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Oh yes i will still be posting ;) you dont get rid of me that easy! Hehe..

I see you are a forum monitor now stacey! Congrats :)

@cat - i have only had my licence for 2 and a half years.. and these last few months ive had the horrible vision issues which scare me.. although they only last a few seconds, i dont want it to happen when driving... so i dont end up diving that much and ive become really nervous.

I have called my rheumatologists office today and requested to go onto the sulfasalazine because my chest has started to hurt again along with my many joint pains..
the chest pain feels "external" if you know what i mean.. ast time i had it doctors said it was inflammation of the chest wall.. which it definitely feels like that hallmark stabbing/burning pain that you only get from inflammation lol
 
Bozzy, is that costochondritis? I thought I might have that, as I sometimes get wicked pains in my left rib cage, but my pain is apparently GERD-related instead. I'm not sure if it's referred pain or if I'm refluxing into my lung or what, but taking some antacids usually makes my pain go away. I believe I read that one way to tell if it's costochondritis is, if you press on the painful area then it hurts even more. With my left rib pain, when I press on it, it doesn't hurt any more. So I don't have costochondritis, but I feel for you on the rib cage/chest pain. When I get that pain it's awful! Good luck with the sulfasalazine, I hope it works well and kicks in fast.

Stacey, glad to hear you're doing okay. Hopefully your co-worker is still behaving herself. Have you noticed any improvement so far since you've been on the diet?

lsgs, how are you lately? I like the profile pic, is that your dog - black lab I'm guessing? I'm more of a cat person obviously but I have a corgi too. :)

How's everyone else today? I'm really tired, didn't sleep well at all, and the arthritis is still being grumpy. It was really achy when I first woke up and has gotten a little better as the day has gone by. I'm going to the gym tonight so hopefully that'll whip it into shape. It usually responds well to exercise.

Is anyone besides me just not looking forward to Valentine's day? I know I'm married, but hubby isn't the most romantic guy ever and I would basically have to nag him to death to get him to send me flowers, ha ha. True story, he used to work in a flower shop years ago when we were dating, so he got a really good discount on flowers, but I still probably only got flowers from him maybe 3 times in 4 years of dating. This year, I showed him on the internet what I want for V-day (I did this last year too) so he ordered it then and there and had the order confirmation emailed to me. :p Yeah, not romantic, but it works. I admittedly do get a twinge of jealousy when I see my co-workers receiving big amazing flower arrangements though. I figured when I settled down with hubby that I wouldn't hate V-day anymore, but I still totally do. :p My least-favorite holiday is still Thanksgiving, but Valentine's day is a close second.
 
i dont know cat... but it affects my left rib cage too. but when i press on the top section of my chest it does hurt more.. plus im not having any reflux at the moment.

im working until 8pm tomorrow night on valentines.. and wont get home until 9pm!
im not fussed about valentines.. but if my hubby wants to get me chocolate, wine or flowers - then i wouldnt say no ;) haha.. but im not expecting anything. we havent spoke about it at all this year.
i did buy a wooden toy train set for him though as a daft gift.. for him and amy to play together. so my present isnt very romantic haha!!!
 
Bozzy- yerh cheers hun
hope your ok

Cat - yerh noticed a small improvement but the diet is so basic and bland im struggling with the bread and milk subs but im only a couple of weeks in so th epain is not as bad but still having trouble with really hard painful BM

but ive subed tea with milk for green tea and choccy with harribos so im stil getting my sugar hit
but my calorie intake is still too low and still loosing 2/3 lbs a week which at 30yrs old im worried that ill get too small ( ive gone from 10st 11lbs to 9st 1lbs so 24lbs loss so far)
i dont want to be tiny i want my woman curves with bum and boobs so trying to little and often
its very much trial and error at the mo
but i have devolped this pain this in my chest when i eat its almost as if the food is getting stuck or having difficulty moving down to my stomach i have to take big gulps of water to move it then it really hurts after for about 10 mins weird very weird
so ill have a chat with the GI on that one when i see him next

so yerh not too bad

hope everyone is feeling good and having a good valentines me and hubby dont bother we have been together for so long id rather celebrate big on our wedding anniversary

sending load of love
xxxx
 
Stacey, you might want to ask your doctor about checking for gastroparesis and/or checking your esophageal motility. Gastroparesis is when your stomach doesn't empty properly or it empties really slowly, so the food just kind of sits there. And if your esophageal motility is not normal, food would just sit there for awhile in your esophagus - which sounds to me like that's what might be happening. There's a test, I think it's called esophageal manometry, that they can use to check your esophageal motility. My GI mentioned it to me once although I don't know what it involves. But if I ever elected to have my hernia operated on, I would have to have the manometry test first to make sure my esophagus works properly (my hernia is where the stomach & esophagus meet). Just one more thing to ask your doc about! I hope it's not that but I also hope you can get it figured out.

Bozzy, if you're not having reflux and it hurts more when you press on it, that sounds like costochondritis to me. I know there's a few other people on the forum who have had issues with it too so you're not alone. You might want to ask about it in the "extra intestinal manifestations" section and see what you can find out about it.

Ugh, it's snowing here yet again, so my hip is achey yet again. I'm really getting sick of winter! I feel like such an old lady, I can tell when it's going to rain/snow based on if or how much my hip hurts. Blah. Anyway, I hope everyone else is hanging in there, big hugs to all.
 
Cat, that sure is my pup. He is awesome! He's about a year and a half and just the nicest boy ever. I'm so glad I'm fit enough to walk him again. Last year walking him around the woods/park in the sun was amazing, so looking forward to summer to get some decent walking weather again!

Stacey, I have that problem due to dry mouth. My mouth doesn't feel particularly dry but when measured it was 0ml unstimulated! I have to use water/fluid with every mouthful to get it to pass down. I wonder if it's something similar? It sounds exactly like what I have with my dry mouth due to sjogren's. Does any particular food make it worse? Sometimes I can feel like something is stuck in my throat or 'gravelly' for hours after.

I'm really sorry you're not getting your calorie intake :( I was in your position last year, it's awful. The smell, sight or suggestion of food gave me the utter boke (now I'm a chubby wee thing! haha) What about taking some Ensure or something? You can get Ensure Plus which is 400kcal in a little bottle. I also on the advice of the hospital dietician started using milk powder to double the calories in any milk I was drinking... Drinking flavoured milk, full fat soft drinks, anything with loads of calories, get it down your neck. Not healthy in the long term but better than unintentional weight loss.

Still can't believe your gastro is saying IBS with weight loss like that mind you...

I've started getting my early morning 'wake up call' tummy pain and nausea again. It's not too bad and it's passed by the time I get to work but symptoms aren't going in the right direction. Still very manageable though so I shall persevere! I feel like the mental aspects of this disease (whatever it may be) are kicking my ass at the moment... Worrying about the future and constantly mulling over what drug I'm going to go on and my upcoming MR enteroclysis... I hate it.
 
Hi Isgs

I ve just googled it and i tick all the boxes from what Cats suggests im feeling like wow its a bit closers to something real and not just in my head as your right the GI is so wrong with the IBS thing its no way IBS i can't bloody eat anything a few mouthfuls and im so full then in pain as i feel like ive eaten too much but i have not its only a very smal amount of food at a time
the pain is higher up under my ribs then travels down to bowels area also with the weird pain in chest

also the thing is the Hospital dietitian says no dairy products at all however i have had a little greek yogert and it did nothin to me ( it tasted like heaven )

oh bless ya im the same its terrible just not knowing and having no answers to the way you feel, all the best for the upcoming MR enteroclysis let us know how you get on

Sending loads of love

xxxxx
 
Stacey, I'm glad the info was helpful, I hope you can get things figured out for sure! For what it's worth, it sure does NOT sound like IBS to me. You do not lose weight like that with IBS. My GI always took my weight loss really seriously so I hope your doctor does too. It's scary to lose so much weight when you're not trying to, I've been there myself and I know that feeling. Hang in there hun! Big hugs!

lsgs, that's not good that your symptoms are starting to rev up again! :( I hope things don't get any worse. I completely agree that the mental/emotional part of the illness is probably the worst. I get so depressed in a flare. I feel for you! Wish I could write more but I have to dash, I will try to write more later. In the meantime, big hugs!!
 
Cat-a-Tonic said:
And you're correct, I don't know of anything besides IBD that causes fistulas. !
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I had a friend who had a fistula 40 years ago, she's still living and doesn't have Crohns. I never knew that IBD was connected to fistulas but she has had no issues that I'm aware of since the 70's.
 
Cat-a-Tonic said:
My least-favorite holiday is still Thanksgiving, but Valentine's day is a close second.
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Go to the internet, find the most extravagantly priced beautiful flowers you love. You order them , add a card that says "Nothing is too good for the woman I love on Valentine's Day, Love "husband" and put charge on his credit card and have them delivered to your office. After a few years of that, he'll be glad to pick them out and order them himself and save himself a few bucks. :). These men....they only learn the hard way.
 
Wish I could have, Sparkle, but hubby and I just have a joint account and we're pretty poor. Even if he had his own credit card, he just works a few hours a week in a shop for minimum wage so yeah, I don't want to bankrupt my own hubby. :p

lsgs, how are you doing today? I can't remember, have you got the MR enteroclysis scheduled - if so, when are you having it? I googled it as I didn't know much about it, and it sounds like a good diagnostic test to have, so hopefully the stress and yuckiness of having it will at least yield a worthwhile result. My GI mentioned to me once that if I flare up again, he'd like to do an MR enterography as I haven't yet had an MRI of my digestive tract (I did have an MRI of my liver as I have 4 benign tumors on it - that's seemingly unrelated to my IBD or other health issues though). Anyway, I hope it goes as well as possible. Keep us posted and try not to stress too much about it (easier said than done I'm sure). Fingers crossed for you that this is the test that gets you some answers!

How's everyone else today? They're saying we could possibly get another big blizzard-like winter storm here next week - my arthritis is already protesting. Last time we had a blizzard, both my hips (the good one and the bad one) were aching like crazy and I got a barometric pressure headache too, so we'll see what happens this time around. Not looking forward to it! I have my cane ready to go just in case!
 
