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Well I finally got my message and of course I was worrying over nothing, but I can't help it the way I have been treated by some departments there!

Rheumy has reviewed my notes and is waiting on some opinions from other Drs. He has requested a bone scan for me on an urgent basis and then will see me in clinic to discuss (I have an appointment booked anyway for about 5 weeks). This presumably is to focus on my shoulder pain.

Now I am in two minds here. On the one side I have always thought not enough attention/tests on my shoulder have been done so that is good they are looking at that in more detail.

On the other side I don't see how a bone scan could dx any tummy issues, since we all know it isn't IBS. So I am worried in a way they will pick up something in my shoulder and just dismiss the rest of it as IBS. Really worried in fact.

So I see GI in a weeks time but I don't see how he will be helpful. And MP on Friday. I am really hoping he can help me get one or more of the tests I have been turned down for.
 
I guess my only advice is to try and be positive. It's easy not to be when you've been blocked at every corner it seems. You've definitely got a conscientious doctor in your camp who's getting you a test maybe you didn't even plan on, so try to focus on that instead of what may or may not happen with someone dismissing tummy issues as IBS. Maybe he is looking at things from an entirely different viewpoint and with different possibilities in mind, which could be beneficial. In any case, I'm glad you are getting some testing done, no matter what it's for. And you never know how the results of this bone scan could open doors to other tests that you might need.
 
Mayflower537 said:
I guess my only advice is to try and be positive. It's easy not to be when you've been blocked at every corner it seems. You've definitely got a conscientious doctor in your camp who's getting you a test maybe you didn't even plan on, so try to focus on that instead of what may or may not happen with someone dismissing tummy issues as IBS. Maybe he is looking at things from an entirely different viewpoint and with different possibilities in mind, which could be beneficial. In any case, I'm glad you are getting some testing done, no matter what it's for. And you never know how the results of this bone scan could open doors to other tests that you might need.
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Yep I am trying to be positive and focus on the things you say. I am certainly pleased for a more in depth look at my shoulder, since from the pain it affects the bone, no way is it just the muscles! Although I have to say ironically, I haven't had a painkiller in months as it hasn't been bad enough, been needing them daily for 2 years lol, but the underlying problem is still there I can feel it, is just not so bad right now.

Didn't expect any more tests this soon either so quite pleased about that, sounds as if it *may* happen before Christmas which has really shocked me.
 
Star, the shoulder and the guts may be unrelated - or they may be related, who knows. Maybe finding out the cause of your shoulder pain will give you more clues as to what's going on in your guts. Maybe some type of arthritis (reactive? Ankylosing Spondylitis?) that's commonly found in conjunction with IBD or something like that. Or, maybe once they find out the cause, it will be a relatively easy fix. Physical therapy helped my hip quite a bit, and now that they've determined it's not arthritis after all but bursitis instead, I know that stretching is the best exercise for my hips and I feel nearly normal again, very little pain. At any rate, I don't think testing your shoulder is going to lead them back to an IBS diagnosis. At least I hope not!

I haven't seen much in the way of updates from Sunshine. She hasn't posted on facebook in several days. I hope she's on the mend!

How's everyone else doing? I'm pretty well, still stressed about the holidays and busy with work, but otherwise feeling pretty good. I'm about a third of the way through skien #5 on the blanket I'm making for my cousin so I should have it done by xmas. I still have to make and send cards though! Eek! Plus I have to finish my shopping and wrap everything... stress! I enjoy the holidays, but I also enjoy when they're over and I can relax again. Hubby's stressed too, he's technically part-time at the portrait place but he is working 40 hours this week (and that's assuming they actually let him leave on time - often, they're still really busy when it's time for him to leave and they sometimes keep him an hour or two late). And of course he's got his other job teaching but that's only like 3 hours per week. Makes me kind of glad I "only" work 40 hours per week! At least my brother is moving out - he's been cleaning and organizing like a madman and seems to be packing, and he took 4 bags of stuff to Goodwill yesterday. Yay! I'm SO looking forward to when the holidays are over and I can relax in my house without my crazy brother being there. :) That'll be my xmas gift - rest and relaxation and de-stressing!
 
Cat I am pleased to hear your brother is moving out, I know how much that has been stressing you out, so he finally got his butt into gear hey?

Good news, Rheumy has asked to see me Monday, which I am really glad about, because I wondered all night where he was going with all this, because it has really come out of the blue and I am puzzled at the urgency. I did have bone markers tested in my blood in September, that is the only thing I can think of. Although they have been tested several times previously and always been normal. I am bemused anyway but really really pleased I can see him soon. So I can see why the bone test and how/if that relates to the stomach issues, and what is the current thinking in that area. If he does blood I will ask for the ferretin to be done again as had more black bloody mucus.

They told me last time they can't be 100% sure the two issues are connected. But after the shoulder pain started my stomach problems went drastically downhill, and the med that had been working became ineffective, that much I do know.

So I have Rheumy @1:30 and Gastro @3:15 so I expect I will have to ask to take my paper notes with me when I leave Rheumy lol (there is alot on computer but they mainly maintain a paper file at my Hospital, scanning in anything they deem neccessary I think).
 
Star, yeah, I'm so glad my bro is moving soon! He definitely has been stressing me out. Of course, the majority of the time he lived with me, he was taking drugs and working a slacker job and was pretty hostile to me at times. Just recently he got a good job, seems to have quit drugs, and is a lot nicer to me lately. Why did I have to live with the slacker/stoner version of him - why couldn't this nice mature version of him have been the one to live with me for the past year and a half??? Oh well, can't undo the past. I am glad he's moving out and hopefully finally becoming a mature adult. (He's 26, took him long enough! Ha ha)

Glad to hear you got a quick rheumy appointment, I hope he can give you some satisfactory reasons as to why he wants to do the bone scan. So by this time next week you'll have seen your MP, rheumy, and GI? I hope some forward progress can be made with all 3! Good luck and please keep us posted - in particular I hope your MP can get you some of those tests that were rejected! Fingers crossed for you!

I hope Sunshine's okay and Allie too - haven't heard from either in a little while. I worry about you guys when you don't post! Especially when I know one of you is in the hospital. :( Sunshine, keeping you in my thoughts and hoping you can get to feeling tons better now that you're diagnosed and getting care! Allie, I'm assuming you're busy with end of school stuff - hang in there, I hope the stress isn't causing too much horribleness, and I hope you can also get properly diagnosed really soon. You see your rheumy once more before going back to Germany, right? If it were me, I'd go to that appointment armed with all sorts of info about Lupus, the diagnostic criteria, info showing that pred doesn't work for IBS or fibro, etc, and demand some answers!

I hope everyone else is doing okay. It worries me when things slow down in the club - I hope that means everyone is feeling well enough to be away from the computer!
 
I'm here. I've been icky and retreating into crafty goodness so I can forget how much my body sucks. I feel bad for neglecting all of you, but I've been putting the laptop to the side when I get home from work so I haven't been around.
 
Carrie, sorry to hear that. :( You've got some upcoming appointments, right? Any tests on the horizon? I know you mentioned stuff like dentist appointments too, I hope some of your upcoming appointments are GI-related can point you in the direction of a diagnosis. It seems like you've been suffering with no end in sight. :(

I did a stupid thing today. They had a pizza day at work. I was just drooooooling over the smell, it was heavenly. So on my lunch hour I caved to temptation and went out and got a slice of real pizza. (Sometimes at home we'll make a special pizza for me, using goat cheese as I just cannot digest regular cheese.) I took a bunch of lactose enzyme pills before eating my slice of pizza, but even so my entire digestive system is unhappy with me. Immediately after finishing my pizza, I cramped up and got nauseous and my acid reflux went into overdrive. Fortunately I have plenty of Zofran and Tums which are helping quite a bit, but boy was it not a good idea for me to eat something that I know is a trigger food. I'm kind of glad that I felt the consequences immediately - hopefully that will remind my brain the next time that I smell something delicious but dangerous!
 
I'm about to be in the same boat as you I guess Cat ~ I'm attempting to make homemade pizza tonight :)
My niece made it the other day and I can't stop thinking about it haha.
Oh well...I've only been eating bite size meals like a mouse this week, so I'll probably end up not really eating it! :/

Sunshine was discharged from the hospital this afternoon, and she seems to be feeling much better than when she was admitted :)
Hopefully she will come and update you all soon!
 
