Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Cat- does your sewing machine have manual settings for width and length? If so, leave the regular foot on the sewing machine, set the stitch type to zigzag, the width to maximum and the length to the smallest you can that isn't 0. Draw a line where you want the button hole to be (make sure it's a little bit longer than the button you want to use). Sew down one side of the line, so that the right hand edge of the stitches are barely touching the line (on my machine I use the edge of the foot hole to guide). When you get to the end of the line, put the needle into the fabric on the right, lift foot and rotate the fabric, then lower the foot and sew the other side.

I have a machine from the 1960's (it's the same as the one my mum had when she was my age!) which doesn't have automatic settings, so this is how I do mine. Practice on scrap first, you might need to adjust the stitch width slightly for your machine.
 
Haven't had a letter yet with the MRA results, going to be normal anyway!

Joint pain has flared up massively bad, I can't get any relief. Considering visiting A&E in the next few days if it doesn't improve. It keeps me up until 3-4am then I am so worn out by being up and the pain tires me so I sleep 12 hours. Then it all starts again. The other night I took painkillers at 7:30pm, 10:30pm and in desperation 1am! Considering my daily dose is up to 4 that is pretty bad.
 
Thanks Shan! We don't have Kroger here but I'll take a look at my local grocery store and see what options there are for low-cal supplement drinks.

Rebecca, yes, I actually tried that when I couldn't get my buttonhole stitch to work. It probably looked okay but to me it just looked lopsided and ugly when I manually did a buttonhole that way. I ended up throwing the shirt out as I couldn't stand looking at that ugly buttonhole! I'm probably just way too picky but I guess I either need to not do projects that involve buttonholes or get another sewing machine. I have thought about looking for a second-hand machine that I can put away in the closet and just take out for doing button holes. That honestly seems like the best option to me right now! So I'm going to keep an eye open at thrift stores and garage sales and see what I can find for cheap.

Sunshine, have you thought about trying a liquid diet for a few days? Get some Ensure or whatever supplement drink you like best and try having a few of those a day until things settle down a bit. If things get worse, please go get checked out at the ER. Worried about you! Hoping you feel better very soon! By the way, I watched your exercise video last night, very cute! I could totally relate too. Especially to the part about opening med bottles. Whenever I get a new bottle of Asacol it's ridiculously hard to open! After a few times it loosens up or something and then it's much easier, but those first few times require all my muscles just to budge the stupid cap.

Star, is it all your joints that are hurting or just your bothersome shoulder again? Either way, I hope it gets better soon. And if you do go to A&E, I hope they're able to do something worthwhile and get you some real lasting relief. Feel better soon! I hope those MRA results show something after all the trouble with finding a vein.

Speaking of finding a vein, so I had my GP appointment yesterday and they did a blood draw. I looked away as I usually do because I don't like to see the needle go in. The guy doing the blood draw seemed really good, he had a calming demeanor and he got the needle in the vein on the first try with hardly any pain. That led me to believe I wouldn't have a bruise. Well, last night I took off the bandage and there is a HUGE purple and red bruise on my arm! Eek! I look like a junkie, it looks just awful. Fortunately it doesn't hurt but wow, it is ugly! I don't know how one little needle poke can make such a hideous bruise especially since it was on the first try and no pain. Like everything else about me I guess it's a medical mystery. ;)
 
So I had my Opthamologist and regular doctor appointments today.
The opthamologist said my eyes are good (phew), and that what is presenting itself as major eye pressure & pain is completely neurological. He was going to give me a referral to a neurologist, but I told him that I had seen one 2 weeks ago and had an MRI last friday. He seemed quite relieved to hear that. He also asked me to let him know what the results are...which I thought was a bit odd.
I do have some kind of infection in my eye, and so he prescribed antibiotic/steroid eye drops and I have to see him next week again.

My doctor seems to still think this is IBS. Despite me telling him about the incredible inflammation of my innards, waking in the night to have bm's, the bleeding, and the meds to treat IBS not working for me. He did give me two more meds to try...Domperidone, and Temazepam for when I am woken up in the middle of the night with pain and gastrointestinal spasms. I asked him to give me something to at least help me get back to sleep. I hope this works...guess i'll find out very soon!

I am a bit flabbergasted that some of the side effects of the Domperidone medicine are: headaches, trouble sleeping, stomach cramps and hot flashes...gee, I could've sworn I ALREADY have ALL of the above...:duh:...just like some of the other meds can cause D! What the heck?! It's like they're NOT getting it.

Well i'm not giving up...I have an appointment with a naturopath tomorrow morning. SoMETHING's gotta give here. I am bound and determined to find relief somewhere - i've used alternative medicines in the past and my body responded well. Maybe i'll get some positive results this time too. It's worth a try...I have nothing to lose, that's for sure!

Oh yeah, I asked my doctor about the results of the 24 hr pee test and he said they were negative. So i'm guessing that means that my cortisol levels were not raised.

Hope everyone has a great rest of the week. Or in the very least a less stressful rest of the week. I hope the sun shines for everyone tomorrow :rosette1:
 
I will be making a video sometime soon on "things doctors say when they don't know what's wrong"... we are all very familiar with this, and I wanted your help with it. If you are interested in helping, it would be great if any of you could tell me things doctors have said to you!
Thanks!! :)
 
Today was awful. I was supposed to go to seaworld with my friends... i woke up severely nauseated and almost went to the ER... Couldn't take my meds until 3PM! things started to calm down again, but now it's back up... I don't know what's going on! I think maybe the meds either aren't strong enough or something. My digestive tract is quite the fighter that's all I can say about all this... :( I was so nauseous and have a big migranie, felt very faint for most of the day.
I am hoping that in the morning tomorrow I don't feel like this again.. but we will see.
Thanks everyone for the support. <3
 
Ever, I know it's hard but try not to focus on the side effects. These are things that may happen, not things that will. Drug companies list anything and everything to cover themselves legally. If the Dr didn't think a drug may be helpful/suitable they wouldn't prescribe them. However misguided the belief it wouldn't be given if not suitable.

When I get a new med I skim through instructions and how to take it. Then I take it and see what happens from a relaxed viewpoint. When I am taking it if I notice problems I will then read the side effects and make a decision to discontinue or not. I've stopped meds of my own free will in the past so this is a voice of experience!
 
Ever, I'm with Star - the side effects of some meds can be potentially awful and counter-intuitive at times (I got awful vomiting and nausea for weeks from taking Hyoscyamine which is an IBS drug! It was supposed to calm my stomach & guts, not rile them up horribly). But in most cases the benefits are worth the possible side effects. And you don't know if you'll get side effects or not until you try the med.

Speaking of side effects, my GP tested my kidney function the other day to see if Asacol is doing anything to my kidneys. One of the readings seems borderline high and the other seems borderline low. Here's what I'm seeing (pasting from a table which loses its formatting so hopefully this is readable):

Component Your Value Reference Range
Creatinine 1.04 range 0.40 - 1.10 mg/dL
eGFR 61 range >=60 - mL/min/1.73 sqm

Result Narrativee-GFR Interpretive Statement:
Chronic Kidney Disease, e-GFR <60mL/min/1.73 sqm
Kidney Failure, e-GFR <15mL/min/1.73 sqm

So if I'm understanding this correctly, my eGFR (whatever that is?) is 61 and if it were below 60 then I'd be considered to have chronic kidney disease? And my creatinine is kind of high although still just within the normal range? My GP can enter comments on test results, and he didn't enter any comments on this result, so I'm guessing that means it's fine? I think I will call his office and see if I can get more info about these results. My grandfather has been in kidney failure for the past 5+ years and has dialysis 3x per week, so since there is a family history of kidney failure, I am a bit worried. Don't want to stop Asacol but obviously will have to if it's damaging my kidneys.

The other test result I got back was my cholesterol. My GP tested it as part of my routine yearly physical. And, it's high! Well, borderline-high but higher than I think it should be. Both my "bad" and "good" cholesterol levels are high. My GP did put a note in those test results, saying that since my good cholesterol is high and my bad is only borderline-high, he's not too worried and we'll re-test it next year. I'm just wondering how on earth I got high cholesterol! Genetics is the only thing I can think of, my mother has high cholesterol too in spite of her eating a very healthy diet (lots of fruits & veggies, very little red meat or dairy, no fast foods or greasy foods, etc) and she is in great shape and runs marathons. I of course exercise regularly too, I don't eat any red meat and I avoid dairy most of the time, I avoid egg yolks and I avoid greasy foods too. I don't do a lot of fiber or fruits & veggies, that's the only thing I can think of besides the family history thing. So yeah, that's a little upsetting. At least my "good" cholesterol is high too. I know my dad eats a crap diet (fast food, candy, soda, chips, you name it) and his bad cholesterol is high and his good cholesterol is low. So I am doing some things right, it's just frustrating that I'm apparently still not quite where I need to be health-wise. Oh well, just another aspect of my health to work on.

The other thing is I have another barometric pressure headache. This one is a real doozy, it feels like a migraine to the point that it made me nauseous! I had to take a Zofran this morning and still don't feel right. I don't think it's a migraine because I didn't have an aura, plus I woke up with this headache so I know it's from the storms we've been having here. I don't get migraines in my sleep but I do get barometric pressure headaches in my sleep. I'm hoping I can get a massage soon as those sometimes help. The headache starts behind my right eye and wraps itself around the right side of my head and goes down the back of my neck (it's only ever on the right side, just like my migraines, so the two headache types do have that in common). Ugh! With the headache and the nausea I do not feel good today. :(

I hope everybody else is doing okay. Sunshine, hope you're doing better today! They just put you on Entocort, right? You might want to let your doctor know how poorly you are and ask to switch to pred. Entocort is pretty mild and might not be doing much if your inflammation is severe. Pred would definitely work faster and might be more effective.

Big hugs to all! Hope everybody is hanging in there.
 
Jezz lousie I see I have posted here the past 3 days but that's news to me, what a blur that was. I literally lost those three days the pain was so bad- maxed out on pain relief, kept me awake until 4am, slept for 12 hours and then it started all over again. And when I was awake I was a zombie. Was going to A&E today but thankfully it has receeded to a point I can (just about) manage with my normal pills. That was the first and hopefully the last time I have actually lost days like that.

I think I can safely say the steroid shot didn't work PMSL.

No MRA results yet :( Don't know why I am so keen for them since it will be normal. Steroid test is set for 2nd & 3rd May, two early mornings, another :( Still, that's weeks away yet, that can go to the bottom of the worry list!
 
Wow, Star, that's a little scary! For what it's worth, you sounded totally coherent to me in your posts from the past few days. I hope the pain gets better soon!

I've still got this hideous pressure headache and am still nauseous because of it. I managed to eat a little bit of food and I went out on my lunch hour for some retail therapy, that helped quite a bit! :) I had hubby get my bicycle out of the basement and put air in the tires as I would love to go on a bike ride this weekend. Fingers crossed my body cooperates and this stupid headache is gone by then!
 
I was told, just today, mine is Rapid intestinal transit. With mine, I have done nothing but gain weight. terrible diarrhea! Bloating. Gas. Even a large amount of blood as of two weeks ago. I've been going thru this for over 2 years now and I'm sick and tired of this.
I've went to two GI docs, along with my regular doc, a gallbladder surgeon....nothing works and nobody truely helps. I'm terribly disheartened.
 
Snickers, welcome, and I can relate. I've been ill for over 2 years as well and my current diagnosis (if it can be called that) is "chronic non-specific enteritis" which is basically a term my GI made up because he really has no idea what's wrong with me. Unofficially he has said it's IBD but he's unsure if it's Crohn's or microscopic colitis or what. It sounds like you've been given a placeholder diagnosis as well until they can figure you out.

I'm assuming your doctors know about the blood? That's a red-flag symptom and isn't something to ignore. Was it bright red blood or dark/black blood? Bright red blood is usually from something near the anus, such as a fissure or a hemorrhoid. Dark blood is more worrisome as it comes from higher up the digestive tract and can be from something like an ulcer. Either way, are your doctors regularly checking your blood work to make sure you're not anemic from the blood loss?