I seem to be flaring a bit. My husband hurt his foot and we spent Friday night in A&E, luckily he didn't break it. It was the same A&E I was taken to before I was admitted so I found the whole thing a bit surreal and weird. So then on the Friday night after we had a late dinner I started feeling so nauseous, and all day Saturday through to now. My appetite is gone and have been waking in the night with night sweats, pain and needing to use the bathroom. Even when I fell asleep on the couch during the day I woke up sweating. Weeeird. My rheumatologist told me to phone him if things got worse, it's not unbearable and I've dealt with far worse but it's not going in the right direction. I know he's only going to tell me to up my steroid dose again though and I don't really want to do that to be honest. I just hate feeling like I'm bothering doctors, my husband goes nuts at me for it.

My scan isn't scheduled yet, I got a call from the hospital to say would I mind travelling a bit further to get it done quicker. So it will be within the next few weeks. I am not a wuss with tests at all but this one terrifies me. I've had the enterography done (where you just drink the stuff) and found it pretty awful. So I can only imagine having it done with the addition of the tube to be even worse. Add in a bowel prep too, yeugh!

Our weather's great today! 11 degrees C! Had a nice walk with the dog just there :) Now he's lying in his bed absolutely pooped and so am I. Haha.

Hope everyone else is okay :)
 
lsgs, that stinks, I'm so sorry to hear you're flaring. :( I am the same way in a flare, terrible night sweats. And yeah, like you said, even if I took a 10 minute nap I would wake up covered in sweat during a flare! Seriously though, do NOT feel like you are bothering your doctors! That's what they're there for! They can't help you if they don't know what's going on, so let them know! Yes, they may just up your steroid dose again, but at least that should hopefully get things under control. And they may have other thoughts on how to get this flare nipped in the bud besides steroids, so let them know your concerns and hear them out. Hang in there hun, I hope this flare ends soon.

How's everyone else doing? As for me, I'm okay. Had a massage yesterday and feel good! The last massage I had, I was so freaking sore afterwards I could barely move my neck for days. This time no soreness at all so who knows. (My massage therapist says my neck is really messed up so he always works on it pretty hard.) My body is strange, ha ha. My hip is still achey but what else is new. It's supposed to rain/snow tonight and I can tell the weather's on its way just based on how my hip feels! Ha ha. I had a really good weekend though, got some good exercise in and saw some old friends and had some good laughs and a lot of fun. All in all I can't complain right now.
 
Hi my lovelies

Slighty concerned as is it normal that im eating things like potatos rice chicken grapes and yet im still loosing weight at about 3lbs a weeks

and personal thing time but is it normal with gastro issues and weight loss that it effects female parts ie pain after sex and bleeding after sex

im at the docs on thursday for a check up on that one as never normally have a problem however over the past 6 months ive been in no fit state for any bedroom fun as been so poorly but have had a good week so thought id have a bit fun and pain and bleeding

not to sure

sorry for being so personal guys but thought if any one would have an idea would be my forum family


hope everyone is all good
xxxx
 
Aww stacey. thats awful :(

It is normal to lose libido when poorly.. but im not sure if the pain or bleeding is. maybe you should check out the females only section and see if anybody has same problems.. when was your last smear test?
Im glad you are seeing your doctor about it though.

try not to worry. im sure these new symptoms are just related to the stress your body is under due to the gastro issues xx :hug:
 
Stacey, I agree with what Bozzy said, the pain & bleeding need to get checked out. It could be something like a fistula or it could be unrelated to the tummy issues, but either way you obviously can't continue on like that so I'm glad you're seeing the doctor soon. Keep us posted and I hope it's nothing major!

As for losing weight, you're supposed to be on this diet for 4 weeks, right? How much longer do you have to go? If it were me, I'd probably call the dietician and let them know that there's too much weight loss happening. Hopefully they are understanding and will figure something else out.

Hang in there and let us know what happens on Thursday! Good luck!

Bozzy, how are you doing lately? Did you start taking the sulfasalazine?
 
Hi cat... no i havent started the sulfasalazine yet. i left a message with my rheumys secretary requesting to start i last tuesday but i havent heard anything :(
I know he does clinics on fridays, so im gonna call on friday to chase it up.

my mum goes for her cystoscopy next tuesday.. she's already had a renal scan which was all clear.
so thats great news so far :) xx
 
Stacey just want to second what everyone else has said, get the gynae problems checked. Who knows, maybe some of your abdo pain is a gynae issue! In all my years I've never had a problem with bleeding there even though I've had some horrific abdo probs.

If I were you I would be ringing the dietician/gastro/anyone who will listen and telling them to take action. That weight loss is not normal and if I think of how I felt when I was losing weight at that rate, I just feel so bad for you. It's awful :( Get on to them!!!!

Looks like my flare was actually a case of dodgy meat! So while it sucked at the time I am much better now. I bought the meat on the Thursday, ate it lunchtime Friday. Felt ill Friday night. Then when I went to make sandwiches with it on the Monday for work, noticed the use by date was the 7th February! It was purchased on the 14th... So I'm surprised I was a little off colour.
 
I am going Thursday for a vaginal ultrasound. I have been having off and on mid cycle blood tinged discharge and pain. I also have nasty intestinal pains. I also have fibroids which were found on a recent CT scan. I am not sure how much gyne stuff has to do with my pain, but I do think I have something intestinal going on. I have not really been diagnosed yet. Gastro keeps saying IBS. I do NOT think I have IBS. I am in such severe pain a lot of the time that it seems very unlikely to be just IBS....

Good luck and get your gyne stuff checked out just to be safe.
 
Bozzy, that's great news about your mother's scan being all clear! Good luck on Friday and on Tuesday, keep us posted on how everything goes. I hope you can get the sulfasalazine and that your mother has another good test result! Sending you a big hug.

lsgs, I am wondering if I got some bad lunch meat too. I had Subway yesterday and felt a little bit nauseous and "off" after lunch but not too bad. Today I feel worse, quite nauseous and feel pretty "off" (although no other symptoms - stools are solid & normal, no pain, etc). I took a Zofran for the nausea and am skipping the gym tonight (you know it's bad when Cat skips the gym - I hate doing that!). Going to rest up tonight with my heating pad on and hope it passes soon. I'm glad that yours wasn't a flare - I don't think mine is either - but what's up with the bad meat lately?? Just a weird coincidence I guess! Anyway, glad to hear you're feeling better!

Ihurt, good luck with the ultrasound. I know you have mentioned having bladder issues as well, it must be awful to have so much going on in the same region and obviously difficult for your doctors to sort it all out. I have some type of undiagnosed bladder issues too (recurrent UTIs) although thankfully mine are mostly well controlled by taking cranberry supplements. I know you've mentioned that your bladder issues are really bad, that must be so terrible, I really feel for you. For what it's worth, it sure doesn't sound to me like you have IBS - have you sought out another opinion from a different GI? Keep us posted on what happens Thursday - best of luck! I hope you can get some answers!

How's everyone else doing? As I mentioned, I'm feeling crappy today. I took a Zofran which helped somewhat but I'm still not feeling right. Of course the nausea really kicked in about 40 minutes before my opthalmologist appointment - I couldn't cancel it or I'd be charged for it, so I had to go. For some reason darkness always makes nausea worse for me, so it was not pleasant being in a darkened room reading eye charts. I made it through and picked out some really cute new glasses frames though. Back when I was sick all the time, before I hit remission, I would cheer myself up by shopping. I was getting smaller all the time so why not buy some extra-small size clothes? It wasn't like I was spending my money on food, ha ha. And whenever I had to go to the pharmacy, I would buy myself a new bottle or two of nail polish. It always made me feel a little better to buy something fun or pretty when I was feeling awful. I guess today was no exception because my new glasses have a bit of a cat-eye shape and they have pink accents - very cute! And cheered me up a bit. We'll see how I feel about them when I get them in a week's time! Hopefully they are still cute then (and hopefully the nausea is gone by then too).
 
Hello everyone again.

Well, I'm hating life at the moment. I'd been good for months, ever since (ironically) that horrid stomach bug I'd mentioned. Lots of energy, no pain, no upset stomach, no constipation nor diarrheah. Day before yesterday my back started aching, yesterday my guts started hurting, today everything's hurting and I'm sweating, probably got a fever.

Edit: Oh yeah, and got my first mouth sore since I've been feeling better. So, I guess they aren't just the normal 'eh, everyone gets em I guess' that I was making myself think.

Worst part is, I missed my GI appt in November because I was too piled up with school (80+hour weeks, then work on top of that) and I was feeling well so I couldn't justify missing a lab and having to make it up on exam week. Well, that puts a bullet in the whole stress bit. If I was feeling good then, it can't be stress.

I finally had the kick in the ass to reschedule my GI appt when it started up. I get in in April.

Oh, some good news though! I'm engaged as of Christmas eve!

I feel bad I haven't been checking in, ya know how it is, I'm feeling great, I don't wanna worry about all this.

I was finally starting to drink the kool-aid that it was probably all IBS and I would be better.

I probably won't be around too too much, lifes busy at the moment. But just had to blow off a bit of steam.