Tracy, thanks for the update on Sunshine! So glad to hear she's feeling better and has been discharged, that's wonderful news. :) Enjoy your little bites of pizza, I hope it doesn't affect you like it did me. I've taken about 10 Tums now but am still experiencing some reflux, bleh!
 
oh I have pizza in my head now..

I had a bunch of blood tests this morning for my endocrinologist appt next Monday. I also have my rheumatologist and upper endoscopy on Wednesday then Thursday. I went to the ophthalmologist last week for my plaquenil check which was fine, and I got a new prescription for glasses. I saw the dentist recently and had an exposed root(?) where my gums had receded so he had to bond it. I'm not expecting much, except perhaps another follow-up endoscopy appointment :p
 
Ooh, I love getting new glasses. My vision insurance isn't the best, though. My coverage only allows me to get new frames once every two years. I got new frames in Jan 2011, so I have to wait a little over a year before I get new frames again. I do get to get new lenses next month though which is good because my current ones have a big scratch (I have no idea how, either - I try to take really good care of my glasses).

I hope one of the tests you're having can shed some light on things. Do you know what blood tests they're doing? Just typical stuff like CBC or are they looking for specific illnesses with the tests?
 
Hey everyoneeee, i've been very very sick the past week. I could not stop throwing up or having diarrhea. On Friday morning I had gone to an emergency appointment with my GI, and he gave me prednisone and pentasa to start taking for crohn's, but I started taking it and since I was so sick it wouldn't stay down.
Ended up going to the hospital on Saturday morning at about 7am to the ER, they did an Xray of my abdomen and blood work, and it showed that all of my electrolytes and blood levels were all dangerously low, so they admitted me to the hospital... put me on some nausea medicine and it didn't work. I kept throwing up.
they then put me on a potassium pump, gave me sodium, glucose, and prednisone steroid injections through my IV every few hours. I was on a liquid diet, and then everyday upgraded my diet a little bit until I could finally tolerate semi-solid foods, like eggs and a pancake for breakfast.
I'm feeling much better now. Since the prednisone steroid injections were higher than my dose that my GI doctor had originally prescribed I had to get a new prescription of it. I was only suppose to be on prednisone for about a month.. but now I will be on prednisone 40mg and tapering down for about 3 months. I'm hoping that tomorrow when I take the pill versions of pred that my tummy will be okay and not get too nauseated like it did the first time i tried last friday.
I was also prescribed from my GI doctor, Pentasa, but they are HUGE, so I need to call him about that, because my reflux is just awful with big pills. Maybe I can do shot injections or something, or even if he gives me a smaller dose of pentasa, but just have to take more pills during the day. that would work too, but i'll have to call him about that.
So anyway... just letting you all know that I am officially diagnosed with Crohn's... and my life is changed, and I'm upset about this.. but i know that now if I can't get out of a flare, that I can go to the hospital and they can help if it's out of control like it just was recently. Just have to change my lifestyle a little and the way I eat to avoid flare up type foods, and of course take my medicine regularly. God wouldn't give us more than we can handle, but I think he trusts us too much sometimes lol.. :/
The past 4 days in the hospital was sooo hard, I have bruises all over my hands and arms from them trying to get my tiny veins to work.. and then of course they had busted a few of them too... :/ but I'm alive and I'm better than I was a few days ago, so I'm thankful for that. Hope things get better from here! :)

I miss you all! I kept thinking about you guys when I was in the hospital! My boyfriend was super sweet, and stayed with me every night that I was at the hospital. :) but I wish that my undiagnosed friends were with me when I was there. I could of used a bunch of hugs! <3

How is everyone doing!!?! :)
 
after all of what i've been through the past couple days, I still feel nauseous, will this nausea feeling ever go away?! :/ Oh well, I guess one problem at a time, right? Today will be my first day taking prednisone by mouth since I got sick last friday... o_O
 
Sunshine, I am so glad to hear from you. It sucks to have Crohns but really, it's just putting a name to what you already were dealing with. It's a technicality that equates to your getting treatment to help you feel better. I hope you can keep your pills down this morning and start really feeling better. You have really been through it!!

Thinking of you,
May
xx
 
Hi Sunshine, you've had a rough week haven't you! I'm so glad you're getting proper treatment finally, and I hope you figure out a way to get the Pentasa down. I haven't been on that particular one myself but I have heard they're huge pills. I hope you can figure out something that works! Are you supposed to take it with food? I am on Asacol which is a very similar med and I'm supposed to take it 3x per day just after I eat. So maybe having food in your stomach when you take the Pentasa would help keep it down if you haven't tried that already? Personally, sometimes it's hard for me to eat 3 meals per day just to take my Asacol, but I've found that even drinking an Ensure or having a little food like toast is enough. (Supposedly Asacol can cause nausea if you take it on an empty stomach, so Pentasa might be the same.) Anyway, good luck with it, I hope you can figure out a good system for keeping it down! Did they give you anything for the nausea? I hope things continue to improve. Sending you a big hug!
 
Great to hear from you Sunshine :)

I decided to cancel my GI appointment to focus on Rheumy. Too much bother with notes etc and if I get upset or angry I am not going to want to go see GI after. I now go to see him in May which is fine with me!
 
Sunshine, what a ride you went through at the hospital! :( The good news is you are out of that prison (it feels like one anyway) and you are on proper meds. The pred should help a lot! :) And you have an official diagnosis...YAY! Remember, its not that you now have crohns...you had it all along, you just needed a name for it! I hope the bruises clear up soon...when I was hospitalized last April my veins did the same thing, but mine are big. The bruises took about a week to heal. They were so ugly!

I'm sorry I haven't been around guys. Crohnsforum usually emails me when someone posts on this thread and the emails stopped coming. O.O I have been so busy I forgot to check it myself.

So I have a new symptom...well, not really new, just now its showing. My left wrist is twice the size of my right wrist. The joint anyway. There is a huge bulge coming out of the side of my wrist. >.< It hurts a lot as well. I've tried aleve and tramadol to try and get it to go down, but it won't. None of it is really touching the pain either. Whats weird is I'm right handed, so I really don't think this is from overuse of my hand...even with crocheting its my right wrist that does most of the work (which is why I have carpel tunnel in that wrist). I'm hoping this is just more proof something is not right. I have one more rheumy appt before I go back to Germany and I am praying that a miracle gets me some kind of diagnosis or at least have them saying something is not right. I don't want to go back to Germany with nothing to show the military doctors.

My CT scan is tomorrow as well. just came back from getting the prep....and it isn't what I thought it would be. Every CT scan I've been given a clear liquid that tastes like lemonade....well, this stuff is the barium like the SBFT. YUCK....I do not want to go through the toilet issues I did last time...in a sorority house...oh well. :(
 
Thank you girls.
I took the prednisone pills today, but honestly I am not feeling better. i feel almost worse than how i would normally feel. dizzy, nauseous, cramping, hot flashes, just everything.. :( It was really hard to get the pills down, and i ate an eggo before I took them, and then I took them with yogurt to get the taste to lighten up. but my tummy really feels unwell. :(
I called my doctor and he prescribed nausea pills but i can't leave the house because my eye sight is awful from the pills because i feel light headed and unwell.
I can't take the pentasa because they are HUGE, i have to talk to my doctor about other options of pills, like maybe asacol or something that's a little smaller, or maybe shot injections of something. My nausea/refulx is just awful and i'm trying SO hard, i feel so stressed out from all these pills and side effects that i've been getting. :(
I just want to feel normal... :'( and my tummy is SO bloated!! I have a heating pad on it, but i think i'm gonna have D soon.... :( i feel like this is all so much for me to handle.
sorry for ranting so much and complaining! I'm really really really sorry i feel bad about complaining, but im just not feeling better :'(
 
Cat, the tests are mostly hormones and cbc. Nothing that will tell me anything about what's wrong.

Sunshine, I hope you start feel a little better again. I'm glad you got out of the hospital!
 
Allie- what you have described about your wrist is exactly what my left upper arm looks like. I just woke up one morning and had that shape you describe there. And of course it was downhill for me from there.

I had an ultrasound and 2 mri's but they didn't find anything, then it got overlooked when the tummy became problem number one. I am hoping this bone scan finds something (if I get it of course).
 