You mentioned nothing works or helps - what meds have you tried? Have they tried anything like Prednisone on you? What tests have you had done? Have your doctors checked your thyroid? You mentioned weight gain which could be related to thyroid issues, and that can cause diarrhea as well. Another thing, if you haven't already checked for it, would be Cushing's. That can cause weight gain as well. It's related to the adrenal glands and cortisol levels so bowel tests such as colonoscopy would come back normal. Good luck, I hope that helps a little bit. Welcome again!
 
My doctor just called me. She gave me her cell phone number! What a great doctor!
Anyway... she called and said that it wasn't good that I haven't gotten much better yet. So she prescribed 40mg of Prednisone and said to take that along with the other meds I'm taking, and then once I'm tapered off of Prednisone, go BACK to Entocort. So I'll be on steroids for a while now... I hate the side effects, my acne JUST started to go away... and now it's going to be back again! :( Prednisone really makes you lose your self esteem... I'm not getting very excited about this. But, I know that it is only to help me, so I must do it and I understand the reasoning behind it.

She also said that if I ever am not doing well like yesterday to text her and she will tell me what to do, and if she thinks I should go to the hospital, she will admit me for the day to get fluids and IV medications to help, instead of the ER and not get anything done (in her words). So, she's doing a wonderful job with helping and taking care of me.
 
Snickers...i'm sorry that you're not getting any answers. It's like you're constantly living in limbo and that's no fun for anyone. I feel for you. I hope that you will find a doctor that will not give up till they get to the cause of your illness.

Sunshine, your doctor sounds fabulous...and extremely HUMAN!! I think it's rare nowadays to find a doctor who's going to take those extra steps. I'm glad she's on your side!! YAY!

Star...holy! It's incredible that nothing can be done to help your suffering and pain. Losing days...there's definitely something wrong with that! I totally know where you're coming from though...everything is a blurr. I sure hope the doctors can find SOMETHING to help you out even a bit.

Thanks Star and Cat for your advice on the side effects. I know you're right and I know my dr must feel that the risks outweigh the possible side effects. I do like the idea of simply reading how to take the med & then if something happens, look it up at that point. I always want to do the research before I start taking something new. Obviously that isn't helping. I did take the new med last night & it made my upper stomach tender to the touch. Time will tell, I suppose. Fingers crossed...i'm not enjoying looking & feeling like i'm 6 months pregnant. I need to invest in a pair of maternity pants b/c my pull up dress pants are even too tight.

I went to see a naturopath today. He said that in his opinion i've been suffering for too long. And that obviously as things are...this isn't working for me! Yep...you got that right!! So the first place he wants to look is to see WHAT is causing my gut to be so upset/inflamed/crazy...and so we're doing the food allergy / sensitivity test. I'm starting a stronger probiotic that he recommended. He's also checking my Vit D, Ferratin, Vit B, and two Thyroid tests. If any of my reserves are low, he says he'd prefer to inject them intramuscularly since it's doubtful that my intestines would properly absorb if i were to ingest them. I don't know...kinda makes sense to me so far. We'll see where this goes too. I've got to know that i've checked out all possible avenues. I can't continue like this...something's gotta give!

I hope everyone heads into the weekend with something positive happening to each of you! ...and none of this...:poo:
 
Thanks everyone :ghug:

I am certainly reporting that to my rheumy, was so scary. And now of course every time the pain starts to bite a little harder I am feeling fear that it will get like that again, I know you will all understand!

Still no letter with MRA results :( When the last one didn't work I was informed and new arrangements made within a week and now at 9 days since the re-test so am really impatient. Rheumy told me several letters by different Drs were involved in the re-test arrangements so not sure why if they can do all that in a week I have not heard. Hoping it means he is working on something else from the results whatever they are. I may call his secretary Wednesday (2 weeks since scan) and see if she can let me know where things are at.

Ever, doing research with something new is always smart and something I like to do, but I was having to rein myself in by not reading 100 links from Google lol so when personally I got that bad it was time for a new approach.
:ybatty:

Going a bit OT, I am now the proud owner of a 5" sunflower seedling :rosette1: It's growing so fast it flopped over so I tied it to a pencil in the pot. Second seed didn't germinate so I have replaced it and have my fingers crossed.

Oh, and it's a week until I turn 25, of course at times I really don't see I have anything to celebrate, but I am trying to be positive!

:dance:
 
Cat, the blood was bright red. Never really found out what it came from. Either a fissure or one of the hemorrhoids, I'm sure.
Ever Hopeful, it is disheartening not getting any answers.
My GI doc had me order Align however I take acidophilus. Not sure what the difference is but I'll be a good girl and take Align as she suggested. No other pills prescribed at this time.
If I eat yogurt, I'm in the bathroom. Ice cream is like passing razor blades. Forget greasy fastfood! I love Thai food and will eat it and do pay for it before we walk back to my car!
I know I shouldn't complain when I have friends who are terminally ill but this REALLY sucks. A little over 2 years ago I could eat anything and never have an issue. Then I got really sick one day and my bathroom life has increased dramatically!
Should I buy stock in TP? Whatever this is seems to be an epidemic!
 
Sunshine, glad to hear you are back on pred, I hope it works wonders! Glad to hear your doctor is so great as well! :)

Ever, that's interesting, I don't know if I've ever heard of vitamins being injected intramuscularly (that's a hard word to spell!) before. I hope it's not too painful - I get a flu shot every year, and I just got a tetanus/pertussis booster shot, and both of those are injected into the arm muscle. I had the tetanus/pertussis one done on Tuesday and my arm is still a little sore! As I recall, the flu shot hurts for a few days every time I have it done too. Hopefully the vitamin injections are more gentle than the inoculations. And if you get them, I hope they help!

Star, happy early birthday!! I hope you're able to do something fun to celebrate. Congrats on the sunflower too! Do you get a lot of sun there in the UK? In movies and TV shows and stuff, the UK is always portrayed as being gray and rainy most of the time but I don't know if that's really true. I'm glad you're informing your rheumy about the pain and the not remembering, hopefully he can figure out a better plan for you if it gets that bad again. I would think he'd say something like go straight to A&E if the pain gets that bad - at least then you'd get pain meds, maybe better ones than you're taking now? Plus you'd be monitored by medical professionals and there would be a record of you being in such pain. Anyway, I hope things continue to improve!

Snickers, I get fissures and hemmies too and I also sometimes will pass some bright red blood, so I totally understand! It's scary to see blood in the toilet but it is something of a relief to know that it probably came from a hemmie or a fissure. I hope the probiotics work for you. I personally can't take probiotics, it makes my GERD worse as is sometimes the case with probiotics and GERD unfortunately. I only take probiotics when I'm on antibiotics to try to restore a bit of my good bacteria that the antibiotics are killing off.

Snickers, you mentioned you can't do yogurt or ice cream. Are you lactose intolerant? I am lactose intolerant and when my IBD was acting up, I couldn't do dairy and the lactose enzyme tablets didn't do much for me either. Now that I'm feeling better, the enzyme tablets work much better and I can do a little dairy here and there. You might want to give the enzyme tablets a try, if you haven't already.

Oh, and one more thing - you do have every right to complain. Just because others out there may be sicker than you, or are terminally ill, that doesn't mean you aren't suffering or you aren't in real pain or your medical issues aren't valid. And as for buying stock in TP, have you tried the moist flushable wipes? I keep a stockpile of them, I think the brand I get is Charmin although there's multiple brands out there, they are lovely and soothing and wonderful if your bottom is sore or if you have hemmies or fissures.

I hope everybody has a good weekend! Springtime is here, hopefully that is lifting everyone's spirits a little bit. :) I know the sunshine and warmer weather is bringing a big smile to my face! I'm hoping to go on a bike ride tomorrow - the hemmies are gone so let's hope they don't come back after a few miles on a bike seat. :p
 
Hi Cat, we do see the sun in the UK but I think your tv shows have our weather down pretty well!

Not really anything planned for my Birthday, sadly it'll just be like another day for me. Last year on the day I had the flu and a letter cancelling my Pill Cam. I wonder what delights are in store for me for this one lol.

To salvage something out of my Birthday I wanted to go visit my grandparents on the 17th but Mum is working and I won't accept that much money (has to be taxi and they insist on paying, honestly we couldn't afford it ourselves) when it's only me going. Oh well. We are both going the week after instead.
 
Last edited:
I'm really nervous.
I have had this cramping in my lower abdomen and really strong pain/cramping/sharpness/throbbing on my left lower abdomen near my hip bone and it's been going on for the past 6 hours already.. it's not stopping it's just getting worse. it's very consistent, hasn't stopped pulsing at all. I don't know what to do
it hurts soooooo bad
:'( :'( :'(
 
hi peeps..
so i saw my gp yesterday. and how great is this - i see a junior gp! she was really lovely.. but she couldnt give me any answers/ideas. and only said that she would discuss with the other doctors and for me to come back in two weeks.
so i feel fab! NOT!..

oh well.. so lets see what happens then..
i told her that all my symptoms cant all be down to anxiety surely?? and she said she didnt think so
ive done a "urine chart" and she thinks my bladder may not be fully emptying.

i completely forgot to ask for them to check my vitamin levels. so i guess ill ask in 2weeks

@sunshine - sorry you're not doing very well at the moment. i hope you get some relief soon! and like carrie said, get yourself to a doctor!
 
Sunshine, I'm with Carrie! You have your doctor's cell # so use it! Or go to the ER if it continues/gets worse. I hope you feel better soon! Worried about you. Big hugs!

Bozzy, I'm glad the doctor didn't think everything was due to anxiety, junior doctor or not. I hope in 2 weeks she can come up with some ideas and you can get your vitamin levels tested. Do you write down everything you want to ask your doctor? My mind always seems to go blank when I get in the exam room so I make sure I have everything written down. In fact I carry several lists with me to each doctor appointment - a list of all my symptoms, current and past - a list of all the meds and supplements I'm taking, including what dosage and how often I take them, and a list of all my questions I want to ask. That helps me be really organized and accomplish (hopefully) everything I wish to accomplish from the appointment.

I hope everyone is doing okay today. I did not do my butt any favors and I hope it doesn't punish me too severely - I went on a 5 mile bike ride today! And now things are quite sore back there and I'm told to expect things to be even more sore tomorrow. I am already planning on bringing my hemmie donut cushion to work with me as I sit at a desk all day at work. Eek!
 
You know what I had a really good day. Don't feel over-well but for some reason I really relaxed and chilled out today, no idea why but haven't been this relaxed in ages! I am going to enjoy it while it lasts.

Also have emailed Rheumy about what happened last week and gave a little reminder that I was still waiting for MRA results. Still don't know why the delay- they sorted all the re-test arrangements inside a week involving multiple departments and yet nearly 2 weeks on and no results this time...

Made an american food order which was really nice, and got myself a little early birthday present, a new jewelrey stand :) Despite everything I am looking forward to my birthday as well...
 
Star, that's so good to hear, I hope the relaxing feeling lasts a long time! Hopefully you're able to have a good birthday even if you don't do much. What kind of American food did you order?

Speaking of ordering stuff, I went on a bike ride this weekend and now I keep thinking of things I want for my bike. I really need a basket for my bike and a water bottle holder too (I carried all my necessary stuff in a backpack on my bike ride yesterday and that was kind of rough on my back). And I need a bike lock so that I can ride to the farmer's market this summer and lock my bike up while I shop. And I want a new helmet. And then I realized my current bike is old and kind of ugly and I want a whole new bike! Ha ha. I figure, if I can ride my current bike enough and build up my stamina, then perhaps I can justify buying a new bike. I do need the accessories, and that'll be expensive enough.

How is everyone today? Sunshine, hope you're feeling better? Everybody else? Hope all is well, or at least tolerable.
 
Cat- a- tonic
I love cycling , i love the freedom, I love how you get to see your town from a different perspective Most of all for me its a life saver, I always feel good after a bike ride. When i feel crap I go out when I can it takes my mind off it.
Ive started cycling to work recently and it does start the shift much better . I just have to plan a bit more (Food wise).Investing in your bike is investing in your willingness to take an active role in combating your illness.
Well thats my rant for the day !
 