Take care all,

Nathan
 
hello my lovlies

sorry but im about to rant :(

well another evening out cancelled due to my bloody tummy, i cant seem to win at the mo im sick of the sight of chicken and rice and completly fed up with not being able to eat anything for brekkie but fruit
the hunger pains are just as bad as the spasams and constant pain of either going to the loo too much or not at all
i have nothing in the way of pain control paraceetamol is as usefull as a box of smarties
im tired grumpy and hungry
the bloasting is a joke even though there is nothing in my diet that should cause bloating and at its worse i look about 4 months preggers
all i want to do is sleep and i cant
fed up is not even close to how im feeling and i have got well over 4 weeks to my next GI appointment as i have to complete the 6 weeks on the excultion diet then wait a week for the diet woman to write to my GI
im now looking at food as an inconvience as i know that anything i eat is just gonna cause me problems

ggrrrrrrrrrrr
sorry guys
i know im at a much better place than most

xxxxx
 
well there you have it my GP who has known me for over 10 years is very annoyed that i have been left to loose so much weight and been put on this diet without dealing with the weight loss first

she also said that if i have IBS then she will eat her very nice handbag as even she says IBS does not give the symptoms that i have

she wants to see me before i go back to the hospital as she will be writing to the GI
she has also agreed that its either CD or Gastroparesis and or i have some mutated unheard of special case IBS

she believes that the GI has fobbed me off as he cant find anything on the scope or MRI but needs to do a pill cam or endo

either way she was not happy and very concerned with it all

Finally!!!!!!! someone that can see how poorly i am

the sex issue i have is something she want to look into as it could all be tied in together

i feel realieved and validated

now i am gonna call this diet woman she what she says

xxxxx
 
Nathan!!! We missed you! I wondered what happened to you and how you've been doing! I'm glad to hear you were doing well up until now. Congrats on the engagement! But that sucks that it sounds like you're flaring again. Could you maybe see your GP sooner than April? My GP can't diagnose me or run many tests, but he can run bloodwork and can prescribe pred, so it is somewhat worthwhile seeing the GP if you can't get to my GI right away. Anyway, I'm glad to hear from you and I hope things get back to being good again very soon. Hang in there and thanks so much for the update! :)

Stacey, what a frustrating situation, but I'm glad that your GP sounds like a keeper! I hope she can help you out and I'll be interested to hear what the dietician says. Would your GP or the dietician maybe be able to prescribe liquid diet or enteral nutrition? I've heard of Modulen being used in the UK, I have no experience with it myself but it's supposed to be pretty effective. It's a liquid diet, no food, you just drink a special nutritionally complete type of drink every day for a certain amount of time. It allows your bowels and stomach to rest and heal, and it is supposed to be about as effective as steroid treatment. If it were me and even chicken & rice were bloating me out like you described, I would probably ask about something like Modulen. Just a thought for you. Hang in there and I hope your GP can work with your GI and dietician to get you some proper care already! Keep us posted, and sending you big hugs!

How's everybody else doing? I have had a rough week, not sure why. I think I ate something that didn't agree with me. I became slightly nauseous on Monday afternoon, spent big chunks of Tues & Wed being very nauseous, and am finally feeling somewhat better today. My stomach still isn't quite right but I'm feeling much better than I was. I think it must have been something I ate because it was pretty much just nausea - I didn't even really get diarrhea, no pain, no chills nor night sweats, etc - so it wasn't a flare. I did have to skip the gym for 2 days though which I hate having to do! I'm going to go back to the gym today and take it a little bit easier than I usually do in my workouts, just to ease back into things. I'm expecting more arthritis pain soon too as we're supposed to get even more snow! 4 to 6 inches, yuck-o. I am so sick of winter!
 
StaceyC96 said:
well there you have it my GP who has known me for over 10 years is very annoyed that i have been left to loose so much weight and been put on this diet without dealing with the weight loss first

she also said that if i have IBS then she will eat her very nice handbag as even she says IBS does not give the symptoms that i have

she wants to see me before i go back to the hospital as she will be writing to the GI
she has also agreed that its either CD or Gastroparesis and or i have some mutated unheard of special case IBS

she believes that the GI has fobbed me off as he cant find anything on the scope or MRI but needs to do a pill cam or endo

either way she was not happy and very concerned with it all

Finally!!!!!!! someone that can see how poorly i am

the sex issue i have is something she want to look into as it could all be tied in together

i feel realieved and validated

now i am gonna call this diet woman she what she says

xxxxx
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Personally I would sack the diet and eat whatever you want, whenever you want (if you take a notion for ANYTHING just eat it) to get the calories in. If that means getting some Ensure from your GP or even going into Boots and buying some Complan. It's more important to slow the weight loss right now otherwise you'll find yourself an inpatient very soon and that's not a happy place to be.

Your story is so similar to mine :(

Cat I think we've both been victims of bad meat!!! Hope you feel better soon :)
 
Hi everybody!
Hello miss super moderator cat ;-) congrats! Xx

congrats on your engagement nathan :)
But im sorry to hear that you are not doing well again :( i hope that appointment in april doesnt take too long to arrive

@stacey - thats good news that your Gp Is so supportive. i agree with lsgs to sack the diet. keeping the weight is more important right now :hug:

I got my letter from my rheumy today.. im booked in to see the nurse to start the sulfasalazine on 27th march.. shame its a month away. but im not doing too bad..

My blood tests were normal too.. but still havent heard about having the referral for a gastroscopy..
 
Thank you Bozzy! :) I feel so cool and powerful... and green. :p You better be nice to me about the whole gym & exercise thing now though because I now wield a ban hammer! :p Ha ha, just kidding of course. I can't wait to find some spammers though, I will ban them so hard! :D

And Bozzy, why does it take so long just to see a nurse? That's ridiculous. They know you're not doing well but they make you wait over a month just to get medication? That's really frustrating.

lsgs, out of curiosity, what kind of meat was yours? I had a turkey lunchmeat sub and I think that's what did me in. If it wasn't that, I had ground turkey in some pasta on Sunday night and that could have been the culprit if it wasn't the sandwich. Either way, it was turkey! That's what got me the last time I had food poisoning too, although that one was hubby's fault. (He improperly thawed some ground turkey that time - this time the ground turkey was properly thawed, which along with the timing makes me think it was probably the sandwich turkey meat and not the ground turkey.) Anyway, I am doing much better now and it sounds like you are too, thank goodness neither of us had a flare!
 
Cat-a-Tonic said:
Nathan!!! We missed you! I wondered what happened to you and how you've been doing! I'm glad to hear you were doing well up until now. Congrats on the engagement! But that sucks that it sounds like you're flaring again. Could you maybe see your GP sooner than April? My GP can't diagnose me or run many tests, but he can run bloodwork and can prescribe pred, so it is somewhat worthwhile seeing the GP if you can't get to my GI right away. Anyway, I'm glad to hear from you and I hope things get back to being good again very soon. Hang in there and thanks so much for the update! :)
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I can see my GP whenever I want basically, the only problem there is that she believe my old GI that it's IBS.

Oh yeah, and my eyes are absolutely itching off me.

I ran into a few highschool friends yesterday out to the mall, while I was getting a bite to eat (wasn't in the mood to cook, on account of being sick, and felt like spoiling myself). Great to see em. Kind of funny too, the one who hadn't seen me in the meantime mentioned how much smaller I've gotten. Yeah, at the very least 20 pounds. More likely up to 40 pounds since it all started.

Cat- Sad times you get hard up in the winter, I love the snow. Don't particularly like shovelling, but certainly don't mind it. I wish I could get out skiing again soon. Maybe next year.

Nathan
 
Nathan, winter is a mixed bag for me. On one hand, heat and humidity cramp up my guts, whereas breathing in the cold winter air seems to calm my guts down. I was so nauseous on Tuesday but I had to go to the eye doctor - I went outside and took some deep breaths and felt better, and made it through my appointment. So in that way winter is good. But on the other hand, extreme cold and snow (and also rain) makes my arthritis throb and ache. Shoveling is hard too because of the GERD - sometimes when I bend over forward to get another scoop of snow in my shovel, I can feel my stomach contents come pouring up my throat. That's not pleasant at all. So yeah, no matter what season it is, some part of my body doesn't like it. :p I prefer summer to winter though.

Can you switch GPs or get a second opinion from another GP who might take things more seriously? And can you see the opthalmologist about the eye itching? It could be iritis or uveitis or something along those lines, and as you probably already know, things like that are often associated with Crohn's. The weight loss is concerning to me too - were you maintaining your weight during the time whe you were feeling well? Is it only when you're feeling ill that you lose? Are you able to gain weight when you're feeling well?
 
I could switch GP's but she seems to take me seriously, she just has a different take on the information. I am very healthy, outwardly. I'm in great shape, and even on my worst days it's easy for me to be friendly, so since nothing is showing on tests I can see how she would have that opinion. I disagree, and she's willing to run tests/send me to specialists. As such I'm quite happy with her at the moment. Not ideal, but far from bad.

I maintained my weight between flares. I drop weight during flares. I probably could gain weight if I tried, but I'm not underweight yet. It bothers me too, but I'm sure the GI I'll see in April will have something to say about it.

I probably should go in to get the eyes looked at. I'll call in Monday I suppose.

Blechhh, GERD. Nasty. When I get nauseous I'll start to heave a bit and it'll start the way up. Doesn't get up in my throat (thank god) but still feels nasty. I'm pretty constant, hot, cold, doesn't bother me as long as it's not raining too much. You can never do anything in the rain.

How's work and everything for you anyways? You're still working administrative, was it? And your husband?
 
Thanks for asking, Nathan. I'm doing well for the most part. The IBD (or whatever it is) is still in remission (just got over presumed food poisoning though so I have had my share of tummy troubles this week!). The GERD is bad at times and it does come all the way up to my throat. I had a test to see how bad my GERD is, and it was almost off the charts bad - I had something like 48 separate episodes of reflux in 24 hours, and in about 20 of those episodes the acid/stomach contents did reach the top of my throat. So yeah, that's been not fun. My arthritis has been a bit worse lately but I'm hoping that's just due to the winter weather. I'm going to get it looked at again in a couple months to see if it has progressed. Yep, I'm still working a desk job in an office. The hubby is still looking for full-time work, he's currently working in a costume shop and he seems to like that although he's only making minimum wage there. I have been hitting the gym 5 or 6 times a week (except for this week due to the food poisoning) and that's been going great, the only time I really feel like a normal healthy person is when I'm working out. So, overall I'm doing okay, still having some issues but still in remission too so can't complain too much. :)

As for the weight thing, I was the same way back before I hit remission. I'd flare and lose weight, then I'd feel okay for a bit and could maintain my weight, but couldn't gain. Then I'd flare again and lose a few more lbs and so on. Now that I'm truly in remission, I can gain weight and lose weight like a normal person again. I've been doing really well with exercise and have kept my weight pretty steady while converting some flab into muscle. But anyway, I wouldn't trust remission if I couldn't gain weight. Maintaining is one thing but gaining seems to be a whole other thing. I hope your GI takes the weight loss seriously. That's one of the first things my GI always asks me, is how has my weight been since I last saw him. He takes weight loss very seriously and it definitely is a red flag for IBD. I take it seriously too and try to weigh myself every time I go to the gym. I have lost a couple lbs due to the food poisoning so I'm going to have ice cream with dinner tonight. :) Anyway, I'm rambling on again. How are you lately besides the flare-up and the engagement?
 
