sorry if I was overly negative - I just was so relieved that you had gotten some help and relief, even if it was short-lived, and to hear that they were purposely wanting you to flare just seemed a bit inhumane after all you've been through recently. Well, like someone said in another thread somewhere, if your meds haven't gotten this flare to stop yet, then probably once you're off the pred it'll just start back up again, in which case they can do your tests and you'll be figured out here in no time. I really hope so, and that they are willing to stick with whatever decision they make. It was nice of your Mayo doc to call and see how you were.

Allie, I don't know what to tell you about your skin thing. Get thee to a dermatologist, I guess, or your GP if that's all you have time for. I hope the stress of this time of year doesn't treat you too badly.

Cat, I'm sorry you're feeling unwell also. Hopefully it's nothing serious. And not IBS either!!!

Tamesis, that sucks about your c-scope. I hope you are feeling better soon also.

Well, I have to say that I hope 2012 is better for everyone!!
 
:ghug: I'm sorry everyone is having issues :( It would be nice if things could calm down a little for the holidays, huh?

They did sedate me for the endoscopy. I think he said he used fentanyl and propofol? Soo.. apparently my stomach looks great. The ulcer and gastritis are gone! So he has no idea why I'm waking up from dead sleep to dry heave and stuff. Everyone always wants to blame the fibromyalgia. But the interesting thing is that both my IV nurse and my anesthesiologist have close relatives diagnosed with fibro who are sick as I am. doesn't mean anything really, just an interesting side note. I don't know what to do, and there's nothing I can do for at least a few months. I just can't deal with collections again next year. ugh. that was horrible.

I took a vacation day and went back to sleep this morning. I finally wrapped Kelly's christmas gifts! This time next week we will hopefully be about halfway to my parents place. We're bringing Babydoll so that will be an adventure. drive time is about 10 hours.

Sunshine, I don't even know what to say about your doctors :( :( It just doesn't seem right to let you get sick _again_.

Allie, I do hope you get your ear checked out. If various parts of you are suddenly swelling up then something is wrong. Have they checked for cellulitis? I hope you get better soon :(

I haven't sent out your card yet, Cat, but I will by Monday! I have a handful that I still need to address and stuff. I can be such a procrastinator.
 
Oh boy! I am sorry to hear my fellow undiagnosed pals aren't doing so hot. Why is this right before the Holidays?!



@Sunshine - I can't believe your GI's out right said they want you to flare. Aren't doctors supposed to get their patients well? At least when my GI doctor stopped my meds, she led me to believe she was truly confident in her IBS diagnosis, though I think she stopped my meds for the same reasons your GI doctor wants you to be off all meds (in order to flare and get a clear diagnosis). I sure hope you won't suffer for much longer and will finally, FINALLY get some answers.


@Allie - Enjoy your reunion with your hubby - how wonderful!


@Carrie - I am sorry that you didn't get a reason for all of your issues. But it sounds good to me that everything has cleared up!


@May - I hope your night sweats last night was caused by just had too many blankets on you last night and nothing more.


@Cat - Hope this bug clears up shortly!


@Tamesis - I think it certainly could have been the Chinese food that caused the pain and vomitting. I always eat lightly after a procedure, so not to shock my system. However, keep a close eye on things just in case!
 
pasted this here as an update too .....well i have got the results of my small bowel enema , all normal even though the test hurt like hell and the radiographers seamed to be discussing what ' that ' was on the screen and even had a deeper look , dont get me wrong im happy nothing major is going on but was still kinda hopeing something was there so they could treat the pain , ??:well:

so far i have had a small bowel enema and large bowel enema , the large bowel showed abnormalities but not of any significance !! the smal bowel normal ??

what i gues im asking is ... is the the end if the road ?? what other tests can be done ?? has anyone else had normal results then had a diagnosis of something ?

soo desperate to be able to eat without pain and be pain and toilet problem free !! :(
 
OMG sunshine smile whats is going on , its like dangling a diagnosis infront of you like a corrot then saying .. ohhhh lets put u in pain again just to be sure grrrrr , havent you been through enough already xx
 
Thank you so much everyone for your concerns. I love you guys! <3 And I'm so sorry to hear about everyone's tummy issues lately, and right before the holidays! These things always find a great way to bring in the joy of the holidays and new year! lol...

Yeah, I don't understand, if I'm on pred I shouldn't have felt that bad all night long.. so weird.. but he is tapering me off of it. and i'm sure when i'm on nothing, it won't be hard to get into a flare again, but i'm just so scared.. the last time i got into that flare, i was really really sick and was lucky i got to the hospital when i did. and now I have to purposely go through it again, and that worries me. But, I know it's all in good reason..
My mayo clinic doctor i was surprised called me because he's usually the busiest. and my GI here still never called me... >_< but I did get an appointment for next thursday to talk to him about all this and what the plan is. because on the phone I know he will just push me to the side and say okay, okay, okay, bye. So i'm talking to him in person so I can actually physically hear him say everything and have him listen to me!
Nervous about how all this is going to plan out (considering I can't plan my next 'flare') but we'll see what the doctor has to say... I tell my boyfriend this everyday, "I wish I could just look in my tummy and intestines and see everything for myself, so I could finally know what REALLY is happening." that's a bad thing about tummy issues, you can't see it from the outside... :( Oh well, things will all get worked out. Just have to continue to be patient..
I DON'T WANT TO GO THROUGH THIS PAIN AGAIN :( my body has gone through SO much lately.. I hope this flare happens soon after the pred is all gone, so we can get this done faster.. and then it's like... how sick is sick enough to get the pill done!?!? >_<

hope everyone is feeling a little better as the day goes by.. <3
 
its just so awful knowing you are going to have to be ill again to have the pillcam done , whats is it about IBD that means you have to be ill to see whats going on , my general doctor has said that i should have had my latest test done first when i was at my worst to see any inflammation !! well duhh we tried that and this was the earliest on the waiting list.... its gunna be so hard to get diagnosed at this rate !! im not knocking my general doc he is fab , just the waiting in england to see the big guns is like foreva !! ohh sunshine i feel so much for you having to go through that again xx
 
May, I get awful night sweats when I flare. I will wake up literally drenched from head to toe and if I'm not sleeping on a towel then the sweat will have soaked the sheets too. It's really gross! I've heard similar stories on the forum about night sweats. So if you woke up sweaty, but not soaked in sweat, I would hope it's just because you got too warm as opposed to being in a flare or having an infection or whatever. Whatever it is, I hope it stops - I can definitely empathize with how yucky it is to wake up all sweaty!

Carrie, hubby and I actually got our cards finished and printed yesterday! :D I'll be addressing and sending them at some point over the weekend. I'm excited to get the card from you and I hope you like mine too! And wow, 10 hours in the car, I would not want to do that. My parents and I drove across the northern part of Arizona back in the spring and it took a full day with a few stops to get from one end to the other. That was miserable and my guts were NOT happy with me the following day. I hope your long drive goes better than mine did!

Jill, I'm not sure if it's holiday stress or the fact that there's a lot of bugs going around or all the unsafe holiday foods. Personally I tend to be more ill around the holidays and I do think it's probably a combo of those factors. Just have to get through the next few weeks and hopefully we'll all feel better!

Fosterschick, what other tests have you had? Personally speaking, I've had many tests and they've all come back normal - but I respond to IBD medications (pred, Entocort, and Asacol) so my doctors know I must have some form of IBD. Sometimes it hides really well on the test results though! It's very frustrating, but you can't give up. There are lots of tests, and it might not be a bad idea to look at other autoimmune illnesses too like Addison's disease or Lupus as those can have similar symptoms as Crohn's. Hang in there! I know how discouraging it can be.