That's really weird...how can they not just look at it and not know somethings not right? When I put my two wrists together you can see a definite difference. What have they told you is the issue?
 
allieinwonder said:
That's really weird...how can they not just look at it and not know somethings not right? When I put my two wrists together you can see a definite difference. What have they told you is the issue?
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Oh the usual... they don't know/ not sure/nothing showing on tests. Rheumy did say last time they can't even be sure the two are linked... well I can tell you (and I told them!) that tummy issues went downhill after that started.
 
Sunshine, I'm sorry to hear you're still doing so badly. You probably should call your doctor and see what your other options are. They found Crohn's throughout your small intestine, right? If so, Asacol probably isn't an ideal med unfortunately - my GI told me it works in the terminal ileum and colon, so most of the small intestine wouldn't be touched by Asacol. But surely there are other options besides taking huge pills, please do call your doctor and let them know what's going on. Big hugs and I hope you can get a better plan of action soon!

Allie, that's scary about the wrist thing! I haven't had any symptoms like that (yet - knock on wood). I have no idea what it could be, but I hope you (and Star too!) can get it figured out. Good luck with the CT tomorrow! Sorry to hear you have to drink barium. I guess on the bright side, at least it's not prep? But it still sucks, yuck. I've avoided drinking that one so far (haven't had a SBFT yet and for my CT I also had the lemonade mixed with contrast) but of course I've heard stories on the forum and Star's thing about buying 10 toilet brushes stands out in my mind! Anyway, good luck and I hope between the CT and the wrist that your rheumy is more willing to diagnose you.

Star, that's interesting that your upper arm is inflamed just like Allie's wrist is. And it seems too big of a coincidence that you both have undiagnosed bowel issues as well. I would imagine they'd have to be related but I haven't heard of such a thing. Allie, do you know if limb inflammation like that occurs in Lupus? I haven't heard of such a thing happening with IBD but then again it seems that IBD can affect most every body part. Interesting! I hope that if one of you can figure it out then the other one can use that info to get diagnosed as well!

I'm doing better today, mostly recovered from the pizza incident, ha ha. Still having some acid reflux because of it but otherwise feel okay. I hope everyone else is well!
 
Yeah, I'm trying to not think about the fact I will be cleaning my toilet for the next few days because of this. Last time I was in my own house, so I'm not happy I have to go through this in a sorority house. Oh well, thank goodness my roomate is never here...

Yeah, inflammation like this is one of the factors for Lupus. One of the reasons he didn't want to diagnose Lupus is because my joints felt normal even though they hurt. They sure don't feel normal anymore! :( My left one feels like its on fire....I really don't want to crochet because of it, but I have tons of orders to work on, and three of my own projects for Christmas presents. My brace isn't helping at all either. I wonder if they did a blood test now if my CRP would finally be up. o_O

Star, maybe we both have some weird autoimmune illness they don't know exists yet....>.<
 
Allie, I had a CT scan with Barium contrast, and it was not bad. I didn't even notice any white poop. I don't know if it's substantially different from the SBFT stuff, but I was expecting something weird, and it never happened. Only wicked, explosive diarrhea. So you may still have to clean your toilet afterwards. :)
 
Ha ha thanks Mayflower. Maybe it isn't as thick? Hopefully it won't taste as bad as I'm expecting either...I want to get a straw and just suck the stuff down!
 
Allie, that's interesting, I wonder if the joint inflammation would make your CRP rise. When my CRP was high (and only slightly high, I think the highest it went was 17 and I was told that anything between 0 and 10ish is normal), it was during the time that my hip was hurting and right around the time that they mistakenly diagnosed me with arthritis. That diagnosis was later changed to bursitis, which is inflammation of the fluid-filled sac thing around the joint - so it's still inflammation and could still probably raise my CRP. So I don't know if my guts ever made my CRP rise or if it was my hip that was doing it all along! But since your CRP has been normal all along, if it turns out to be raised now then surely it must be the wrist that's causing it, right? Definitely worth requesting your rheumy to look into at least.
 
allieinwonder said:
Ha ha thanks Mayflower. Maybe it isn't as thick? Hopefully it won't taste as bad as I'm expecting either...I want to get a straw and just suck the stuff down!
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I can't promise the taste won't be bad - mine was "lemon flavored" and it wasn't so tasty. They told me to drink it cold, with a straw, and not to grimace. Apparently that actually affects the gag reflex or something. It did help, b/c I have a really sensitive gag reflex.
 
Cat-a-Tonic said:
Sunshine, I'm sorry to hear you're still doing so badly. You probably should call your doctor and see what your other options are. They found Crohn's throughout your small intestine, right? If so, Asacol probably isn't an ideal med unfortunately - my GI told me it works in the terminal ileum and colon, so most of the small intestine wouldn't be touched by Asacol. But surely there are other options besides taking huge pills, please do call your doctor and let them know what's going on. Big hugs and I hope you can get a better plan of action soon!
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Yeah, all through out my small intestine is where my Crohn's is located..
I keep calling my GI but the nurse who keeps taking the messages i swear just either doesn't care, or is just not smart lol.. I'm like i just left the hospital and I need options! I can't be having anxiety over taking all these pills and not feeling well. I know there are plans of attack that will work just as well, I just would like to know my options. All of this happened so fast so everyone's just freaking out including my small intestine!
I'm going to keep calling my GI everyday, because I need an appointment sooner than the 14th, so that I can either get something else instead of pentasa, or have other options at least to think about. I'm stuck with the prednisone for the next 3 months because of the hospital infusions i got, but I just need to be comfortable with what's going on, and I just am not yet :(
I don't think I'm being too picky really... :( It might seem like it, but i just know my body and taking pills just might not be the right attack method with my body. but all I can do is just wait to see what my GI thinks.
Hopefully tomorrow morning i'm not as nauseated and can handle the pills without feeling sick to my stomach and unwell for most of the day. *prays
 
okies i went for my endo and colonoscopy.... they said they took lots of biopsys and that my colon was red.... red? does that mean inflamed?
he also told me that i will get my results in 2 - 3 days... im like freakin out.... i just wanna feel better....
also that the rash/skin problem he asked if i had diabetes... and no i dont....

i see a rhematologist today at 4pm and im gonna talk to them about my joint/muscle pain and fatigue and skin lesions/sores and now a cough....

i dont know.. i feel like giving up... i cant even leave my house anymore and it seams like no one is taking this seriously..... oh well im praying for help
 
Hang in there! Sounds like your doctor found something, so treatment may be just around the corner. No, a healthy colon would not be red.

Hope your rheumy appt goes well.
 
I had to take a sick day yesterday. I went to bed at 8pm Tuesday and stumbled out of bed at 8am Wednesday for approximately a half hour. Long enough to tell my boss I couldn't do it. I'm fighting nausea and the inability to eat. again. I'm sure the GI will tell me my ulcer is worse next week. Or watch him tell me everything looks great because nothing ever makes sense with my body :p

You know I'm in really bad shape when I don't even have the energy to color.

I've really given up on figuring out what's wrong with me. I can't handle all this ridiculousness. all these doctors stress me out. they take time out of my day and give me nothing in return except for more pills. No one seems to be in any hurry to actually diagnose me or figure out what's wrong. I'm not going to be able to afford to see a specialist for the first few months of next year anyway (due to my health insurance type I will need to save up money into my hsa first). I'm just grumpy ms. grumpinpants I guess. it makes for a pissy day when I can't even eat rice chex. I always wonder what would happen to me if I stopped drinking coke. would I starve? how on earth does coke and a vitamin d pill keep me going anyway?

eta: yes I do manage to get some food in me off and on, but not a normal amount.
 
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I'm sorry you are feeling so bad Carrie. :(

I'm in the same boat, I'll start at the beginning...

So I got up at 6 this morning and drank half the barium just fine. Got it down in 4 minutes, I was pretty proud of myself. Tried to go back to sleep, but when the barium hit whatever is causing my pain it skyrocketed, and I couldn't sleep. Got back up at 9, and tried to drink the rest, but it just didn't happen. I had one of my favorite TV shows on, and I had a straw, but because I had a bad reaction to the first half I just kept throwing it back up. So I gave up and hoped what I did get down was enough. Went to the hospital, and I was only there for a total of 45 minutes...including checking in, getting my hospital band, and getting 2 different CT scans done. Wellstar is a nice place! They did one CT scan with IV contrast and one without. When they did the contrast, I had the warm feeling, but I also felt pain throughout my entire body and I felt like I was going to pass out. Once the technician came back in and asked me if I was ok, I told her I wasn't. They had me lay there for awhile, then they sat me up and had me eat graham crackers and drink some coke before I left. I felt so embarrassed that I reacted the way I did. I still feel really crappy...my whole body hurts and I feel really lightheaded. The technician told me I probably just was coming off an adrenaline rush from what was going on, but that makes no sense...I have had a ton of tests in the past 18 months, so I wasn't nervous at all. But I've never had this reaction to a CT scan before. I'm hoping if I just rest today I will get over it. >.<

I'm really hoping these scans showed something!
 