Honestly, life is doing really good. School is doing awesome, stressful of course, but I'm enjoying it. I'm looking for more work (just what I need) but the work I've got in the chemistry department is interesting.

You are probably right on the not remission if I'm not gaining weight point. Even while I was feeling better if I pushed myself too hard, or ate too shoddy, I'd have a few not so great days.

Uuughh, that is just horrible, can't stand puking, or anything close to it. I'd rather just be in bad pain. At least I can just suck up pain. Fingers crossed I never get pukey with this sick. I'm a bit nauseous, but I think it's just 'cause I've got gut pain. Though honestly, maybe I shouldn't knock it too bad. Last time I got stomach sick it cured me >.> ! Hahah

I don't mind joint pain, except the fingers and the back. It sucks, but I can tough it out. Good you're still hard at it. Good to hear hubby found something for the meantime. Hopefully something comes down the pipe.

I keep meaning to get to the gym. Hopefully I can get in a routine in the next few weeks. Just have so much work in school and comes in spurts. Hah, no work one week, then have to scramble all day every day for the next.

Nathan
 
I can't stand puking either. It is my #1 least favorite thing to do. Nausea is my #2 least favorite symptom, second only to puking. I am one of those very stubborn types who refuses to barf unless there is absolutely no other option. So yeah, the acid may come all the way up my throat, but it isn't leaving my mouth if I have any say in the matter. ;) It's been well over a year since the last time I threw up (for some weird reason my brain remembers these things) - close to 2 years, actually! The last time I barfed was because I had a bad reaction to medication and it made me super nauseous and I threw up in my kitchen sink. I've had plenty of nausea since then, mostly thanks to the GERD, but I haven't barfed since. I am *very* stubborn about not barfing.
 
i actually prefer the green! green and yellow are my favourite colours :)

in terms of the nurse appointment - I didnt actually tell the rheumatologist's secretary about the pain.. i just said i wanted to go on the meds and that some pains were starting again. so i didnt make a big deal out of it.
it is the clinic nurse who is doing it and the letter says that i will "receive some more detailed counselling about the treatment and some baseline monitoring tests as well as starting the treatment itself"

i then received a separate letter with the appointment on it.
im not too fussed. im sure if things got bad i could ask for an earlier appointment.

I have also booked to see my neurosurgeon again - ive had a cough and a cold recently, so my headaches have been awful. i cant cough without feeling like my head is going to implode.. :( my husband really doesnt want me to have the surgery (because it worries him).. and in my heart, i dont want to have surgery either... but its just getting so bad.


anywho - enough about me! (although im VERY interesting ;)) haha

@cat - i didnt know that was the result of you gerd test thingy!? thats insane the amount of reflux you have!
what meds are you taking for your arthritis??
 
Before last summer it was literally probably about 5-6 years for me. I hate it with a passion.

Then suddenly, last summer, BLLAARRGHHLLBLARRGH all goddamn day, from both ends. I threw up so hard that I gave myself a back spasm, and then my stomach troubles were eased for many months.

Fingers crossed I don't have to go to that extreme to feel better this time. :p
 
Bozzy, yeah, that was the test where I had to have an NG tube in for 24 hours and it was miserable. But it was worthwhile because I didn't realize my GERD was that bad. They give you a score on how bad your GERD is above normal, with 0% being normal and 100% being the worst GERD ever, and I scored a 95%. So it is very bad! They said that the longest single episode of reflux that I had during the test was over 5 hours long (and that was just one episode out of 48!). Pretty shocking! I knew it was bad but didn't realize it was quite that bad.

As for the arthritis, I am not really taking anything for it. I can take acetaminophen (paracetamol), and I can put sports creams on it, and I can put my heating pad on it. Those things all help a little bit - I'd say the heating pad is the most effective of the 3. Exercise (stretching & strengthening) has been the one thing that has significantly helped it - just another good reason to hit the gym regularly. I saw an orthopedic surgeon for it at one point, but he didn't think it was bad enough to need a steroid injection. I'm going to have my GP do another x-ray of my hip to see if the arthritis has worsened, because it feels like it has. I suspect it might have spread to my other hip & lower back too. I hope not, but I'll get it checked out to be sure.

Bozzy, when you had the steroid shot (I think it was in your knee?), how long did the pain relief last? I know you said the shot itself was painful and awful, but it seemed to work well for you for awhile? I'm wondering if my hip needs a steroid injection. I keep blaming my hip pain on the weather, and it's definitely worse in bad weather and we've had a lot of bad weather lately, but I don't know if weather could make it feel this bad so often. It's contributing, but it feels like things have generally worsened in my hip too.

Nathan, glad to hear I am not the only anti-puke person here. :) I recall having a conversation with a friend a few years ago, I was telling her about how I had anorexia for a few years in my teens, and she asked if I had ever dealt with bulimia too. I was like, EW, gross, no way, horrifying! So I hope you don't have to puke to get over this flare either - if that's the cure then the cure might be worse than the disease! :p
 
i had the steroid injection in october.. and i still dont have any pain :)

only thing to point out though,, is that the xrays and bone scan i had didnt show anything - in other words - i dont have arthritis affecting the bones. i just have some sort of inflammatory arthritis.
im not 100% how it all differs. because my scans showed issues with the bones in my feet and ribcage - but completely clear in my knees.

the pain i had with my knees sound exactly the same as rheumatoid arthritis ie: worse in the morning, worse if i stay still for a long time.. gets better if i walk for long periods etc...
 
oh.. and hang on one cotton pickin' minute cat.. i've just remembered that you threatened me earlier!!!

i might have to report you to david and just remind him that we dont want a dictatorship in the kingdom of undiagnosed club.

so.. next time you threaten to ban my ass for being annoying over your exercising regime... beware,.. you have been warned ;)

and yes, i get the irony.. what can i say.. pot? kettle?
 
Here is proof everybody - just before you burn the evidence cat (like every other dictator)


Cat-a-Tonic said:
Thank you Bozzy! :) I feel so cool and powerful... and green. :p You better be nice to me about the whole gym & exercise thing now though because I now wield a ban hammer! :p Ha ha, just kidding of course. I can't wait to find some spammers though, I will ban them so hard! :D
Click to expand...
 
I was away doing awesome Super Mod things that are too cool for you to know about. :p Ha ha! Okay, so I was posting about Korean dramas in my exercise thread because it's gone just a bit off topic in there. Anybody here watch K-dramas or listen to K-pop? :) Also, I totally get to be the dictator of this club, I founded it after all. Where are my crown and scepter, serfs??? :p I may need a sweatband inside of my crown so that I can wear it while I hit the gym, which Bozzy as you know I do all the time, and I would be happy to talk about in great detail here. ;) Sick of me being a super mod yet?

Bozzy, that's interesting about your arthritis. Mine is the opposite, walking makes it feel worse and jogging is just about impossible. Walking the dog when it's cold/snowy out is a good way for me to start limping, it's not good. But my arthritis presented similarly to yours - it's barely noticeable at all on x-ray. My GP said there's a very slight difference between my left & right hip on x-ray, so he felt there is mild arthritis there. But when I saw the ortho surgeon, he re-did x-rays and said that not everyone is perfectly symmetrical, and that the difference between my hips is so minor that it could actually be just a natural asymmetry and that I might have bursitis instead (which wouldn't show up on x-ray). The physical therapy treatment for arthritis is strengthening, and the treatment for bursitis is stretching. Both seem to help my hip, so who knows! I do feel like I have arthritis, my GP stands by his diagnosis in spite of what the ortho said, and with the worsening pain in bad weather it must be arthritis.
 
Oh no... cat's on a power trip. i shall not bow down to you! I might have to start a coup..
who is with me?!? *tumble weed*


Haha.. moving swiftly on.. ive not seen any korean dramas.. or heard any k-pop j-pop. unless gangnam style counts? (You must hate that song!)

I think i have two joint issues.
1) my knees have inflammation.. the pain was eased by walking.. and hurt most in the morning or if i stayed in a particular position for a while. pain was sharp and hot.. like my stomach pain. and the pain flares to unbearable then goes away (just like my hip, arm, chest) and nothing showed on the bone scan except my chest

2) my ankles/feet - which showed issues on the bone scan. those joints hurt when im walking.. and fine when resting. and this affects me when cold too... amd generally present all the time
 
Bozzy, your arthritis pain sounds much different than mine - I would describe mine as a dull ache which sometimes feels like a throbbing pain. Not a sharp pain and not hot like yours. The ache is dull but gets stronger if that makes sense. It's quite bad today - I actually asked hubby to pull my cane out of the closet yesterday and I practiced walking with it a little bit. It's not bad enough to make me limp yet (very close though) so I decided against using my cane. I feel weird walking with a cane, like I'm way too young for this! :( When it gets really bad, I feel the pain go into my good hip and also into my lower back, and I felt that happen last night. It's slightly better today but still pretty bad. Yuck.

Hah, Gangnam Style does count as K-pop but just barely. It almost made k-pop a joke, people thought that's all there is to Korean pop is a silly fat man doing a silly dance and didn't look any further into the genre than that. I'm pretty obsessed with Big Bang, they're a deliciously gorgeous Korean singing group and they have some really good songs and are far less silly (usually). I'll send you some links later if you're interested.
 
My knees are a sharp pain but my arm and thighs have a dull ache.. its like when my brother used to punch me in the arm to give me a "dead arm"?? Dont know if you had a sibling who did that to you lol..

im not even sure how mine works.. just i know they are painful.