Sunshine, have you already started tapering down on pred? If so, I would imagine that's why you felt bad all night. I've seen tons of stories on the forum of people who felt bad again upon tapering. The same thing happened to me on Entocort - I was on the highest dose (9 mg) for 6 weeks and then I tried to taper down, but I felt crappy again. My GI put me back up to the high dose for another 6 weeks, and after that time I was successfully able to taper. It was like, my body just wasn't healed or ready to taper the first time I tried. Ideally your doctor should put you back up to the high dose of pred again and try to taper you later and more slowly, but it sounds like they're doing a really quick taper to try to get you to flare again. :( I'm sure it'll work, especially since you're already doing so poorly, but how awful to have to go through all this. I'm glad you got a quick GI appointment, I hope he's got some answers and explanations for you.

I'm feeling a bit better. I've had 2 Ensures and one piece of toast today. I'm going to attempt a little pasta or rice for dinner - wish me luck!
 
aww thanks cat a tonic , i have had bloods shown amemia , boarderline inflammation, and low protien levels ?? i have only had barium enema in large bowel and small bowel ?? xx
 
I get terrible night sweats! I have waterproof pillow covers under my pillowcases because I soak them through back and front each night :( I keep a doubled over sheet on top of the fitted sheet. I move around too much for towels. they just end up in wadded balls. extra sheets and loose clothing definitely helps soak it up. plus you can change easily into new clothing if its a bad night.
 
Fosters, so you haven't had a colonoscopy or upper endoscopy yet? No scans either such as CT scan? It sounds to me like you need to request more tests. Bloodwork isn't always the most reliable result and won't tell the complete story. Definitely keep fighting for more tests!

Carrie, it's awful having night sweats like that! I can so relate, the first time it happened I was soaked and actually wondered if I had peed the bed, but then thought how would the pee get down to my toes and up to my head? I smelled it and it didn't smell like pee and then I realized it must be sweat - there was so much of it though, I was surprised I wasn't dehydrated! I had no idea that so much liquid can come out of one person during sleep. Yuck!
 
Yeah i've already tapered off of 40mg completely.
And already been on 30mg for 3 days. So tomorrow i'm starting the 20mg. So they are tapering off every 3 days for me... which is very quick, and I don't think my body is ready for that, but he doesn't like the drug he said (or maybe he's just secretly not wanting me on it because he doesn't know if i have crohn's or not!!! Gosh stupid secrets doctors have behind our backs... >_<) but yeah sooo anyway i'll be off of the pred pretty quickly. probably after about 15 days or something i'm thinking.
When my mom and dad woke up this morning they heard me in the bathroom and were freaking out that I had been up all night with severe cramps and stuff.. I didn't want to wake them up because I know they get upset when they see me sick..
I really hope it doesn't take a long time for me to flare up again (bad enough) to get the pill cam done after the pred is gone, because i don't wanna have tummy issues for months until i get a REALLY bad flare... ughh, it's all up to God now. I'm just along for the ride lol.. This time when I do have a flare, I want to make sure that i am at my worst of the worst so that I know it will be a good time for the cam.. but that's gonna be hard to figure out because when i wasn't on any meds, i felt pretty bad everyday. i'm just gonna have to hold myself together till i think I can't take it anymore... gosh so scary.. :( but the doctors don't seem like it's a big deal.. oh but that's probably because they don't have to go through it themselves! >_<
 
Hey everybody, some serious news. I received a PM from ShanBanana today. She asked me to pass this message along to the club: she's been really unwell lately, and she is undergoing a lot of tests, and she asked that we all keep her in our thoughts and prayers. So everybody, please think happy thoughts for our friend Shan - she needs our support right now! Shan, we're all here for you and you are definitely in my thoughts. Mega hugs to you!
 
Shan, you are in my thoughts!!!!!! I'm sooo sorry to hear about this :( I hope your tests and everything go well!!! I'm praying for you, Shan!!! **HUGS GALORE! You can and will get through this! <3 We all are here for you!!
 
same here big hugs !! hopefully some answers will come for you ?? x thanks cat a tonic , i will ask for tests but here they are happy to leave it as ibs , i am seeing a gi doc in january will see what he says xx
 
meds!

Cat-a-Tonic said:
Stace, I'm sorry to hear you're in so much pain and on so many meds. I'm not familiar with some of them - I am on Amitriptyline myself. I just take it once a day at bedtime as it makes me really sleepy. What dosage are you on? I'm on 25 mg - at that dose, it supposedly helps calm the guts (I haven't noticed a difference though) and it also prevents headaches and helps you sleep. At higher doses it works as an anti-depressant, so if you're taking it every 4 to 5 hours I would imagine you're on it for that purpose? And I see you're on paracetamol which is called Tylenol or acetaminophen over here in the US, that's a mild pain reliever, and codeine is a slightly stronger pain reliever. What are your other meds for? I'm not familiar with the rest.

hey cat,
im on same dose as you of amitriptyline 25mg,one at night,they make no difference to me other than i get irratable if i havent had it.my other meds are a anti sickness,as i wasnt keeping anything down..at all,even vomitting with water!!zipoclone is a 7.5mg sleeping tablet(been told thats quite strong) however i still wake up anywhere from1-10 times in the night.i take these as i dont sleep as lack of food,meberevine is suposed to be taken 3 times a day 30 minutes before food.thinks its like sort of to prepare your bowels for food?other meds are pain relief.think all these meds are bogg standard meds as they havent got a clue whats wrong with me?!,been told my small bowels not dilating,then next day its ok,then got told they had found a bacteria in one of my samples,then that was ok!then i was told they found a red patch on my stomach(which is still there) they dont know what it is at all?.they said they tested me for chrons,said i didnt ave it,then said they hadnt tested me,then sent biaopsys off and said i didnt have it?basically theyve said deal with it and stay on all meds,while we investigate ,theyve looked into(so they say...) all common illnesses and diseases!now looking into un common ones.i recentley had the hydrogen breathe test aswell which i passed.just so frustrated with it all...sounds strange but i beg for them just to give me some answers everytime i go for my results for the last test...all history repeating all the time...get results from my pill camera on monday so fingers crossed i get some answers...really getting to the stage where i just want them to open me up and sort it! im also sorry to hear alot of people are suffering on here..hope everyone gets answers and manages to have a comfortable life...guess thats what we all want...thankyou for your support.x
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Soooooo the pred is definitely not working anymore which is very upsetting to me...
I am now on 20mg and will be on it for the next 2 days and then tapering even more...
Today, I felt really crampy in the morning (which I remember all too well as a past symptom before pred), and then I ate..... and that was the last straw. On my way home from eating with my boyfriend, I had to ask him to floor the car to the nearest place, which was a mcdonalds up the street from my house (but I couldn't wait another few miles to get to my house). Ran into the bathroom, barely made it... and had D.... :( I am soo upset about this... When I got home I went to the bathroom a couple more times this afternoon, and then took it easy the rest of the day.
This hopefully means that maybe it won't be too long after i'm off of pred that i'll flare up... but just thinking of having to get myself extremely sick just really scares me. :(
But, it's the only thing I can do.

This stinks, i feel like i'm not getting anywhere again. Because if whenever they do the pill cam, if it comes back normal, then are they just gonna call the other one a fluke?? Like, it showed inflammation and stuff for a reason... and then where do I go from there? back to square 1? and then if it does come back with ulcers and everything, then they still need a biopsy... So, i'm not sure what's going on... I hate not understanding what's going on. I wish I could be more in control of this.