Uplifting words

Hey Guys,

Have had some rough days lately- meds have gotten me feeling icky, and started getting dizzy again, due to my allergies. When my head gets all congested, the extra fluid in my ear builds up and sends me into vertigo. Oh well, it will pass. But sometimes, like all you guys, I feel like I just can't do it anymore, and so tired of being sick to my stomach, woozy, dizzy, clumsy, headaches, ear-aches, on and on. When I get to feeling like this, I play this song. It is awesome. This is by Christian singer named Matthew West- he is so good, and the worst really speak to me. I hope this will give you all some hope and make you feel some comfort- I know it does for me. :heart: you guys! :ybiggrin:

You must
You must think I'm strong
To give me what I'm going through

Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own

I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy, won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us

Well, maybe
Maybe that's the point
To reach the point of giving up

Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up
And reaching out

Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong
When I am weak

I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Strong enough
 
Peter, I know you ride your bike a lot, I'm very impressed that you're able to do that with active illness. I was such a wimp about doing anything like that until I got into remission. Now, though, it's onwards and upwards and I love getting fit! I just ordered myself a new bike as a gift to myself - I got this one:
http://www.amazon.com/Schwinn-Prest...A0NE/ref=sr_1_1?ie=UTF8&qid=1331727471&sr=8-1
It's not a high-end bike by any means, but it'll suit my needs nicely I think. My current bike is an old mountain bike and I hate feeling like I'm hunched over the handlebars. I really like that the handlebars on the new bike are higher up and I'll be able to sit more upright. I got myself some accessories too, a new helmet and a basket for the bike so I can do a bit of shopping. Gas prices here are just going up and up so I figure this bike is the cost of a few tanks full of gas, and if I can ride more and drive less then I'll save money in the long run and it'll help me work towards my fitness goals too. Win-win! :)

Shan, so sorry to hear that you're having a rough time right now. Your last few updates have been so good, I'm sorry to hear things have gone downhill a bit again. :( What do you take for your allergies? I have allergies too although I'm not sure what I'm allergic to. Back in college is when my allergies first started, I went to my GP at the time (different GP than now) and all he said was, "it's probably mold, take some Allegra." And that was it, no allergy testing and I haven't pursued testing so I really don't know! I just take some Claritin when I feel my allergies acting up and that works okay. How awful that your allergies are making the vertigo worse. :( Big hugs to you and I hope you feel better again very soon!

Happy Pi Day everyone! (It's 3.14, get it?) I hope everybody else is doing okay. Sunshine, haven't heard from you in a bit, how's the pred treating you? Allie, how are you doing on your meds? Carrie, have you made any more headway on the adrenal testing?
 
As an Amazon Associate we earn from qualifying purchases.
I think you should go for it Cat! I am also a bike-rider, but when I got sick it stopped. Before that I rode my bike around campus and to and from the grocery store at my apartment! Now my bike is at my parent's house for safe keeping until I am able to do it again.

The meds are doing so-so at the moment. I think the stress of this field excercise isn't helping! I am not as active this week as I was last week. I'm just hoping time will change it!
 
I had a second opinion yesterday! What a breath of fresh air! The gi has diagnosed me with Chron's but hasn't started a course of treatment until he gets all of my latest bloodwork back, just wants to know what my baseline is! I am so glad that I found a doctor who understands and practices basic scientific theory...lol.

@Cat, I ride my bike to work its about 13 miles round trip. Its just long enough to make me feel like I am doing something productive and is short enough that I can make it bathroom to bathroom :p

@Sunshine, I hope you are feeling better soon! You are so lucky to have found such an amazing and caring doctor. It is obvious that they care for you!

@Allie, @shan and @Star, I hope that you all start feeling better soon!

@bozzy, go get a different opinion! There is no need to keep suffering and have them drag you along!
 
Allie, I ordered it last night, and my new bike arrives next week. :) I'm very excited! My current (old) bike is actually a men's bike so I told hubby he can have it, ha ha. (It's purple though so I don't think he'll take it - he doesn't like non-manly colors!) He made a pouty face when I said he can have it, and he said his bike is good and he doesn't need mine. I reminded him that his bike was something that was given to him by a friend who found it in the garbage! It's a garbage bike! Ha ha. So yeah, I suspect after he sees my shiny new bike he'll want a new one too as he probably won't want the purple bike or the garbage bike. ;) That's what happened when I got a Kindle Fire, he immediately wanted one too. He's a good guy but he wants all the good toys that I get, ha ha.

Space, so you are officially diagnosed!??!! Congrats and condolences! Please keep us posted as to what treatments you try and how you do on them. I'm sorry it's Crohn's but I'm glad you have some answers and can move forward with treatment soon. Good luck with it and I hope you can join me in the remission club soon!

Oh, and it sounds like your commute is just about right, I'm jealous. My commute to work is about 12 miles one-way, so it'd be 24 miles round-trip daily and that just sounds like too much for me to do on the bike, at least at this point. Maybe once I ride a bunch more and build up my stamina I could do it, but I would imagine that's quite a way off in the future (I work out regularly, but I do a lot more strength-training than cardio). Can I ask, when you commute on your bike, do you get sweaty on your ride and do you bring a change of clothes? I'm just trying to figure out the logistics of stuff like that for possible future reference. Thanks!
 
All I have to say is...
Prednisone is not working yet... :(
I've been stuck in the house forever it feels like!
and today I ate lunch and after a couple bites I almost passed out. my vision got all crazy and my head hurt... then the rest of the day i've been feeling shaky and hot flashes.. this is a flare that just won't go away... :( so frustrating.
Oh well... i'll just 'give it time' like my doctors always say.
I've been making awareness ribbons though and just got new fabric for another pillow... so at least i have crafts while i'm sick.
hope you are all doing alright.
<3
 
update on my insulin tolerance test: the endocrinologist said that my adrenals responded so it's fine. No explanation of the fact that some of the values were either too-high at baseline or technically not high-enough after stress. whatever. I've said it before, but I really think I'm done. I'd rather be sick with money and less doctors visits than sick and in debt to the doctor. I may call my GP next week about beginning a medication reduction plan. If, according to them, I'm not ill, then I don't need the drugs, right?!
 
@Cat, its 95% there. I am missing my biopsy to confirm, but I have the bloodwork and ct scan that confirms. The second gi I went to specializes in Chron's and he feels I have a classic case.

@Sunshine...Keep going girl. Maybe it is true that pred doesn't work for you. See if there is an alternative.

@Carrie I have felt that way for months. If you can get a second opinion on whatever your strongest suspicion is, than do it. I agree I would rather be on drugs for a cause and not for the symptoms. I hope that your gp will have some guidance.
 
Space, 95% diagnosed is still very good, especially if they're going to treat you as though it's Crohn's and give you some good appropriate medications. Have you tried any IBD meds as of yet? Whatever you end up trying, I hope it works wonders. Remission is lovely and I hope you can experience it soon! :)

Carrie, you poor thing. You know you're ill, burying your head in the sand probably won't work (at least not as a long-term solution). But I know how exhausting it can be when you're so ill and everybody says you're fine, it's tempting to just give up and believe them. Take some time and rest (and build up your savings again - I've been there done that too, we're still paying off hubby's kidney stone doctor bills from a year ago). But don't give up completely! Like Space said, get a second (third, fourth, etc) opinion, when you're ready. Hang in there, sending you a big hug!

Sunshine, do you get migraines? When you mentioned that your vision went crazy and your head hurt, that sounds to me like it could be a migraine. Migraine auras can present in many different ways and "crazy vision" can certainly fit the description of an aura. And I get that shaky feeling like you described, I feel shaky and not quite with it for the rest of the day after I have a migraine and sometimes for several days afterwards. I started getting migraines when this IBD first hit me and I have a strong feeling that the two are related somehow. Do you keep a food journal by chance? My GP prescribed me Imitrex (migraine med) at my last appointment, and he asked me to keep a headache journal so that I can learn what my migraine triggers are. I know that certain foods can trigger migraines, and you said you had just eaten. Make a note of what you ate, and if it happens again then that might be a migraine trigger for you. So far it seems that caffeine is a migraine trigger for me, although I haven't found my other triggers yet. Anyway, I'm rambling again, but what you described sure sounds like a migraine and you should definitely mention it to your GP! They can diagnose migraines and get you some good meds. Good luck! Hope you're feeling better and that the pred kicks in soon!
 
Food Allergy/Intolerance Test Results

Well, I had a brief follow up with my naturopath today. The results were already back for my food allergy & intolerance test. So...I should NOT eat:
any dairy
beef
egg white & egg yolk
gluten, rye & wheat
fish (9different kinds including salmon & tuna)
almonds, peanuts, sunflower seeds
pineapple
green beans, kidney beans
and honey!

He also gave me a B12 shot...the first in a series of four b/c mine is so low. He says that should give me some more energy. Looking forward to that!! Still waiting on the results from my Vit D test.
MRI results were clear.

So now I get to decide what I want to do in terms of treatment, as I have my colonoscopy &endoscopy/biopsy in June. They're testing for Celiac also, so it won't do to begin a gluten free diet right now. But anyways, at least I now have a jumping off place. I can start to try healing my intestinal lining & then take it from there. YAY! :soledance:
 
Thanks! <3

I am hoping pred kicks in soon! everyday i hope and pray! lol
I also think I have an ovarian cyst... because of the sharp pain and how long it lasted. but i'm going to my gynecologist on Friday and then she will probably order an ultrasound for the following week. and then we will find out if i have another cyst or not. just wanna check and be sure just in case! i've had many ovarian cysts but they never hurt too badly so when this thing started hurt, it's freaked me out a little bit, so just going to see her to make sure and get the ultrasound done to be safe.

I hope you are all doing okay. <3
lots of hugssss!!
 
SunshineSmile said:
btw, I posted a video on things doctors say when they don't know what's wrong.
Click to expand...

thats gonna be a long video hehe where did you post it?

i have to go back and read the last few pages ive missed a few things..

well i went to my "new GI" this morning and i cannot say im happy with the appointment he is sending me to get a ct of my stomach, and going to call my last GI to find out what his findings were even tho i told him.

i stupidly had my hopes up considering my gp put me on medication for chrons and its working and sent me to this guy so he can confirm it.

he said he still thinks its just IBS even without any tests so im not going to hold my breath as i dont go back for until may 15 now i think if he doesnt send me for any more tests and just sticks with the ibs label i will not be going back to him and mite even go back to my last gi and push him to do the cameras again esp since i had pollits removed i want to at least know they have not grown back as apparently that is fairly common and since they can eventually turn into cancer i dont want to be dealing with an ibd as well as cancer...

hope your all ok sorry for my rant lol
 
phear, sorry you didn't have a better appointment :( Fingers crossed for you!

I still haven't had my MRA results and no idea why. They notified me about the first failed attempt within a week and within that week made all kinds of arrangements for me involving different departments. Now it's three weeks and nothing. Really pee'd off!
 
Ever, that's a long list! So, what can you eat? Personally, I know I am lactose intolerant, but particular types of dairy are worse for me than others (milk & cheese are very bad for me, but can do butter & ice cream with little trouble). And when my IBD is active, then the lactose digestive enzymes don't work as well, but they work pretty well when I'm in remission. So I am eating a bit more dairy here and there now that I'm in remission. (I shouldn't, as I found out recently that I have borderline high cholesterol, but cheese is just soooo yummy!) Anyway, I hope you get some relief from avoiding the foods in your list. I hope the B12 shots help too!

Sunshine, I enjoyed the new video. :) Glad I could contribute to it. Has the pred kicked in yet? Good luck with the ultrasound! I haven't had ovarian cysts myself, but I know a few people who have, and they all have said it's quite painful. My cousin had one that burst and she had to go on complete bed rest for a week. Ouch! Hang in there! On the plus side, if a cyst is the cause of the pain then hopefully that means your ME is settling down?

Phear, that sounds like a pretty bad doctor. :( I saw your other thread too, it sounds to me like this guy had his mind set on IBS before you even walked through the door. Can your GP refer you to a different GI? Hopefully if you explain things to your GP, they'll understand and send you to a better GI. Since the CT is already booked, you may as well do it, but in the meantime if it were me I'd start researching other GIs in the area. Good luck! I hope the CT can shed some light on things.

