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StaceyC96 said:
Hi all

well the MRI came back with no crohns detected in small bowel and biospy came back clear and nothing found in colon

im very confused as i still have all the symptoms and fell no better

the consultant wants me to go see a dietritian to check if its a food intolerence to do a exclustion diet, but there is not much food that dont effect me

i have been keeping a food anyway just to help myself and i have already excluded diary from my diet and still getting the symptoms

is this gonna take months to detect whats wrong as already had a colonoscopy and a MRI
Is there any other tests they can do to find out whats wrong with me

or is it all in my head !!!!!!!

as the pain the blood the bloating the sickness after i eat anything is not right

Thanks a million

Merry Christmas
Stacey
xxxx
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Don't lose hope. Have you had any stool tests done? That's where my inflammation is showing up but they can't find it on scopes etc. I don't think diagnosing these conditions is easy or straightforward at all!

In other news even though I have been feeling AMAZING the past couple of weeks, my latest calprotectin is even higher at 329. Which means it was
2009 - 90
Nov 2011 - negative (but on immunosuppressive therapy)
August 2012 - 227
Dec 2012 - 329

If any GI says this is ibs again I am going to flip out! :eek:
 
@stacey - im sorry you are still no closer to an answer :( have they suggested doing a pill cam?

Ive been really rough still.. and i lost it at work today.. :( practically told a customer to "eff off".. haha.. oh well.
just feel really nauseous and havent eaten much at all..

but i really hope you all have a wonderful day tomorrow :) xxx
 
Hey everyone I was just wondering how important is it for you all that we can put a name on our illness? Because I'm 10months undiagnosed and I have to say it seems important to me. Also wondering has anyone been put on treatment for nerve pain such as lyrica or amatriptaline? And do they even help? I've been on them both with no luck so far.
 
Hi all

How did everyone cope over the festive season (not that it's over yet... but I always find New Year far less of a hassle and stress than Xmas!)?

@Gabi - re: how important is it? For me not in a name per se, but how to deal with it in an effective manner would be much better. At the moment every day is a guessing game and it's that which really affects my life. I play my life around bathrooms and foods and worrying that either one of those is impacted by the other. Plus then there's the addition of other people to factor in. They do come second for me though I have to admit because if even my close family don't 'get it' then I'm over trying to explain. We live in a world dominated by labels of every nature, and so I think having a label or diagnosis makes it easier for other people to realise that there is something 'else' wrong - it's not just 'you'. Not sure if that makes sense, it's been a long few days!

My world has been a bit topsy turvy really. Xmas day initially went without a hitch. I was given the veg prep task... and then the entree task... and then finally cooking everything as my cousin was a bit too inebriated to do it. I had a few glasses of wine so was well on my way by the end of the evening not having eaten anything all day. As predicted, the fact I served myself on a tea plate rather than full portion didn't go unnoticed. I just explained that that's what I was comfortable with and then waited for the inevitable discussion about my eating habits. But they were a bit merry, so I wasn't too offended!

Boxing day was pretty chilled I guess... just recovering from various indulgences and having so many people over/to cater for/so much to clean up!

The 27th was the problem for me. I could not stop vomiting. To the point I must have been sick over 20 times and hit that bitter horrible bilious part of the stomach. Not good at all. Everyone was out all day and I chose to stay home, so THANKFULLY nobody had to deal with that delight. My stomach is still tender and couldn't cope with anything this morning - and amazingly there was still room for the big D. Considering I've eaten precious little all holiday I don't know where it's coming from.

Tomorrow morning I'm going to get all my bloods done and faecal spec tests so that should be... rivetting.

Anywho sorry for the long post. Hope you've all had a great holiday and santa brought you one or two nice surprises.

H :)
 
Thanks for ur reply Heather B. ur Xmas sounds exactly like mine a small amount of normality(if you can call it that!) then all hell breaks lose. I've also noticed I can not take fizzy drinks at all or I'm up all night on the loo/sounding like a trumpet out of a brass band for 24 hours! It's so embarrassing. Does anyone else have this problem? The insomnia is driving me crazy recently I can't rest so all my symptoms feel so much worse and sleeping tablets aren't really helping at all. My adrenaline seems to be pumping all the time with the pain andy head is racing over Doctors/being ill/undiagnosed. I feel like a mental patient!!
 
Aww you have my sympathy!

Yep fizzy = farts for me ;) haha that and a dose of gut-ache.

With regards to stressing about doctors, try not to. It seems patience is the key with this one as you just can't speed things up. It's all complicated and I guess better to be thorough and methodical rather than rushed and wrong. I'm not a patient person, never have been but I think over time it's worn me down to a state of just 'keep calm and carry on' - haha actually I got a mug with that on from my mum :). Plus, the adrenaline makes things worse I find. When I'm stressed it's unbearable... although not always controllable.

My cousin was stressing me out with their family dramas today and I ended up just saying 'look, I can't deal with this not because I don't care but because I'm not well myself and you're not the only ones to have things to deal with in life!'

Can't say I'm a sleeping pill expert, I've never taken one. Too scared not to wake up haha (irrational fear alert).

Whereabouts are you at in terms of testing and diagnosis etc? (Sorry if you've already gone into this - it's been a long few days!).

Heather :)
 
Hi All

hope your festive season was not too tramatic

i managed a small xmas dinner looked more like a toddlers dinner than a full grown adult

the cheese and cold meats was a BIG mistake was in agony all boxing day

so hubby went shopping and got a lactose free milk butter and cheese just so i could at least have some tea and a sandwich

yesterday was the first day with any dairy in my diet and still have pain and on the loo for ages

im just gonna go right back to basics with chicken rice mash water as there is no restbite from these symptoms

i think the stress of certain family members being inconsiderate idiots saying that am i crash dieting as i have lost a lot weight so quicky and if they cant find anything wrong with me as i just imaging it so in other words im a nutter that is wanting to be poorly and not eat or sleep and constantly rushing to loo just to loose weight and attention seek
not my style at all consisdering that non of my family really knew the full extent of my poorlyness as i have his it from them only my hubby mum and sis really knew

well as the old saying goes KEEP CALM AND CARRY ON and SOD EM!!!!

Thats my rant over thanks guys xxxxx

hope everyone eles is ok

and if anyone else needs a good rant im all eyes

stacey
xxxx
 
Aww stacey :( definitely sod the lot of 'em!
I really would recommend the low residue diet.. it worked wonders for my big D. removes high fibre stuff.. and no fruit or veg. Its quite boring.. but you can eat as much as you like lol

Good luck mrs x
 
just gonna go basic and boring

then after the new year im gonna be banging on my consultants door as this cant be just an intolerence but i at least want to try anything so i can show him that its not food intolerence that way
that would be 3 weeks then from when i last seen him

cheers hunni

have a good one

xxx
 
Definitely sounds like the right thing to do. Stops them from fobbing you off again.

on my way to visit family for new year (and my birthday) ;) lol j
just hope my body gives me a break.. as ive got cystitis now :(
 
Well in terms of testing I've had three colonoscopies 2 endoscopes MRI scan without contrast (which I hear renders it pointless but they couldn't fin a vein) CT scan with contrast capsual endoscopy (which ran out of battery!!) and a range of different blood tests which have shown up lack of proteins in the blood and excess Carbon dioxide. So far to them all this equals IBS even though I've severe weight loss, bleeding dehydration etc. I'm tryin to be patient but its so hard. I've to see a surgeon in the new year and hopefully he will do a laparoscopy of my abdomen and see what's going on there.
 
StaceyC96 said:
Hi All

hope your festive season was not too tramatic

i managed a small xmas dinner looked more like a toddlers dinner than a full grown adult

the cheese and cold meats was a BIG mistake was in agony all boxing day

so hubby went shopping and got a lactose free milk butter and cheese just so i could at least have some tea and a sandwich

yesterday was the first day with any dairy in my diet and still have pain and on the loo for ages

im just gonna go right back to basics with chicken rice mash water as there is no restbite from these symptoms

i think the stress of certain family members being inconsiderate idiots saying that am i crash dieting as i have lost a lot weight so quicky and if they cant find anything wrong with me as i just imaging it so in other words im a nutter that is wanting to be poorly and not eat or sleep and constantly rushing to loo just to loose weight and attention seek
not my style at all consisdering that non of my family really knew the full extent of my poorlyness as i have his it from them only my hubby mum and sis really knew

well as the old saying goes KEEP CALM AND CARRY ON and SOD EM!!!!

Thats my rant over thanks guys xxxxx

hope everyone eles is ok

and if anyone else needs a good rant im all eyes

stacey
xxxx
Click to expand...

I know it's no comfort but I have been there. When I was younger (about 16 or so) I used to work in my mum and dads shop on a Saturday. One day I couldn't make it in and my own mum told me to 'take some f*cking painkillers and get out of bed'. My whole family, husband and husbands family admit they thought I was making it up/trying it on until I was hospitalised last year. My mother in law in particular had to be very humble when she realised how sick I was. It sucks, I constantly feel like I'm letting people down but what else can you do. You have to be kind to yourself. I struggled on for months and months going out when I felt ill and it got me nowhere but an anxious wreck (thankyou CBT!!!!!) When I allowed myself to think, right I'm ill I need to take care of myself and rest, I felt a lot better. It's hard but try not to feel guilty.