I was watching mystery diagnosis last night and the girl had tummy problems for many years and everything came back normal, and then one day she went to the ER and they decided to do diagnostic exploratory laparoscopy and they went in with the scope and realized that there was a lot going on, and ended up doing an open surgery and saw inflammation and there was even a tumor! They did the surgery and now she is healthier than she's ever been. Why don't they do laparoscopy surgery more often for people who are undiagnosed? I know it's a REALLY SLIM chance to find something, but sometimes it does... Idk it freaks me out...
We gotta hang in there!! <3
Sorry for venting so much! love you guys!! <3

today should be a good day though, celebrating 2 years with my love!! :D
he's taking me somewhere, but he won't tell me where! It's a surprise! I hope the tummy cooperates! But either way, I'll just be happy to be with him for the entire day! :D YAY!

Hope you all have a good day! <3
 
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@Sunshine - I am sorry you are doing so poorly. I hope you enjoy celebrating your 2 year anniversary! You deserve to be spoiled a bit.


Today wasn't a great day for me either. Ab pain has been back. It's all over and moves around from R side to L side pain. Mucus has stuck around, too, but it has been getting worse. And there was blood in the mucus today. I am pretty upset. I had some pretty good days lately, and of course, I was secretly thinking, could my GI doctor be right? Could I have something other than Crohn's? Alas, this is clearly not the case. It hurts a bit. But I think my biggest concern is hubby & I want to start a family next year. With my health so questionable, this probably will need to be put on hold.

I have been trying to reach my GI to ask if we can do a sig at my next appointment on Jan. 6th to see what's going on in there. I emailed her and left a message with her nurse. No answer. It's time to enter stalker mode.
 
Well I have more news. On Friday to my amazement the Bone Scan appointment came through for the 9th January. Trying to work something out with regards to lifts/ taxi money since the injection is at 9am (let's allow another half hour for me lol) and back for the scan at 1:15pm. I'm about 20 mins away from Hospital by car.

Saw MP today and he is going to contact Rheumy and PCT about PET scan criteria. He seemed to think if you need a test and meet the criteria you get it- but since my Rheumy has applied for 5 this year and not had one approved I don't think that is the case!

Also had a letter from Rheumy today, he has re-applied for it and spoken to some people about the best way to get it approved, and they decided upon an MRA which is an MRI scan of the arteries in my tummy to look for inflammation and constriction which may explain abdo pains. I am pretty happy to be getting another tummy test! He said it was simple, safe and potentially helpful.

Other than that, been fighting a small version of what I deem my mini flare (guts don't want anything in and expel all that is already there!) today and the last few days all my pains have come back with a vengence. Also I heard my friend delivered her baby at 23 1/2 weeks and the little girl is in intensive care naturally. I am pretty upset about that. Not only has my friend been through so much and longed for a child, I had (selfishly) real hopes of being asked as Godmother, which would be a dream come true for me, as I am not having kids and no babies in the family and no sign of nieces/nephews! I know the odds for premie babies are not good, in terms of survival and life quality. As hard as it is being sick as an adult it absolutely breaks my heart when kids get sick.

My cat is making me laugh though, she has been spazzing all day and was really interested in my packages today, usually she'll raise her head from the chair and go back to sleep!
 
I've been ill since 2007 with 7 surgeries and no hope...



I'm a 26 yr old female living in NYC. In 2007 I woke up with a huge golf ball-size ball near my anus. The pain was unbearable and couldn't sleep through it at all. I couldn't cough, laugh, bend down, using the bathroom was extremely painful which made me lose my appetite because of the fear of being in pain later. I had to be rushed to the hospital where I had surgery to open and drain the ball, which they thought was a cyst. I couldn't work and became home-bound because everything I ate would be processed super fast. I always needed to be near a bathroom which was embarrassing to me.

They then sent me to a colorectal surgeon where I had 3 more surgeries, (Seton placement, fiber plug, and the advancement flap), all which never worked or healed. I was left with an open wound, basically it's like having a second butt-hole. I then decided to take charge and find another surgeon, which I did and he took all careful measures and exams before going further with surgeries. I had 3 more surgeries with him, (mostly repeating my past surgeries). I'm not in pain anymore but I still have that open wound/2nd butt-hole that leaks abscess and even stool daily. I'm suppose to see my surgeon in April...he thinks that by then it will close up....but I doubt it.

I just feel so hopeless...like this is never going to go away. And in April if he sees that it's still there, the last surgery which we've been trying to avoid, would be the surgery that could possibly make me lose any muscle i have in my anus. So basically I won't be able to control my stools from coming out, (shitting on myself basically). I'm not sure I would even want that surgery done. I think I rather live with this 2nd butt-hole...lol. (First time I actually laughed about it). On top of that, I've been living off of SSI and now they are going to take away my funds as well as my insurance. I haven't worked since 2007, how can I possibly get a job now? Especially with my condition of always needing to be near a bathroom....what job is going to pay me to be 90% of the time in a bathroom? :poo: I'd gladly work if I could find a job that doesn't mind. And my insurance....how the heck am I even going to see my surgeon in April without insurance? I'm screwed. I've been trying to fight SSI so I can at least have insurance but I'm still waiting for their response.

My therapist suggested I try to find a support group because I have become extremely withdrawn from the social world....isolating because I feel no one knows what I'm going through, nor do I want to discuss the disgusting-ness of having a "2nd butt-hole"...it's embarrassing to me. So I feel alone with this....as well as hopeless. So here I am...hope this helps me out somehow...:yfrown:
 
Jill, Goodness, blood in the stool! :( nooo, that's so upsetting! I know how you feel though.. feeling like you are backtracking a little when you get mucous and D and such.. :( hang in there! *hugs* I hope you can start a family next year, I know that would be very special. Hopefully your tummy issues can be resolved by then and you can be healthier for the new family. :)

Star, Glad to hear about another tummy test!!!!! CONGRATS! Let's hope this shows something!! And sorry to hear about the mini flare :( Keep drinking fluids if you can get them down so that you won't get dehydrated! It's scary what your body can't do when it isn't hydrated enough.

Loner123, I'm sooooo sorry for all that you have been through, that is just awful... :( *hugs* But, welcome to the club! Everyone here is amazing and will always try helping out as much as we can. It helps a lot to talk to others who have been going through a lot of the same stuff, especially in the undiagnosed club where we are all trying to get some answers! Just wanted to welcome you and let you know that I hope we can all help in someway to provide some hope and have some good friends that ALL know EXACTLY what you are going through. :)

As for me, my 2 year anniversary with my boyfriend was absolutely amazing!! He got a little villa ON the beach for us! :) and we went to a really nice dinner. it was just so wonderful to get away from everything and go to the beach, it was very calming and peaceful. He said he wanted to make it a special day because he knows how much I've been going through and that I needed to have some good happen. So happy :)
Tummy could of been nicer! But, I wouldn't trade yesterday for anything!
My appointment to talk to my GI doctor is this thursday!!
I've had these REALLY tender areas all along my abdomen in the middle between my ribs and going along the under side of both ribs to my sides... I do not like this. I think it may be because the prednisone is no longer really working for me, so I could be getting inflammation again? I don' t know... not sure... :/

How is everyone doing?!?!? <3
 
SunshineSmile, (hugs), if that is really you in your profile picture , your profile name fits you well. I mean I can tell you are a happy person who maybe looks at the positive in bad situations and always smiles regardless, (I could be wrong). But with your kind words, I can sense that your personality shines "like the sun" and your picture confirms it...hehe. Anyway, thank you for welcoming me, I appreciate it and hope to meet more people like you. I do feel a sense of...I guess comfort that at least I have a sea of people in the cyber world that knows what I'm going through. I didn't expect it, but I'm glad I joined this club.