Star, how frustrating! Especially after all the trouble you went through getting the MRA (well, both of them!). I remember you said that you emailed your rheumy - no response from him yet either? That is really frustrating! If it were me, I'd be calling every day asking for those results. My GI sometimes takes awhile to get back to me so in the past I actually have called his office every day for about a week until he finally returned my calls. I think they get sick of me but I don't care. You should definitely call or email again, and let them know you're very upset because you haven't gotten the results yet. Sometimes medical people are really busy (not that that's a good excuse) and need a lot of reminding about stuff like this. My GI is super busy (he apparently works out of two different clinics and the hospital so he's only at the clinic I go to a max of twice per week) but I just keep calling until I get a response!

How's everybody else today? I am doing well, although my GERD has been giving me a bit more trouble than usual lately. I was doing great when I first started Nexium but now it might be losing a bit of effectiveness. I've also noticed that one of my reflux trigger foods seems to be bananas! I googled and all I could really find is that bananas are not acidic and should help with reflux, not cause it. But when my reflux acts up and I start burping acid, the burps often taste like banana and usually occur not long after I've eaten bananas or banana bread. Hmph! Bananas have always been an IBD safe food for me, but apparently I need to cut back on them for my GERD. I'm not too happy about that! Especially since many other fruits cause my guts to become quite unhappy. I can't digest strawberries or tomatoes at all. I don't know what I'll do without bananas as my go-to fruit! :(

Other than that, though, I'm doing pretty well. I got my new bike yesterday and it's soooo nice, I can't wait to go on lots of rides. I think I embarassed my co-worker though, she asked me today if I got outside on my lunch hour yesterday to enjoy the nice weather, and I replied no, I went to the gym. She said in a snarky way, Oh, did you get all sweaty and sticky? I said, yeah, of course! (Do people go to the gym and expect to not get sweaty???) She was like, Well, I'm an old lady (she's in her 50s so not all that old!) and I can't really do exercise at my age. I said, my mother is nearly 60 and she runs marathons - she just ran one in Antarctica! So age is clearly no limit. Then my co-worker said, Well, I was thinking about buying a new bike but I'd probably only ride it once a year. I said, I just bought a new bike myself and I am going to ride it often, both for fitness and to offset high gas prices. Then my co-worker just slunk away. Hah! I think I made her feel ashamed about all the excuses she was giving me about not exercising. I felt like saying, hey, I have IBD and I work out a minimum of 3x per week - I have no excuses, in fact my illness just makes me want to work out even harder so I can fight it as much as I can! It's a motivator and not an excuse. I felt like I had already said enough to her though, but if she brings it up again I think I will say that to her. *evil grin*
 
@Sunshine, I can't wait to watch the video. I am sure it is hilarious! How have you been feeling?

I have had an ovarian cyst since October of last year...I just had an u/s to confirm the status and its still there. I have no idea what they plan to do with it and I won't know until I go back to my ob/gyn in 3 weeks.

@Ever, wow they really limited your diet didn't they?! It is impressive how we can adapt though. I have noticed that dairy and gluten really mess me up big time. I have fallen in love with coconut milk ice cream though, so its all ok :dance:

@Phear, just keep at it! Alot of us have been fighting the IBS versus IBD battle for a long time...Persistence seems to be the only thing that really helps us win. Feel free to vent to us, we all have gone through similar struggles. We are here to support :)

@Cat, I try to keep as active as possible to, it helps with the mood. Maybe if your coworker worked out she would figuer that out too! You can never force anyone into anything though...I can't wait to hear more about your bike! I hope that your GERD gets better soon!
 
ever - what the hell are you supposed to eat? bugs?

so i still have all these odd hormonal-like symptoms. i've been thinking adrenals for awhile, since everything always seems to happen at certain times during the day, no matter what i've eaten or how i've slept. it also seems like i'll be better for a few days and then not great for a few weeks. it's nothing that's not manageable, but it's still really annoying to sometimes not be able to get to sleep til 4 in the morning, sleep for 3 hours and be totally fine the next day, and then for 3 weeks be totally exhausted for most of the day.

think i'll get one of those mail order saliva cortisol tests. every dr that i tell my symptoms too just says oh you have pms or that's the crohn's and hey do you want an antidepressant?

anyway, glad you have a decent dr now star. so happy for you!
 
Cat, you shouldn't feel bad about the way that conversation went with your coworker! 50's is NOT old. My mother is in her 50's and she is actually pretty much addicted to exercising. My parents go hiking every weekend! I myself have never been a big exerciser, except for dancing, swimming, and riding my bike. I do use my illness as an excuse though, but my rheumy in Atlanta actually told me to stop exercising, so its not really an excuse, right? :p I'm not even suppose to be doing theater right now since the dancing is so intense, but that's the one thing in my life I just can't let my illness take from me.

I've been doing ok lately. I have been pushing myself WAY too hard though, so my pain has gotten very high despite the meds. Our opening night is Thursday (I'm playing Lou Ann in Hairspray), my husband comes home Saturday (so I have been trying to get the house spotless for him, plus getting ready to celebrate his birthday), and I have been trying to work really hard at Allie's Handmade Blankets to drum up some spring sales. I know once my husband comes home he is going to force me to slow down, but I feel that all I'm doing right now is required, so I just can't seem to stop!
 
Allie, I can relate, I really only started exercising around the time I started going into remission, as I just physically couldn't do much besides a bit of yoga when I was really ill. I'm sure with your joints and connective tissue being so inflamed that it wouldn't be easy to exercise! And especially if your doc said no, then that pretty much settles it. I hope you're able to get into remission soon and then hopefully you'll be able to do more. In the meantime I'm glad you have the theater and dancing so you're still being active, although I do agree that you should probably slow down a little bit! I'm guessing your hubby probably wouldn't care too much if the house is a bit messy when he gets back, or if you hired a maid for a few hours a week to help out. Sometimes there's only so much you can do, gotta save those spoons for the important stuff!

As for my co-worker, she smokes a lot and her only hobby seems to be fishing (that's all she ever talks about anyway, she actually invited me to go ice fishing once but I politely declined as that sounds miserably cold and boring!). I can hear her coughing and hacking a lot at her desk. I have a lot of co-workers who seem in awe of the fact that I exercise regularly, and I've told every one of them the days & times that I'm usually in the gym and that they're free to join me anytime, and not one of them has ever joined me. But at least most of them seem to wish that they would exercise more and freely admit that they're just lazy and should do more and say they're jealous of me, rather than say they're too old or act snarky towards me like this woman did.

Oh, and this co-worker, she had a cancer scare last year. It turned out to be something benign, but she was scared and crying at work at one point and I could tell she was terrified. That apparently didn't scare her enough to quit smoking though! The sad part is, she was hired to replace a co-worker who went on medical leave due to throat cancer from smoking. Seriously! I guess some people are determined to smoke (and not exercise) no matter what.

Space, I'll post a photo of my new bike once I get the new seat on it and the basket and everything. I got a Schwinn Prestige, it's turquoise blue and it's a "comfort bike" style, and is quite cute. :) It rides really nice too! My old bike is 15+ years old (it's the same bike I had in high school and I'm 32 now!) so it was definitely time for a new one. The old bike doesn't have much in the way of brakes, and it's terribly uncomfortable and just old and beat up. The new bike is shiny and smooth and comfy (although I wanted a REALLY comfy seat so I spent a few extra bucks to get a gel-padded seat, don't want to put my butt through any more pain than it's already been through!).

And I agree, exercise helps so much with mood and stress and emotions. I usually hit the gym on my lunch hour, and it's great when I'm having a bad day at work. I can just hit the machines hard and leave it all in the gym, and go back to my desk feeling so much better. I usually hit the gym Mon-Wed-Fri with Tues & Thurs as rest days so I didn't go to the gym today - guess that's why I'm still stressed and miffed about my co-worker! I might walk the dog tonight or go for a bike ride to get some of that off my back. :) It's so warm here, 80 degrees! Happy 1st day of spring, everyone! (Or for the Australians, I guess happy 1st day of Autumn? The seasons are reversed down there, right?)
 
fishing is boring enough, but ice fishing?

and i don't understand how people can still smoke knowing everything that we know. especially young people. at least old people didn't know when they first started and were already addicted before all the warnings came out.
my grandmother quit after 50 years of smoking. so if she can do it, anyone can!
 
Thanks for the advice, I am going to hang on a little longer and call his secretary on Monday.

I did email last week, but it didn't really need an answer and I didn't expect one, as it was telling him about that awful joint pain flare, and a reminder about the MRA results.

It's what is puzziling me so much, he is so good at communicating and writing to me, has been for year. I didn't get an auto-reply to say he was on leave but I suppose it's possible he was due to be away maybe this week. Although in the 2 years i've been going his annual leave has always been summer. I hope it means he's working on something from those results perhaps. I mean he verbally told me last time I saw him that he would write to me with them argh!
 
My emails quit for this thread. It does that from time to time...

Cat - sounds like typical lazy person. I have never heard about there being an age limit for exercise. That's pretty lame. Now, maybe she has no lung power left due to the smoking, but that's an entirely different issue altogether. That's nice, make a snide comment to someone for exercising?!! Geez...My husband lost a bunch of weight in the last 10 months doing it the right way - diet and exercise and I'm so proud of him!! And people will come up to me and ask me how he did it (like it's some freaking mystery), and I tell them just that, that he did it the hard, right way, instead of relying on pills or HGC or whatever the latest craze is. But yeah, it seems like no one wants to do stay healthy the right way anymore - it's whatever involves the least amount of effort, if they're even interested in trying. I've been taking an adult ballet class once a week and I feel so good! It's motivated me to do more at home. I love it, I'm having the best time!

Hope everyone is as well as can be.

Love,
May
 
May, welcome back, how was your trip? Congrats to your hubby for losing weight and doing it the right way, that's excellent and I'm glad his hard work paid off! And good for you for taking a ballet class, that sounds like fun. I have been trying to exercise a lot although I haven't taken any classes yet (I've been considering taking something like karate or kickboxing though, I'd like to learn how to defend myself as I am so not tough). It's ridiculous that your hubby is getting the same kinds of comments I've been hearing, it seems like a lot of people really are just lazy and looking for the easiest possible way to lose weight/get in shape. I'm not even really trying to lose weight, I wouldn't mind losing the 10 or so extra lbs that I put on when I was on Entocort, but that is certainly not my main goal - what I really want is to simply get as fit and healthy as I can so that I can fight this illness as effectively as possible. But when I tell that to people, it's like I'm speaking in Esperanto or something! "You go to the gym, often, on purpose, and you're NOT just doing it to look good?? Huh?"

That reminds me, my cousin and her husband recently joined a gym. The husband told me that at least half of the people at the gym seem like they just want to be seen. That makes me so glad I go to a gym that hardly anybody else ever goes to! (It's in the basement of my workplace and is just for employees, and I am usually the only one in there which is great.) And speaking of that, my snarky smoking co-worker asked me which gym I go to. She said, "Do you go to a REAL gym or to the one here?" Um, hello, the gym here is a REAL gym. It is small, yes, but it is a proper gym. It's got weight machines, treadmills, a stationary bike, and a mat with mirrors for stretching/yoga. I utilize everything in the gym during every workout - I jog on the treadmill to warm up, then I do 20 reps on every weight machine, I do my stretches on the mat for my hip, and then to cool down I ride the bike and walk with the incline maxed on the treadmill. The whole thing takes just under an hour and I definitely feel great and tired afterwards and I'm much more fit now than I was before I started going to the gym. Tell me how that isn't "real"! Sheesh!

How's everybody else doing? I'm okay, a little depressed because I'm cutting bananas out of my diet for now to get my GERD back under control. Who would have thought that bananas would be a reflux trigger, but they seem to be for me. :( It sucks because they are my one really safe fruit. I'm eating rice cakes as my snack instead of bananas but it just isn't the same.