Carrie, don't give up! I'm sorry you are not feeling well... :(

Sorry Allie that you had such a bad reaction! that happened to me with the CT scan I did a month or so ago too, it's crazy! It made my chest feel really heavy and tight. But I hope your pain that your feeling is a sign that they will finally find something! I'm praying for you.. <3

I took my prednisone pills this morning and... THEY STAYED DOWN!! :) No vomiting today! Hope it keeps up! I feel good enough to go walk around and stuff, so I may be going to the mall for a little with my boyfriend! :)
Having a good tummy day is awesome, when the past week was just awful!
My GI appointment is next week on the 14th, and I will probably be talking about treatment options and other pills he needs me to take to feel better.
 
YAY! that makes me so happy Sunshine!!! :)

Yeah, now that I've been talking to others it seems like my reaction isn't that uncommon. I'm glad I had nothing else scheduled for today. Now just to wait till the 13th for the results!
 
Allie, do you have any shellfish allergies? Do you have any strange allergic reactions that seem to come out of nowhere? I hope the ct scans show something!

Sunshine, I'm really glad you were able to get your pills down today :)

I've taken three naps at work so far today. I feel so useless. I'm sure I'll get over myself.
 
Nope, no shellfish allergies. o_O The only allergy I have is to caffeine, but I mostly grew out of it (can't have large amounts, but when I was a kid I couldn't have any). No allergies have popped out after that, and I had a ton of allergy tests as a kid.

Naps at work don't sound like they would be very helpful. :( At least the day is almost over!
 
Jessyy, I hope the results of your colonoscopy can get you a diagnosis and some proper treatment! Redness definitely isn't normal and I'm glad to hear they took a lot of biopsies. Fingers crossed that one of those biopsies contains the answer you need!

Carrie, I'm sorry to hear you're having such a crappy day (no pun intended). It's the pits on those no-food days. (Side rant - why can't the "I don't want to eat anything" days fall on colonoscopy prep days? I want to eat EVERYTHING when I'm doing prep!) Can you stomach something like Ensure or Boost? I pretty much live on Ensure and Gatorade when I'm in a flare. I'm glad to hear you can at least do Coke, at least you're getting some calories on a no-food day. Hang in there, sending you a big hug and some happy thoughts, and I hope tomorrow is a lot better.
Edited: I just re-read your post and I must have missed the part where you said your crappy day was yesterday. In that case, I hope today AND tomorrow are much better days! And it's good that they let you nap at work! They have a sick room at my workplace, it's a dark empty office with a cot (I brought in my own pillow and blanket) and when I'm ill I can go lie down in there for a bit. It's nice to have a workplace that is understanding about our illnesses and appreciates that we try to come in even on not-so-great days.

Allie and Sunshine, add me to the club - I've also had a bad reaction to IV contrast! Apparently they use a different contrast for MRIs than they do for CT scans. Although I did fine with the CT scan IV contrast, the MRI IV contrast made me super dizzy, like I was going to pass out, and I was in the MRI machine when the reaction hit. I'm normally not claustophobic, but once the awful feeling washed over me I freaked out and yelled at them to get me out of the machine! Fortunately the feeling didn't last long and the staff was really nice and they got me calmed down and I was able to finish my MRI, but it was really scary for a moment. One of the techs was really proud of me - she said that, although bad reactions to the contrast is pretty uncommon, most people who do have a bad reaction will vomit in the machine. I didn't barf, so everybody was happy. :) But if I ever get a CT or an MRI again, I will definitely be requesting no IV contrast if possible, especially not the kind they gave me for my MRI.

Allie, I hope all the awfulness of today is worth it and they find something to go on from your CT scan. At this point, anything would be nice! I don't know much about Lupus, is there anything that would show up on CT? Like organ inflammation or anything like that?

Sunshine, so glad to hear that the pred stayed down, and it sounds like it's starting to work! That's one of the great things about pred, it works FAST. I hope it works really well for you and can get you back to feeling like your old self again without too many side effects. Have fun at the mall!
 
sometimes naps at work help and other times they don't. If I need a nap then obviously I'm having issues anyway, but it depends on what made me go nap. Say I go nap because I'm too nauseous to think: I might be ok after I get up if the nausea is passed. If I go nap because I am fatigued then it usually only helps for short periods of time interspersed with large periods of time where I'm fighting to be productive. I just hope tomorrow is better! for all of us.
 
Cat, I've really come to hate ensure/boost, but you are right, I need to start using it again.

I had an unpleasant although not bad reaction to the iv contrast. My grandpa was horribly allergic to the contrast in the past so I did an allergy protocol before the test which probably lessened the side effects.

afaik, Lupus itself doesn't show up on a ct scan in any way, but other issues potentially caused by lupus can show up like ischemic bowel disease (I hope I spelled that correctly)
 
Cat, I'm sorry you had the same reaction. I also wanted to scream at the technician to stop the test (even though I wasn't inside a machine like an MRI), but I made myself keep quiet and keep my eyes open even though I just wanted to let go. My technician was super nice too. I felt so bad taking a coke and crackers for free...which is so silly, I was in a hospital where they normally feed people three meals a day! :p

As for what it might show, yeah, they are looking for inflammation of organs, including the bowels. Lupus can attack any organ, and the connective tissue in between organs. The thing is, they retested my ANA at my past appointment, with a different method, and it was negative. :( But they also found some weird bacteria in my system, and they assume its because I was on my period. Anyway, since my ANA was negative that time, I'm sure they are going to not even think Lupus anymore...but since it was postive before, doesn't that mean something? Honestly, I have no clue at this point. I'm trying to release my control on this whole situation and see where this all goes at this point. ~.~

My pain spot is VERY warm to the touch today...maybe that means it showed something! I really think at this point my last CT scan (done in the ER) wasn't looked at well enough. My first one showed so many things that wouldn't just go away (like scar tissue on my lungs), and then that second one the doctor in the ER just said "you're fine". Hopefully doing this out of the ER will make it where they will take the time to look at every nook and cranny.
 
good luck, Allie. ANA can go up and down, and you can have a negative ANA and still have SLE. Not that it means anything in the long run, diagnosis is always up to the doctor doing the evaluation. The only medical professionals who seem to believe I may have an autoimmune disease are not my specialists.
 
Allie, my guess would be that when you had the CT done in the ER, it was probably not a specialist who looked at it. My hubby had a CT done in the ER back in the spring as he was having a horrible attack (turned out to be kidney stones). His doctor in the ER was VERY young and I'm sure he was a resident or an intern or whatever the title is for young new doctors. This doctor was fortunately able to spot kidney stones on the CT, but then he paged the on-call urologist to see what he should do about it. So, my guess would be that your ER CT was probably also looked at by a non-specialist, but the one you did today should be looked at by someone who really knows their stuff. I'm hoping that's the case anyway!

Carrie, tomorrow's GOT to be better - it is Friday after all which means we can all hopefully have a nice peaceful relaxing weekend. I'm hoping to finish my xmas shopping, make cards, wrap all my xmas gifts (if I'm feeling ambitious), oh yeah and watch movies and crochet and do not much of anything, ha ha. I've still got a couple skiens to go on my cousin's blanket so I'm hoping to get some good progress made there, and I will watch some holiday movies while I crochet. I hope everybody else has a good day tomorrow and a relaxing weekend.
 
Cat, I agree. The doc that did the whole thing thought I was there as a drug seeker....I had trouble just getting some tramadol on my way out. What drug seeker would be dragged by their father to an ER? It made no sense to me. ~.~ I'm going to be crocheting a bunch now too...I've got a blanket order (an extra large one) that I want to do by next Friday (she said no rush, I could finish it in Germany even, but I want to get all these orders done), as well as two scarves for presents for my mother and mother-in-law. I'm watching one of my favorite shows today while I do it, Eureka. :) They are doing a marathon, ending with all the Christmas episodes!