Wishing you all good health! <3
 
Loner, (you are NOT alone!) I feel bad calling you "loner", it's not a nice thing to say because you are not alone anymore! :) And yes that is me in my picture, thank you soo much that was so sweet of you to say about me!! :) I do try as hard as possible to stay positive, and I'm happy to say that everyone here is also like that as well. ALWAYS lots of positive vibes coming through the computer! Even when we all have rough days and we vent, everyone is always supportive and makes you feel better about the situation because again we all know how it is and how you feel! You are definitely NOT alone! :)
 
SunshineSmile, well thank you so much! :) You're too kind. I hope to be like you and just keep smiling regardless of what's going on....it's a good way to be in life. And I will definitely use this club for support, so I guess I'm not such a "loner" anymore. I will be seeking those "good vibes through the computer" on days I'm feeling down hehe. BTW you can call me Bonnie if you'd like :)
 
@Star – I hope your doctor will get the MRA approved for you. Hopefully, this test will help get some answers. And I am so sorry to hear about your friend’s baby. I really hope she will be alright. Keep us posted.

@Sunshine – What an amazing way to celebrate your anniversary! That boy sounds like a keeper!

@Loner123 – Oh boy, you have been through a lot! I am glad the pain has decreased at least. However, I am sorry to hear about your insurance issues. I certainly hope you can have your SSI extended. I know it isn’t easy, but try your best not to get worked up over it. Stress is not good for your system. Have you been diagnosed with IBD either Crohn’s or Ulcerative Colitis? Either way, I am glad you decided to join the forum. I think you'll find it really helpful. There is always someone here to listen and to talk to. You are NOT alone!
 
Such a great idea for a thread. I'm not diagnosed, but a great friend of mine may/may not about to be. She's been going through some trouble for years now, and I figure the best way that I can help her is through getting as much information as possible. You all are awesome for sharing as much information as possible.
 
Hey everybody, I've been crazy busy with both work and xmas stuff (crocheting and wrapping mostly), sorry for not being on here much lately. And unfortunately I have a new pain! Yesterday and today I've been getting sharp pains in the area where my chin/jawline meets my neck, on the right side. It feels like I'm suddenly being stabbed with something sharp. Then the pain goes away after a little while but then it happens again later. It's been happening every 20 to 60 minutes roughly. I don't know what it is! And I've closely examined the area in a mirror, my neck and chin all look totally normal. Nothing whatsoever to indicate what this pain is or what's causing it. I don't like it! Has anyone else had pain like this? I'm guessing it might be stress-related and I hope it goes away after the holidays.

Loner, I'm glad you found us, and you certainly have been through a lot! I hope everything works out okay with your insurance and the surgeon. Did they ever figure out what that lump was - you mentioned they thought it was a cyst? It sure sounds like an abscess to me although I'm no expert. Abscesses are fairly common with IBDs such as Crohn's & colitis so that might be a big piece of the diagnostic puzzle for you if your doctors can figure that out. Anyway, welcome and I hope you are able to heal up and get some proper answers and treatment!

Erinever, I hope your friend can get diagnosed. What symptoms does she have? What are her doctors doing to try to get her diagnosed?

Sunshine, I'm glad you had a good anniversary! That sounds so relaxing, a little place right on the beach. (Meanwhile we're expecting freezing rain and ice pellets here, lovely!) As for pred not working any longer, my guess would be that you weren't on it long enough to blitz all the inflammation in the first place, and now that you're tapering so quickly the inflammation is either getting worse or you're just not on a high enough dose of pred for it to mask your symptoms any longer. Pred both stops inflammation and masks the symptoms so it could be either or both. Definitely let your doctors know what's going on and that you're already feeling so yucky, and hopefully they'll do that pill cam sooner rather than later. This will be pill cam #3, right? That's ridiculous, I really hope they can firmly diagnose you with this one! Like the saying goes, 3rd time is a charm, right?

Jill, I'm so sorry to hear that your health may put off your plans to have children. :( But I do agree that you need to take care of yourself first. From what I've read, if your illness is bad when you get pregnant then you're more likely to feel crappy all through the pregnancy, and if you are well and in or near remission when you get pregnant then you're more likely to feel well throughout the pregnancy. So I agree that it's probably best to get some solid answers about your health and treat your illness properly before having a child. That really sucks though. I have been on the fence for quite awhile now about the prospect of having kids, and although I am probably in remission, I still don't know what I've got, and the thought of having a baby in a flare is overwhelming. I can barely take care of myself in a flare, how on earth would I take care of a kid too? Anyway, I hope that you can get some answers, feel better, and start a family.

Star, so happy to hear that you get some more gut tests! It sounds like the MP visit went well too. And I like the new profile pic! :) I am very sorry to hear about your friend's baby, I hope she can pull through. If it's any help, there is hope - my husband was actually born very prematurely and the doctors told his parents that he wouldn't live. Well, of course hubby did live, and he's got no health issues or mental deficiencies or anything like that. Aside from the kidney stones he had earlier this year, hubby's healthy as a horse! I hope your friend's baby can have a similar success story.

How's everybody doing today? I hope the holiday stress isn't affecting you all like it is affecting me (BTW, Carrie, got your xmas card in the mail - love it! :) ). Owww, just had another pain in my neck as I wrote that sentence. Anyway, I'll try to check here as often as I can but just in case, I'm pre-emptively wishing everyone happy holidays! I hope your holidays are stress-free, gut-friendly, happy, healthy, and as painless as can possibly be.
 
Holiday stress, well we won't go there, let's just say I know where I come on the priority list with my family! I seriously had a strong hint I should join them for lunch tomorrow- yeah, like I want to drag myself out and sit there with my glass of water while they all tuck into a hot lunch.
 
Welcome Bonnie! We are near NYC ... just on Long Island. My son's doctor is in NYP. I hope you are able to get coverage somehow. Have you been to Mount Sinai Hospital? We went there for a consultation. It has the reputation as the place to go for Crohn's.

I wish everybody felt better! Danny is feeling worse than normal too this week.
 
Yeah this will eventually be pill cam #3 for me whenever I flare up again. And I have my appointment with my GI on thursday, so i'm going to tell him my symptoms are coming back, and also ask him what the game plan is...
I wonder if they could just do an exploratory laparoscopy one day.. Maybe that would help. I don't know, i'm not a doctor, I just feel like i'm tredding water and not getting anywhere. Because even if the pill cam shows something, they are still gonna want to get a biopsy somehow. and if it doesn't show anything, then... i'm absolutely back at square 1. I try not to think about it, but it just makes me upset because I wanted to leave 2011 with all the tummy problems, and start 2012 tummy problem free, but now all this crap is rolling into 2012 and my insurance will now start over so everything will be an expense again.. :(
On a happy note, I'm excited for christmas, I love this time of the year, it's just great! :)
I made a really cute pillow for my friend for christmas. I think i want to make more! :)

Cat, i am sooooooo sorry that your neck/jaw is giving you so much pain! that sounds awful! I get jaw popping on my right side of my jaw, but that's all I get with the jaw pains. I usually only get those jaw pains though when my tummy is really bad, so sometimes i'd like to think that they are somehow related, but who knows, haha.
Is your tummy hurting today??

hope everyone's having a good day! <3
 
Hey Guys! I hope the stress of the holidays hasn't gotten to you guys too bad!

It has for me unfortunately. :( I have had way to much going on the past few days, and now that I'm staying at my in-laws, I have no privacy and no down time. I am so tired. With Friday being anxious with Stuart's homecoming, then graduation, then moving out of the sorority house, then coming here...ouch. My pain is so bad I want better pain meds. My husband has to help me in and out of the car, up and down stairs, etc.