Oh and I will also banging on my GI's door in the new year! Freakin IBS with rising calprotectin... Honestly, these GI's, I despair...

I have however been feeling pretty good lately, pred must be doing something again lol. Had about a 3 week stretch of being 95% pain/d free.
Had my first pain free Christmas of my adult life! :)

To anyone who has been on pred - did you feel horrendously tired when tapering? I have no energy, almost like feeling you're going to get the flu all the time and I have my suspicions it is pred related. I HOPE it is pred related anyway. I can't wait to get off this blasted drug, my weight is skyrocketing particularly since I'm feeling better and can eat again. It's a love/hate relationship!
 
ugh lsgs.. i do not envy you - i hated pred too. (though it worked great for my bowels)
i seem to remember being quite tired when coming off the pred.. but i deal with a lot of fatigue anyway..
how long until you're off it completely??
 
bozzylozzy said:
ugh lsgs.. i do not envy you - i hated pred too. (though it worked great for my bowels)
i seem to remember being quite tired when coming off the pred.. but i deal with a lot of fatigue anyway..
how long until you're off it completely??
Click to expand...

I'm off it completely in April if I stick to the 1mg pw taper they have me on. I'm feeling so good I think I'm going to go down a little quicker though and try to get off it quicker. I can't understand why the weight gain has come on so suddenly! I kind of wondered if now my body is actually absorbing food since I'm quite asymptomatic. Before I could literally eat what I wanted and lose weight. Now I'm gaining at like half a stone a week :O Need to put a stop to it.

My brain is so confused not having pain, honestly. It's so bizarre.
 
Forget the new year... IT'S MY BIRTHDAY!!!! and that's more important lol ;)
Hubby has got me a spa package :) he said i deserved some pampering after health issues and work issues this year. love him so much
 
Wow, this thread has been busy. I was so busy with the holidays, I checked in a couple times and skimmed the posts but didn't have a chance to post. I'll try to quickly catch up!

HAPPY BIRTHDAY BOZZY!!!!!!!!!!!! That spa package sounds lovely, have fun! I'm getting a massage tomorrow myself and it's been a long time since my last one so I'm really looking forward to it. :)

How was everyone's holidays? Personally I have decided that I just don't like the holidays! There's SO much tempting trigger food, so much stress, my sleep schedule gets all messed up and my eating schedule does too, I forget to take my psyllium with everything going on, etc. My guts were seriously not happy especially with the food! I actually had a plate of salad recently. What was I thinking?? It looked so good, and I thought maybe I'll just have a little and hopefully that won't hurt. Hah, so yeah, like an hour later I was crapping out undigested pieces of lettuce and was super crampy and just not feeling well at all. And my mother-in-law seems to make only xmas candy that contains nuts! I got around that though, I snuck some turtles and just sucked the chocolate and caramel off and spit the nuts out! :p And then at some point I decided that food was stupid and I stopped eating very much at all for a few days. I forgot that my guts get really unhappy for some weird reason when I don't eat enough, so I've been dealing with the repercussions of that for the past few days. Yuck! I did lose 5 lbs over the holidays which is not a good thing but I attribute it to all of the above, I don't think I'm flaring, just had a series of really bad food choices. I did manage to hit the gym a lot in spite of all this so I'm still doing something right! (Or wrong according to Bozzy, ha ha.) My stomach felt foul today but I hit the gym anyway and felt great - didn't even hardly reflux! And this is my 3rd gym day in a row, I did weights on Monday and cardio/yoga yesterday and weights today. I plan on cardio tomorrow and weights on Friday too so hopefully 5 days in a row! Wish me luck (or Bozzy, wish for a strait jacket for me!).

I hope everyone else survived the holidays? Anybody else have a really hard time avoiding food temptations?
 
Ok I need to vent so please ignore!! My doctor has suggested cognitive behavioural therapy for my so called IBS! I couldn't even believed he mentioned this. Although I know it's a fabulous method of controlling pain but I know I can't have IBS with my symptoms. I'm so sick of being told that its all into head and that I need to learn to relax and stop tensing my gut! If you knew me you would know I'm a pretty laid back person and when I first got these symptoms, which lead me to the ER, I had no stress my life was great now it's a mess so excuse me for being a bit stressed! The doc also refuses pain meds as he believes they will just get me addicted and make things worse. So I'm in agony 24/7 and this is awful. I even took my mum to see my doctor to see if hearing it from a different prospective would help at all but not really. I also find it hard to believe that I'm not the only one suffering- this is insane! It's 2013!!!! Should doctors not be more advanced!? I've begged for an abdominal laparoscopy but I don't think anyone will do it as they are afraid of adhesions etc. to new this risk is nothing compared to what my quality of life is t the minute, surely this would balance itself out!?
And exhale!!!
Thanks guys
 
Hi Gabi

so sorry to here that the docs are being so cruel to you

i have been told IBS or a Food Intolerence my response is IBS dont keep you up at night and am i intolerent to all bloody foods then

as i am now on excultion diet and even orange huice hurts me

im loosing weight at a rate of 2-3 lbs a week, all im eating is chicken and rice and ive gone all lactose free as well

how can they say to you its all in your head if all the symptoms point to CD, the docs are a joke they need to give you a colonoscopy and a MRI thats what they have given me and i came back with no Crohns detected in colon or small bowel, however they have not checked the stomach so a endoscopy is needed as all my symptoms point to CD as well and i dont have any meds or pain control too

i fell your pain hunni and i wish you well but go get a second opinon from a GI doc
also have you had blood tests as mine showed hign inflammation markers and low iron

feel free to rant when ever you need to everyone on here are lovely supportive and caring with a wealth of knowledge

keep us updated too

all the best
Stacey xx
 
Hi all

Happy new year - I hope 2013 brings people the answers they're desperately seeking.

My update is as follows:
I got a referral for blood tests to be done and fecal specs when the clinics reopened after new year. The doc wanted the results sat on her desk for the surgery re-opening on 7th Jan. I thought this would be simple enough so tripped down to the local Labtests place. In New Zealand all bloods are done by this one, private company. No GP service affiliated with the Uni and therefore my insurance will do them. I handed over my referral forms and passport, and was told I had to pay. I was shocked! I looked at the woman at the clinic and said 'no, I'm an international PhD student and my medical costs are all funded by the sponsor through studentsafe and vero insurance'. So she made a call to head office who said 'no' again. In the meantime I called my uni and spoke to the international support office and explained the situation and she said that everything is definitely covered by the university whilst I'm studying with them in NZ. I even gave my cell to the Labtest woman to speak to my uni support officer. Again, they came back and said no. I was nearly in tears through sheer frustration and said if that's the case and this is the only option to get blood tests in NZ what on earth am I meant to do?! I can't pay for over $500 bloods and then $250 fecal specs. It's just not possible - I'm on rubbish scholarship money and more to the point it IS covered as a part of my fees. She basically wasn't bothered and turned me away with a price list. I called their head office today and explained this and had a rude woman on the phone telling me 'no, you can't ask me those questions it's nothing to do with me - speak to your insurance'.

So now I'm between a rock and a hard place really. Nobody will listen so it looks like going back to the GP to explain the situation and why I haven't had tests done. Today I looked up the policy of the insurers online, and I AM definitely covered... so what's the problem?!!!

The stress of this has made things ten times worse - that and on NYE being taken to hospital for an iron transfusion because my iron levels were so low. Now I'm just upset. The woman also read my clinical details on the form and had the nerve to say 'are you sure it's not an eating disorder'. At that point, I just took my referral form and walked out. How insulting. I'm nearly 27 years old, I study human health and nutrition psychology and worked as a psychologist in the UK. I was astounded at the ignorance people show.

So, that's my update really. Not much action but a whole heap of drama keeping me dashing back and forth to the loo through added stress.

I hope others have had more success. I thought it was too good to be true that the GP cared - it's the crappy beaurocracy in NZ that are slowing things down now. I've never been to a clinic and felt so humiliated and mortified!

Heather
 
Hey All,

I've been in A&E today due to the pain they thought were gallstones, but today they think it is a stomach ulcer!

Has anyone been told this before?
 
Heather, that's awful. I hope somehow you can get things worked out so that you can get the tests with minimal further stress. I've heard people in the UK mention having a patient advocate help them out with stuff like this - I don't suppose there's anything like that in NZ? I'm in the US so don't know much about either system unfortunately so I can't be of much help. But I've got my fingers crossed for you and am hoping things will work out. In the meantime, hang in there!

Scopey, I had a terrible bout of gastritis once that the doctors thought it might be my gallbladder going haywire. They did an ultrasound of my gallbladder, liver, stomach and found nothing wrong with my gallbladder so ruled it as being gastritis. I haven't had actual stomach ulcers though, just inflammation from the gastritis. But the gastritis I had was so bad that it turned my stools very pale which apparently is a sign of gall bladder issues which is why they ordered the ultrasound. Anyway, I know that's not very helpful, but I hope they can figure out what's going on with you! If they do an endoscopy to look at the potential ulcer, make sure they take biopsies. An ulcer could be from something like Crohn's or it could be from a bacteria like H Pylori so they should really try to find the cause of it. Good luck and feel better soon!