Yeah send me some links.. i'd like to think im quite diverse in my music tastes.. generally like a lot of things. EXCEPT JUSTIN BEIBER.. AND ONE DIRECTION... they are just plain wrong haha
 
But I know you like Justin Timberlake! :p I don't like Bieber or one direction either (why are they called one direction when their hair goes in all different directions??). Ha ha, yeah, I'm diverse in my music tastes too - I like Korean AND Japanese pop. :p I'll PM you some links later on. As awesome as it would be for k-pop to take over every thread, I don't think anyone besides me would think it's very awesome. ;)

My brother and I used to beat each other up regularly but I usually won because I'm 5 years older and he didn't grow to be bigger than me until I was already in high school, and by then we had sort of grown out of beating each other up (he's my only sibling). So yeah, he never really gave me the "dead arm" feeling but I think I know what you mean. Dull ache definitely describes my hip pain, and it stays dull but gets stronger/more intense at times without actually getting sharper. Sometimes the pain is gone altogether, it was gone for quite awhile (like the entire summer) but has come back with the bad winter weather and seems to be sticking around lately. It gets significantly worse before and during rain or snow and is very bad today with the snowstorm we're in. The weather is supposed to be quiet and not snowy this weekend, so I'm hoping the pain will ease up soon.
 
Hey guys, we're officially a support group now. :) If you've subscribed to the thread then you're automatically subscribed to the support group too. If not, there's a button at the top left of the screen (next to "post reply") to subscribe. If it says "unsubscribe" then you're already subscribed. A little confusing since this is a new feature of the forum. You don't have to be subscribed to post in here, either, so you don't have to subscribe if you don't want to. (This is all new to me but I *think* this is how it works!)
 
Good Afternoon beautifull people

Well the Dietitian has called me, must of got the letter from my GP as the diet woman wants me know to sacked the diet and eat whatever i can when i can as much as i can and booked me an appointment for the GI for tomorrow afternoon

so see what happens tomorrow

xxxx
 
Thats really good that your dietician has sacked the diet. Good luck with tomorrow's appointment :hug:

@cat - have you heard from star or allie lately??

Just sat in the hospital with my mum now... waiting for her cystoscopy.
My bm's have not been good recently :( and my joints are slowly getting worse... boo!
 
Stacey, I'm glad you're off the diet. Good luck with the GI appt tomorrow - let us know how it goes!

Bozzy, good luck with your mother. I hope it's all good news. As for Star & Allie, I've seen them around on Facebook more than on here. I haven't heard any real updates from them lately though so I assume all is pretty much the same. Ladies, if you see this, let us know how you're doing lately!

I'm sorry to hear your joints and stools are getting worse again. :( I'm trying to remember, you see the nurse for sulfasalazine next month, right? Do you have a GI appointment or rheumy appointment coming up? And what, if anything, is being done for your chiari? It sounds like you have a lot going on but aren't getting a lot of help for any of it. My joints have been bad too lately so I can relate, although fortunately my bowels are pretty quiet. I got my cane out of the closet the other day, haven't had to use it yet, but haven't put it away yet either. Every time it snows my hip aches like crazy. The worse it snows, the worse my hip is. Exercise is only doing so much to take the pain away - exercise used to make my hip feel SO much better and now it just makes my hip tolerable. I think I'm getting worse so I feel for you, it's not a good feeling at all. Yuck. Anyway, good luck today and I hope your mom is okay - keep us posted, and I'll keep you in my thoughts. Big hugs!
 
Well.. my next rheumy appt is in july. (With the option to have an earlier appt if necessary)
And I see the clinic nurse next month to get started on the meds

In terms of my chiari.. I am going to see my neurosurgeon in april. He has already offered me surgery.. and that is all he can offer. So im not sure I even want to see him... because what is the point if I dont want the surgery??
:( im just a bit stumped if im honest. Im going to ask if he will do another mri scan to check if my chiari has got worse..

My rheumy requested a 2nd opinion referral to a GI. But I haven't heard anything about that. To be honest I dont know if I want it all investigating again. Although I have rough times with my bowels. . It is very manageable, and nothing I haven't dealt with before...

:( :( :(
 
I need some support and a hug today. So much has been happening.

My bowels don't work unless I take a laxative. I'm tired of planning my life around bowel clean outs.

My implanted port has to be replaced due to cellulites infection at the port site. It takes two surgeries to replace a port. One to remove it and then wait 48 hrs while on IV antibiotics etc. and then have second surgery to put in a new port.

I was in the ER again this past Friday and was assulted by a nurse who did not read my chart and put something on my skin that I was allergic to. I tried to tell her no, but she wouldn't listen. She still grabbed my arm and became very physical with me. I told her she had no business touching me since it was obvious she hadn't read my chart and that I wanted a new nurse. She had even argued with me about what size needle to start the IV with. She was trying to use a huge needle. The IV team at the hospital uses a small adult needle on me as I am not a large person and I have CRPS. She went and got the charge nurse claiming I was combative. She had no idea that the charge nurse knew me very well. The charge nurse agreed with me. That nurse had no business touching me. The charge nurse even verified that what I was allergic to was in the system and it was. That nurse got caught! Had another nurse put the BP cuff on too tight and left a bruise on me. My hand swelled up two to three different times its normal size and turned red and blue. The nurse claimed that was normal. Bull doggies! Now my doc and I are wondering how this is going to affect my CRPS.

I'm currently doing IV antibiotics at home through a peripheal line that has to be replaced every three to five days. Ouch!

Our sick cat passed away last week. I will miss him. He was my son's best buddy.

It's dark and rainy outside. Can't wait for sunshine and to get through all this.

Hubby will not be here for my surgeries. He has to take care of his mom who had surgery.

I know God will not give us more than we can handle so I'll pick myself up, dust myself off, put on my brave face and move forward.

Thanks for letting me vent...
 
Oh Naturelover, I'm so sorry to hear about all of this! That's just an overwhelming amount of awful stuff happening in your life lately. :( I'm glad that at least the bad nurse got caught - I'm hoping she got disciplined? Is there a way you can request to not have that nurse again? I'm very sorry to hear about your cat too, I don't know what I'd do without my pets. I don't have children and the hubby is sometimes clueless about what I go through, so my pets are pretty much my at-home support system, and obviously I'm a cat person more than a dog person (not that I don't love my dog, but she's goofy and needy whereas my cat is much more subtle and quietly comforting). Sending you a big hug from the chilly midwest, hun. I hope things get better soon.

And I hear you on the weather, I have been ready for spring for quite awhile now. Every time it rains/snows, my arthritis gets very achey. Guess what, we're supposed to be getting another 4ish inches of snow which should be starting any minute now. Ugh, so sick of the weather causing me pain.

Bozzy, how did your mom do with her tests? I think that is a good idea to get another MRI - can chiari progressively get worse? I don't know quite how it works. I can't believe there aren't any medical options besides surgery either, that just seems crazy to me that that's the only option they've given you. As for the bowels, I seem to recall that you have several indicators that it might be IBD, correct? I believe I remember you mentioning that pred worked, and didn't you also have episodes of having to get up in the middle of the night with d? Sorry if I'm remembering incorrectly. But anyway, I can definitely remember thinking in the past that your case didn't sound like "just IBS" to me. Just my opinion, but I think getting a second opinion from another GI sounds like a pretty good idea. If it is IBD, and it's going untreated for this long, it could come back with a vengeance later. You don't want to develop scar tissue, strictures, etc if it could be avoided. Just my two cents anyway. Hang in there, I hope all went well today. Big hugs!
 
Just wanted to drop in briefly.

Still waiting to her about pain management and fatigue management *sigh* Will start chasing soon I guess.

Some of you may know my granddad died at the end of September. Well now my american granddad has been given a month to live :(

I am not handling it well especially because it has been many years since I saw him and I will not be able to now. I am hoping my Grandma will sort out Skype for their computer though.
 
Aw Star, I'm so sorry to hear this. Big hugs, hun. I remember how devastated you were when your grandfather passed away, I'm so sorry that you're going through this again with your other grandfather. It's just not fair. I hope your grandmother can figure out Skype (FWIW, my grandfather does Skype and he's 81, so hopefully if he can figure it out then your grandmother can too). Even if you can't skype, can you still talk on the phone? I'm not sure how international calling works or how expensive it is, but hopefully there's something you can work out.
 
We can talk on the phone, we get free international calls every weekend and week day after 7pm as part of our phone package, so I will call them, just would like to "see" him in some form :(
 
Good Morning Peeps

Outcome from yesterdays appointment with GI

he cant understand why i have weight loss as he strongly believes that i have a bad case of IBS :/
so he has ordered complete blood work and a stool sample

he has also prescriped me a pill that after i googled is used for depression so i called his office and and the GI nurce say its also used for bowels and pain relief
not sure so i am gonna ask my GP for a second Opinion

what do all you think about this drug Amitriptyline is it commonly used for the treatment in IBD/ IBS

so in the next couple of days i need to get my stool sample done and taken to the hospital where they will be doing a complete blood works

i did get the impression that he was annoyed to see me so soon as he strongly believes that i have IBS but its strange that i have the weight loss ?????

i hope everyone is well

sending much love

xxxx
 
Star you've been waiting an awful long time? Any idea how long it should take?

Stacey, I've been on amitriptyline before but a long time ago, about 10 years ago for me. It's sometimes used for chronic pain management, not necessarily depression. It didn't do much for me. I think Cat is on it though so I'm sure she'll be able to tell you more.

So glad they have ditched the diet. Same thing happened to me, my diet became so restricted and encouraged the weight loss when you really need to be eating anything you can stomach. My family regularly delivered indians and mcdonalds to my hospital bed :D the other patients were raging, haha.

Do you know what stool test they have ordered? Have you had a calprotectin done before?

Your GI sounds horrible tbh. Just remember they are human and make mistakes, they made plenty with me!! IBS is a catch all for something they can't diagnose. It doesn't actually mean very much.
 