On a plus note, the weather here is fabulous! I hope everyone else is well enough to get outside, assuming you've all got the same great weather! It's 80 degrees and sunny here! (80 F = 26.6 C for those who are outside of the US.) It's ridiculously warm for March in Wisconsin, but I'm not complaining! It's usually in the 40s, not the 80s, at this time of year. It's crazy! Anyway, hugs to all and I hope everyone is doing okay.
 
You are right Cat, I should slow down. My body actually forced me today...my pain was so darn high I didn't even have the energy to discipline my parrot when he was trying to throw all his food out of his cage (he is a picky eater and will throw the stuff he doesn't like all over the place). I ended up taking the MAX dose of tramadol to get through our final dress rehearsal tonight, and I am still in so much pain. I cannot wait until Stuart gets home....

May, good for your husband! Those crazes are just to weird. The HCG one is insane in the fact that you have to stick to only 500 calories A DAY. That is just so stupid! Dr. Oz actually tried to see if it worked for some of his viewers, and I cannot believe a doctor would even try to reason with that kind of diet. But that guy has completely gotten into subjects to get his fans to watch, who are usually in their 40's and trying to lose weight an easy way. I only watch because I only have 4 channels and he is the only good thing on!
 
Cat...bananas are a bit rough on the tummy...apparantly they are like having caffiene (as per my hubby's doctor). Which does suck especially when they're used as a safe food! My hubby had to cut out coke & caffiene and bananas for about 6 mos b/c of GERD. He's able to eat them again now. So...maybe after a while you'll be able to eat them again too. Fingers crossed! Now on a totally unrelated note...which wipes did you say were good again? My poor bottom was raw after having 15 bm's the other day..i vaguely recall you recommending a certain kind. Would you mind telling me which one it was again. I've gotta carry some around in my purse for those 'special days'.

Allie...i can't even imagine how much pain you must be in. I can't say that i've ever danced, but from what i do know of it, it's a very strict discipline. That's gotta be hard on the body & joints. I hope that your body holds together till the end of production. I'm rooting for you! :ghug:

Sunshine...i have endometriosis and i've even had a cyst break on me while at work...amazing PAIN! I've also had surgeries for my endo. It's my understanding that unless they become quite large, they tend to leave the cysts. They will likely fluctuate with your cycle or just come and go...grow & shrink in size. The internal ultrasounds are not pleasant, but are doable. Don't be afraid. Just try to breathe deep & before you know it, it'll be over. And if/when they do hit a tender spot, be sure to let them know. It's difficult to get past the whole modesty/embarrasment part, but you need to remember that the technicians do this all day long and you're not the first /last one. It'll be okay!

Flower girl...i went grocery shopping today. It was a joke. I had to laugh to myself, b/c everywhere i looked, there was something else i can't have! If it was dairy free, then it had soy or sunflower oil. Bugs it is!
Well, I have begun my research and am SOOO thankful for the internet. I've found some amazing websites & blogs with lots of info and advice. So i've picked up many different kinds of gluten free flours, and xanthan gum & egg replacement, and dairy free 'cheese' & yogurt looking stuff made from coconut milk & rice milk...it'll just be a bit of an adjustment on my cooking. And tonight i'm going to begin dehydrating apples & strawberries to put in the breakfast 'cereal' that i'm going to make from chia, buckwheat, hemp hearts, flax & whatever else i fancy!! lol. I'm determined to find a way to work around all these limitations. At least ONE thing i try to bake WILL turn out; i swear!! :dance:

I hope everyone else is having good days filled with sunhine and fresh air! Take care all.
 
The video is posted under undiagnosed club with all the threads and it's also on my YouTube Channel. :) Glad you like it!

I got the ultrasound done... there was no sign of any cysts that she could see. She did however keep complaining about how my bowels were hiding my left ovary (the place where the pain hurt). She kept having to push around on it and could hardly get a good picture of it. She did think everything looked "normal" (of course, why wouldn't it look normal, isn't that what my body is BEST at doing? *you should of seen the excitement in my face... >_<). I talked to my gynecologist for a very long time though and she did feel like the pain i'm feeling sounds a lot like endometriosis especially around my period. She said she is very concerned and is strongly wanting me to get the surgery done to have them take a look around... They said if they go in and everything appears "normal" then it's probably pain from my intestines from the colitis, which is not good at all if that's the case. I still haven't felt like prednisone has really helped much. My acne is in FULL SWING thanks to pred. but i've been having the same cramping pains and such all the time like normally, and I've had D still. I almost had an accident yesterday when I was out so that was scary, but I made it last minute. yesterday i pushed myself to get out of the house and went to see shamu at sea world. bad idea. ended up hardly being able to walk my joints were so swollen, had a migraine and stomach was awful. so today I just sat around and did crafts... Friday I am tapering down to 30mg already.
But yeah back to the gynecology stuff... I am probably getting the surgery done April 6th or April 13th they said, so not too long away.
My doctor said I look like the typical patient for endo, but she did say sometimes they go in and find nothing, so she said we need to check it off the list anyway. If I have it then that stinks but at least I know. and if I don't have it then, good to know too.
I just am very nervous because I HATE laparoscopic surgery, and the air they put in you... it hurts :( and she said since i'm on steroids, they are going to have to take extra precautions with me under anesthesia :( and with my laparoscopic gallbladder surgery I had last year, it took literally a month and a half to recover because my intestines freaked out after. so i'm just nervous because my intestines HATE when people play with them. :(
so I am very nervous. I do hope they can find something that is causing my awful periods though. but my intestines still aren't getting much better, so just nervous...

P.S. I can't stand when people making remarks about how little I am or how white I am... like I'm SICK! what do you expect?!? :/ My friends boyfriend always says stuff like that about me and it bothers me.. and they are like, why would you wanna go to sea world that's boring, there are no rollercoasters. I'm like.. well if you never got out of the house, a walk to the mailbox is exciting. so to me i love sea world. but whatever. lol. just annoying what people say behind your back.
 
ever - i was actually going to suggest coconut milk stuff! my son is allergic to eggs and dairy, and he has this coconut milk ice cream that he eats. it's expensive, but what do you do? it's super sweet, because of the coconut, be he likes it. they also make a coconut milk yogurt. and rice milk really isn't so bad. this sounds weird, but it tastes like breast milk. :blush:(this was my own breast milk that i've tried. lol)
 
you can also try almond milk. I liked it a lot more than soy, and it seemed to have more body to it than rice milk.
 
Thanks Carrie...I was drinking almond milk, until i found out that i'm also allergic to almonds (and soy and sunflower seeds/ oil)...which makes it tricky to find a dairy free anything b/c if it doesn't have dairy, it's got soy or sunflower oil!

Sunshine. It sounds silly, but i've been telling anyone who mentions they're going to have any surgery that involves entering the belly laproscpically to ask their dr to be sure to press on your tummy after they're done & prior to sewing you up. This is a great help to get most of the co2 out of your cavity that they blow you up with & results in less shoulder/back pain as your body doesn't have to absorb as much. As for healing time, i'm with you too...i take a bit longer than what they say too. After all, this is an autoimmune disease therefore it's a bit more difficult for our bodies to recover. But I agree, it is nice knowing either way.
Sunshine, I had sent you a private email...not sure if you received it. Maybe you should consider checking if you have food allergies too. You may be surprised & that could possibly be contributing to worsen your condition. Just a suggestion.

I was up all night with a nasty migraine...my meds didn't work. Had to wait 4 hrs in between doses in agony & they still didn't work. Sore all over today...joints, back. But at least the sun's shining. :rosette1::rosette1:
 
Ever, did they say if you're allowed goat or sheep dairy? I love goat and sheep cheese. I can't do cow dairy very easily but I can tolerate goat & sheep milk cheese with zero issues. I'm not sure if the lactase is different not not present or what but those are always easy on my tummy. And I agree with Carrie, as far as the milk substitutes go, almond milk is far and away my favorite! It's creamy and tasty and thick. Stuff like rice milk and even some soy milks are just thin and watery and blah. Coconut milk is so-so but very expensive. Almond milk isn't as costly and is really good!

Oh, and Ever, as far as wipes and creams - most flushable wipes are good, I buy Cottonelle personally. As for butt creams, go for Calmoseptine or Tucks - I alternate between both. Calmo is very cooling and soothing. Do you guys have Walgreens in Canada? I know you can get it on Walgreens (they usually keep it behind the pharmacy counter so you may have to ask for it), otherwise you can buy it online too. Tucks is hemorrhoid cream and can be bought pretty much anywhere I think. When I "go" too much, my anus gets a bit swollen and inflamed and sore, and Tucks helps reduce that inflammation even if I don't have hemorrhoids at the time. It's not as cooling or soothing as Calmo, but Calmo doesn't reduce inflammation like Tucks does, which is why I alternate between the two.

Sunshine, I hope the laprascopy can get you feeling better and doesn't upset things too much! And I know what you mean about how even going to the mailbox is exciting when you're so ill. I went through several flares where I didn't leave the house for days and days, but then had to leave to go to the doctor. It was like, whoa, I forgot what being outside was like! It's so bright and the air moves! :p

So yeah, as for me, I'm cutting out bananas for now. I know that refried beans are a reflux trigger for me too. Sometimes tomatoes too although not always. If I eat tomatoes and chocolate on the same day then I usually do reflux. Chocolate is a trigger if I eat more than a little bit, so although I love the stuff I limit myself to about one piece per day and then I'm okay. I had no idea bananas could cause reflux though. Ever, it's good to hear that your hubby experienced the same thing, that lets me know I'm not crazy! And I'm glad to hear that he was able to eventually reintroduce them into his diet, that gives me hope.
 
Cat, that really sucks about the bananas. I didn't know that they could cause any harm. Yes, we had a nice trip. I knew the kids and my husband would have fun (I think he was as excited as they were) but I didn't know I'd have such a nice time. It was a lot of fun.

And I too would rather go to a gym with as few people around as possible. I would neither want to look at those people who walk around enjoying looking buff nor would I want to be "sized up" for my having cellulite or whatever.

Weather here is insanely warm - we're in the upper 70s/low 80s also. I think we had only about half a dozen "cold" days this winter. It's been ridiculous. Pollen has been in full force for a few weeks already and people's allergies are going nuts.

Allie, I agree about Doctor Oz; he seems more sensational than anything especially now that he's on TV. Yeah, if you're limited to 500 calories a day (essentially starvation) how is anyone to say that that isn't causing the dramatic weight loss??? We know some people who've done it. And most of them buy their "HGC" online or from CVS. Really? You're going to use a hormone for weight loss and you think it's a good idea to get it from an unknown source?? If you're going to do a risky diet, then at least have the good sense to do it under a doctor's care. Most of them have gained back what they've lost, but they don't care b/c they've got this easy way to lose weight. Ugh!!
 
Sunshine, hope your lap finds something that can alleviate your awful periods. Hang in there! I hope relief is really around the corner. When do you go back to your GI (who sounds pretty awesome, by the way)?
 
Thanks Cat. I was surprised to see that both cow milk and goat milk were on my list. And i just bought a huge vat of feta cheese (love it) from costco right before i found out! My naturopath tells me that maybe once my intestines have a bit of a chance to heal up, then my body may be able to digest a bit of dairy. Fingers crossed b/c i LOOOOVE my cheese ;)

Please take care and have a wonderful weekend everyone! :dance:
 
ever - my mom has celiac, and she had to go no dairy for awhile, but now that she's healed up she can do cheese and the occasional milk or ice cream. she just can't chug it.
 
Ever, I actually checked for food allergies and I am not allergic to anything. I will ask my doctor what they can do to help get more air out of my tummy before closing me up. because it would be great to get some of it out, especially since i'm so tiny, the air just bursts through me and causes awful pains, and I already have bad joint pains so this will just aggravate it even more. thanks for the tip! :)

Cat, you're so funny! but so right! "whoa the air moves!" haha :) it's the little things in life.

May, I don't see my doctor again till June 1st!!! So far away.. I may have to get an earlier appointment if I'm not getting better. but we will see.