Gabi, it sounds like you need to seek out a second opinion from another doctor as it sounds like this doc is not taking you seriously. Any doctor who offers psychotherapy to someone who is obviously suffering from a legitimate physical illness is not a good doc. Is this your GP or GI? Either way, find a new one! Good luck dear, I hope you can find someone who is willing to actually look for the cause of your illness and treat you accordingly.

Stacey, orange juice hurts me too. It's really acidic which can feel like burning in the stomach/intestines especially if they're inflamed or ulcerated, etc. Are you doing okay just eating chicken & rice? Are you going to try adding other foods back in to your diet? Is there anything you can eat that doesn't cause added pain or symptoms? Personally my go-to food in a flare is mac & cheese (the kind in a box with the fake cheese powder stuff - I can't do real cheese in a flare but I can do fake cheese). Mashed potatoes (no skins) are good too, very easy on my tummy. Anyway, good luck, I hope you can figure out some of your food triggers, if you have any.

As for me, I did a little experiment recently. As some of you may recall, I used to eat a lot of bananas but they made my GERD worse and I would get banana-y vurps, so I stopped eating bananas. I was off of them for something like 6 months. I recently tried eating them again, starting very slowly. I was doing okay with like 1 or 2 bananas per week. But yesterday I was hungry and I had 2 bananas in one day. PAIN! My stomach was not happy at all with that and I've been downing antacids ever since. I'm mostly better today but won't be doing bananas like that again! It's so weird that bananas make my stomach so mad (not the guts, my actual stomach - it felt somewhat like gastritis pain and was above my belly button so definitely in the stomach and not in the intestines). I'm so special, I can't handle one of the blandest foods ever, ha ha. :p
 
thankyou everybody for your lovely birthday wishes, i had a great time :)

cat - you're an adult - im not gonna give you anymore grief for going to the gym.. just dont come crying to me if it all goes pete tong ;) lol!!!

gabi - i cant believe they wont give you pain meds - just "in case" you become addicted... blumming nora. i feel so angry for you! and dont even get me started on the whole CBT.. :hug:

heatherb - thats absolutely shocking, how you were treated! what do you think you're gonna do now?? im so sorry that happened, and fingers crossed they pul their fingers out their @rse and sort it out

scopey - please keep us updated on your situation, i hope they can give you some treatment that works. xx


forgot to add my update!!! lol..
well that blumming rash is still here. im itching like crazy at night across my breasts, armpits, arms, palms of my hands, stomach and soles of my feet!
the rash is only apparent in the evening.. GP gave me stronger antihistamines before xmas.. which havent worked. so theyve given me more meds today. saying if it doesnt go away in the next 7 days to go back and see them.

grrr! ive lost weight (6lbs) over xmas :( with nausea and loose stools.
the inside of my right nostril is red raw and incredibly sore :(

boo!
 
Ha ha Bozzy, I don't mind you joking around with me about the gym, I am pretty sure that at this point I've got a serious addiction to exercise and I probably need some sort of mental help (CBT???). :p I already managed 5 gym days this week, I went every day Mon-Fri. Tomorrow's probably a rest day although I'm tempted to sneak in a bit of yoga, and I'm not sure yet about Sunday. So I could feasibly make this a full 7 days in a row of exercise... I definitely need mental help! ;)

Those rashes sound awful. I hope the new meds work. Do they think the rashes are possibly related to your existing illness, or is this something new? I lost weight over the holidays too, about 5 lbs for me, so I can totally relate to that. My body hated the holiday food, the stress, etc. I hope you feel better soon!
 
I have been struggling with diarrhea for over a year and a half, in fact in that time I can count on one hand the number of even somewhat sold bowel movements I've had! I kept going to my GP and they kept sending me for blood tests and stool samples and here try this med for IBS. Which only made my symptoms worse. This continued until about two weeks before Christmas I started to bleed profusely from my rectum and ended up in hospital in critical care for a week and general care for another half a week. While in hospital they did a colonoscopy, but I was so inflamed that they could only go half way through my colon. They did an enhanced ct and tons of blood work. I had 5 GI drs and 5 IBD specialists all of a sudden as well as 2 dietitians. Holy attention all of a sudden. This is when I learned that I have either Crohn's Disease or ulcerative colitis. I also learned that my migraines (diagnosed as chronic when I was 9) and my restless legs and "arthritis" are all symptoms that can be associated with IBD. When I was released from the hospital the head of the IBD team said her office would be in contact to follow up and set up another colonoscopy that would hopefully be able to show the whole picture. After 2 weeks of being out I called her office and asked what was happening and that I really want an appointment to talk about side effects of my drugs and my serious lack of appetite. I was informed by the receptionist that my case hadn't made it from the hospital to the clinic (5th floor to the 1st floor of the same building but different wing) and that they couldn't set anything up until a nurse from the clinic has had time to review the file and to check with the dr about the need of a colonoscopy.

My GP is useless and I was told by every dr I saw in the hospital to find a new one, which is damn near impossible and have no other dr to talk to. Stuck between a rock and a hard place and still losing too much weight too fast! Granted I definitely could use some weight loss but preferably in a healthy way!!!
 
Hey guys thanks for your posts. I fell down the stairs yesterday-I think it's cause I'm limping with the pain- clearly this didn't help the pain and nearly dislocated my shoulder. I fell so old as I have to sit down to wash in the shower, I need help into bed and all this started before I feel down the stairs. I've an awful rash on my face kinda looks like a butterfly rash so they might test me for lupus but every time I go to the doctors it's gone! It seems that IBD doesn't come alone :/
I can keep the weight on to a certain extent with calorie drinks from the health food store however they aren't the easiest to keep down.
This entire thing feels like a never ending nightmare.
 
Hope you're OK gabi!

So far today has been 7 trips to the loo and it's 9pm. Considering I was too fatigued to get up until 2 that's not really fantastic I reckon.

Still no joy with the lovely insurance people so I'll have to wait till Monday to argue the toss with the medical company. I printed a copy of the terms and conditions of international student cover though, and as far as I can see it's rather airtight.

In the mean time I'm gonna take it easy.

bozzylozzy hope you're ok! rashes are no fun but I'm glad you had a good bday.

Best wishes to all :)

H :)
 
Hi Alberta_sweetie, how frustrating to be so close to a diagnosis and yet still stuck in limbo. I hope you can get definite answers soon so that you can get some treatment and feel better. And for what it's worth, I started getting migraines when this gut illness hit me too and I also developed arthritis about a year into my illness (right hip) so I feel for you! Have they done anything about your arthritis? My GP sent me to physical therapy and it helped a lot. It still aches sometimes in cold weather though and it's aching just a little bit today so I know it'll never be 100% better. Anyway, good luck and I hope you get that diagnosis soon! Keep on your doctors to get their act together!

Gabi, that rash you described definitely is a hallmark symptom of lupus so I'm glad you're going to get it looked into. You can have a blood test to check for lupus - I had that blood test myself and it was negative for me but it was really easy to do. Good luck with it. As for the supplement drinks, have you tried different flavors? For some reason different flavors affect me differently. We have ones here called Ensure, and I can usually do the chocolate flavor just fine and keep it down easily, but for whatever reason the vanilla flavor goes right through me and doesn't make me feel very well. So experiment with different types/flavors as it seems some are easier on the tummy than others.

I'm supposed to go to a housewarming party today and I'm not looking forward to it. The people whose house it is are smokers and cigarette smoke always makes me feel so sick so I don't know how long I will be able to stand being there. The weather is supposed to be bad (freezing rain and ice pellets) so I'm hoping I can use that as an excuse not to go since they live about an hour away and obviously I don't want to drive that far in bad weather. Ugh. Wish me luck!
 
Hey everyone! I hope everyone survived the holiday season alright.

Welcome to all our new members, sorry you had to join us here but this group is an amazing place to come for support. Not having a name for why you are sick can be SO stressful! We all here try and keep each other going. :)

Stacey, I'm so sorry you have been told IBS like so many others. If you don't like your doctors, it's time to move to someone else. I know changing doctors often can be really stressful and nerve racking, but if your doctor isn't going to help you it is time to find someone who will. Granted, I have had doctors in the past say IBS, then see my ulcers eat through my tongue and change their mind, and I was glad I stuck with them....but it still did not get me a diagnosis because my GI had no knowledge or education on my disease. So, moving on to a doctor who knew about my disease was required, else I would never get treatment despite how sick I was.

I'm not doing well. :( They definitely did not put me on enough prednisone. I spent my Christmas vacation in a ton of pain. What was worse was my parents had traveled 5000 miles to be here, and I was too sick to take them around Germany. heck, I was too sick to even go out to dinner. :( I almost ended up in the hospital the night before we were suppose to travel to Prague, so the trip got cancelled....we had already paid for the hotel and it was no refundable. :( So I feel terrible about the whole thing.