Carrie, I agree with Cat, tomorrow has to be better! Just think positive thoughts. I have heard the same thing with SLE and ANA, but the percentage is so slim...92% of lupus patients have positive ANA. I know it was positive on one test, so hopefully that helps in the slightest. I just want an answer....the pred works, and I want an answer to be put back on it. I was myself for only a few days and it was such a freaking TEASE!
 
haha, Kelly said the same thing about tomorrow. I hope you are all correct!

There's actually a contracted radiology service that a lot of different hospitals employ for off-shift times. It's called Nightshift Radiology. Basically, your films get scanned into the computer and sent to a radiologist on call who evaluates them and sends back the results. Some hospitals will still have that level of radiologist in house 24/7, but not all of them.

I need to finish the mobile I'm making for our friends' daughter. I don't like it, but Kelly says it looks fine.
 
Allie, I haven't watched Eureka, what's it about? We don't have cable so we mostly watch shows that are on Hulu or Netflix. We really like British TV comedies. Lately we've been watching "Peep Show" and re-watching "Black Books". I hate how short the seasons are, though. In the UK, they usually do only 6 episodes per season and sometimes it'll be a long time in between seasons. Not like here where there's 20+ episodes per season sometimes and 2 seasons cranked out each year. I suppose that's probably one of the reasons why Brit comedies are so good, they don't just crank 'em out, they really take their time with them. Still, I want more!

Carrie, that's kind of crazy about the night shift Radiology thing! A bit scary to think that off-site doctors could have a say in my care if I happened to go to the ER during the night. That just seems not right to me. For one thing, it's the ER. There's pretty much a guarantee that people will go to the ER during the night needing scans or x-rays!

Carrie, you should post a photo of the mobile you're making to your blog - I'd love to see it! (Unless the gift recipient also looks at your blog regularly, in which case probably not a good idea to post a photo.)
 
Eureka is an awesome show! Unfortunately, its ending after this next season :( its on syfy.

They have people on overnight who do the scans and xrays, but the person who does them either isn't the person who evaluates them or only does an initial evaluation. The radiologists who do this offsite are seeing the same thing one onsite would see. They're not looking at you, just the image. They tend to be radiologists who are working at that time of day so they are already awake and doing their job.

I'll post one soon, maybe this weekend. It's a take off a mobile I posted earlier that is from someone else's blog.
 
Yeah, that off-site radiologist thing sounds awful. I should have taken that CT scan and had it looked at by someone else. I'm getting this one for sure.

Eureka is an awesome show! Its a scifi show about this small town with a ton of geniuses and the trouble they get into with advanced technology. I absolutely love it. They have episodes on Hulu. :) I use hulu and netflix too, and I use it in Germany too (well only Hulu), because we get "Armed Forces Network" for $15 a month, but none of the shows are the current episodes and there are only 7 channels. Plus all the commercials are government propaganda: look out for terrorists, don't let your water faucet drip, etc. Its awful. But Hulu and Netflix are not suppose to work outside the united states, so I have to use my computer science knowledge to illegally access them. I feel like I'm not doing too much bad because I am an american....youtube is the same way. There is a lot we can't access from over there!

I hope you guys are having a great night. Its been great chatting with you guys today. :)
 
Okay sooooooo mall was a bad idea!! :( I shouldn't have done anything.. I thought I was getting better but I actually feel like I'm in a flare again just like I did on friday! All my symptoms and stuff are back right now and have been for the night. And my ears kinda hurt and I just started getting a sore throat (Idk if that's because my immune system is getting lower since the steroids or what) but it's awful... :( ughhhh, I think it's just gonna take time...
So yeah, i'm not really doing well again... :(
when I went to the mall i bought new jeans since mine are waaaay to big from all the weight loss i've been having, and I USED to wear a size 3.... NOW I wear a 00!! CRAZY!! >_< that's like 4 jean sizes that I lost... very crazy. but now I have pants that fit better. they were on sale too, so that was a good thing that happened for the evening. lol.. but then it went downhill from there.

I have a question about the pred, Cat.
Did you still get joint pains? and almost like a weird blood circulation fullness in your arms when you lifted them up. like my arms are very sensitive when I lift them up now, they feel like warm and tired (kinda like if your raising your hand for a long time and it gets that tired feeling) but just does it very easily now. and i kinda have a tightness in my calves after I sit for a little bit.
 
my blood test results came in this morning. It looks like he did test for new stuff. Research online suggests he was checking for heart/liver disease. All of that was normal. My BUN is still low and my DHEA-S is still wicked high. I might ask for further adrenal testing next week. I woke up early getting sick again. Things are definitely in a flare or something.

feel better, Sunshine

eta: my GP called in a script for zofran which seems to be helping although my tummy hurts. I ate something though! and I went into the office.
 
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MP had to cancel today but rebooked for the 19th December, got a haircut instead today which was way overdue and much needed.

Sadly my US Grandad is very very ill and I am pretty sure when I speak to my Dad next I will be told it is terminal :( He has been very unwell for a number of years and is only still here because of modern medicine. I just wish I could see him. Even if I had enough strength for a flight I doubt I could get travel (health) insurance without a diagnosis. Just another way being un-dx'ed kicks you is the a**. :(

Honestly we left the states 14 years ago and I have only seen my dad a few times when he has come here since. I always wanted to see my Grandparents again but somehow I always knew I would never get to see Grandad. I just didn't think it would be my health that stopped me!

So I will get that news this weekend and then go see Rheumy Monday, I still have no idea why I have been called in like this (even when my WBC scan came back positive I wasn't called in, they just left it until my next clinic appointment months later). I can think of 2 options right now, another test refusal or they suddenly think it's something dreadful/ something has been found in my notes.

Because of previous seasonal bereavments xmas and especially new years has not been a happy time of year for me and it doesn't look like changing this year.
 
Allie, I have friends in Canada and I believe they use the roundabout way of watching Hulu there as well. My understanding is that there's some way of tricking Hulu into thinking that you're watching from the US when in fact you're not. I would imagine lots of people do that so don't feel too bad! My family and I spent a few weeks in Germany about 10 years ago, and from what I recall the TV there was pretty lame. Mostly reruns of old US shows (The Fresh Prince of Bel-air seemed to be on about 10 times a day!) dubbed into German. In fact, I remember that the one and only English-language that we got while there was CNN. My brother was like 14 at the time, and at the end of each long day of travelling around Bavaria, he was so excited to go back home and watch CNN. It was kind of funny and of course he never purposely watched CNN before or since that time. ;) So anyway, if it were me I'd definitely rather watch Hulu than bad German TV or CNN!

Sunshine, I was never on pred long enough to get joint pains. I was on pred 10 mg a day for 5 days, and then later I was on 20 mg a day for 6 days (that time I was supposed to be on a longer taper, but my GI changed his mind after a few days and decided he wanted to test me for Addison's, so he pulled me off of pred after 6 days). I know there's a pred sub-forum in the Treatment section, you might want to ask in there as you'd probably get a more informed answer. I can tell you that I get awful joint pains in a bad flare - mostly the big joints like knees, hips, ankles, elbows, etc. So if you're still flaring it could just be the flare, or just pred, or even a combination of pred and flare. If I were you I'd have a look around the pred subforum and maybe call the doctor too if it doesn't let up soon.

Carrie, I hope you can figure out what's making you so ill lately. Adrenal testing is a good thing to do. You might get a result or at least just rule some more stuff out. Are you thinking Addison's or Cushings is a possibility for you? I fit some of the symptoms of Addison's and was tested for that, as you probably know. I have low sodium although my potassium is normal. Have you had stuff like that tested lately? My understanding is that sodium is low and potassium is high in Addison's. Not sure if it's the opposite in Cushing's, I don't know much about Cushing's except that it's essentially too much cortisol whereas Addison's is too little or none. Anyway, I'm rambling, but I hope you can get it figured out! Feel better soon and sending you hugs!

Star, I'm so sorry to hear about your grandfather. I hope modern medicine can keep him comfortable and lucid for as long as possible. And if there is a way, I hope you can travel to see him at least once more. And don't give up hope - modern medicine has kept my own grandfather alive for much longer than he should have been. He had a cardiac arrest followed by complete kidney failure. He had complicated heart surgery and has been going to dialysis for 3 times a week, and that's kept him alive for the last 5 years and counting. I'm thankful every day that he's made it this far and he's still going. I hope your grandfather can have a similar success story. Thinking of you and hoping you get something in the way of good news.