I'm getting a new style of hair tomorrow!! Probably get some color and highlights or something. I want to do something different, so I feel different. I'm also going to ask them how to do styles that can add volume to my hair because i could use some tips for that since my hair is so thin now. I want a little 'life' to my hair since I don't have much of a life right now haha. :p
 
Sunshine, look for volumizing (thats probably not the right word) powder. I have some from aveda, but I've seen other brands too. you put it at your roots and kind of rub it in so it poofs your hair up off your scalp more. my hair isn't equally thin all over my head so parting on the side generally masks it.
 
Agree about the hair powders. Bumble and Bumble makes one (it's expensive) but i kind of liked it. A lot of dry shampoo/hair powders will help volumize a lot. Are you getting it cut significantly? I found that with my hair, the longer it is the more it just gets pulled down. Getting it cut all off really made it look like I had 2-3 times the hair I actually had. :) Good luck.
 
Speaking of volume...for my birthday i got a triple barrel curling iron. It's fantastic b/c it makes my hair look alot thicker & adds volume, as the hair is wavy. I've gotten tons of compliments on the days that i take the time to do my hair. If you've got the time, it's a nice change to switch it up from straight to curly whenever you want! (It takes me about 20-25 mins to do my hair...and it's about halfway down my back)
 
Hi everyone, I am very new to this, and perhaps someone can give me some input.
I have not been diagnosed with IBD or anything else for that matter! But crohns disease is a possible answer that a GP gave me last week.
Abdo pain on and off for 2 yrs. mirena inserted thinking it was gynae pain. Sep last year, diarhoea and some vomiting. Diarhoea lasted intermittently for about 6 weeks. Pain has remained since them. Local GP, blood test revealed nothing to explain pain. Referred to Gastro dr at local hospital. He was hopeless, did nothing and referred me back to gynae drs.
Stool sample was Normal. CTscan showed ovarian cyst ( yah an answer!) ultra sound in January showed no sign of cyst! Went to gynae specialist, he did full history and exam and says it is definately not gynae related and has referred me back to gastroenterologist. I have made an appt privately in the hope they are more thorough then the hospital Doctor!
The diarhoea has completed settled, and I just have the pain, right sided, similar to where appendix would be ( except I had mine out 25 yrs ago. ). The pain goes right round to my back causing lower back pain as well. I am fatigued, a different local dr that saw me last week said he thinks it's crohns disease, but I thought that was normally associated with diarhoea and weight loss. Any help or suggestions. Oh I have tried different foods when it was suggested It might be IBS. Makes no difference. I only eat small amounts of food, I can't eat much or don't feel like eating much at one time.
Thanks
 
gall bladder has been ruled out. The pain is too low, that is why it was thought to be gynae pain. Lower right hand side, in line with ileum which is often a common place for crohns.
So I have RLQ pain, radiating to back, period of diarhoea for six weeks, now settled, headaches, fatigue
Thanks
 
I just need to say that I absolutely HATE waking up with last night's dinner still in my stomach. I just wanted something other than pudding so I had some tortilla chips and salsa.. day after salsa burps are really heinous. I just sent all of my health savings account money to the doctor for the ITT and other stuff, so I probably need to wait another month or two before there will be enough to hopefully cover my portion of the gastric emptying test.

It is March, and I am halfway through my maximum out of pocket for the year. health insurance must hate me. at least they can't drop me because it comes through work.

also: my prilosec isn't doing much. I'm already at a quadruple dose.
 
I've never heard of hair powder before, I must try this as I have very fine, thin, and flat hair myself! It's actually way too long, I'm going to cut it all off soon. I wonder if coloring my hair is weighing it down a bit too. Do you guys color your hair also? I started going gray right around the time I became ill and have been coloring it ever since. I do it myself at home from a box as I can't afford to have a salon color it/touch it up as often as it needs to be done. At one point literally my grays started coming back only 10 days after I had colored it! Argh! I'm guessing I must be prematurely graying due to this illness - my mom didn't start graying until her mid 40s and my dad just started going gray recently, in his late 50s. Genetically speaking, I probably should have had 10 to 20 more years before I started seeing grays, rather than seeing them around age 29!

Kochie, welcome. Have you had any tests for IBD (not to be confused with IBS)? Blood work and a colonoscopy is where most people start. Not everyone with Crohn's gets diarrhea or weight loss, everyone has different symptoms. Some people experience constipation and even weight gain! The symptoms can be vastly different from person to person. A lot of symptoms can be considered "extra-intestinal" as well, everything from joint pain to eye pain to migraines to skin issues can be symptoms of Crohn's. So when you see the new doctor, tell him/her about EVERY symptom you have, even if they don't seem related to your abdominal troubles.

Carrie, have you tried Nexium? I switched from Prilosec to Nexium a couple months ago and I'm glad I did. Nexium isn't perfect, but it's working better for me than Prilosec was. And, I love chips & salsa too but they don't do good things for me. I usually end up doing tortilla chips, which are corn-based, and corn is apparently just not digestible. And I can't really digest the tomato in the salsa either, tomatoes are just not good for me even when they've been processed like in salsa. I did get some sweet potato chips (they still have corn in them, but not as much) that are easier on my tummy, so I still stubbornly eat chips & salsa pretty often. I can actually handle mild spice again and I love salsa so I can't resist! It's worth the discomfort, well that's what I tell myself anyway. ;)

How's everybody doing today? I actually had a bad day yesterday, haven't had one of those in awhile. They brought in taco fixings to work and I had two chicken tacos. I thought it was pretty safe - the chicken was very mild, and I had a few tomatoes (I know, bad) and a little cheese and sour cream (also bad) on flour tortillas. I guess the small amount of dairy was too much for me though because a little while after eating I suddenly had to run to the bathroom and the cramps were awful! I didn't have d, but it was pretty close to d. I felt weak and fatigued and yucky the rest of the day. I'm okay today but not eating much as I don't want to re-upset things in tummyland. I'm going to go to the gym soon but I might not push myself as hard as I usually do. It's humbling to know that one wrong meal and I'm right back where I was. Remission sometimes allows me to be in a bit of denial about my illness and think I can do more than I can or should. So it was good, in a way. I'm still in remission but I will remember this incident the next time a potentially unsafe food tempts me, that I need to play it a bit safer.

I hope everybody has a good weekend and that your tummies are all friendly to you! I'm hoping to ride my bike (I need to buy more sweet potato chips, ha ha). I got my basket and helmet and everything so as long as it doesn't rain, I will be running some errands on the bike! We just did some repairs to both our cars but gas is so freaking expensive lately that I don't want to drive more than I have to, ha ha. Anyway, I hope everybody is well, hugs to all!
 
I didn't dye my hair for about a year, but did it again recently. I don't wash my hair everyday, and I think I'm about to switch to washing with shampoo once a week and washing with conditioner otherwise. It works very well if you're using conditioner without (certain/most) silicones in it. the foaming agent in shampoo strips the hair a lot, so even just switching to a no or low foam shampoo could help.

I would like to switch to nexium, but I need to do some research first and figure out if I need to do any appeal paperwork with my health insurance to get it at a decent price.

I knew I would pay for the chips and salsa, but I did it anyway. Or rather, I had very strong suspicions that eating chips and salsa at ~9pm would cause me issues the next day.

I've been real tired and sore. I've had to stop my alternative medicinal therapy, because I can't afford my bills if I do. if I thought I took a lot of pills before, well, I take more now. ~2 zofran, 1-2 xanax, 4-8 tramadol, 1-2 flexeril (sometimes 3), ~1-2 fiorinal(not every day. this one I try not to take if I can help it at all.) as well as the pile of daily pills (12 pills in the daily pile) sucks, because it was the only thing that stimulates my hunger and calms my stomach enough to partially enjoy a meal.

I haven't been having any D issues since I had to start taking more tramadol, but I get a lot more horrible pain because stuff is too solid to be exploded out of me. Been thinking about taking some miralax daily. I am not eating high-fiber foods so that's not part of the problem. doing that makes the pain 100x worse.
 
Carrie, it initially was going to cost me $58 monthly for Nexium, but then I found this link to a savings card from the manufacturer:
http://www.purplepill.com/taking-nexium/purple-plus-savings-card.aspx
All you need to do is print it and take it in to the pharmacy with your prescription, it hopefully should save you quite a bit. I now pay $18 per refill instead of $58 with this silly little card. You don't even need to fill out a form, literally just click "print" and that's it. In fact I print a new one each month when I refill my Nexium - they keep my info on file, but I feel better about printing a fresh one each time. I think my pharmacist has to fill out some paperwork for it but I don't have to do anything. It says you can use it for up to 12 refills - I hope they don't cut me off in 10 months as I've used it on 2 refills so far.

And ouch, eating that late in the evening alone would not be good for me, I try not to eat after 8 PM at the very latest or my guts won't let me sleep. Having said that, sometimes hubby and I go to this improv comedy club on Saturday nights. It's in the basement of a pizza parlor and you can get pizza while you watch comedy. They have these cheesy breadsticks with spinach, and they come with this marinara dipping sauce. They are to-die-for delicious, awful for my guts (dairy, veggies, and tomato sauce - not to mention theyr'e pretty greasy!), and when I eat them it is of course late at night. There is nothing good for me in those cheesy breadsticks but I am drooling just thinking about them! I take about 10 Tums when I eat them to try to keep things at least somewhat under control. Did I mention the only bathroom is upstairs in the pizza parlor at the far end from where the stairs to the comedy club are? And to go to the bathroom during the show, you have to pretty much get right in the way of the performers? Yeah, so I totally get being a masochist about food, knowing you'll pay for it, but indulging anyway. Even late at night, and in public no less. Still, cheesy spinach cheese sticks... yummmmm!
 
last time I was prescribed nexium, the cost out of pocket was like $300. I'd be ok with $58, I pay more than that per month of prilosec (its $80).

I hated eating that late, but my nausea was finally gone and I really needed to take the rest of my meds. I feel bad because Kelly wants to go out to eat tonight, and all I want to do is lie down in bed or sit in the bathroom. bah
 
Thanks Cat. All the info I can find points to diarhoea and weight loss. Apart from that one episode, I don't suffer with that very often and I feel for all of you out there that do! I Di get really bad cramps and D sometimes, but have always just assumed it was something that just didn't agree with me. I have had bloods done, which have showed nothing untoward, ( high cholesterol, low Vit D but nothing else). I assume I will have to have a colonoscopy once I go and see the GI dr on 16th April. Although my other dr said he doubted whether it will show anything.
Thanks. And I will continue to watch your journeys and get inspiration from you all
 
Finally got my MRA results, can you believe the images were not good enough again, so Rheumy has applied for the PET scan again on that basis. Not holding out any hope. He's advised me to go to A&E if I have another bad flare-up so they can ultrasound the sore parts to see if anything would show up, which would help with a diagnosis (even if it's just a dx of the joint pain and not all my problems).

Other than that we are reaching the end of the road where I need to decide treatment or another Hospital.

So frustrated. Just cruelly prolonging my hopes of a dx! Can't believe the test didn't work again, going to ask why let me tell you! They were so much more through with me the second time. May even put in a complaint and get them to do an investigation.
 
Getting near to a diagnosis - I hope

Hi all
I'm hoping I can get more sense from you than I can from GPs and a slow, disinterested health system.

So in brief - I've always had stomach issues - bloating/diarrhea/constipation as a child and found avoiding wheat helped so have done so for over 10 years (I'm 29 now)

Over the past 12 months I have had a whole array of weird ailments - recurring red eyes (which I blames on my lenses), constant night sweats (which I blamed on my pill), chronic iron deficiency (blamed on being veggie - despite taking supplements and eating well) and increasingly achy sore joints - neck, shoulders and my whole right hand side - under my rib cage is painful often. At the moment I can't lie down comfortably or carry a handbag. Oh and my stamina has been awful - I'm tired a lot and again this was blames on glandular fever.

I've had an endoscopy which showed a few ulcers at the top of my throat. Blood tests show very low iron and markers of some sort of reactive issue going on which could explain the arthritis-like symptoms. In two weeks time I get another blood test and if they show the same markers - i get a colonoscopy.

I guess my anxiety is that I know I've been having some of these symptoms on and off for years - and muddling by and ignoring it. HAving heard about Crohns just recently I am convinced already that this is what I have but worry that the docs won't diagnose it. I'm angry that its taken me all these years to join the dots between so many symptoms....