I'm actually really worried about my illness right now...I felt I had a good handle on this when I got diagnosed, but the more Behcets patients I talk to, the more I realize how bad my disease has damaged my body. Other Behcets patients don't have the kind of organ involvement I do...and most are shocked Im on so little pred and that my doctor doesn't want to see me for 4 months. :( Then I read in a medical journal that the prognosis of Behcets gets much worse once the Behcets attacks the intestines like IBD. It didn't have any solid statistics, but Im still worried. My heart is still not getting enough blood, which is called an angina, so Im still very close to having a heart attack. Am I going to need to go on chemo to nip this in the bud? Why wasn't my rhuemy more concerns when I was in his office after my hospital stay with these severe chest pains? :( I'm going to call him on Monday....I need more help then this!!! :(

Other than the chest pain everything else is still just as bad....still have ulcers in my mouth, rash has spread to both legs, and my knees are now extremely inflamed. It was awful, one night last week I was crocheting with my legs crisscrossed for a few hours, and I forgot that that position makes my knees too stiff to move. Well, my husband tried to straighten them out for me and the pain was unbearable. He made me sit with my legs out straight and it felt like knives were going into both knees, and they haven't stopped hurting or swelling up since. I couldn't walk for two days, I felt like such a failure. :( I can walk now but my knees are constantly hurting. Add in chronic fatigue, abdominal pain, and arthritis in my wrists and I feel like there is no part of my body that isn't under attack....*sigh*
 
Cat-a-Tonic said:
Hi Alberta_sweetie, how frustrating to be so close to a diagnosis and yet still stuck in limbo. I hope you can get definite answers soon so that you can get some treatment and feel better. And for what it's worth, I started getting migraines when this gut illness hit me too and I also developed arthritis about a year into my illness (right hip) so I feel for you! Have they done anything about your arthritis? My GP sent me to physical therapy and it helped a lot. It still aches sometimes in cold weather though and it's aching just a little bit today so I know it'll never be 100% better. Anyway, good luck and I hope you get that diagnosis soon! Keep on your doctors to get their act together!

Gabi, that rash you described definitely is a hallmark symptom of lupus so I'm glad you're going to get it looked into. You can have a blood test to check for lupus - I had that blood test myself and it was negative for me but it was really easy to do. Good luck with it. As for the supplement drinks, have you tried different flavors? For some reason different flavors affect me differently. We have ones here called Ensure, and I can usually do the chocolate flavor just fine and keep it down easily, but for whatever reason the vanilla flavor goes right through me and doesn't make me feel very well. So experiment with different types/flavors as it seems some are easier on the tummy than others.

I'm supposed to go to a housewarming party today and I'm not looking forward to it. The people whose house it is are smokers and cigarette smoke always makes me feel so sick so I don't know how long I will be able to stand being there. The weather is supposed to be bad (freezing rain and ice pellets) so I'm hoping I can use that as an excuse not to go since they live about an hour away and obviously I don't want to drive that far in bad weather. Ugh. Wish me luck!
Click to expand...

No they haven't done anything for my arthritis, they had been threatening to do knee replacement about 12 years ago when I was 16, but I refused based on having to replace them every ten years and then would have to have them fused at the age of 46, because you can only replace them so many times. I just live with the pain, ice and pain killers. I have been looking for a new GP since I got out of the hospital but they are in serious short supply here in Edmonton. Probably everywhere. I have noticed that the arthritis is the one thing not bothering me since I got out of the hospital, but I think that's due to being on 3 different steroids at the moment.

Good luck with the house warming party, if you go.
 
Hope everyone is doing well! I've had a busy couple of weeks with the holidays and getting back to work, but Friday I drove to Boston to see a specialist at one of the hospitals for a second opinion on what's going on with my stomach. I was anxious to get another opinion, but the whole appointment was pretty much a wash. I got the appointment on short notice, and my doctor hadn't sent my records over to the hospital yet. Basically, I had to give the specialist an oral history of what had happened, and admittedly, I didn't do a great job. It was really hard to remember a lot of what had happened, between being sick and all the medications I've been on.

Anyway, I can't say I was a huge fan of the specialist. He was really dismissive and told me he thought I was just experiencing the lingering symptoms of an infection. He discouraged me from any further testing, even though I have an MRE and an endoscopy scheduled for this month.

It's not that I think he's wrong - in fact, I hope he's right. He just gave off this vibe like I wasn't sick enough for him to be worried about. As a result, I felt very uncomfortable talking to him. In the end, he said I should keep my MRE appointment but seemed wary of the endoscopy. He's going to get back to me after reviewing my records. All in all, it felt pretty frustrating and pointless.

As for how I'm feeling, I'm currently done with all my medications and still having a lot of pain in my lower right abdomen. I'm also having pain in my lower left abdomen now. Everything else seems pretty ok. I'm back to faithfully tracking my pain with the GI Monitor app on my iPhone. We'll see what happens, I suppose!
 
Theseithakas, for what it's worth, being off of all meds will hopefully mean that you'll get a result on the MRE or endoscopy. I know it sucks but hang in there, and good luck with those tests. Don't let this new doctor put you off, definitely have the tests no matter what this guy says. You said it yourself, he was dismissive and made you feel uncomfortable - go with your gut feeling (no pun intended) and have those tests! I haven't had an MRE myself but I had an MRI of my liver awhile back. My advice for any type of MRI - dress warmly! They blew freezing air through the machine while I had mine and I was wearing a sweater and sweatpants and slippers but I was still freezing. As for the endoscopy, that should be a pretty easy one. I've had 2 of them now, one was just a couple months ago, and they were both super easy. The drugs knocked me out and I don't remember a thing, it was just like having a nice nap. Make sure they take biopsies of course - if nothing else, they can at least confirm or rule out celiac disease from the biopsies. Good luck!

So, I went to the housewarming party. I only knew a couple other people there and they were only like a daughter and a sister of a friend, I don't know them well at all, so I ended up sitting and watching a movie while everybody else chit-chatted and ate party food. I am so terrible in social situations and it's like 10x worse if I don't really know anyone there. I have mentioned this before but I suspect I might have Asperger's as I fit a lot of the criteria. I just freeze up at parties, it's terrible. I hate making eye contact and I am pretty clueless even at small talk so I just sorta get overwhelmed and retreat into my shell, and the whole thing puts me into a bad mood because I just want to be at home by myself. I'm sure everyone thinks I'm just a b**** but it's more like my brain short-circuits and I default into b**** mode as a defense mechanism or something. Meanwhile my hubby is like a total extrovert and he can eat anything (my polar opposite!) so he was eating, chatting, having fun. It sucked for me but we were only there for a couple hours and then it started snowing so fortunately I got to use the "we have to get home before the weather gets worse" excuse. Oh, but I got to avoid cigarette smoke at least - I guess the wife has forbidden the husband from smoking in the new place (he still smokes but has to go outside), so at least I didn't get sick from cigarette smoke at this party - phew!
 
*sigh* major rant coming up

I'm currently on holiday. About a year ago I booked a skiing holiday (what was I thinking?!) and now I am too scared to do anything. Last night I had a horrendous episode of reflux which has left me scared to eat or do anything for fear it will happen when I'm out and about. My hips and knees and back are flaring too and it's sore walking never mind skiing! My husband and his family are away doing nighttime tobogganing and here I am, sitting in the apartment watching a movie. My guts have been great but the anxiety of coming here (I think) has kicked things off. 3 or 4 times a night I am waking up sweating with pain in my guts which I can't even ease with diarrhea because it's just not happening, I know that should be a good thing but it seems to make the pain worse almost. This in turn makes me insanely tired to a level my husband can't understand. It's a constant battle between what I want to do and what I feel capable of. I can't accept that this what my
life has deteriorated into. I feel so bad I am affecting my husbands quality of life. I can see clear as day how much this affects me mentally as well as physically at the moment and I don't know what to do. For the past 6 months I have been getting more and more withdrawn and depressed and I don't pull out of it like now when I'm feeling relatively okay. I still stay scared and I don't know how to get past that. I am increasingly irritable although that could be pred and I don't feel like myself.

On the other hand I am so mad because I blame my doctors! I appreciate this disease is so difficult to diagnose and I wouldn't like to be in their shoes but they have left my pain and symptoms untreated for so long, preferring to deny it was happening even when I was in hospital being told I was in early organ failure from weight loss! They should have helped me, if they had I might not be in the mess I am now and that makes me so mad. They should have given me painkillers long before now. Even when I tell the doctors they don't work, they don't care. They don't listen. I don't even bother telling my doctors everything that's going on for fear of being labelled hypochondriac/anxious.

My GI doctor now has changed his mind and says I have ibd again (suspected small bowel crohns) and says I need an MRE urgently but on the nhs waiting list it's 6 months! Then I might need a pillcam if the MRE doesn't show anything. Then meds take 3 months to kick in and they might not even work. And they still have to find the ibd on the scans which isn't guaranteed. My calprotectin is going up and up as the steroids go down which indicates to him it's ibd, and also the level indicates its in the small bowel rather than the colon which makes no sense why we just paid £2500 for a colonoscopy!!! And if I want the MRE done privately I need to find £500 :( the doctor is telling me its urgent yet the nhs cant provide my test for 6 months. its just rubbish. And he says if i start treatment now as my rheumatologist wants to I'll never get my diagnosis and proper treatment. And on top of this I need to decide what GI I'm going to go with now, and it's proving to be a decision weighing heavily on me cause if I make the wrong choice it could be costly :( I'm also feeling quite scared by the concept of getting closer to diagnosis and worrying about what the future holds.