The only good part about being so bad is I couldn't subconsciously hide my symptoms this morning at my rheumy was that they saw exactly how much pain I'm in. I came in crying this morning since I wasn't on my tramadol. And my joints are now physically swollen, so they could see that as well. We went through what was going on, and reminded them I responded to the pred. My CT scan was normal, of course. ~.~ We talked about pain, and my rheumy's assistant wanted to give me hydrocodone. She left to talk to my rheumy, and he came back with great news. Since I responded to the pred, he decided it's not IBS or Fibro. Because I am not getting enough evidence for crohn's or lupus, he thinks its "mixed connective tissue disease". I'M BACK ON THE PRED! I'm on 10mg, tapering over a month instead of two weeks. And after that, I get to start plaquenel. (sp) So even if this ends up not being the end diagnosis, I will be on meds that will help me. And my IBS diagnosis is gone! I am so happy they are not telling me its in my head, and that I have an autoimmune disease. :) I will be well for Christmas! They ended up not giving me the hydrocodone because they believe I wont need it with the pred...I wish I had it for the next few days. :( I have even considered going to the ER or even a pill mill type place to find some better pain meds the past few days...
 
Allie, so happy for you! Yay for more pred and HIP HIP HOORAY for a diagnosis that's not IBS or fibro!!!!! :D I had to google mixed connective tissue disease, and after doing some reading it sure sounds to me like it fits what you've got! I'm so, so, so happy that you are finally getting treatment and have a name for this thing! As for the pain, though, that sucks. :( I hope you can figure something out to get through the pain until the pred kicks in. Big hugs! Don't let your mother-in-law make you do too much, either. Tell her you're on new medication that requires you to rest a lot. ;)

Sunshine, my jaw sometimes clicks too, but this pain is lower. You know the spot on your neck where you can put your finger to check your pulse? It's right in that area, but a little higher up, just underneath the jawline. I haven't felt the pain in a couple hours (knock on wood) so I'm hoping it's going away. I did some googling and I found other message boards where people had posted about having similar neck pains, and one person said it was probably a mild infection in either the thyroid or lymph node but that those usually go away on their own and don't require doctor attention. So I'm going to hope it's just that, but if it doesn't go away I'll have my GP take a look. The pain went away for a few hours this morning too but came back again late morning and was bad for awhile and now is gone again. But since the pain came back once before, I'm guessing it'll come back again.

Oh, have you guys ever used webmd.com's symptom checker thing? You enter your symptoms and it gives you a list of what your possible condition is. I entered that my symptom was one-sided neck pain, and it gave me really weird results. Cat-scratch fever was one of them - I do have a cat, but I can't recall her scratching me lately so I'm pretty sure that's out! Also I didn't realize that cat-scratch fever was a real thing, I thought it was just a song (which has now been stuck in my head for hours). :p Ha ha!

Sunshine, isn't it fun to make crafts for gifts? I'd love to see how your pillow turned out! I also made pillows - I was looking through my fabric and I found a few yards of sailboat-themed fabric. It has sailboats and lighthouses and stuff on it. And my in-laws have a really nice big sailboat that they've been remodeling, so I sewed them some throw pillows out of the fabric to use on their boat. I hope they like them!
 
Allie, sooo happy for you!! :) That is just WONDERFUL! I can't even describe how excited I am for you that you can be feeling better by christmas! :) First graduation, then being with your husband, and now finally some pain relief! :) They do say that things come in 3's! And you just had 3 blessings come your way! :) I do believe that you will get a diagnosis soon, since your rheumy is taking you so seriously and is giving you meds. This is just awesome! :) I can only imagine how happy you must be!

Cat, yeah if it keeps coming back later, you should definitely go see your doctor. but, hopefully it will go away on it's own if it is an infection or something like that. :)
I have used webmd's symptom checker!! haha I laughed SO hard when I read what it came up with for your neck symptoms!! I literally laughed out loud! It always comes up with SOO many different things it could be.. that it's like.. putting in your symptoms to see what it comes up with doesn't really help figure out what it is haha you know what I mean? like it'll be like... IBS, pancreatitis, endometriosis, crohn's, ulcerative colitis... it just keeps naming things, and it's like.. well i could of told you those things could be it too!! LOL but it is nice to see different things that you may not of heard of before. so i'll give it some credit! :p

I LOVE making pillows! I'll have to post a picture somehow, it's super cute!! i really want to make more!! It was my first pillow I've ever made, so I'm really quite happy with it! I love when you get a vision in your head of how you want something to turn out, and then when it's done, it looks exactly like how you envisioned it! :D I love your sailboat idea! Sounds really cute, and I am SURE they will love them for their boat!

You know what kinda upsets me? is when my friends tell me that they understand that I can't do ceratin things or go certain places because of my tummy situation... but then they get mad at me. like my friends want to go on a CRUISE for like 4 or 5 days! away from home! and i told them that i don't think I can do that because i'm not going to be on any meds soon and my doctors need me to get sick again, and i really can't afford to get sick away from home, it's not safe for me. but my boyfriend took me an hour from home to the beach for the day to get away for our anniversary and they were like.. well you guys went on a vacation so what's the difference? It's like.. uhm it was only ONE day, and my tummy did hurt, but it wasn't like i was staying somewhere many many miles from home and for a week... i just don't understand! I'm trying my best! :yfrown:
 
xJillx- Wow and I always thought I was crazy or something, but I always noticed that I get worst if I'm stressed at times. I do notice as well that certain foods make me get diarrhea, like caffeine, too much sugar, too much dairy, and alcohol goes right through me so I can't even drink like that. But I haven't been diagnosed of anything, just that it's a anal fistula. I just don't know WHY OH WHY the wound doesn't seem to close and heal. And yeah I'm liking the forum already :thumleft:. I told my therapist I didn't think it would benefit me because even though it was possible for me to find people like me on the internet, no one around me gets me which is why I isolate. But I do see the benefit of being part of this...it's like at least I fit in here hehe. Thank you for your kind words, and wish you well.

Cat-a-Tonic- Thanks, and yes it turned out to be a anal fistula but they haven't diagnosed me with anything as of yet. With the research I have done through the years I figured it was a IBD or something like that as well. But they never told me anything, just that the cause of it was bacteria. But thanks for the welcome and I wish you well and joy for the holidays! :ybiggrin:

Dannysmom- Thank you, and no I haven't been to Mount Sinai although I have heard good things about that hospital in general. I should really check it out.:thumleft:


HAPPY HOLIDAYS EVERYONE! :dance:
 
Thanks guys! I am pretty excited, but not as excited as everyone else. I didn't see it as such a big victory because it isn't an official diagnosis, and it is a very general diagnosis, but I guess I am on the right road now. I've been doing a bit of research and it is treated just like lupus, has the same complications as lupus, and the same life expectancy. Its because MCTD is an autoimmune disease of three different diseases at once, one of them being lupus. It better explains why I have the GI involvement...maybe they think I have a mixture of crohns and lupus kind of, with inflammation of the tissue around my small bowel? I really don't know at this point.

Star, have you ever heard of this disease, or one similar to it, undifferentiated connective tissue disease? I thought of you when looking through all this stuff.
 
Hey everybody,

I'm relatively new here. Mostly been lurking, but decided it's time to come out and say hi. So I've been having problems with my stomach ever since February of this year and I'm still undiagnosed.

In February I had my stomach pain flared up within the space of a couple of hours. Whatever had caused it had been building for awhile but it hit me fast and hard. I ended up going into shock and landed in the hospital. They discovered I had extremely severe ulcerative colitis and after two weeks in the hospital they sent me home and told me it would get better with medication.

Well my stomach got better to a certain point and then got worse again after they took me off of prednisone and the pain spread through my whole left abdomin. Since then I've gone through too many blood tests to count, two colonoscopys, MRIs, CAT scans, Ultrasounds, and a laparoscopy to try to figure out what's causing the pain (all with no luck).

The pain is there 24/7 and I've just been worn down to barely being able to handle it anymore. I kept my mental drive running for a long time by looking forward to the next doctors appointment and hoping that they would finally find some answers, but with each negative test that comes back I find myself feeling like I'm struggling to keep my head above water and getting more and more tired.