Oh and my sister (who's severly autistic and can't tell us exactly what's going on) is going through similar symptoms - swollen joints, arthritis, constand bowel issues, red eyes... the works.

Am I going mad or do all these things point to Crohns! I'm at my wit's end :(
 
Star, that really sucks. It does seem odd that twice in a row they couldn't get a good image, especially since the first images were not good enough. Hope you can get that PET scan.
 
Hi Santes- sorry to hear you have been through so much and have had to join our club:( I don't know that your symptoms specifically point to Crohn's- although many would seem to fit-, but it certainly sounds like something auto-immune. I hope you get the help you need!

Thanks May, not holding out any hope, they;ve turned me down flat once already, and even if I get one booked i'm not telling a single person until after i've had it- after all my Pill Cam was booked but I never got it! I am puzzled too and will be asking for a full explanation. They tried so hard the second time I am really surprised, cannula vein access was improved, they took my weight to calculate the correct amount of dye, I had some extra equipment on my belly to improve the visual and they even gave me an injection halfway through to stop my bowels moving.


:stinks:
 
space - it's called So Delicious. it's soy free and dairy free and organic. it comes in about 4 flavors. the company is called Turtle Mountain. they have a whole range of soy and coconut stuff. i've been able to find the ice cream at most places.
i don't know where you live, but the company is based out of oregon, i think, so if you're west coast you'd have an easier time finding it. they also make a soy and dairy free coconut milk yogurt that's pretty good. they used to carry it here, but then they stopped. it's a small city in florida, so i guess it wasn't doing well enough.
here's the website:
http://sodeliciousdairyfree.com/products
 
Star, that's unbelievable! I wonder if the MRI techs are just incompetent or what! I've had one MRI, of my liver, and they got all the images they needed and the images were clear, in spite of me not being very still (especially at the point when I had a bad reaction to the injected dye and I freaked out inside the machine!). They'd tell me to hold my breath for a ridiculously long time, it had to be more than 30 seconds at times, and I just couldn't do it for that long so I'd sneak little breaths. And I was just generally uncomfortable and cold in the machine. So if they were able to get clear images in spite of all my moving around and breathing when I wasn't supposed to, it's just mind-boggling to me that they still couldn't get good images from your do-over of the MRA. It sounds like sheer incompetence to me! Good luck with getting the PET scan (hopefully the same techs don't run both the MRI and the PET scan).

Flower, I used to eat coconut milk yogurt and I think that was the brand name of the ones I got. They were expensive, something like $2 for an individual carton of yogurt. I switched to soy yogurt after awhile because it was cheaper (69 cents per individual carton) but probiotics just don't do good things to me so I stopped doing yogurt altogether after awhile. But anyway, back to the coconut milk yogurts - I know I had bought them at Whole Foods, so if anybody else is looking for coconut milk yogurt or other coconut milk products, that would be a good place to check if there's one near you. I think they carry them at Woodman's too although I think Woodman's is just a regional/midwest thing and they don't have stores everywhere.

Sunshine, I saw your latest video, the one about IBD thoughts while driving. It was very cute! I'm the same way. "Hello, 35!" Ha ha. How are you doing lately? Is the pred helping at all yet?

How's everybody else? I'm sore! I exercised a lot the past 2 days plus I had a massage. I haven't had a massage in quite awhile, so I'm not sure if it's just that it's been awhile or if he was rougher on me than usual, but I was really extra sore after my masage! My back and neck muscles felt like they had been pummeled by a meat tenderizer. The massage was on Sunday (I also rode my new bike about 6 miles, did yoga and walked the dog on Sunday prior to my massage so I was already sore). Monday I hit the gym as usual, but my back and neck were so tender that I had a hard time doing certain things. So I worked stuff like my arms and abs a bit harder than usual and now my abs are really sore today! :p I'm taking today as a rest day, no exercise whatsoever.

I'm loving my new bike though. I meant to bring my camera with me on my ride and take some photos of the bike but I forgot! But yeah, I rode my bike along the lake and through the park on my way to the grocery store on Sunday. I didn't realize that the way to the grocery store is pretty much all uphill. Most of it is a very gradual uphill but it's still exhausting and I was dead tired by the time I got to the store! The way home was fortunately really easy as it was mostly downhill so at least that was nice, ha ha. I think it took me about an hour to get to the store and about half that time to get home! I was really wiped out when I got home but I'm glad I did it, I like being challenged. My new bike is so much better than my old one, too. I invested in a cushy gel seat, and my butt wasn't sore at all after my ride! That was really nice, I was a bit afraid of the toll that bike riding was going to take on my booty (it's already been through so much, ha ha).

How's the weather by you guys today? It had been really nice here for weeks but it's cooled off quite a bit now, it's in the 40s and very windy right now. Brrrr! They're talking about frost in the forecast too so I'm glad I didn't plant my garden yet, I was really tempted to as it was in the 70s and 80s for quite awhile.
 
@Cat I am so glad to hear that you are riding your bike and loving it! I rode my bike this morning to work despite being up from 2 to 430 last night with stomach issues. I had already made plans to ride in with a coworker so such is life. My 3 week biking hiatus really did a number on me! I will be good and sore tomorrow I am sure :p

@Flower thanks so much for the info. Sometimes I just don't feel like putting in all the extra work of doing everthing myself.
 
space & cat - yes, they are expensive, but like you said, space, sometimes you just don't feel like making it yourself. my little one is allergic to milk and eggs, so it's tough finding him dessert things, since most baked goods have one or both.
weather here is beautiful. 80 and sunny. unfortunately it's only march, so that's a little hot for me. don't even want to know what it's going to be in July. :ywow:
 
Cat, I get massages from a friend every once in a while and she said that if you drink tons of water in the 24 hours post-massage, it helps alleviate the soreness. I did that last time, and other than the area in my neck she really worked on, it worked.
 
I am still really pee'd off about the MRA, I keep clinging to the fact that Rheumy said if second try didn't work that would help my chances with the PET scan. But i'm not holding out any hope on past experience.

Had another awful joint pain flare :( I could feel the pain getting worse and worse over a couple of days and then yesterday evening the fog hit. Luckily it had gone by this morning otherwise I would have gone to A&E. But they are so bad and leave me so exhausted that I think I need to go as soon as one hits, to get some pain relief if nothing else!
 
@Star I wish that they would really speed things up for you. I can't tell you how many times in the past year I have considered walking into the ER just to get a different opinion and hopefully a diagnosis. Then I had to remind myself that it is a science and just like what I do everyday there is not always a clear answer as you expect. It is frustrating but stay persistent. Find a new doctor or keep calling your insurance.

It wasn't until my 6th call to insurance that I even was cleared for a second opinion...

Thinking happy thoughts for you...
 
@Sunshine I just finished watching your things doctor say videos...so very true and very funny!

One time I went to a rheumy and he said to me "well something is wrong with you but you don't look like my typical patient, so you should go back to your gi"
 
Well I lied, I said that today is a rest day and no exercise whatsoever. But I just did a bit of yoga in my cubicle. Anybody else get that afternoon sleepy feeling? I do, and I find that just a bit of exercise helps wake me up. So I did a couple yoga poses and a few push-ups too and now I feel more alert. I'm thinking of getting a cheap yoga mat just to keep at work (I'd use it in the gym more than at my cubicle of course!). Is that weird of me?

Space, StarGirrrrl is in the UK so it's not a matter of insurance unfortunately. I don't have a good understanding of how the system works over there, but it seems to be up to the doctor/hospital's discretion as to whether or not someone can get a specific test or not.

Star, I think that's a good idea, just go to A&E whenever you feel a flare coming on, hopefully then they can give you some meds or treatment to get through it easier. And that way they'll have a record of how often you flare, how severe the flares are, etc. Maybe if they see a pattern of you having flares and needing to use A&E, they'll take you more seriously and get you some more appropriate and long-term care. During the first year I was ill and on no medication, I flared regularly and I went to urgent care every time I got too dehydrated. My GP and GI were able to look in my file and see that I had been to urgent care at least half a dozen times during one year, and they knew that wasn't right and couldn't be related to IBS either (I know that diarrhea is the most common symptom of IBS, but not so much diarrhea that you get severely dehydrated!). So yeah, it might be inconvenient but it sounds to me like it could be beneficial to you to go to A&E more often rather than toughing it out through flares.

Space, I heard something similar from an orthopedic surgeon that I went to. I was referred by my GP as he thought (and apparently still thinks, but that's another story) that I had arthritis in my hip. The ortho surgeon said I was not his typical patient - I had no limp, only intermittent pain, I could walk fine, I could cross my legs, etc. And I fit into the hospital garb they put me into for my exam. They gave me these huge scrubs-type shorts to wear, they were about two dozen sizes too large for me. I could have easily fit two of me into these shorts, one in each leg. The ortho surgeon said that many of his patients can't fit into these shorts at all - it seems many of his arthritis patients are quite large! So I'm definitely not the average patient in that regard! And it turns out I probably have hip bursitis, not arthritis (my GP is sticking to his guns and still believes he sees mild arthritis on my x-rays, although my pain is more like bursitis and I've been responding much better to bursitis treatment than I was to arthritis treatment, so I think it's bursitis).

May, I've been told that about drinking water as well. I try to drink as much as I can, but sometimes it's just not possible. Part of the problem was that my massage was in the late evening, and I hate drinking water just before bed or I'll be up several times during the night to pee. Waking up in the night is not pleasant, especially on Amitriptyline (it makes me really dizzy if I take it and then wake up in the night). Plus I have a cat who somehow always manages to be underfoot, especially when it's dark and I'm dizzy and can't see well so at least half the time I get up to pee, I trip on the stupid cat and then I swear or the cat yowls and that wakes up hubby... seriously, I stop drinking water around 7 or 8 PM as it's just not worth it! And my massage the other day was at 8 PM. Next time I will try to get a much earlier time for my massage!
 
Cat, I think you have a good grasp of our health care system! The Dr decides on the test and makes an order to the relevant department, and you get it. Additionaly the more expensive tests are decided by a funding board. In the NHS there is a system called "the postcode lottery". Basically each NHS decided how to spend their own money; so something freely available in one area may be restricted or not given at all in another.

This is where I am running into problems. All the standard tests, pretty much all you can have, haven't pinpointed my problem, so I need the better more expensive ones. But the funding people say n-o.

I have been back at my Hospital for over 2 1/2 years now and still no closer to answers. Diagnostically I am reaching the end of the line, and I have to decide whether to take a trial treatment or go to another Hospital (which has better immunology testing apparently). No expensive tests i've been denied still, even at another Hospital, as it would be my local funding board paying for my visits- if they are not willing to fund here they will not fund elsewhere. Pros and cons to both choices. Not sure yet what to do but time is running out fast.

I am going to have to do the A&E trips for these awful flares, they really are something else to my usual pain/typical flares. The pain is much worse and the fog is just awful. It's like another level of my pain! I mean over the years of course I have had flare ups and times when it is worse than usual. But this really is something else and frankly it is scaring me.
 
Star, do you get the fog with gut flares or is it only with the joint pain flares? I don't get foggy-headed with my flares. My emotions go crazy (I get really depressed and cry at the drop of a hat) and I get dizzy and light-headed, stuff like that, but I'm still as clear-headed as someone with those symptoms can be. It's worrisome that you're getting foggy, I hope that doesn't mean you have IBD and something else on top of it. I know a girl who has a bunch of different autoimmune illnesses, UC and RA as well as a few others, plus she supposedly has fibromyalgia. She's described having "fibro fog" when her fibro acts up. From this forum I've learned that fibro is similar to IBS in that many doctors say you have fibro when they can't figure you out and fibro may or may not actually exist as a legitimate illness. But I guess my point is that this girl I know, she gets fog too and she has multiple illnesses. I'm not sure how she came to attribute the fog to fibro. But she has IBD and joint issues (RA) so I guess pretty similar to what you've got going on. I haven't heard of fog being attributed to IBD. So that worries me - I really hope you don't have multiple illnesses going on! :(

Have they checked you for RA? Have you ever had your ANA tested? I had mine tested when they initially thought that I have arthritis, as they wanted to check for RA, and apparently RA can show up on ANA testing. It's a simple blood test, so you should look into it if you haven't had it done already. I'm not sure if it always shows up as a positive ANA or not though. It might be like lupus, where ANA could be normal or it could be positive. I don't know, I'm just throwing ideas out there. Worried about you! Big hugs!
 