Sick of hospitals, doctors, pills, letting people down, having a crap quality of life. I can't be the only one who thinks it would be easier to just not wake up in the morning :(

Sorry for the rant but I am just feeling really down and frustrated and didnt know where else to go :(
 
lsgs, oh you poor thing. :( Big hugs to you first of all!! Second of all, if I read that right, it sounds like your doctor might be willing to put you on some sort of treatment now in spite of another doc saying "you'll never get diagnosed this way"? That is the route I took, I opted for treatment instead of further tests because my GI just didn't feel we were getting anywhere with all the tests, and he knew I responded well to steroids (I agreed with him on both counts, I was getting nowhere and I respond great to steroids). Yes, I'm still undiagnosed, but I took the treatment and I've been in remission for something like 2 years now, and life is so much better. And to me, it sounds like you need treatment NOW before things get any worse, so if it's an option go pester that doctor for some treatment! That one doctor saying you'll never get diagnosed, that's frankly BS. Many of us here have tried various treatments and haven't given up hope for diagnosis. I know that if/when I flare up again, I'll opt for another round of tests. I know it's not even remotely likely that I'll be in remission forever so I'll get a name for the monster eventually. In the meantime I'm just trying to enjoy myself while the monster is asleep. It sounds like your monster needs a nice long nap too.

I really feel for you, hun. I was there myself - not quite as bad as you described, my organs weren't failing (as far as I know). But I was sick for a long time too and I went through those thoughts and feelings, like I'm holding my hubby back from the life he/we should be having, like I'm a burden to everyone, I ruin everything, I wish this illness would just kill me already so I don't have to do it myself. I was in a really dark place for a long time and I did think about ending my life. In spite of having such wonderful support here on the forum, it felt like nobody "in real life" really understood (I did have a friend for awhile who said she had Crohn's, but it turned out she was a pathological liar/attention seeker who does not actually have IBD so that really messed with my head too!). I know we're just words on a computer screen, but really honestly I get it and I feel so much for you. Seriously I'm at work and about to cry. I have been there. You need to get some type of IBD-appropriate treatment, it can make all the difference in the world. It made all the difference to me, I rarely get depressed these days (and when I do, I am well enough to hit the gym and cure my depression with good old fashioned exercise). I don't have those thoughts anymore. I am not a burden. And you're not either, no matter what those thoughts say. Sending you a big virtual hug and hoping things get much better really soon! Please keep us posted, okay? Worried about you. And don't ever apologize about ranting or venting on here, that's what we're here for!
 
Isgs - so sorry to hear you're having such a rough ride at the moment. The doctor shouldn't be saying things like you'll never get diagnosed. It's their job to make sure that you do and that your quality of life improves. I think it is important you tell your doctor everything, even if you're sick of repeating the same thing over and over. I'm by no stretch of the imagination an expert in this area... I'm very new to it myself although been dealing with increasingly worsening symptoms over the years so that now I'm at the point where I just frankly can't ignore it. As a 16 year old they were happy to slap an 'eating disorder' label on the fact I'd lost lots of weight - after that I just didn't go back because it was far too hurtful to not be taken seriously. As a consequence, I'm here a decade later on the other side of the world dealing with an alarming array of problems. I guess my point is try to tell them everything and don't back down. Thinking back when my dad was terminally ill I fought tooth and nail for him to get every life-prolonging/palliative treatment available; but yet haven't had the confidence to do it with my own health. Life is too short, so don't worry if they label you anxious. Who wouldn't be anxious in that situation?

I'm from the UK originally so know what you mean about the system being very slow. However, being in NZ where everything is private is far worse now I've experienced it - I'd rather have a slow NHS than no NHS at all! Is there no way you can hurry things up? If your doctor has said it's urgent, maybe try again to push for one sooner. It can be done as my mum has to have a colonoscopy on 14th Jan and she was initially referred for one about 8 weeks ago and this is all through the NHS. Don't be afraid to stamp your feet. Sometimes it's the only way!

I do really hope you manage to find some answers. With regards to your mood and feeling more and more depressed, like cat-a-tonic said exercise is great for both body and mind. Even if it's just a leisurely stroll in the park. Getting out into the fresh air is quite soothing. Treat yourself to things that you enjoy doing - you don't have to worry that you're a burden. We're all burdens on each other in different ways I'm sure! Chin up and I hope things look a little brighter in the morning.

My update is as follows:
Went back to the GP today, as the Labtests woman asked me to go and see her to see which tests were 'absolutely necessary'. The GP was pretty mad with this because she doesn't want to remove any from the referral form purely because my insurance are kicking off about it. Afterwards she said I have to pay and they'll reimburse me... but that's just not feasible in my situation. In the end she said just do the fecal specs and do one test at a time as and when I can afford them (!).

I went to the office feeling pretty glum but did some work and then came home when I felt tired. I'd not eaten much in 48 hours as I knew I had to go to the doctors and if I ate I'd be attached to the toilet for an indeterminate amount of time. Anyway after a rest I thought 'sod this there must be a way around it'. So I called the insurer direct and explained the problem and that I'm an international student and this really does need to be done. The doc still wants to refer me to a GI, but she needs an initial set of tests doing. After 5 minutes explaining, the woman at the insurance said that was absolutely fine. All I needed to do was fill in a pre-approval form and send them a letter from the GP asking why she wanted these tests doing together with the referral letter itself and they'd put it through as an emergency request. HALLELUJAH!

So hopefully tomorrow I can get the GP letter, send the documents and in the next few days have my bloods/fecal screens done and get the ball rolling in some sort of direction. I was so irritated with the University though for being so uncaring and just not knowing how to deal with situations like this. They really need to get better with dealing with international students here, as you really have to fend for yourself! Not ideal when it comes to being ill.

Anyway that's my update/rant over with for now. I hope everyone is doing OK. Allie I'm really sorry to hear that you're not feeling great at the moment and the pred is not enough, together with all the other complications. Where do you go from here?

Heather :)
 
Hi folks, sorry to see many of us doing badly, me included :(

Saw my new Rheumy today, result is no more tests, nothing else to test for (thanks a bunch London) so it's CBT therapy, carry on with painkillers/lopermide and go back in 6 months.

I did not like the Dr, apparently I cannot contact him direct if things get worse I need to go through my GP!! He was kind enough to look away when I cried and give me time to compose myself but he seemed impatient with it, no compassion. I was told by my previous Rheumy not to expect and hand holding from him, but I didn't realise that meant no compassion.

I guess I will see what he says in 6 months after the CBT fails (if I get it/complete it in that time), but it looks like I will be asking for a referral elsewhere, maybe addenbrookes, I just don't know. Pretty sure I will ask for another Rheumy at local too.

Getting over a virus so feeling really crappy, of course it went through my guts too, and after eating crisps Sunday, nothing yesterday and a little bread today, I am empty but still not very hungry which is worrying!

And by the way I have a couple friends being very evangelical about exercise/health eating and they are losing weight, well I would love to lose weight but cannot do much of what they are doing, they don't seem to consider that when they preach/brag :( Would love to be doing the amount of exercise my cousin in doing but considering I only have energy to get dressed 2 days a week if I am lucky...
 
Oh star, thats awful :( i really wish there was something we could do to help...?
Maybe asking to see a different rheumy might not be a bad idea.
i think we can all vouch for the whole exercise thing... people dont understand that its a different level/kind of fatigue that normal people are used to.

unless you're called cat and have an unhealthy obsession with the gym ;) haha

@alberta - welcome to the gang! I cant believe they lost your referral?!? And you are so close to your diagnosis and treatment.. it must be so frustrating having to jump through hoops as its just dangling in front of you. please let us know how you get on xx

@cat - that house party didnt sound fun.. its horrible to feel like you're all alone.. im a bit like your husband and can chit chat with most people.. but i am really critical of myself and constantly worry that people dont like me. i even worry about those people i dont care about and what they think of me! And its snowballs.. so when im depressed, i think nobody likes me etc.. :(

@lsgs - you really are stuck between a rock and a hard place :( same as star - i really wish i could offer any help or advice. but i dont know what to say :( :hug:
 
@heather - im so glad you are getting somewhere (slowly but surely) towards getting the blood tests done! Did they say how long it would take?

As for me.. im on stronger antihistamines - Atarax - and boy is it wiping me out! Im overjoyed that the rash and itching has stopped.. but its making me so tired lol.. we can never have our cake and eat it can we??

My next rheumy appt is 24th january.. he said he was going to start me on some meds if my injection trial worked (which it did!!) So will see what he says.. my bowels are doing better. but my right hip and knee are playing up.

@stacey - how is the diet change going?
 