Hi Isgs

He has ordered the following

FBC
ESR
U/E
LFT
TFT
UREA
CREATININE
CRP
CALCIUM
CAEHAI SCREEN
EWREMI PATHOGEN SCREEN

i am giving him the benefit at the mo as i am sure that he will get me sorted as its prob a difficult one as he cant find anything on the MRI or scope

but he did seem worried about the weight loss as was my GP and Dietician

i would love to be able to eat a maccy d or some Indian but it would batter me so i am avioding any of that atm

however i might treat myself to a M&S lunch mmmmmmm

Thanks for the feedback ill wait for cat to come on and see what see says on the pills

Thanks Hunni

xxx
 
Stacey.. ive been on that medication too. Only higher doses is used for depression. I think the lower doses just dull the senses a little bit to stop for your bowels being triggered to spasm.. at least that is how I understand it.

I was actually put on it for my strange sensations of not " being with it" and it didnt make one bit of difference to me.

Cat - chiari can get worse unfortunately :-( over time the herniation of my brain can get larger.. and as it gets larger it can block the flow of the fluid around your brain. This then causes a syrinx in your spinal cord (a fluid filled sack) and this can damage your spinal cord. . Worst case paralysis. But VERY rare.
A chiari is classed as your cerebellum being 5mm below the opening to your skull.. mine is 12mm below!!

In terms of my bowels.. yes pred did work and everything you remembered is correct. Im just so used to it.. and my weight is steady. If this changes.. and my symptoms become unbearable, then I will chase it up.

Star - im so sorry to hear about your grandad :( has he got plenty of family close by? Xx

Naturelover - that nurse needs a kick up the backside! Im so glad the other nurse could back you up. Big hugs.. I hope you feel better soon xxx
 
Stacey, as lsgs said, I am on Amitriptyline too. I take 25 mg every night (you have to take it at bedtime because it will make you sleepy, not sure if they told you about that). My GI put me on it because I was experiencing chronic headaches from Entocort. Amitriptyline stopped my headaches and also usually prevents my migraines. It can supposedly calm down the guts but that is more for IBS than for IBD. But I would say give it a try and see if it works for you. If you experience regular headaches/migraines, or if you have a hard time falling asleep, it should help with those. For me, it's worth it for those benefits even though it doesn't affect my gut. I've been on it for over 2 years now and I'm happy to stay on it. Let me know if you have other questions about Amitriptyline. What dose are you starting on?

And as for the blood tests your GI has ordered, I know what some of them are. FBC is full blood count - I think that just looks at how many red & white blood cells you have? Not entirely sure but I know mine is always normal. ESR and CRP are inflammatory markers which are often but not always raised when you have something like Crohn's. So those may be high or they may come back normal. Creatinine is something to do with kidney function so that should be normal.

Star, I hope your grandparents can figure out Skype. Your father lives near them, right? Can he help them set up Skype? Anyone else in your family in that area who might be able to help them out? Big hugs, hun, and I hope you're able to make the most out of the time your grandfather still has left. Hang in there and take care of yourself too in this sad and stressful time.

lsgs, how are you doing lately? I hope all is well (or as well as can be expected)?

Bozzy, how did your mother do with the tests? And yikes, 12 mm sounds scary! It's crazy that such a small amount can mean such a big thing. I have some weird benign tumors on my liver, and the MRI results said that the largest is between 2 and 3 cm, which sounds gigantic to me! My GP thinks they mis-wrote the results, he thinks it's between 2 and 3 mm (not cm) but either way, I don't like knowing that there's a thing of a definite size growing on my liver (and there's 3 other tumors on my liver besides that one). It's just insane that a few mm here and there can affect someone's life so much. And that really sucks that chiari can get worse. How many mm until surgery is absolutely necessary? Do they have a number like that? For my tumor things, they said if it grows to be 8 cm (or mm?) then I have to have it surgically removed. So I am really, really hoping it never gets to be 8 cm/mm/whatever.

How's everyone else doing today? I am feeling kinda crappy. Hubby made dinner last night and there were shittake mushrooms mixed in with the pasta. I know I can't digest shittake but I ate it anyway. Had d this morning and there were big pieces of undigested shittake in my stool, lovely. The guts are grumbly and I have a headache and am just generally sort of sore and run down. Blah. I like mushrooms but they don't like me.
 
Hi Cat
he has put me on 10mg so not an high dose, yerh he said about the night time thing so ill give it a whirl

thanks so much girls its a great help and reasurence

Sorry that your feeling crappy i love shrooms but they also hate me when i was a kid my pops used to make me mushrooms in milk with salt and pepper it was lush but now i cant touch it at know

but i think i am just gonna say sod it tonight and treat myself and long suffering hubby to a Pizza

Loads of Love
xxxx
 
My mums tests went really well. So well in fact that the didnt need to do any biopsies! They think she has an irritable bladder and a prolapse (which will get repaired at a later date)
What is annoying... is I have a feeling she led me and family on. In other words, she insinuated it to be something sinister and letting us all think that too.
Because she told me how the urologist was really blunt with her and VERY concerned. Yet when I met him.. he didnt come across like that at all. In fact he didnt sound at all worried.
I hate saying this about my mum. .. but she is a very selfish, attention seeking person.

Anywho... ive had to leave work early today. I feel very "off" and weak. I went to the walk In centre to see a GP there. There was an hour wait - but they took me straight in. He spoke to a neurologist (who was on call at the hosp) ... it has been agreed that I have a few days rest. Then the neurologist will call me in 5 days.. to see how I am. Then book me in for a proper appointment.

Surgery is only necessary for chiari if I develop a syrinx or have drop attacks (ie: if I cough/laugh then black out) .. surgery is optional if you have val salva headaches (which I have) so you choose surgery on a quality of life basis.
The herniation doesnt really matter. Someone can have a 5mm chiari with a syrinx and severe headaches. Somebody can have 20mm herniation with no symptoms at all!! Its crazy...
 
Stacey, I hope you're able to enjoy that pizza! I love pizza too but it usually doesn't love me back. As for the Amitriptyline, 10 mg is a good starting dose. Anywhere between 10 and 25 mg can be beneficial for the bowels, for headaches, etc. You'd have to be on a much higher dose, I think like 150 mg, for it to work as an anti-depressant. Are you taking your first dose tonight? If so, you might be very groggy tomorrow morning. It took me a few days to get used to it but after that I was fine.

Bozzy, I'm glad you're able to rest for a bit. As for your mother, I'm sorry to hear that she's over-dramatic and selfish. Sounds a bit like my own mother - there's a longer thread about this in Members Only, but in a nutshell - my mother decided awhile ago that she has celiac disease and that I do too (even though multiple tests say I definitely don't, and she's never been tested, and neither of us has a problem with wheat/gluten). She tells people she's been diagnosed with celiac even though she's never seen a doctor for it. She makes it an issue at every meal and berates me for eating gluten, because apparently if I just go gluten-free then I'll have Magical Perfect Health Forever (sarcasm!). She's deluded and it's sad, and it's also really damaged our relationship. So I feel for you, it's really tough when a parent is like that.

And wow, chiari sounds like IBD in one way at least! Severe illness doesn't always mean severe symptoms, and mild illness can produce severe symptoms sometimes. How bad are your headaches? How seriously are you considering having surgery?
 
Hi Cat

No Pizza when for Homemade oven chips and fish fingers

no gonna take first dose tonight as i need to be on the ball for work today

Thanks for putting my mind at ease

Xxxx
 
Good luck with the Amitriptyline tonight, Stacey! I would say take it about 30 mins before you go to bed, so that it has a little time to start kicking in. One thing to be aware of - if you have to get up in the middle of the night for any reason (like to use the bathroom), you may feel dizzy or disoriented. That's a common side effect of Amitriptyline and it isn't anything to worry about, but just wanted to let you know to be careful if you do have to get up in the night.
 
Hey peeps, I'm back again...it's been a while, and I hope everyone is well! I disappeared from the forum for a bit back in mid-January, when my doctor called and said she thought I had post-infectious IBS. Didn't seem quite right to be posting here when I had a diagnosis , first of all, and a diagnosis that wasn't IBD, second of all.

My symptoms were actually improving for several weeks. I even started back into a regular running routine. Last Saturday I started having pain in my lower right abdomen again, which isn't unusual. What is unusual is that the pain hasn't gone away. In fact, on Thursday, it seemed to get much worse. I'm nowhere near where I was when I had to go to the hospital back in November, but I feel probably as bad as I've felt since I left the hospital. I even had a little bit of diarrhea on Thursday. UGH.

So, I pretty much have no idea what to do. I'm not sure if this is just a normal setback and I'm just being a baby, or if I should alert my GI (our last call went along the lines of
"Call me in six months if you don't feel any better.") You guys are awesome - I feel so miserable about feeling sick again, and this is the place I thought I could return to for support. I hope everyone is doing well!
 
Hi theseithakas, welcome back - sorry to hear you're not doing so well! I agree with Star, definitely call the doctor and let them know what's going on. If your GI blows you off, then it's time to find a new GI. Is your GP good? Could you see them immediately while you find a new GI?

You mentioned feeling better for awhile - did that time coincide with you taking any medication for the supposed post-infectious IBS?

You can always come here, even if you get a diagnosis that isn't IBD. We're always here to support you! And I will never kick anyone out of the Undiagnosed Club no matter what their situation is so don't feel like you don't belong here. Big hugs, I hope the pain eases soon and that you can keep running! I've been working out pretty much daily myself so I know how important that is! Hang in there!
 
Good Afternoon my lovelies

well the Amitriptyline works it numbs everything no pain all weekend and no BM however the one downfall to this drug is the feeling of being a zombie i was totally spaced out all weekend so i thought as i had a important meeting this morning where i had to be on the ball i did not take one last night and now the pain has come back i cant eat and i have the watery BM back so i have to choose to be totall pain free and be a zombie or live with the pain and be the normal sharp me

help what do i do

a very fed up stacey

hope everyone is all good

xxxx
 
Hi Stacey, I was on Ami for several years, once the first month went by and I went from 10mg to 20mg I felt so much better. I was so drowsy on it the first month never got past 10pm before I was sound asleep lol.