One of the hardest things is that I feel like nobody in my life really understands what I'm going through. My friends have kind of taken my illness personally because they don't get that I'm exhausted all the time and that because I'm in so much pain I can't get together very often or do the activities we used to do (they seem to think it's because I don't like them anymore or I'm just blowing them off for the hell of it, which is not true). And I live with my parents now (because I can't work anymore till I get better), who have been very supportive but they try to ignore the emotional impact this has had on me or talking about any negative medical things.

I know I'm not alone in this boat here, but are there any things that have helped any of you cope with feeling hopeless about being undiagnosed? How have you guys gotten through the really rough times when the pain is just really horrible and you feel like all you have to look forward to is another day of pain?


BTW: Cat-a-Tonic sounds like you might have a salivary gland infection. I had one earlier this year and it started off just like you're describing (on the right side of my neck, just below the jaw). Then two days later I got a lump under my tongue. Not really much you can do for it unless you get a lump under your tongue. But to prevent that from happening, drink LOTS of fluids (as much as you can manage with your stomach) and suck on hard candy constantly. That might help it clear up on its own.
 
Hi Allie, Thanks for sharing the MCTD. My older son has an undiagnosed connective tissue disorder (many spine issues, raynoids, etc.). Because of this I often wondered if something like MCTD is what Danny may have too. We took him to a geneticist about 1.5 years ago but they did not even do any testing as Danny did not have any hypermobile joints. But, you've got me thinking about this again, thank you. (Both sons have low positive ANA) I am glad you are getting the prednisone again! I hope you feel better soon.
 
@Cat – I am getting a little stressed out this year. I did really well with doing most of my shopping early, but there are a few little things I need to get. Also, I am hosting Christmas Eve dinner with my husband’s family. They are easy to please, but I still stress out wanting everything to be perfect. Also, we have a group of friends coming over the following Friday, as well. I like getting together with friends and family, but the cooking and cleaning does take its toll.
Are you very stressed out? It could be the cause of your neck pain. It’s kind of funny, because my mom has been dealing with a very stiff neck for the past few days, and I am positive it is caused by stress.

@ Sunshine – I completely understand your frustration with your friends. Mine have been about the same. Luckily, we are all starting to settle down a bit, as we are approaching 30. So, our late nights and heavy drinking days are behind us. But they still don’t get I can’t eat out at greasy sports bars anymore. So, what I do is I tend to invite my friends over more. I control the menu, and I am in the comfort of my own home. I think you still live at home, but are your parents cool with having friends over? Maybe you can host a board game night. I know it sounds a bit lame, but once everyone starts to get into it, it can be really fun. We love playing Taboo with friends – it can be really fun.

@Allie – I understand why you aren’t thrilled about this recent development. It’s still scary stuff. But, hopefully, by being so aggressive to get an official diagnosis and treatment, you may be catching this thing quicker than most. And by doing so, let’s hope you’ll have helped yourself in the long run.

@TrueBlueWolf – So they diagnosed you with ulcerative colitis, but no longer think that’s what you have? If so, this sounds similar to my story. I was diagnosed with Crohn’s in July 2010 after my colonoscopy showed inflammation & ulcers in my TI and rectum. However, every test after has been pretty much normal (was on treatment), so my diagnosis has been retracted. My GI saying I have post-infectious IBS, claiming I had an infection at the time of my first scope and now I am left with IBS symptoms. Granted, I don’t think I had an infection in July 2010 as it was not an out of a blue thing. I gradually noticed worsening symptoms for a few weeks leading up to that point. However, your flare seems to have sprung out of nowhere, is that true? Could you possibly have had a bad infection?



Well, after an email to my doctor (3 weeks ago), phone message with her nurse(last week), and finally phone message with my doctor (Monday), I finally got a response thru email about wanting a flex sig in Jan:
Let me review your chart and see . . . I'm not sure how much it's going to add at this point to do another flex sig, but will let you know for sure by end of week.

Needless to say, I am a bit frustrated.
 
Jill, are you thinking of getting another opinion? I can imagine your frustration. Esp when you're still having blood and other symptoms. I am getting everyone's histories confused at this point - she is not the doc who dxed you, right? Although I must say to be able to get in touch with her via email is kind of nice (but then not really if it takes forever and you still have to end up calling). I have never had a doctor give me an email address. Seems like that would be a nice way to let them know how you're doing between visits without having to go through nurses and office staff filters. I hate feeling like it's impossible to actually talk to a doctor personally w/o an appointment and having my messages translated by other people who are not my actual physician.

Allie, I'm glad you are getting treatment. Hopefully pred will help like it did before. Sorry you're in so much pain.

Cat, sorry about your jaw pain. That sounds painful and irritating. I hope it eases up soon, and that it's nothing.

Alright, well, my husband and I are going to Savannah for our anniversary. So I'll probably be off of the forum for a few. But I'm thinking about everyone, and hope everyone feels better.
 
@May - Yeah, the email is great to have, but it takes her a while to reply if at all. You are right, this is my second GI, and not the doctor who diagnosed me. When I got diagnosed, I decided I should leave my local GI to see an IBD Specialist at a big University Hospital in Philly. Look where that has gotten me. I plan on seeing how this appointment goes, then I will decide if it is time to move on.



Have fun in Savannah and enjoy!!
 
Have a fun trip, May! I hope you feel well throughout your trip and have lots of fun and eat some yummy food too. Happy anniversary!! :)

TrueBlueWolf, welcome to the club. If I read your post correctly, you were diagnosed with UC but now your doctors are baffled by your pain & symptoms? If that's the case, it sounds to me like it might be time to get a second opinion! Did they see any sign of UC or anything else on all of the tests you've had? At any rate, what you've been through sounds pretty miserable but unfortunately all too common around here. I'm sorry you had to join us, but we understand what you're going through. As for your question, how do we cope and get through each day? Well, this forum certainly helps a LOT! Even though it sucks that others are suffering too, it makes me feel not so weird or alone to know that there are others who are going through similar things who can relate to what I'm going through. The advice and support I get on here is wonderful and I don't know how I would have made it through without the amazing people here. :D Other than that, just take it day by day and sometimes hour by hour or even minute by minute. I don't know if tomorrow will be a good day or a bad day, so I'm just going to focus on now - if I'm feeling bad now, I do what I can (hot bath, heating pad, favorite movies, snuggling my pets, etc) to cheer myself up or get some relief, and if I'm having a good day then I try to enjoy it as much as I can without worrying when the good feeling will end.

Thanks for your advice about the salivary gland - I usually drink a lot of fluids anyway, but I've been trying to drink even more than usual today, and I think it's helping! My neck pain has been a dull ache at its worst today and no sharp stabbing pains in 24 hours now so hopefully that means the infection, if it is an infection, is clearing up.

Loner, so they figured out it was a fistula but still don't know the cause? You might want to get a second opinion on that. Several people on the forum have been diagnosed as having Crohn's purely based on the fact that they had a fistula - I believe Flowergirl is one of those folks (Flower, please chime in if you see this!). I don't know a lot about fistulas (fistulae?), but my very limited understanding is that they don't really occur unless you have Crohn's. I could be wrong, but as other peoples' diagnoses have been based entirely upon the existence of a fistula, it sure seems to me that it's mainly a Crohn's thing. There is a sub-forum for fistulas & abscesses, you might want to check it out and see what others are saying in there.

Jill, I'm assuming you haven't burned your bridges with the GI who diagnosed you, so you could potentially go back to that doc if your currrent GI fails to impress at your next appointment? If so, at least then you know you've got a doc who's seen evidence of IBD in you and who knows it's more than "just IBS" and you won't have to start over from scratch. And 3 weeks for your GI to respond to you, there's just no excuse! My GI sometimes takes his sweet time getting back to me as well, but the most I've waited was one week and I was pretty upset about that. 3 weeks, I would be livid! I hope that either your current GI suddenly turns into a really good doctor at your next appointment or that you can find a better doctor or go back to your original GI.