Thanks Cat :) The fog comes with the joint pain flares, happened twice so far. Having had the joint issue so long of course I have had flares of it before, but these are new, the pain is way more intense and this fog, it worries me!

Yep i've had my ANA done many times, always normal, everything is always normal except inflammation markers. I have had MRI's of the upper arm and shoulder joint (where it started out first) and a bone scan, all normal. Rheumy does want me to get an ultrasound if I can when I flare again, to see if they can spot anything. And I am going to ask for x-rays on my wrist, I mentioned to him that that spot (left side, oddly right side is fine) was quite bad, and he said he didn't see what testing that would acheive, which I agree with. But I have noticed since that spot it is usually very persistent and more intense than the other spots of pain, so I may ask again.
 
@Star, I am frustrated for you! Like our system I have never figured out how some guy with a stamp and no medical degree can refuse a service. Sounds like you are having a similar situation over there. How is that doctors get paid so much money to care for us yet they are unable to obtain the test required to come to a proper diagnosis?!

*steps down from soap box*

None the less star, I really wish there was some way I could help you!
 
Here's my newest video on Prednisone!!!
http://www.youtube.com/watch?v=OcVB574hbnc
Check it out! :)

I have still just been the same as usual... Prednisone seems to work some days but not others. I just don't get it. I'm on like 15 pills a day, but I'm still not feeling well and getting really bad cramping and sharp pains. and after I eat I still get that urgency to race to the bathroom or i'll have an accident... so idk. I'm gonna call my doctor or send her an email and ask her what i'm suppose to be feeling like.. because i'm not sure. i know that i kinda feel like when I'm not in a flare, but like my 'normal', when i wasn't on any meds kinda feeling.. :( which wasn't good. sooo.. idk.
and i'm getting laparoscopic surgery to check for endometriosis next Friday April 6th... so i'm nervous about that too.
but yeah... i'm just hanging in there!! getting my puppy therapy everyday! you know, the norm! :)

Hope you are all doing well. <3 you all are so amazing!
 
@Cat - yeah, my last one was at 7:30 PM, so I was in the same boat - and I pee all night if I have liquids too late, too. I just chugged it like crazy all day the next day.

@Sunshine - Sorry things are not significantly better. Let us know what your doctor says.

@Star - Ugh, is all I can say. Poor you!
 
Sunshine, for a video about prednisone, you were awfully calm! ;) If it were me on pred and I was making a video about pred, I probably would have yelled something like, "YAHHH!!!! THIS IS A VIDEO!!!!! I'M ON PRED!!!!! I'M GONNA CLEAN MY WHOLE HOUSE AND THEN CLIMB UP ON THE ROOF AND DANCE AND THEN STAY UP ALL NIGHT BUILDING A ROCKET SHIP SO I CAN FLY TO THE MOON BECAUSE PRED MAKES ME FEEL LIKE I CAN DO THAT!!!!!" In other words, pred makes me pretty wired, and it makes me feel like I have superwoman powers, ha ha. :p I definitely had insomnia when I was on pred, but I had so much energy and felt so marvelous that I didn't care that I wasn't able to sleep. It's good stuff although it definitely can make you go a little crazy! Anyway, I enjoyed the video and I applaud you for not being a crazy pred-head like me. Good luck next week with the laprascopy! I'll keep you in my thoughts!

Star, that is definitely worrisome that the fog and more intense joint pain is a relatively new symptom for you. :( I'm assuming you've already let your rheumy know, but if not please let him know about it ASAP! New symptoms are always something to take seriously. And I would say absolutely go to A&E if it happens again, it sounds really scary and at least in A&E you'd be in good hands and could get some treatment for the pain, if not the fog. (I'm wondering if there even are any treatments for fog, or is it a matter of waiting it out/ treating the underlying condition?) And as for x-raying your wrist, that may just find something. When my supposed arthritis was first diagnosed, that was found via an x-ray. No contrast or anything, just a regular old x-ray. So I would say go for it (if they let you have the test - hopefully they wouldn't deny you an x-ray!).

I'm doing much better today, my muscles have recovered from the massage. I hit the gym as usual today and feel just fine. I'm on my "time of the month" right now, and for the second month in a row, I've had NO cramping! I'm a little bloated but that's the extent of my menstrual discomfort. I've been taking psyllium husks for about 2 months now so I believe that must be what's preventing my cramps. Psyllium has been helping my bowels a lot - before psyllium, I was having 4 to 10+ BMs daily. Now I'm having 2 or 3, sometimes just one on a really good day. If anybody else is interested in psyllium, there's a thread in the Diet & Supplements section of the forum with lots more info. It's been wonderful for me! (If anybody else does start taking psyllium, start with a SMALL dose and work your way up slowly. I take one teaspoon per day which is a good amount for me. I tried 2 teaspoons once and ended up horribly crampy and bloated - the psyllium packaging says to take 2 tablespoons per day which would be horrible, so don't necessarily go with what the package says!!)

I hope everyone else is well. May, how have you been lately? I've been meaning to ask more about your Disney trip as hubby & I are possibly planning a trip to Orlando later this year if everything falls into place. Anything you'd recommend (or recommend avoiding)? Any restaurants you particularly liked or disliked, etc?
Sunshine, you live in Orlando, right? If I come down to Orlando in November, would you want to meet up at some point if you're well and feeling up to it? Possibly at my birthday party? :) This specific place I want to visit, it's kind of a long story, but basically there's this really unique and obscure (and nostalgic for me) place in Orlando that isn't open to the public but the owner sometimes (rarely) lets people have tours and even birthday parties there. My birthday is in November and it would be a dream come true to have a birthday party there so I'm hoping it can happen! So, it's a bit of a long shot, but if I can get the guy to agree to host a birthday party for me then I will definitely be coming to Orlando in November. :) I'm going to be contacting the guy soon so hopefully I will be able to tell you more about it soon.
 
Cat, I'm alright, thanks. I have had some iffy days recently bowel-wise, but nothing too bad. I hope the Xifaxan effects aren't starting to wear off. That would totally suck. I'm going to try to be positive and hope that doesn't happen. :)

Disney was sooooo much fun! I had way more fun that I thought I would. I knew the kids and DH would be fine, but it was surprisingly fun for me. It was exhausting, though. Things to avoid...hmmmm...to be honest we weren't overly impressed with Animal Kingdom. I will say this, though, I think it would be more fun as an adult sans kids as it is pretty exhausting (a lot of walking). Everything is spread out, and I don't think there are as many little-kid type things. I know that wouldn't be an issue for you, and we went to that park on the last day when we were pretty tired already, so maybe that had something to do with it. Honestly, it felt like a overpriced zoo. That said, the Expedition Everest ride was awesome!!

Definitely take advantage of the fast passes at all the parks- they save you so much time. The last time I was there was 13 years ago, and I don't think they had them then. When I heard people telling my husband about it, it sounded like a hassle, but it was not. It really saved so much time and allowed us to ride so much more than we would have been able to otherwise. It's funny, too, b/c anyone can get fast passes, and yet for some reason the people stuck in line still feel the need to glare at you, as if you're doing something unfair, LOL. Also my husband downloaded a free app for the iPhone that was a map and would also let you know the wait times at the various rides. That was very helpful. Loved Epcot and Magic Kingdom of course, and we skipped Hollywood Studios, but next time in a few years we will do that one and probably skip Animal Kingdom. Also they are in the process of doubling the size of Fantasyland so hopefully by the time you get down there some of it will have opened. It sounds pretty awesome!!

Avoid Rainforest Cafe at Downtown Disney - I though my food was gross, and my son ended up vomiting up the food he ate (the kids meal menu was particularly disgusting). Loved Biergarten in Germany (buffet - "all you care to eat"). My family wasn't too thrilled with the food, but I thought it was awesome. Other than that, overall the food was surprisingly good (although not cheap), but between the 4 of us generally we could split two adult meals and all be satisfied. I was expecting fair food, and was pleasantly surprised that you could get healthier options. Disney is nice, too, in that you can bring your own food in, so if you want to really save on food, go for it. Anyway, it was a lot of fun. I hope you have a good time.
 
funny. the hubby and i are planning a trip to disney in either october or november. it'll be the kiddo's first time. he'll be 4.
i agree with everything mayflower said. food is decent, but if you don't mind sharing entrees you can save $$. i like animal kingdom. it is more for adults though, i think.
i wasn't that crazy with mgm. i'm more of a ride person, not a show person. ironic with the theater degree and all. maybe i just see enough shows as a normal part of my life that i don't need to see shows at an amusement park. i will say that the aerosmith coaster is awesome, though.
 
Yeah, neither we nor my kids were that into the shows. I'd rather be walking around looking at things or riding rides. My son is 4 and he had a blast. Daughter is 6, so seeing the princesses and fairies was quite magical. My son wouldn't talk to any of the characters who didn't have their faces covered. So when we saw Alice and the White Rabbit, they offered to send Alice away. Very accommodating. Although I'm not sure Alice was too happy about it...:)
 

Attachments

  • boy and the Rabbit.jpg
    boy and the Rabbit.jpg
    147.3 KB
May, that's so cute! I have very specific memories of going to Disney when I was 4, that seems to be a really good age for kids to go. They're just old enough that they'll remember it, but not so old that they know it's all make-believe. I hope your kids behaved themselves while there - one of my memories of going to Disney when I was 4 is that I misbehaved quite a lot in Cinderella's castle! Apparently my parents made lunch reservations for us well in advance and they thought I'd love it. But come lunchtime, I wasn't hungry and I just wanted to explore more and go on more rides. I did NOT want to eat regardless of the fact that it was in a castle (I wasn't a very princessy type girl anyway, I was a total tomboy). So I can remember thinking, maybe if I'm really BAD then we'll get to leave this stupid castle faster and I can go on more rides sooner! So I purposely threw the worst tantrum I could. My mom still has a photo of us in the castle, her gritting her teeth and smiling, and me frowning and looking like a horrible little brat. Ha ha! We can look back now and laugh, but I was so awful at the time. :p I hope your kids didn't pull a similar stunt.

Flower, how funny that several of us will be in the same area around the same time! That's it, I'm calling an informal real-life meeting of the Undiagnosed Club in Orlando in early November. If anybody else can/wants to meet up, you can be invited to my birthday party! If I can't have the party at the place I want to, then we'll meet up at Disney. Details to follow once I figure them out. :)

Thanks May for all the info! I have been to Disney once as an adult, about 6 years ago, but we actually went to the California one then. I'm not sure if there's much difference between the California & Florida parks or not, and I haven't been to any Disney park since I've been ill so I didn't care so much about safe foods or bathroom lines the last time I went to Disney. I have been to the Florida Disney as a youngster, I was a teenager the last time I went to that one so it's now been close to 20 years since I've been to Florida. So yeah, I'm just gathering details right now. My trip kind of hinges on whether or not I can go to the other place I mentioned for my birthday, so I will find out more about that soon.

How's everybody doing today? May, I hope the Xifaxan isn't losing effectiveness. :( Hopefully it's just post-vacation stress of getting back to regular life or something like that. Allie, haven't heard much from you lately, how are you doing? Are your meds working? I think you said on FB that your hubby is back now so I presume you're enjoying time with him so I totally understand you not being on the forum much! Star, how are you feeling today? I know you said you wouldn't say a word about the PET Scan unless/until it actually happens as you don't want to jinx your chances, but I've got my fingers crossed for you! Sunshine, how are you feeling today? Hopefully the laprascopy next week can get you feeling better! Flower, how's remicade going? Has the fistula healed more? How's anybody I may have missed? Big hugs to all!
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
936
ras96mg
R
C
Your thoughts, please. 10 yr old.
Replies
9
Views
509
Maya142
Maya142
N
Advice on diagnosis
Replies
1
Views
966
Scipio
Scipio
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top