If it was me I would persevere and give it more time. It is usually 4-8 weeks for ad's to work so the fact that it's improved your bm's already is very encouraging- so perhaps with a little more time your body will adjust and the fog will lift.

You could also experiment with the time you take it, night time is quite a long period, perhaps a few hours earlier would suit you better?
 
Stacey, I agree with Star. It took me a little while to adjust to Amitriptyline, I was so groggy the first few mornings, but as I recall it was maybe a week or two of that and then I was feeling fine and normal again in the mornings. So give it some time, it'll be a period of adjustment for a bit but then you should feel more normal again shortly. I wouldn't advise skipping doses or it might just take longer to get adjusted to it. I like Star's idea of taking it earlier in the evening (although you might be falling asleep by 7 or 8 PM that way, but you should feel better in the morning). I've been on Amitriptyline for so long, over 2 years now, that it doesn't knock me out like it used to. I find myself sometimes waking up multiple times in the night and I never used to do that the first year I was on Ami. Just last night, I woke up at 4 and then had to do the math in my head to figure out how much longer I could sleep before my alarm went off, then I kept waking up every 20 mins or so, very annoying. So you can definitely adjust to Amitriptyline, sometimes too well in my case! I wish it still knocked me out like it used to, but it still prevents my migraines so I can't really complain. Anyway, I'm rambling on again. I hope that helped - let us know if you have more questions, and I hope you start to feel more human and alert again very soon.
 
Just thought I'd give a quick update... I feel like rubbish :(

I managed to get an earlier appointment at the hospital to see the nurse practitioner... and went today.
Ive got my prescription of the sulfasalazine. I start on 1 x 500mg tablet - twice a day for 2 wks.. then 2x500mg tab in the morning and 1x500mg tab at night for 2wks.. followed by 2x500mg tabs in the morning and night.

Fingers crossed this works.



EDIT:
my SAPHO diagnosis isnt certain now.. he is saying Seronegative inflammatory arthritis... which is why the medication is a trial for me. I honestly don't think he knows to be honest!! Haha he just says my positive reactions to steroids and hopefully this sulfasalazine too - adds weight to a potential diagnosis....
 
bozzylozzy said:
Just thought I'd give a quick update... I feel like rubbish :(

I managed to get an earlier appointment at the hospital to see the nurse practitioner... and went today.
Ive got my prescription of the sulfasalazine. I start on 1 x 500mg tablet - twice a day for 2 wks.. then 2x500mg tab in the morning and 1x500mg tab at night for 2wks.. followed by 2x500mg tabs in the morning and night.

Fingers crossed this works.
Click to expand...

Awwh how come you're feeling so rotten? :( really hope the sulfasalazine goes ok!
 
Thankyou lsgs :)

Just so fatigued and achey.. plus starting to get stabbing pains on either side of my abdomen with BMs getting worse again too.. just generl bleurghness haha
 
Aw Bozzy, sorry to hear you're not doing so well. I hope the sulfasalazine helps. How long until it kicks in? As for the fatigue and aches and bowel issues, I need to say it - get back to the GI! You've said in the past that your symptoms are something you can deal with, but it sounds to me like it's getting worse lately. The fatigue and aches may be related to the bowel issues (when I flare up, I get horribly achey in all my big joints and deep down in my bones, and I get really fatigued too). I hope you feel better very soon and that the sulfasalazine works wonders for you. Big hugs, hun!

Hi lsgs, how are you doing lately? I'm trying recall, you're on aza/imuran, right? How's that been going?

Not much new with me. My arthritis still aches every time it snows, which is like every other day lately. We're in the middle of a big winter storm right now and my hip was achey up until it started snowing, now it's feeling somewhat better. I'm still working out every day and loving it. The guts are pretty happy these days as long as I don't eat anything iffy. The GERD is pretty much the same, so-so controlled but gets kind of crazy when I work out. Pretty much same old, same old for me. I see my GP on Monday and I'm going to have him re-check my arthritis as I suspect it's spread. I sometimes get pain in my "good" hip and my lower back too, and I've also had some left knee pain lately. Wish me luck!
 
Hi Cat, I've not made it onto Aza yet! I'm waiting on my MRE first of all, at least if I don't chicken out of it first!

I'm quite confused by what my docs are saying but they might put me on sulfasalazine if anything shows up in the MRE. That's very unlikely though considering how well I'm doing on pred.

My GI doc basically told me to go away and research whether I wanted to stay on pred or go on aza, then the three of us would decide. The rheumatologist wants me on 5mg pred long term if I stay well and the GI feels being on aza would be less risky, despite the cancer risk (I'm already at 44x lymphoma risk due to my sjogren's syndrome, so adding aza in the mix can't be great?)

To be honest I've been in complete denial about having to make a decision. I see both of them again next month and I am no closer to knowing what to do!
 
lsgs, I forgot you were still on pred too. Yeah, I would wonder what, if anything, would show up on the MRE with you being on pred? My GI flat-out refused to put me through any tests while I was on steroids, and he won't do any tests while I'm in remission either (I did have an upper endsocopy in November, but that was to look for GERD-related issues, not IBD). It doesn't make sense to me, so you might want to call your doc and explain things. Worse case scenario, they may pull you off of pred for awhile and try to cause you to flare before the MRE. I know that sounds awful, but at least the test wouldn't be in vain then. I had to be pulled off of pred to have my pill cam, I hated that but I knew it was a necessary evil (of course just my luck, the pill cam didn't find anything anyway). The MRE sounds like it's so icky/invasive that you want to get a good result out of it and don't want to do it over again or anything like that, so if it were me I'd probably ask to stop pred to hopefully get a worthwhile result.
 
Hi everyone!

I'm glad I found this support group. I've posted my story in the newby group but maybe this would be a better spot.

In shirt I've been sick fir about 5 years and have been through so much. Recently I was seen by a rheumatologist and he did an inflammatory bowel panel which along with bleeding and constant pain, skin rash and nausea, he believes I may have crohns.

I see a GI DOC ON THE 18th so we should see. He really wants them to do the pill cam as my pain is constant in my right upper abdomen. I'm so tired after all this time of searching I just want to be rid of the pain.

Thanks for reading.

C
 
Hi Cassy

Welcome to the our support group

everyone on here are all in the same boat and we are all very supportive kind reasurring and with a weath of knowledge

im glad that your in to see your GI soon as this can be a long road to a diagnoses

If there is anything your not sure of please dont hesitate in jumping on here and having a good rant or just for some reasurrence

All the Best
Stacey
 
Hi Cassy! Sorry we have to welcome you to the group. I'm glad you're seeing a GI soon, hopefully you'll get some testing done and get on the road to diagnosis, although as Stacey said it's not always easy. It's funny how rheumatologists are often the first ones to recognise IBD, that was the case for me and a couple of other people in the group too.

Cat, I completely agree. My doctors are not covering themselves in glory in the way they have organised things. I've also just got a letter saying my GI appt has been cancelled and rearranged for three weeks later which is a huge pain as I'm going on holiday the following week. That means either another delay to starting aza (meaning staying on pred longer!) or starting aza while on holiday which is not a great idea! My GI and rheumatologist were meant to discuss it after my appts in April and it just means another delay. They've been talking about having me on aza since Aug 2012 and I'm getting a little impatient now, because I'm so fed up of pred!

I'm also loathed to go through the MRE while on pred and knowing it's not going to show anything but my GI said it's important to get it done even though he admits he doesn't think it will show anything. Then again another doctor ordered the test and he's hardly going to disagree is he?

Who knows though, we never thought the faecal calprotectin would show anything and it keeps getting worse!
 
Hi Cassy, welcome to the club. Good luck with the pill cam - I hope it can get you some answers. A few of us here in the club have been through the pill cam and it's a fairly easy test - they may make you do prep beforehand, and if so that is the worst part of the test. The test itself is easy peasy, just swallow the capsule, wear a belt-contraption recording device thing, and wait about 8 hours! Let us know if you have questions about it. Good luck with it, keep us posted and I hope you can get some definitive answers soon!

Stacey, how are you doing? Any better now that you're off the diet?

lsgs, I don't suppose you can contact the doctor who ordered the MRE and try to talk some sense into him? And that stinks that your GI appointment was pushed back. If it were me, I'd wait until after the vacation to start aza. You don't want to have some sort of reaction or something while you're on vacation!

Speaking of bad reactions, my poor Crohnie aunt is at a loss right now. Everybody please think happy thoughts for her! She was on Asacol and it was working so well, but she developed an allergic reaction so she has to come off of it. (Auntie, if you read this, join the forum already!)

How's everyone else doing? I'm okay but my guts didn't like last night's dinner. Which is weird because it was 3 ingredients - broiled eel (always been a safe food for me), rice (always safe) and avocado (also always safe). Maybe it was the combination of the eel and avocado, like there was too much fat content in that combo or something? At any rate, the guts got pretty grumpy about that last night. I'm doing better today. It always irks me though when I eat something that should be safe but the guts revolt anyway. I wish I could talk some sense into my digestive tract!
 
Hi cassy! Welcome to the group! Nothing much for me to add, but we all help each other out through stressful times.. and just ask anytime if you need any help xx

Had a little surprise today. .. my GP called me! Apparently he has been off ill.. and only got to review my latest blood results today.. he said that it showed some irritation to my immune system pointing towards an allergy/intolerance of some sort. So he is referring me to an allergy clinic.

Dont know if you remember.. but I have been dealing with a strange itchy rash since December... plus feeling sore inside my nose. Ive been on strong antihistamines that have helped a lot.. but the minute I forget to take it.. it flares up again.

Its just made me think.. what if im intolerant to something all along causing inflammation? ? I already know im intolerant to strawberries haha
 
Bozzy, it's kind of funny, I mentioned my Aunt and then I saw that she had already registered and posted! :p Here's her thread:
http://www.crohnsforum.com/showthread.php?t=48427

And personally, I think it would be just about the best scenario possible if you had an intolerance/allergy that was causing a lot of your issues. Then all you'd have to do is cut out that food, and theoretically you'd feel a lot better! I don't suppose you keep any sort of a food & symptom journal? If not, now might be a good time to start - then you can have some data to show the allergy clinic. Good luck, I hope you can get in to that clinic soon and that they have some good answers for you.