Allie, even if it's not a diagnosis that you're totally satisfied with, at least you're getting some treatment and they're saying it's an AI illness and not IBS or fibro. And since you're getting pred it'll help regardless of which AI illness it actually is and that's a very good thing! I'm not familiar with the other drug you mentioned, plaquenel - is that one specifically for Lupus? I'm guessing it wouldn't work for Crohn's/IBD? So, if that one works or not, I guess it'll answer some questions one way or another about which illness(es) you've got, right?

As for me, I'm not great today. As mentioned earlier my neck pain has fortunately subsided, but my stomach is kind of a mess still. It's been iffy since sometime last week and I'm sure that stress is a big contributing factor. I hadn't gone to the gym in a week so I decided to go today. But my reflux was bad (even though I had taken 6 Tums and a Zantac before exercising) and my stomach itself was just unhappy and crampy and nauseous. I nearly vomited a few times and had to stop and rest quite a bit. The few times I tried pushing myself, my peripheral vision went dark and I felt dangerously close to passing out - not good! Especially considering that the gym I go to is in the basement of my workplace, I am apparently the ONLY person at my workplace who regularly uses the gym and hardly anyone even goes into the basement regularly. So, if I were to pass out or get sick/injured in the gym, nobody would find me for awhile. And since it's in the basement, I get no cell phone reception down there either so no calling for help in the event of an emergency. It's a really frightening thought. I want more than anything to be as healthy as possible, so exercise is mandatory for that, but on days like this it seems to be more risk than it's worth. :(

So anyway, I'm going to relax this evening and try to de-stress a little bit! Hubby's away today visiting a friend and my brother has been working a lot so I should have the house to myself and I'm just going to sit on the couch with a mug of hot chocolate and my heating pad and a good movie and I'll just veg out. I think I'll take a bubble bath too at some point. :) My tummy feels better just thinking about it!
 
Jill, I still live at home, and actually that doesn't sound lame lol it sounds like a great idea! and I might try to get that planned! :) Sounds like it would be comforting to be in my own house just in case, and still be able to have some fun. Although the other night when my friends came over they were all out in the living room and I was in the bathroom for like 45 minutes to an hour :( No one ever came in and checked on me, and I was sitting on my bathroom floor crying because I was so nauseated and I wanted to just throw up but I couldn't :( It sucks that this illness or whatever this is, is really something we all have to go through alone, like no one can help us really. Oh well, but yeah I'll try the board game night! :) thank you for the idea!!
By the way... May is very right... our stories are VERY similar with being diagnosed and having it be retracted and everything, and you even going to a special hospital too, like I went to the mayo clinic. very much alike! this is crazy! We all gotta start getting answers soon, this is just ridiculous... :eek:

May, HAPPY ANNIVERSARY!! hope your tummy is nice to you so you can have a joyful time!! :)

Cat, I like your game plan for the evening! Sounds very comforting. :)

TOMORROW MORNING AT 8AM IS MY GI APPOINTMENT TO GET MY GAME PLAN!!! ahhhhh really really really nervous!!! :runaway: I just don't want him to yell at me like my last GI doctor did... but hopefully he is ready for an attack plan to get this diagnosis sooner than later. but we'll see!
 
:ghug:

I'd say more, but my day was ridiculous and honestly I can't come up with the words. happy for the ones doing better, hoping the others start to do better, hope you all enjoy whatever holiday you may participate in.

cat I got your awesome card! thank you :)
 
Sunshine-I'm sorry that none of your friends came to check on you. I know that when I'm really sick or even just feeling down sometimes someone just coming to ask if I'm doing ok can mean the world even if they can't do anything because it shows they care and are there for me. But I know that a lot of my friends and family get uncomfortable with my pain and they actually think that by giving me space they're helping by not making me uncomfortable or intruding on personal space. It sucks, but maybe you could let them know you're open to them asking how you're doing in those sort of situations. Sorry not trying to overstep. I have no idea what your friends are like or how open they would be to feedback, just trying to offer a little advice.

Cat-Glad that salivary gland advice was helpful. If that's what it is it's much better to catch it before it goes to mouth. I spent over two weeks trying to fight off my infection once it progressed and it's pretty miserable.

And I know what it can feel like to feel like you're going to pass out when nobody's around. It can be pretty terrifying. I'm sorry that you had to go through that. Maybe you could ask around to see exactly when other people work out so you can choose a time when somebody else is down there or tell someone ahead of time that you're going to work out and ask them to come check on you once or twice?

Anyway, yeah they did a colonoscopy when I was admitted to the hospital. I was in really bad shape (I went into such bad shock in the ambulance that I stopped breathing and they were getting the defibrillator ready to use-the doctors said if the ambulance had showed up 10-20 minutes later there was a 95% chance I would have died). They had no clue what was causing it, but they did a colonoscopy that showed severe ulcerative colitis. Every doctor I've seen said it's the worst they've ever seen (it looks like somebody fired a shotgun several times and then poured acid over it).

So they put me on Asacol (a.k.a. mesalamine) and prednisone. They actually assumed that a medication I was on that was an anti-steridol (sulindac) had caused the damage because similar damage had been reported in something like .0001% of patients, so they took me off of that.

They did a colonoscopy a few weeks later and my colon was healing, but I still had severe chronic pain in my left abdomin. Then it turned out that I was diagnosed with a blood clot in my leg and several in my lungs that I had developed during my hospital stay for my stomach, so I had a long recovery for that and the GI doctor I have didn't want to treat my stomach symptoms while I was recovering/on blood thinners.

One weird thing that they found during that hospital stay was that I had CMV (cytomegalovirus) in my blood, which is extremely rare for someone without immune problems. Turned out it was also present in my colonoscopy biopsies when they rescreened for it. So they sent me to a specialist awhile later (at my last job-a security job-I had been cut and had blood to blood contact with someone who had HIV while breaking up a fight). He rescreened my blood a couple months later, but the virus wasn't present this time-another negative.

I finally got off the blood thinners and they did another colonoscopy to find "a perfectly healthy colon." So they sent me for a laparoscopy to check for endometrosis or any other abnormalities, but again they came up empty handed.

I personally think it's Chron's, but am just not following the normal symptoms or labs so far. I have B12 deficiency, D3 deficiency, liver abnormalities, joint pains, and cramping all of which started when I went into the hospital for the first time. So my GI ordered the Prometheus test, but he thinks I might have Ischemic Colitis. So he's getting ready to send me to Mayo or the Cleveland Clinic.

So that's my long undiagnosed story. They've taken half my weight in blood for labs and done a ton of tests, but so far everything keeps coming back negative, which is really discouraging as all of you can relate.

xJillx-The doctors did treat me for an infection. I had C. difficile when I was admitted to the hospital as well as the cytomegalovirus I mentioned earlier, but so far I seem to have been lucky in that my GI has never brought up IBS (or post infection). The running theory of what caused the damage to the colon is that the cytomegalovirus (CMV) weakened my colon and then I went on Sulindac, which normally doesn't cause such extensive damage but because my colon was already screwed up because of the CMV it really tore into it. I still have the diagnoses of ulcerative colitis, but it's being managed with Asacol (I tried going off it once with horrible results-blood, diarrhea, more pain, etc.)
 