Hey Bozzylozzy

The diet change is better but still having the symptoms just not as bad

im back at the Dr for more blood tests on Thursday as im loosing weight at about 2-3lbs a weeks lost 20lbs so far so abit worried about that

the basic diet is ok but tough i tried some oven chips and a couple of fish fingers and that was a very bad move as i was in pain almost straight after so wont be doing that again the soups and the steamed chicken and rice is ok

im finding it hard to be so pleasent when people comment on my weight loss they are like "you look great" " half the woman" but i feel like crap so i just have to say cheers and say that my secret is not eating that much and crapping through eye of a needle

ill be giving my DR some grief on Thurs for some answers see what my bloods come back with

hows you hunni
xxx
 
Its awful... you'd rather keep the weight and be healthy than this alternative!

Meh im ok.. just the usual.. feel like im coming down with some kind of winter bug. sore throat and achiness. bleurgh! Lol
 
just gonna a let out a little cry...
hubby came home from work and said i could go have a bath/rest whilst he gives our little 'un some dinner.

i went upstairs and looked in the mirror - only to find im probably getting tonsillitis... again!!! :( :( :( *plays violin* lol
i hate tonsillitis with a passion and last time i ended up in hospital!.. guess ill have to call my GP in the morning..
 
Heather, that's great that it sounds like you're finally getting somewhere with the insurance people! Keep us posted on what tests you have and what the results are. Fingers crossed that it at least points you in the direction of a diagnosis!

Star, that's awful. Can you not request a transfer to another rheumy & hospital while skipping the CBT stuff? Or are you set on doing CBT just to prove that it doesn't work and it isn't all in your head? As for exercise, I know I'm a bit of a mad woman when it comes to this subject. But it has seriously done me SO much good. Yesterday I was afraid I was coming down with a cold or the flu. I started coughing a lot. I went to the gym anyway, I did my usual thing, and - no more cough! I am still afraid I might get the flu, as a lot of coworkers are sick with it but many of them came in to work anyway (what is wrong with people???) so I've probably been exposed. Anyway, I'm getting off track. I know you can't do much, and with exercise you really have to want to do it - but if you're interested, I remember that David had posted a thread awhile back about a very gentle yoga routine. Even in a flare I could probably do something like this. If you could very gently stretch and strengthen your body, it might make you feel a lot better. Here's the link to that thread:
http://www.crohnsforum.com/showthread.php?t=28108&highlight=yoga

And please, don't look at what others are doing, and don't think of exercise as purely being about weight loss. That's not why I do it at all. I know my body is very different from the average person so I don't look at what other people are doing in the gym - it matters nothing to me if others are fitter or fatter than I am or if they can do more reps or lift heavier weights, etc. I do my own thing and take care of myself, period. And it's not about weight loss, nor looking better, etc. For me it is 100% about health. I know I'm ill and I'll probably be ill forever unless they make some massive steps forward with stem cells or whatever in my lifetime. So I need to make my body as strong as it can be, so that I am capable of fighting my illness with everything I've got. I am not a very good fighter when I'm weak and have no muscle mass and can't even go down the stairs without needing to sit for 10 minutes and catch my breath. For me, working out is all about being the best illness fighter I can be. I've said this before, maybe not in this thread, but it's visceral to me - every rep on the weight machines I do, I feel like I'm punching IBD in the face. It's rewarding and it always feels amazing. And I feel like I have to work out because the alternative is letting IBD get the upper hand again, and I can't let that happen intentionally. This is why I'm crazy like I am, because I'm literally fighting every day. And (I hope that) I'm getting a little bit healthier every day, getting a little bit more of the upper hand. Yes, it's awesome that I'm looking more toned and that I look strong on the outside - but the outside is superficial and what really matters is how strong and healthy I'm becoming inside. That's the main goal, the rest is just icing on the cake really.

Sorry, that was a long rant. But I hope it made sense. And Bozzy, you mentioned the fatigue - I have noticed that working out actually gives me a lot of energy now. I could be feeling dead tired & fatigued, but if I make myself go work out anyway, I feel so much better afterwards. Maybe it's a remission thing, I don't know for sure if it would have the same energizing effect in a flare. But maybe give that gentle yoga thing a try too and see how you do. As a member of the bad joints/overly bendy joints club, I can attest that I have never had trouble with yoga. It has never upset my guts nor my joints. And yes, I have done yoga on ocassion back before I hit remission, and it never gave me trouble back then either.

Okay, seriously rant over this time. :p How's everybody else doing? I'm okay for now, like I said just trying to avoid the flu. Going to hit the gym again today and do some cardio to give my lungs a workout, hopefully that'll expel any germs that are lurking in there. ;) I don't know if it actually works that way but it seems like a good plan to me, ha ha.
 
I think I missed these newer posts, it flipped over to a new page and I didn't notice. :p

Bozzy, oh no! I haven't had tonsillitis myself but it sounds awful. :( I hope your GP can get you feeling better quickly and that you can avoid the hospital. Keep us posted, got my fingers crossed for you that it's not too bad this time around.

Stacey, I feel for you, I lost a lot of weight unintentionally when I was really ill too. (I've gained it all back plus a little extra, ha ha - I was at 136 lbs before I got ill, then I dropped down to about 115 at my lowest point during my illness, and now I'm at about 139 but I'm more muscle and less flab than when I was at 136). People can be so cruel and they think mentioning your weight loss is a compliment, but it's not. I felt like a failure when people would mention my weight loss, I was failing at something so basic like keeping weight on me. And it was one of the only obvious outward signs that I was ill so I really didn't like people bringing it up. So I feel for you - most people want to lose weight I suppose, but if they only knew what we go through, they'd be content to be fat and healthy. Hang in there and good luck on Thursday!
 
i can totally see where you are coming from with the fatigue and exercise thing. when i used to do aqua aerobics, it helped me a lot with that. its like a jinx for me - everytime i try to do any form of exercise - i end up in hospital!
(lol although not caused by the exercise... just a running joke for me haha) ;)
 
Bozzy, I can see why that would put you off then! And I hope you don't end up in the hospital because of the tonsillitis. But I'm glad you did get some benefits from exercise. If you do decide to start exercising again, just start small and slowly, ease into it. When I first started working out, I really wanted to just go nuts with it and do it all the time. But I knew I had better start slowly or I would regret it. So I started off 2x per week, lifting very light weights. I wasn't sure how that would affect me, but it went really well so then after a couple months I moved up to 3x per week and gradually made the weights heavier. Now I'm at 5x per week (3x weights and 2x cardio). If I had just jumped in at 5x per week I'd probably end up in the hospital too! :p Seriously though, if you try exercise again, really ease into it and listen to your body. If something hurts, don't do that (example: I can't jog because my arthritis starts screaming at me). And enjoy it - in spite of illness, there's really not a lot we can't do that healthy people can, honestly. We just have to work harder for it, but the rewards of it seem more rewarding too. I work hard every day and I'm rewarded with health and energy, which I would have just taken for granted before I knew what it was to be chronically ill. I never used to enjoy exercise before I became ill - I enjoy it like crazy now. :D
 
Thanks Cat, I will do the CBT to prove it doesn't work, and take the next 6 months thinking very seriously about what to do next.

I did get a "chair workout" dvd, but so much is for arms so no good for me with my bad left side, and i've started having persistent problems with painful hips too :( It wasn't a gentle workout at all, will check out your link. I really want to do it, I just physically can't! So little energy I can only go downstairs one at a time and sideways so my back/bottom are supported against the wall, like a little old lady :(

Thing is my friend and my cousin are doing healthy eating/ tons of exercise to lose weight, which I am desperate to do, and are bragging so much about it to everyone. It's not like you going to the gym to get in shape/fit.
 
Star, have they diagnosed any of your painful joints as being arthritis? I wonder if seeing a physical therapist would do you some good - it did me good. I started going to PT right after being diganosed with arthritis. I was lucky because I got a really good physical therapist. She had no idea there was a link between IBD and arthritis until I told her - apparently it interested her, so she did a ton of research and later thanked me for telling her about that, and she's putting that knowledge to use with other IBD & arthritis patients. So I helped her and she helped me. :) I'm really glad I went to PT - she was the one who initially lighted a fire under me to get exercising. When she assessed me, she noted that my good hip was about as weak as my bad hip, and additionally I had very weak knees, ankles, and so on. Everything was weak because I had no muscle mass left! It made me kind of ashamed, but also made me want to do something about it, and she showed me how to start with gentle exercises and I worked my own way up from there. So, I am very thankful for my awesome physical therapist. Not many medical professionals have been life-changing for me in a good way ;) but she was.

And frankly, how icky is it that your friend & cousin are bragging so much? I work out a lot too and I know I talk about it a lot, but I certainly hope I don't come across as bragging because that is totally not my intention. I feel like bragging is meant specifically to make others feel bad, and I'm just trying to let others (particularly other spoonies) know that this is what's working for me health-wise. I don't mean to make anyone feel bad when I talk about exercise. But your cousin and friend, it sounds like they are trying to make you feel bad. Try not to let them - I know stuff like that is easier said than done. Honestly, they sound very insecure and that's why they're bragging so much. They need validation in the form of making others feel bad so that they can feel better about themselves - they're bullies. Don't let them play those games with you, just concentrate on yourself.