And I know just what you mean about xmas being a time when bereavements have happened and therefore is a holiday associated with sadness and bad news - Thanksgiving is the same for me. When I was in college, a very dear friend suddenly passed away a few days before Thanksgiving, and his funeral was the day after Thanksgiving. And my grandfather's aforementioned cardiac arrest happened the evening before Thanksgiving as well and I got the call Thanksgiving morning about it. I remember it clearly, I was trying to will myself into having a good Thanksgiving for once. It's always been my least favorite holiday for a variety of reasons besides bereavement, but I was trying to psych myself up to be more positive... and then hubby came into the room and said we got a phone call that my grandfather was in the hospital. So, I completely understand about bad stuff being associated with a particular holiday! I hope you're somehow able to either enjoy xmas or just to get through it with as minimal heartache as possible. Hang in there. Hugs!
 
The only american show I ever liked watching in Germany was the Simpsons because Homer sounds so totally german, especially when he says d'oh.

I want to have my adrenals tested because my DHEA-S is continually high. I'm under the impression it should have dropped with the metformin treatment, but it hasn't. at all. High DHEA-S can be indicative of a tumor, cancer, or hyperplasia. I think my endo has just been accepting my PCOS diagnosis as the reason for this high DHEA-S, but truth is, I have PCOS without poly-cystic ovaries so heck, I might not have PCOS at all. Adrenal cancer is very rare, but I'd still like to see it ruled out. We haven't done any cortisol tests either.
 
Carrie, I perked up when you mentioned hyperplasia because I've got that. When I had a CT of my abdomen, it found some "nodules" on my liver. I had an MRI to get a better look, and I was diagnosed with "focal nodular hyperplasia" - four of them to be exact, all on my liver. I was told they're basically benign tumors. They don't cause any symptoms (both GI and GP agree they're definitely not the cause of my bowel issues) and they don't need any attention at this time. I'm supposed to get them looked at every so often to see if they're growing, but I was told that surgery wouldn't be considered unless one of them grows to be 8 cm or larger, and I believe my largest one at the time of my MRI was between 2 and 3 cm.

This interests me - I don't know exactly what DHEA-S is and I doubt I've had it tested. But since I already know I have hyperplasias, I'm wondering if I should bother?
 
well you have liver hyperplasia, and high DHEA-S can come with adrenal hyperplasia so I wouldn't bother unless you have other adrenal or hormone issues. DHEA is secreted by both the ovaries and the adrenal glands. I don't know if liver hyperplasia has similar potential side effects. I'm guessing they check your liver functions?
 
I don't believe they've ever checked my liver functions - everything I've read and been told by doctors is that it pretty much requires no attention except for periodic scans or ultrasounds. I haven't read anything nor heard anything about bloodwork so I'm guessing it's not an issue with liver hyperplasias. I just googled again to be sure and it looks like in very rare/severe cases, there can be mild changes to liver function. So I've probably got nothing to worry about there.
 
Complete blood panels cover basics for most of the major organs. I'm guessing they just haven't had a reason to check deeper. Now that we're talking about this I remember that I have to have my lamictal levels checked. It hasn't been done in a couple years. I doubt anything has changed though.
 
Hey all! Glad you started this thread. I am undiagnosed too - in 2008 I had a GP diagnose me with IBS - based on nerves, diarrhea, and panic attacks. This year - it kicked it up a notch - diarrhea 90% of the time, urgency, pain in my stomach. Then I had a fistula and abscess - now I have a seton. Go on the 23rd (lucky me) for a colonoscopy). I am going to request that the run blood test to check for nutrient deficiencies - but question - if I don't show Crohn's and they say it is IBS - who treats that? GP or GI?
 
If you have a fistula and an abscess then you should not accept a diagnosis of IBS. You don't get those with IBS, but you do with IBD.
 
Hi all! Work has been really nutty lately, so it's been cutting into my forum time! LOL


I can't believe you finally got a diagnosis, Sunshine! I just wish you were feeling better. I sure hope your new treatment plan kicks in and things turn around soon for you.
 
Oh I made such a bad mistake...my mom and I went to the movies and I ate popcorn...my pain is so bad and I'm on my max pain meds....I'm at my parents house, and I was going to drive home tonight, but I'm staying here because I can't see straight and I'm afraid this popcorn has done much more damage than I expected. If I throw up I'm going to the ER. On top of this my wrist has gotten even bigger than before. :( I just want help, and I know if I go to the ER they aren't going to help me. I am praying hard that the rheumy will see my pain and inflammation on Tuesday and does something about it!
 
Goodness, Allie! I hope you feel better, and good grief, I hope your rheumy appt doesn't end up being another dead end! Thinking of you. Hope you don't have to go to the ER, but if your pain gets any worse maybe they can help you. It seems like you cannot catch a break.
 
Thanks Mayflower. My parents are freaking out...they have never seen me like this. They just keep asking me what they can do. After I took another max dose of pain meds I almost threw them back up, and my mom was running around trying to find something to help. I hate doing this in front of them, but I'm glad they are here in case it gets any worse. At this point I just want to throw my hands up and wave a white flag. :( Hopefully I will hear word tomorrow if something showed up on that CT scan, and if not hopefully they will have good news for me at my Rhuemy appt. If the CT didn't show anything I still have my giant wrist to show...
 
Just butting my head in here....spent the last hour or so reading just the last ten pages, sounds like everyone is going through quite the struggle. :( It sounds awful, but it feels so good to know i'm not alone. Looking forward to getting to know everyone, and being able to be a support as well as receive support. :)
 
Hi, just a brief message as I am really really tired.

Good news with my Grandad, he had surgery to remove 1/2 of a lung and lymph nodes. There was cancer in the lung but not the lymph nodes so yey it hadn't spread! He will have some localised radiotherapy just to be on the safe side.

Rheumy was fab as usual. Had some more blood done and some xrays of my shoulder. Will be having some tests on my heart and bones just to make sure things are okay there. Of course that won't help tummy issues. But he is going to try again for the PET scan which would help there. He said he can't understand why Gastro are so sure it's IBS, so I said my view which was they didn't want to admit their mistake 4 years ago and he listened. Also that I did feel there were problems in my intestines rather than it being caused by another illness. And he said which is what we thought when the WBC scan found inflammation there! If nothing shows anywhere then he would like to send me to Addenbrookes Hospital in Cambridge. He says the specialists there are very good and have better immunology testing. I do know someone who spent 4 years at my Hospital with no joy and got a dx from Addenbrookes within 4 months! I suppose I would have to manage the travelling/money for any overnight stays. I will see him again in January as I have a previous booked appointment then and he said it was fine to keep it.

So I see MP Monday and hopefully he can add his weight to the PET scan.
 
Allie, how are you feeling today?
Star, glad to hear about your Grandad, and that your Rheumy is advocating for you, it's nice to have someone fight for you, instead of just fighting for yourself. :)

I feel a little defeated after my appt., but also hopeful....This will be a busy week...I'm contemplating eating ANYTHING I could possibly think of to make things worse.
 
Tamesis, I have done that many times, but I caution you...ask and you shall receive! I ate a spinach salad with dried cranberries before my SBFT, and ended up blacking out the pain was so bad. My husband said I talked to him, passed out, then came to, talked some more, then passed out again. I don't remember a good 3 hours of that night. It can be really scary to damage your body that bad yourself. :(

I'm not doing well today. I'm still in a TON of pain. I didn't get any sleep last night so I spent the day on my parent's couch sleeping. I just got back to the sorority house, and I'm about to go back to bed. I didn't eat anything today, so I just drank some ensure to try and make up for it. My parents have decided that one of them is coming to my rheumy appointment tomorrow because they think this has gone too far. After seeing me like this they don't understand how I can still be undiagnosed and ignored, and they want to out their foot down and make sure my rheumy does something for me tomorrow. My mom told me I remind her a lot of her mother, and she now is dead set on this being an autoimmune disease (my grandmother has RA). She is afraid if my rheumy does nothing tomorrow it might "cost my life". >.< I think this is why I haven't really shown them how bad I am until now...

Star, the new referral to the new hospital sounds promising! Maybe their fresh new look on your case will help figure it out. :)
 
Allie, Isn't it amazing how parents will never stop being parents? My mom insisted on coming to my GI appt., and wasn't going to let me be ignored!! She has crohns, so really, truly understands my pain, more than anyone else in my family can.
 
tamesis said:
Allie, Isn't it amazing how parents will never stop being parents? My mom insisted on coming to my GI appt., and wasn't going to let me be ignored!! She has crohns, so really, truly understands my pain, more than anyone else in my family can.
Click to expand...