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TrueBlueWolf, you are not intruding at all :) THANK YOU for the advice!! I will take any advice I can get! :) I think they may be uncomfortable with the situation as well, but they don't understand that it can be REALLY scary to be in the bathroom by yourself and not know what's happening with your body when you are in so much pain.. my boyfriend always will come check on me, but it's just weird my friends don't. and then when i come back into the room, they don't say anything, and honestly it makes ME uncomfortable at that point.. like.. yeah i've been in the bathroom sick to my stomach for the past hour, don't worry about me.. >_< like this is just an embarrassing situation to be in you know? like having problems using the restroom, like no one likes to talk about that and they really don't know how it is. they just think that after i use the bathroom i'll be fine, but it's not like that at all.. lol. little do they know! but yeah THANK YOU for your advice! Very much appreciated! :)
 
TrueBlueWolf, welcome to our little club. Your story sounds a lot like ours...finding nothing on tests is very common. :( With these kinds of problems sometimes you have to attack it a different way, and having to find a doctor that is willing to look outside the box is very hard. I hope you get on the road to recovery soon.

Cat, yeah, I will be going on plaquenil once I get back to Germany. The only reason they didn't put me on it now is because it is a long term drug that the perscriber needs to watch, and he does not like that he can't since I am moving across the world. They were worried since there will be a gap in between the pred helping and the plaquenil working, because it takes 6 - 8 weeks to kick in. Maybe they will put me on more pred in Germany while that stuff takes effect. Its a lupus medication, a maintenance med actually. When I finally did my research on MCTD I figured out that most just lump it with lupus because it acts and is treated just like it, since lupus is part of the problem. Its basically a milder form of lupus, but can create problems with the heart so you have to have sonograms to check for inflammation there reguraly. I actually have chest pain often, so this makes sense. >.< Yeah, I'm really glad I was at least given an AI label. That means the ER will take me more seriously, well, pretty much everyone in the medical field will take me more seriously. Which is great! :)

Dannysmom, you are welcome. :) Thats what we are here for, to help each other out! IBD does not cause a positive ANA, which is why I was taken away from the possible IBD diagnosis. Lupus can mimic IBD, with the same bowel inflammation, mouth ulcers etc. and MCTD includes Lupus. I have heard of certain IBD drugs causing drug induced lupus, however.

Jill, Thanks! I'm hoping I've caught it early enough too. 18 months in and out of the hospital, but I have felt generally unwell for 7 years now. Very frustrating! I was shocked he had actually come to a conclusion...I expected him to say he didn't have enough evidence and that I am fine like he always says. I guess the successful pred trial working helped a lot more than I thought it would. :)
 
Just popping in to say hi and check how you all are. It's coming up to a year since I found the forum and I remember the warm welcome and support, especially from Cat and Allie, when I joined the Undiagnosed Club. It really saddens me that there are still people whose situation is unresolved, but that you can remain so upbeat and supportive is an absolute credit to you all.
Allie, I am so glad that it looks like you are heading for the right diagnosis and proper care, after all this time being dismissed. Can only imagine the relief but also trepidation you must be feeling.
Wishing you all a very Happy Christmas and a New Year that brings health and happiness xxx
 
Allie, plaquenil takes 6 MONTHS to kick in. It seriously really did take that long for me to notice. All you need for taking that is an eye exam every 6 months to a year since it can deposit there and cause trouble. My Ophthalmologist was telling me the last time I went that this issue usually only starts to show up on people taking the drug for 5 years or more. just telling you this so that you don't wonder why its taking so long to work. :hug:
 
Hiya girls!

Just popping in to check up on you all!
I'm thinking of you all during these difficult times and hoping you all have a wonderful Christmas and here's to a better year in 2012 for all of us!
Lotsa luv
Joan xxx
 
Carrie630 said:
Allie, plaquenil takes 6 MONTHS to kick in. It seriously really did take that long for me to notice. All you need for taking that is an eye exam every 6 months to a year since it can deposit there and cause trouble. My Ophthalmologist was telling me the last time I went that this issue usually only starts to show up on people taking the drug for 5 years or more. just telling you this so that you don't wonder why its taking so long to work. :hug:
Click to expand...

6 MONTHS? I was told 6 - 8 weeks! O.O I cannot wait 6 months...if so I need to be given a better pain medication. ~.~ What are you on it for again? Maybe it will work faster for my condition....or maybe they will put me back on pred in Germany while the plaquenil kicks in. What kind of dose were you put on?
 
Helen and Joan, thanks for popping in and checking up on us! Happy holidays and merry xmas to you as well! :D

Carrie, glad you liked the card! :) How are you doing? You posted yesterday that you had a ridiculous day - I hope today is better! Did your area get hit by that crazy blizzard? It missed us fortunately.

Oh goodness, it takes 6 months for that med to take effect?? Allie, if that's true then I hope they give you pred/pain meds/something in the meantime! That's just a ridiculously long amount of time for a med to kick in. Do you have a rheumy or a referral to one lined up for when you go back to Germany?

TrueBlueWolf, what an awful and frustrating time you've had! I can't believe your colon went from looking awful to normal - good for your colon of course, but doesn't explain why you are still ill. I'm on Asacol too so I can relate to that! It works pretty well for me although if I eat the wrong thing or get too stressed then my symptoms come right back again. I'm glad to hear it works for you - it's a pretty mild med so it doesn't work for everyone. I'm not too familiar with Ischemic colitis - had to google it just now. Is it a chronic type of colitis? I couldn't really tell from my quick googling. If they can't find the UC that they once thought was there, and if it doesn't end up being Ischemic colitis either, then you might want to ask about microscopic colitis. My GI thinks I have either that or Crohn's (that's why I'm on Asacol, it works on the terminal ileum and colon - if I do have Crohn's, it's probably in my TI, and of course microscopic colitis occurs only in the colon). Microscopic colitis can only be seen on biopsy and it has a skip pattern, so sometimes it's hard to diagnose. But if you're having symptoms and everything looks normal then that's a possibility. It wouldn't explain why your colon was such a mess earlier, but it would explain why things look fine but don't feel fine now.

Sunshine, I'm sorry to hear about you having such a bad episode in the bathroom while your friends were over. That had to be upsetting. In a way I can see why your friends didn't ask if you were okay - they might not have even realized it was you being ill. All they knew was that you went into the bathroom and were crying - perhaps one of them thought they might have said something to upset you or something like that. I find that some people need to be reminded of my illness or else they forget all the time that I'm ill because I look fine. So maybe that happened with your friends and they thought they'd give you some alone time? I don't know. I'm sure they're good friends, but totally clueless about what it's like to be so ill all the time. Most people I know are the same.

I'm doing slightly better today but my guts still aren't great and my reflux is pretty bad. I'm already planning on packing some Ensure and bananas and other safe snacks to the various xmas gatherings as I don't want to take any chances with food. (On a related note, why do so many holiday foods have nuts in them??? Don't people know that nuts don't digest well and they freaking hurt!) I think I'll feel a lot better once the holidays are over. The stress of this season absolutely sucks!
 
Allie, I did some more reading up on plaquenil, and it takes six months to reach maximum benefit because its cumulative. My doctor put me on the maintenance dose at the beginning, but apparently you can "load up" with higher doses then taper down. If they start you off high it probably starts working faster. I also hope they keep you on other medication while they give the plaquenil time to work. I take 200mg twice a day which is the standard maintenance dose.

I'm not fully diagnosed so really, what am I taking it for? It's for SLE and RA. I seem to get less inflammation, less pain, less hair loss, and (somewhat) better quality of life. the fact that it works seems to tell me its an AI, but you know how hard it is to get diagnosed with anything. I may end up having to change my rheumy. I really like her, but she's so anti-medication that I feel a little underserved sometimes.

Cat, my day is better. I didn't leave the house! :) It's raining here, but that's it. I hope we don't run into snow on the drive to my parents. Did your card arrive?

I'm having anxiety issues about the holidays because nothing is resolved with the family drama. As a result, I haven't sent cards to any family other than my parents. I'm bringing cards home with me. I don't know what to do about phone calls. Heck, I don't even know my grandfather's current address or phone number, so I guess I know what's going to happen there. :/ I am stressed about this. I'm trying to ignore it as I can't do anything about it.
 

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