(For what it's worth, I have an ex-friend - the one who faked having Crohn's - who lost a lot of weight and then viciously made fun of every fat person she saw and just loooooved showing off her body, but it was obvious she was super insecure and constantly needed me to tell her she looked good - looking good on the outside does not always mean being a nice or happy person inside. I'm so glad I am no longer friends with that person!)
 
hi peeps... well my temperature soared last night and ended up going to my out of hours GP collaborative at the hospital. thankfully its just a virus and not tonsillitis... bleurgh! so all i can do is take paracetemol to keep my temperature down.

@star - like cat said, have you had anything diagnosed with your joint pains? physiotherapy helped me out.. though i had to go frequently to get the benefits. my GP didn't think i had an inflammatory joint issue because my CRP was always borderline... i only got lucky because my podiatrist referred me to a rheumatologist.. and the rheumy said some people's CRP just doesn't show anything lol!.. so he did the trial steroid injection which has worked wonders - thus proving it was an inflammatory problem.
good luck with the CBT though, if it does work - great! (but like you and pretty much everyone else would agree.. its a load of rubbish) xxx
 
No no arthritis, had a normal bone scan I think last year, although the hips have only started in the last few weeks.
I had a PT referral many years ago (when it was just shoulder as opposed to all joints in left arm) but never got an appointment. I think I am too bad now to be able to do the exercises/ attend the appointments- I can't get out much now :(
My CRP is always raised (along with other inflammation markers) but have gotten nowhere with figuring out why, in fact the London Dr said my numbers were too low to warrant my previous dx of "inflammatory disease of unknown origin". So that's now what Rheumy says, although he accepts I have problems and is happy for me to continue on meds, in fact he encouraged it, which I am grateful for, since I have seen no dx often means them taking pain meds away! The CBT therapy is to try approaching things from a new direction, because medically there are no treatments or tests left put simply.
I had a steroid injection into the painful shoulder, which worked ok for all of 2 days , and no pain improvements on 39 days Pred, hefty dose for first 2 weeks too.
So as you can see, nothing works and not even got a vague dx anymore, whatever is causing this is not traditional or typical in any way, the usual answers/theories just don't seem to apply to me!

:voodoo:
 
Ugh ugh ugh. I am so nauseous. I think I caught one of the viruses that have been going around my workplace - a co-worker yesterday told me she was really nauseous in addition to other symptoms, so I'm guessing I've got that. I felt fine when I woke up and was fine until I had been at work for about an hour - then suddenly the nausea hit and got bad pretty quickly. It doesn't feel like a flare - my face hasn't gone completely pale, I'm not chilled, my joints feel fine, etc. So I'm home now and thanking my lucky stars that I have a nice stash of Zofran at hand. I took the max dose and I can tell it's helping but I still don't feel right and still fairly nauseous. Stupid contagious co-workers!! So Bozzy, I'm joining you in the Virus Club - hopefully we both leave this club soon! There are some things exercise can't help with and I'm thinking this is one of them. Ha ha. :p I can also tell I'm not super sick yet since my sense of humor is still intact. That usually goes away too when I flare or when I'm super ill. So if I start posting unfunny depressing things on here or on FB then you know I'm really bad. ;)
 
Most of the time which is better than nothing. Of course I have bowel flares and d which the lopermide doesn't help, and pain spikes where I can't get any relief, but on the whole yes they do help.
 
Bozzy, ha ha at computer virus! :p Glad that your sense of humor is still strong too. :) And yes, I left work quite early. Got there at 8:30 AM and left around 9:45. My cousin just told me on FB that she had the same or a similar virus recently too and it sounds like it's a 24 hour bug. She got it yesterday and is already feeling a lot better today. So that's good, I hope that I am feeling better by tomorrow. The Zofran helped a lot and my heating pad has been on since I got home (it's about quarter past noon now) and that's helping a lot too. I've just been sipping Gatorade, haven't been brave enough to try food yet. I had one episode of very watery explosive d but haven't gone to the bathroom since, and haven't vomited (knock on wood). I still have zero appetite though and some nausea and weird tummy gurgles so I'm glad I went home from work. I hope you feel better soon too!
 
Star, I am so so so sorry you seem to have hit a dead end. Yes, it is time to see someone else! That is really good that they have encouraged you to stay on the pain meds..you are right, most don't get any! Even with my new diagnosis I am still only being given three tramadol a day, and he plans on taking them away from me because he believes the behcets will be controlled. And this is a pain management specialist, and he insists on no paid meds. CRAZY!

Cat, I am so sorry you aren't feeling well! I hope it is just one of those 24 hour bugs and it goes away FAST!

Bozzy, I am sorry you aren't feeling well either! I'm glad it was just a virus though! I absolutely HATE it when my health takes a turn and I have to go to an urgent care clinic or the hospital...I'm always afraid I will be admitted, which is just absolute torture to me. I hope you feel better soon!

Well, I can officially say that this pred taper has not helped my behcets flare whatsoever. The first thing it attacks is your mouth, since the skin inside our mouth is so fragile, and it is also the first thing to heal when you are on pred. Well, I am now on 10mg of pred, and I have 4 large ulcers in my mouth. :( I am NOT happy! I need to call my Rheumy and see what the next step is, but my social anxiety has kept me from calling because his nurses do not speak very good English. :( Yuck! I'm still having chest pains too...not as bad as it was when I was in the hospital, but I still get them at least once a day. I just don't want them to freak out, admit me, and put a catheter in my heart like they plan to since they want to see exactly where the behcets is attacking near my heart...its a major procedure, and I just don't want to do it. :( I would much rather try a higher dose of pred.

Other than that, life is now back to full force busy, with auditions tonight for the spring musical. We are doing legally blonde, and I am REALLY excited! Ever since it was announced last fall that we were doing this musical everyone has said I have been pre-cast as Elle. It has actually spread around the post...someone I don't know went up to my husband and said "hey isn't your wife going to be Elle in Legally Blonde?". Ha ha I don't like that everyone is saying that, because auditions can change everything, but I'm really hoping I get the part. I will be SUPER busy (Elle is on stage almost the entire time) but I think it will be worth it, even with how bad my behcets is right now. I now work only part time, so that should help with keeping my business down. I finished two different Allie's Handmade Blankets orders last night (two scarves), so now I only have a blanket and a half to do before I am caught up from all the orders that came in from before I was hospitalized. Then I can start accepting made to order and custom items again, but I wont let my order list build up like it did before! So, all in all, I'm sick but I'm not letting it take over my life...I might have behcets but behcets doesn't have me sort of thing. :p

I hope everyone else is either doing good or hanging in there! I try so hard to keep up with this thread but sometimes it is really hard!
 
Thanks allie.. im feeling a bit better this morning. though last night was horrendous - night sweats completely drenching the bed. i had to sleep wrapped in towels! Lol..

Im sorry to hear about your meds situation.. can your husband call your rheumy if its awkward for you?
Doing legally blonde sounds like tonnes of fun! I LOVE legally blonde :)
Hope doing all that stage work doesnt wipe you out though xxx

ps: there's member - blackbird who recently started a thread regarding bechets.. she's being tested for it. just thought you might wanna get in touch. could be interesting :)
 
Hi all

Hope everyone is soldiering on!

Allie - GREAT to hear you may be Elle in the musical. How freakin' awesome!!! I'd never have the guts to do anything on stage, so big ups to you on that. In the next breath, sorry to hear you're not 100% and things aren't plain sailing at the moment for you. But, I guess the musical will be a welcome and deserved distraction! Good luck hun!

My life is pretty the same as really.... pre-approval has been approved so just waiting for (yet another) form to arrive to FINALLY let me get bloods etc done. I've had good days and bad. Yesterday very bad as woke up in pain and cold sweats. Last night too I just couldn't sleep and kept being violently hot (I know it's summer here, but cold sweats are something else) BUT had to pull myself together for a meeting. A garotade later and a forced lunch of chopped tomatoes and a boiled egg I felt moderately human enough to do a 10-2 day in the office. Not bad, and I did get all I needed to get done, done.

Hopefully tomorrow or Monday I can get bloods/fecal specs done and then the GP wants to start the referral process. This has to be before I go overseas to Singapore/UK/France - but we'll see eh.

Hope you're all OK.

Heather :)
 
Bozzy, those night sweats sound awful! I hope tonight isn't as bad!

Heather, that sounds like a really long process just to get blood tests done! I'm glad you are making progress with it though. I hope your referral takes the minimal amount of time so that you can get this going and start figuring out what's going on!

Bozzy, thanks for the heads up! I don't venture much out of this thread, and I rarely leave the undiagnosed club area since I do not have crohns. I will go find that thread....I'm curious, since there is NO test for Behcets.

Yeah, my husband is probably the one who is going to have to make that call. Usually in the healthcare realm people can't call for you, they have to talk to the actual patient, but I would rather him try first. You know, Im on a strong antidepressant for my anxiety, and it worked very well the first few months (I was able to make phones calls easily), but now it seems like it isn't working as well. Oh well, I'm still not having the panic attacks like I did before.