Gee whiz ... if your mother has Crohn's .. I wonder why in the world the doctors down play your symptoms and inflammation? I hope you get help soon. (Whne I first read your story it reminded me a bit of my son Danny ... his doctor's said his inflammation was non-specific too and were only willing to try some Crohn's medication.)
 
FARK, Allie, you're so right....I had nachos for dinner and am in AGONY right now. :(

Yeah Jeanne, I honestly don't get it....But I feel like I can only ask for so many second opinions before I'm just a hypochondriac, you know?
 
Jeannie, I just read Danny's story. How hard it must be to watch your son going through this. How is he doing now, last update I saw was July.
 
Thanks Tamesis. Danny is better than last winter, but still sick: constant fatigue, abdominal pain & headache; sore throat most of the time; diarrhea ~5-6 times daily (including during night). He is on home instruction again this school year. We have a rheumi appt on Dec 29 & should be going back to the GI in Feb. I think another colonoscopy will be scheduled at that time.
(I do like reading this thread .... I know Danny is not alone. So, thank you everyone!)
 
My MIL wants to go to my GI appts with me (she has Crohns). I can't even have my wife come in the room, let alone her mom ;)
I had my endo appointment yesterday. Nothing special. He asked me what is causing all my problems and I was like, well gee I dunno, that's why I'm going to all these doctors! He doesn't believe that there is anything wrong with my adrenals, but to rule it out I'll be doing tests within the next month. I have to do another 24 hour urine collection, then 4 days after the start of my period I have to have a bunch of blood tests. I see the rheumy tomorrow so we'll see how that goes. I need o remember to ask her about my vitamin d. It was tested in this last batch of testing and it came up as 60 (for those just tuning in - it was 10 a little over a year ago) which is a good number, but I take 35,000 IU a week (and drink fortified drinks) and expected it to be higher. I have read in a few different places that high levels of vitamin D are very helpful to the body in a variety of ways so my goal is to get between 80-100.

I am better than I was at this time last year, so within a year I have improved enough to be in the office for most of my work days. The only real changes since this began has been: more tramadol, addition of zanaflex, plaquenil, metformin, and actos. My testosterone is dropping, my sugar dropped a ton, my _bones_ don't ache constantly anymore, just my muscles and joints. I'm not exhausted and unable to function every day, just 2-4 days a week. I've been able to eat more although my BUN is still low, and my doctor thinks I need more protein. My vitamin b is dropping but still within normal levels. I have to go onto a vit b, but I can only do drops because the pills with their smell make me hurk them back up.

my endoscopy is Thursday. I know I am worse, so it better show up. I've been waking up to vomit way too often.

I made cards for my coworkers and handed those out today. I've also shipped out the family cards, and am about to do friend cards. Only one person on here has mentioned to me that they'd like to do cards. Anyone else? Please PM me? my cards are all handmade.
 
@Carrie - Wow, what a dense doctor. :) Hope all your tests go well, and that he finds something. I can't remember everyone's stories as there are now so many: have your scopes showed anything up to this point? It's weird b/c with me I actually had esophagitis and gastritis that showed up on my scope, but rarely ever feel anything that could be considered "heartburn." Although I have noticed it more lately, a year and a quarter after the initial test.

I'm glad you are feeling somewhat better. Although being without answers still is not good...Maybe something will show up soon. You are dxed with fibro, right? How do they dx that? Or is it another dx of exclusion?
 
Hi Tamesis, welcome to the club and welcome back to the forum. I hope you can get some answers soon! I can't believe you have such a strong family history of IBD but they still can't figure you out. I have just a little family history (great-grandfather had UC). I'm glad to hear that you have a truly understanding and supportive mother, I'm sure that helps a lot. Hang in there! And as tempting as it is, try not to eat any more foods that will make things worse - it's just not worth it!

Dannysmom, I just read through your "Danny's story" thread, how heartbreaking! It's difficult enough going through a tough battle to get a diagnosis as an adult - I can't imagine going through something like that as a child nor as a parent watching your child struggle with an illness like this and not have solid answers. And the fact that they tried various Crohn's meds on him and nothing really worked, that's got to be incredibly frustrating too. I count myself as very lucky that my doctors tried Crohn's meds (pred, Entocort, and now Asacol) on me and all of the meds worked well and put me into remission. I hope you can get some proper answers and treatment soon for Danny!

Allie, your rheumy appointment is today, right? Is he going to give you the CT scan results? Even though it's scary for them to see you like this, I'm glad your parents finally know the extent of your illness so that they can fully and truly support you and know what you're going through. And I'm glad they're going with you to the appointment - it always seems helpful to me to have someone with, even if just for support and to also ask questions of the doctor or just to listen. Good luck today with that appointment and please keep us posted!

Star, I am so glad to hear that your grandfather is on the mend, and that's wonderful news about being referred to a new and hopefully better hospital! I really hope this is what it takes to get you some answers already, even if it involves some travel. Best of luck with the MP appointment too! Hopefully this streak of positive news will continue for you! :)

Carrie, I think it's a good idea to bring your m-i-l with you to your appointments. You've mentioned her before in a very positive way and it seems to me that it would only be a benefit to have her there with you. Why can't you bring her or Kelly with you? As for cards, I have been ridiculously busy trying to finish up xmas crafts (several crocheting and sewing projects) and I was a bit too ambitious this year, so long story short I haven't yet made or sent any cards - but I am going to try to get them done soon! I really wanted to do some hand-drawn cards, so I'm going to make one good one and scan it in and print off a bunch of copies of the same one (my original idea was to make a bunch of different ones and hand-color each one with colored pencils - yeah right!). Sooo, yeah, I haven't sent your card yet because it hasn't been made yet, but I am going to buckle down this evening and work hard on it.

And yeah, if anybody else besides myself and Carrie wants to do an xmas card exchange, PM us! We're the only two who are doing it so far. Carrie makes awesome cards - just look at her blog! And my cards may or may not be fun and awesome too. ;)

How's everyone else doing today? I'm pretty good. Did great at the gym yesterday - I have always hated jogging but it's slowly growing on me. I usually jog for just a couple minutes on the treadmill to warm up at the start of my exercises. For the longest time I'd just jog for 2 minutes and that was it, I couldn't stand to make myself go a second longer. But more recently I have been pushing myself and I've gone 2:30 or even 3 minutes. And yesterday I did 4 minutes of jogging! And I felt okay afterwards - wasn't even out of breath! I know it's a small victory, but it felt huge. I won't be running a marathon anytime soon, but my goal now is to slowly work my way up to running a mile. (I did 1/3rd of a mile yesterday in that 4 minutes.) I just feel like I broke through a mental barrier, you know? I learned to not totally hate jogging and that I can do it (even though I still don't love it, ha ha).
 
Cat, I didn't send yours yet either. not sure which one you are getting :)

I can't bring them to my appts mostly because I'm silly and will feel weird with someone else in the room.

I'm so exhausted today. yuck
 
Carrie630 said:
I can't bring them to my appts mostly because I'm silly and will feel weird with someone else in the room.
Click to expand...

I'm the same way. I'd rather go alone. I think I'd feel inhibited about talking about this or that with someone else in the room. If someone insisted on going to advocate for me, I guess I'd let them, but I'd just as soon not.
 
Carrie, I totally agree with you on having someone else in the room....Even though I talk with my mom about all my symptoms, hearing HER tell the doctor things I forgot was weird. :p Sucks that your Endo was such a doofus.....However the fact that he's running tests is great news! However if you're anything like me you're just sooo beyond done with tests...

Cat, Thanks! :) I feel bad for leaving, but there was just so much going on in my life...Excuses excuses. :p Plus I felt like a crappy support because I didn't really understand the problems other had...this undiagnosed forum is perfect for me though! Congrats on your success at the gym, keep it up! It always feels great to get some exercise. :)

Well....I had coffee this morning, forgetting about my nacho agony from yesterday, and yeah....back to soft, bland foods for me. Within ten minutes of coffee I was in the bathroom for 20. :( That's a lot of time/ring of fire for a cup of coffee. Thank goodness for flushable wipes and Calmo.
 
Tamesis - I am so totally done with tests, but I'm getting in whatever I can before the end of the year when my health insurance rolls over again.