So I got hit with a nasty wave of nausea this afternoon. Tried going to the gym anyway, what a joke. I could only do about half of what I wanted to accomplish. Took a Zofran afterwards and went from nauseous to hungry - seriously? My body is so confusing sometimes. I'm chalking up the nausea to the fact that last night's dinner didn't agree with me, but I get really frustrated when this kind of thing prevents me from working out. It's so unpredictable too, even in remission. That's my little vent of the day.
 
Yeah I really hope so too cat.. im just so tired!
I have never done a food diary... I guess I just stuck my head in sand.. I dont like the thought of being intolerant to something I love to eat haha.. because I won't want to give it up!

I just looked on your aunties thread... $1000 for 1 months medication?:!?! That's ridiculous! How can anyone afford that?.. NHS prescription is only £7.65 no matter which drug it is and regardless of quantity. This seems so unfair for you guys across the pond :(
 
Yeah, the cost of medication is crazy here if your insurance won't cover it or if you don't have insurance or anything like that. My insurance is pretty good and covers most of the cost of my meds. Generics (stuff like Amitriptyline, Ranitidine, Ondansetron) cost me $10 per month. Name-brands cost more - Nexium costs me $25 per month, Asacol and Entocort cost $75 per month. Without insurance, Entocort would have been over $1000 per month for me too, and Asacol would be over $500. I'm very lucky to have decent insurance, but even so I pay kind of a lot (that $75 every month for Asacol just kills my budget, and it drives me nuts when I pass undigested Asacol tablets because I can feel myself getting poorer!). Without insurance, or if my insurance decided not to cover my meds, I'd be stuck. And if I get sicker, I'm not sure what I'll do - things like Remicade & Humira can cost over $4,000 per infusion/injection and insurance doesn't always cover those either.

So, can I move to the UK? Because the NHS always sounds so lovely to me. :) Even Canada has got a way better system than we do. I like my home and my city, but I do not like our health care system here. I was marvelling the other week because my dog had to go to the vet for a skin infection, and she got to see the doctor, have tests run, and get several medications - all for the grand sum of $80. Hah, I can't even walk in my GI's clinic for less than $150, and my meds and tests cost WAY more! So I decided I would like to go to the vet from now on. I'll wear a flea collar or the cone collar, I'll bark or meow or whatever, I don't care but as long as it's that cheap I'll do it! :p

Bozzy, I know the feeling, I have had to give up so many foods with this stupid illness, and if I found out that one more is giving me trouble, I don't know what I'd do! For me, I really love mushrooms, but they are really giving me trouble lately. Particularly shittake mushrooms (hm, no irony there! ;) ). I cannot digest them at all anymore and they cause such trouble and come out completely undigested. But they're soooo yummy and I just don't want to give them up. I don't want an obstruction either though so I guess no more shittake for me. *cries*
 
Hi everyone and thanks for the warm welcome.

Cat, I want to mention that some drug companies offer assistance for financials. I was in enbrel for my psoriasis last year and the drug company paid my $80 copayment for me. I hope this helps

C
 
Thanks Cassy. :) I looked into assistance for my Asacol but they only seem to offer financial aid for Asacol HD and I'm on regular (non HD) Asacol, so no luck there. I do get a discount on my Nexium from the manufacturer, all I had to do was go to their website and print out a coupon and give it to my pharmacist. I save $40 a month that way (so I would be paying $65 a month otherwise, but with the coupon I only pay $25 a month). I think I had looked into financial aid when I was on Entocort a couple years ago, but I don't recall finding anything for that one either. So, 1 out of 3 for me. Still, I'm glad to at least save $40 per month on the Nexium, that amount is nothing to sneeze at.
 
Happy mothers day!

I went to a spa yesterday for a full body massage (using my vouchers from my birthday)
It was great... but also painful on my rib cage - left side only - which I guess coincides with chest pain/inflammation ive been getting.

As I was talking to the lady who was doing the massage, it turns out she suffers from Crohn's. So that was an interesting conversation haha!

I go to see the neurologist tomorrow. . Wish me luck xx
 
Good luck for tomorrow bozzy! :) a massage sounds lovely right about now.

Cat, I am hoping the MRE appt will be after my rheumatology clinic early April. That way I can chat to him about whether it's worth it.

I think my body is starting to feel the deficit in steroids now I'm down to 7mg. I keep having episodes of weakness/palpitations/faintness/shakiness and it's not anxiety or blood sugar related. I just feel kind of crummy, and kind of nauseous a lot of the time. Just not right. My hair is also falling out a lot and I am SO tired and sleepy it's untrue. I'm hoping this is all steroid withdrawal related. Really wish the docs would get me on a steroid sparing agent rather than hanging around waiting till I get down to 5mg.

Still very little pain though so I'm a happy girl :) Just feel a bit fluey and crummy :(

I am also VERY glad to have free prescriptions here in Scotland, seriously!!
 
Thanks lsgs.. the massage was very good ;)

Do you feel that you responded well to the steroids? And now that you're tapering down.. the symptoms are returning?
I forget where everyone is at with their medication and tests.
 
lsgs, how long have you been on pred? I wonder if you've become steroid dependent. The human body makes something like 7.5 mg of natural cortisol a day, and when a corticosteroid like pred replaces that, sometimes the body gets too used to not producing it and then struggles to make enough to cover the difference when you take less than that amount. I don't think 0.5 mg would make such a big difference though (and I may be slightly off on the 7.5 number).

As for the hair falling out, try taking biotin. It's a b vitamin but it can help with hair loss. My hair started falling out when I was on Entocort, and someone else on the forum told me about biotin. I believe you need to take 3000 mcg or more daily for it to have an effect on hair loss, and I take 5000 mcg daily. It worked well for me - it doesn't work for everyone, but it's worth a shot. I haven't had any side effects from it and it helped me from losing too much hair, so I definitely recommend giving it a try.

Bozzy, I love getting massages too, but sometimes the day after a massage I feel just awful, like I've been beat up. Sometimes I feel great after a massage and sometimes awful, so I really have no idea why that is! I see the same massage therapist every time (he's a friend of ours and he makes house calls and gives us a discount so it's really nice) so it's not like I'm getting a massage from a different person each time, it's always the same person. It's weird!

How's everyone else doing today? I'm okay except I have a headache. We just had to turn the clocks forward for Daylight Savings time, and I hate that. It throws off my sleep schedule and it takes me like a week to get used to, and I get headaches when my sleep schedule is disturbed. Yuck, I wish we'd get rid of DST in this country, it's just annoying to have to change all the clocks twice a year.
 
Hi guys, just wanted to pop in and say - I saw my GP today, and it sounds like I'll be seeing a rheumy soon for my hip arthritis. He had already sent me to physical therapy (which was good) and to an orthopedic surgeon (who was worthless) so a rheumatologist is the next step for me. I know a lot of you guys already see a rheumy, so just wondering - anybody have any advice as to what to ask about on my first rheumy appt? Or any other good info I should know?
 
Hi all,
I like the idea of this home for people with issues but no clear ideas what is causing them.

My son Liam (age 10), He has had a barium follow through x ray which was clear & a colonoscopy & 3 abdominal ultrasounds this year all clear. He has also had two calprotectin tests, the first one showed 694. The most recent one normal. He has not had any imaging of the upper digestive system done and I suspect that won't happen unless his symptoms get a lot worse.

It's an odd limbo land I find myself in, on one hand I'm delighted his symptoms aren't that severe but on the other I'm conscious that things aren't quite right.

Perhaps should mention I have a niece diagnosed as a teen with Crohn's & my husband has a first cousin diagnosed as a child with Ulcerated Colitis, which is what led us to consider the possibility this could be an IBD issue.

So symptoms:
-- Liam has had a serious of bouts of really severe stomach pain around his belly button that last for between one and several weeks. All these bouts seemed to be triggered by exercise
-- acid reflux also mostly triggered by exertion.
-- dizzyness, headaches & disorientation - triggered by exertion -- occurs multiple times a week can last between a few hours and a few days. Seems like dehydration but was occuring despite drinking large amounts of fluids.
(This has been the most persistant issue, even at times when the stomach ache & reflux go away, this doesnt go away)
-- Mouth ulcers more often than not.
-- Rash, I believe this is Molluscum contagiosum which is harmless and just a sign of being run down. First cluster of lumps on his arm arrivd mid 2011 and that initial set seem to be starting to heal (lumps have started to get smaller) but he gets another new set each time he's run down.
-- Plus he's not put on any weight this school year, despite growing 6 cm.

Current things we are trying:
Liam has been prescribed rabeprazole (PPI) which he has been taking daily and does seem to really be helped in reducing pain and improving appetite, energy levels and general alertness.

I've started him on a GERD diet, only a couple of weeks in so very early days there. The diet seems to map really closely on to his food aversions (most of the things he's been incredibly fussy about eating for years are on the list of things to avoid.) Also trying to do Lactose free at the moment but not sure how long will manage to stick to that as he desperately misses his dairy products & is sure they don't make him feel sick.

When starting on the diet I got litnus paper and checked all the fluids he was consuming for PH. Turns out our drinking water we we're consuming is slightly acidic (it's desalinated sea water that's been massively processed). So I've switched him completely across on to bottled mineral waters with PH 7.6 or higher. Early days yet but seems like the change of water is the first thing to we've tried that is really having an impact frequency of dizziness & headaches (we'd tried electrolyte mixes and sports drinks with only limited effect and ofc they are reflux triggers which was making that issue worse).
 
Last edited:
I feel like I should apologise for the essay ! Hadn't realised how ridiculously long that was until I'd posted it. So please accept my apologies.
 
Hi Cat. Good luck at the rheumi. I do not really have any advice other than asking if you can have a complete panel of blood work done. There are lots of rheumi tests and given your long history of symptoms, I think you should be able to have these tests done.

Hi Marie. This undiagnosed club is very helpful. I also use the Parents of Kids with IBD forum. There are several of us with undiagnosed kids there. I do hope you get answers soon.
 

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