I forgot about the mention of nachos - that must be why I got some for lunch today. not getting very far! I actually ripped up the roof my mouth from eating almonds at the end of last week then made it worse by eating what amounts to an entire pineapple over the weekend. ouch

eta: I'm pretty happy that all my coworkers like their cards. Everyone keeps asking if I made them myself and then saying I should transfer to creative (I actually work for a greeting card company in the IT dept).
 
So my appointment didn't even happen. Apparently my referral to the rheumy was only good for one month....I am lost for words. I was in there for over an hour trying to get a new refferal to be seen. My Primary care gave me a new refferal, but then they didn't report it to tricare correctly. They didn't report my last referral correctly either, so I have been getting very expensive rheumy bills. :( They wouldn't take me back, they wouldn't give me my CT scan results, they wouldn't do ANYTHING. I'm to go back on TUESDAY. I am so mad. :(

I am still doing very poorly from that stupid popcorn...they could see that at my rheumy's office, but still wouldn't see me. I'm now back at home on max pain meds trying to figure out what to do next. So incredibly upset!

Why is it all about money in this stupid industry???
 
Gosh so sorry allie!! :( this is so upsetting. so sorry!
I agree with Carrie!! :(

I'm doing a lot better!! :D hehe YAYYY! Able to go out with my friends to the mall and stuff. But haven't still been able to tolerate solids very well.. so i've just been eating mushy stuff. lol but I'm feeling better so I don't mind. I have my appointment with my GI tomorrow morning to check up and see if he wants to add any more meds or talk about other treatment options. and I have an appointment with the mayo clinic tomorrow for the antidepressants... >_< but i'm using my appointment NOT to get the antidepressants but actually to talk to my doctor about how i went to the hospital and bring my xray and blood work to show him and see if maybe they still want to help me with the crohn's, or if they still think it's a joke still... kinda a long drive and a long shot.. but I'm gonna try! My mom thinks it's important that I try, so i am... lol busy day tomorrow!
Gosh i still have to get checked for endometriosis too... hmmm wonder when I should do that. :/
 
actually i don't know if i'm going to go the mayo clinic or not... i don't think it really is worth it anymore... they aren't gonna do anything, and my GI doctor here is already doing the best he can, so I think i'm just gonna work with my GI here. Afterall, he is the one who found the diagnosis and takes me seriously and gives me meds to help me get better :) so disregard the message above about me going to the mayo clinic. lol
 
Allie, that's idiotic. I don't even understand that. If you were referred and had seen the doctor, why would they refuse to see you unless he had dropped you? I never knew referrals had an expiration date. Is that standard practice with some insurance companies or something? I have never heard of such ridiculousness.

Sunshine, glad to hear that the meds are kicking in and bringing you some relief. Hope it goes well at Mayo tomorrow.
 
Okay, well then disregard my comment. I agree, why go to them if they are not going to treat you for what you have? That would be a long trip for probably nothing much.
 
I agree Mayflower, I didn't think referrals had an expiration either. they were the ones who wanted to continue to see me. It was SO upsetting.

I'm glad you are feeling better sunshine! I think you are better off not going to the mayo clinic after they took your diagnosis away and treated you that way!
 
Sunshine, so glad to hear you're feeling better! I agree, going back to Mayo would probably just be really upsetting, and they're not likely to admit they were wrong.

Allie, I'm so sorry that happened to you. :( I know whenever i've had a referral somewhere once i've seen them, it's good for a year, then I need a new referral. But a month?! That's ridiculous!! You can't often get in more often than every 3 months!!
 
ahh allieinwonder , i cant belive it we pin so much hope on these appointments and getting sorted its such a rollercoaster of pain and emotion xx

sunshine smile im soo please you are feeling a little better lets hope this is the right meds for you xx
 
pill cam!

hi there im stace,im new to all this!:)im 26 years old and i have been suffering with stomach problems for a few years now.however over the last year my problems have become worse. i have had ibs for many years.but over the last 11months i have had really bad abdominal pain,really bad constent stomach distention(look 8-9months pregnant) and in constant pain after eating or drinking anything.i have already had my gall bladder removed due t it being full of stones.i was admitted to hospital for 2weeks.where i had endoscopy,mri,ct,biopsys taken,abdominal scan,blood tests,urine samples and stool samples all have come back clear.i also have a massive mass that moves around in my stomach.5 different consultants have seen this and it move and all have said theyve never seen it in there medical career,but cannot tell me what it is?other than one doctor said it was my bowel poking thro my stomach because of the amount of weight ive lost.surley this isnt right?also i have been un diiagnosed for a year now.my consultant has put me on 26 different tablets a day all with different side effects.i have been off work now for 3 months..gutted! on monday i had the pill cam. all went well however i had to stay in hospital for 10hours as my hopsital doesnt let you go home wearing one.the nurse showed me that it was in my small intestine and that it had made it way to my large intestine when the test had finished..however its now thursday and i havent passed the cam(im sure) is this normal?can or is there risk of it getting stuck in the large intestine? its really good this site as i have really down days as i feel my life is on hold until i get some answers,which should be the 19th of this month....hope everyone gets there answers,and thanks for having a great support net on here.its good to know ur not the only one the docs are making u feel crazy.thanks take care everyone.hope ive done this right?? xx
 
Hey stacenrach....its normal for you not to the the pill come back out. I wouldn't be worried about it. Both Cat and I have had pill cams, and neither of us saw the darn thing come out the other side. If you start throwing up or you aren't having any bowel movements, that's when I would worry. :) I hope the pill cam found something!!!

So I just got back with an appointment with my GP. She is freaking AMAZING! Why can't she have the qualifications to figure me out??? She is dead set on it being an autoimmune disease...she is leaning more towards crohns, but she believes it might be lupus as well. She asked me all about my quality of life, and she told me all she wants to do is make me as comfortable as possible until this gets figured out. She printed out all my records without me even asking so that I can take them back to Germany as well. She retested my B12, and she thinks that its bowel inflammation of my small bowel thats causing malabsorption, which is why I have the deficiency. So I will probably be on B12 shots by the end of the week. She also found tons of joint inflammation...not just my wrists. My wrists, knees, AND ankles are all swollen. She wants me to find a rheumy in Germany as soon as I get back and she hopes I have a firm diagnosis soon. She warned me that this diagnosis will be a big change in my life...especially with insurance companies because its a "pre-existing condition". I don't care! I just want people to know something is wrong, its not all in my head, and get proper treatment! If they STILL can't figure out whats wrong in Germany they want me to go to Emory, a teaching hospital here in Georgia, and have them take the time to figure me out. Its a lot like the mayo clinic. I really wish she could be my only doctor...well, her and my old GI. They are the only ones that have treated me like a human being through this entire process. :(

Why can't this be an easy process?? Most doctors see it as black and white, and make this the hardest thing in the world to figure out. Someone as sick as me shouldn't be left without any help for 18 months. My Dad brought a copy of the hypocratic oath with him to my rheumy's office, and he was going to read it to me rheumy...because he isn't following it. I would have loved to see the look on my Rheumy's face if he had had the opportunity to do it!!
 
Welcome Stac, although I hate to see new members because it means more people out there suffering, however i'm glad you found us. :) It's a great resource, this site. I hope your pill cam found something! I have a colonoscopy tomorrow, my next step is to ask for the pill cam.

Well...Prep today. YAY!! (NOT!) I hate prep....HATE it. When you all take the pico salex, how long before it starts to work? With me, it's within half an hour....My mom was saying it takes her 5 hours!!!!!!!!!!!!! I couldn't, and still don't, believe it!! Hubby and I are investing in IPhones for christmas, and I wish I had it now, for all my loo time today! However Claire is home today....how fun will this be!
 
Allie, I meant to say, I'm sooo glad you have an awesome GP who is really advocating for you! Hopefully they get some answers soon! :(
 
I have never taken pico. My prep took a couple of hours to kick in. It was the pill prep that I took.

Allie, I too am glad u have an awesome GP. It makes a difference to have a good one in your camp. Hope the B12 shots help. When do you go back to Germany?
 
I go back to Germany New Year's Eve....Fly the 30th, land the 31st. I've pretty much run out of time here. :( Maybe its a good thing and I will get a better rheumy in Germany.
 
Yeah, I would say you can't get a worse one, but who knows? Let's be positive and hope not!! Are the docs you see there German? Or it's a military hospital with American doctors?
 

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