I just got back from auditions, they went very well. :) I brought my corgi Bentley with me and he auditioned for Rufus, the bulldog that is owned by the hairdresser. I was soooo nervous, and having him there being a typical puppy didn't help,but all in all it was fun. :) My friends said I did we'll, so Im hoping I get called back for Elle next week! I'll be at the theater all week anyway, we have to practice the one act we did for Christmas because we are competing next weekend with it. We are all traveling to where the army hospital is and staying there for a weekend. So the next few weeks are going to be busy. :)
 
Well something finally seems to be going my way, I have found a new family dr. I have a meet and greet with him in two weeks! So hopefully that means I will finally have a medical team that will communicate, since my IBD dr refused to work with my old family dr because of the lack of care they were giving me. Now if my IBD dr would decide when I get to have an appointment for more tests.

After having been off work for a month, going back this week was definitely a stressful one. Gotta love when the kids come back from Christmas vacation and you get two new students in the class. Oh well, time to get back into the groove of life and try and get over this hump.
 
That's great, Alberta! I hope this new doctor listens to your concerns and either helps you himself or gets you to specialists that can.

I totally understand about the stress after Christmas break....I work at a combined middle/high school as their IT tech, and I was SO busy all week! Somehow over the break a ton of equipment stopped working for one reason or another. Yuck! I loved the time off but getting back into the swing of things can be a challenge! I hope next week isn't so stressful for you. :)
 
That sucks about the technology breaking down, I know we have tons of problems with ours and I'm the one they ask to fix it. Something about being part of the computer generation when most of the staff is ready to retire. :tongue:

I'm an educational assistant working one on one in a grade 2 class with a severe special needs kid. My kid is really good, he is the best behaved when I'm not feeling good, so I've had one cooperative kid this week! :)
 
hey everybody... its FINALLY SNOWING!! love love love it!
although,... i went back to work this morning (after been off with this virus thingy) and hi have had to come home early :(
full of cold now, bad cough and keep going hot and cold still.

oh well :p
hey allie - when do you hear back about the part of elle? (im keeping my fingers crossed for you) xx

cat - how are you getting on? hope your virus/bug thing was a 24hr one xxx

alberta - fingers crossed you get your appointment soon, nobody likes a dr who drags their heels x
 
Hey everyone, had a rough weekend can't keep anything down even water. On my way to the GP now she thinks she will have to admit me to hospital. In a way this is a mixed bag-I could be closer to getting diagnosed or ill be put on a drip for five days and then let home with paracetamol! To be honest I just want to be out of pain for at least 10mins- I can't imagine that. I hope you are all well xxx
 
Sorry to hear your in so much pain Gabi, hopefully this will push the doctors to do something! You can't carry on like this!
 
@Gabi - I'm sorry, that's the worst! Keep us updated, and I hope you're feeling better.

@bozzylozzy - glad to hear you're getting some snow, but I'm sorry to hear you're sick. It seems like everyone is catching whatever is going around right now - almost my entire office has been out in shifts for the past couple of weeks. @Cat-a-Tonic bummer that you have it too! Feeling any better?

@Alberta_sweetie It's so nice to have all your doctors on board and on the same page. Hopefully everyone can work together to figure out what's best for you and what's going on in your body.

@allieinwonder You'll have to keep us updated about the musical! How cool! I think that sounds like so much fun.

I went into the hospital today to get the MRI of my small intestine. Definitely my least favorite procedure so far (I'll take a colonoscopy over holding my breath in a small coffin-like thing any day), but results should be in in the next couple of days. I'll keep you guys updated!
 
bozzylozzy said:
hey everybody... its FINALLY SNOWING!! love love love it!
although,... i went back to work this morning (after been off with this virus thingy) and hi have had to come home early :(
full of cold now, bad cough and keep going hot and cold still.

oh well :p
hey allie - when do you hear back about the part of elle? (im keeping my fingers crossed for you) xx

cat - how are you getting on? hope your virus/bug thing was a 24hr one xxx

alberta - fingers crossed you get your appointment soon, nobody likes a dr who drags their heels x
Click to expand...

Thanks Bozzy.
 
That stinks Gabi! I have been there before...it is a mixed bag. If you did end up getting admitted, you could finally figure out the reason why you feel bad...focus on that and make sure your doctors know EVERYTHING! Hang in there and update us when you can!

Thanks for the support guys. :) I got an email yesterday saying I am being called back for Elle, Vivienne, and the delta nu sisters. I really hope callbacks go well and I get a good part! This is probably my last play here in Germany (we move in the summer), so I want it to be a good part so I go out with a bang. :p

Bozzy, it has been snowing here too! It was funny, our weather said nothing about snow, but it snowed most of yesterday. :p It ended up not being much though, just enough to make the roads slippery!
 
Update is I got admitted last night througha&e. I thought all my Christmass's came at once as my doctor in charge that eve had IBD. I couldn't believe it, in fact I burst into tears as did my sister and my mum. She explained how it took her two years to get diagnosed and she near hugged me and kept tellin me your not alone- you don't have IBS. I couldn't believe it, it felt amazing like when I found this site and all you guys. So she admitted me straight away and got me on morphine immediately- which made a difference. I hadn't ate in 37 hours so couldn't hold down anything and was severely dehydrated (another symptom of IBS-em NO!!!!) so all night the kept me topped up on morphine but I ha a very bad accident during the night, in fact the worst I've ever had an I used the loo about 13 times so as usual no sleep. I was told by another doctor in the early hours of the morning that I sound like a typical IBD and didn't understand why I wasn't on steroids. Furthermore I couldn't believe this. Then my own GI came to see me he told me I was looking for narcotics and purposely not eating and drinking. So he instructed the nurses nothing more than paracetamol and no more drip. I felt like (once again) my life had been taken from underneath my feet. I burst into tears and begged the. Rise to plead with him and she did but he refused to change his mind.
Now I'm lying in hospital for observation with no food, no drip and most importantly no pain meds. I literally feel like throwing myself out the window.
I blame myself for getting my hopes built up. The pain is so bad I can't walk. I just wonder when is my body going to say "ok enough is enough we've had too much pain" and just let go. I pray it would.
Sorry for the long winded depressing fest but its how I feel and I guess this is what this forum is for!

Undiagnosed and in agony.
Hiatus hernia.
"IBS diagnosis"
 
Gabi, that totally sucks! Sounds like you need to demand a new GI and possibly file a malpractice suit against the one you have. Especially when you have 2 other drs that don't have the same opinion as this one.

Don't give up! My thoughts are with you.
 
Hi all! I've been reading, just haven't had time to post. Been SO busy with work lately - I had to work on a Saturday which almost never happens, and this week I have to take an overnight business trip. Fortunately I seem to be 100% over that virus so I am back to feeling pretty good and I'm working out lots again. (I had to google the hotel I'm staying in for my business trip to check out the fitness center there, ha ha).

Oh, and something funny/weird happened - I got found out! :p I'm sure I have mentioned my Crohnie aunt before - I guess she just discovered this site recently, and she sent me a FB message saying, "Are you Cat-a-Tonic???" I guess she's in a bad flare right now so she needs some support. Auntie, if you read this, hi and feel better soon! (And stop lurking the forum and join and come chat with us! Everybody is super nice here, I promise!) :)

Gabi, I agree that your GI sounds absolutely horrible - can you switch to the one you first saw, the one with IBD who was understanding? In the meantime, can you make some sort of formal complaint against your current GI? It seems cruel and unusual to leave you with no food and no fluids and no meds! Do whatever you can, complain loudly to whoever is nearby, just try to get that terrible doctor off your case! Hang in there, please keep us posted on what happens.

Allie, congrats on being called back, good luck!! To everybody else, I hope all is well or at least not terrible. I probably won't be on much this week but I will be reading when I can and thinking of you guys. Hugs to all!
 
@gabi - i cant believe what you have been experiencing! im gonna come and kick that doctor in the goolies! lol! :p
i agree with everyone else, is there any way you can swap back to that MUCH nicer doctor? its ridiculous to think that you being unable to keep food/liquids down is you starving yourself to get narcotics. its a f#@%ing joke!

@allie - thats great about the call back.. what happens now? do you have another audition?

@cat - thats so funny about you checking out the fitness centre haha.. i cant say much.. ive bought myself a fitness dvd to do at home - it's all about short bursts of exercise - so will see if i can manage that. although im still suffering after that virus! still covered in a rash and full of cold :(

and hello to cat's aunt! :)
 
Hi girls and guys thanks for the reply. To me my GI doctor is playing mind games with me and I'm going to ask the nurse about how I changed GI doctor because he is putting me through hell and back. I was on the highest legal dose of morphineon casualty/ER and I was still on bloody pain- so now they my GI is saying I'm a narcotic junkie!! I don't even drink let alone do drugs!! Still in hospital, the nurses are very sympathetic and are begging him for pain relief an when he signs off they ask another doctor and he gives me tramadol and codine- which is better than nothing.
On the exercise front I find that the more I walk the better I feel (to a certain extent) for example some days I can't walk to the loo let alone go out! But apparently exercise is so good for the bowel as it keeps it more limber (not sure that's the right word!)
I just found out from my nurse that my criteria on hospital was "critical" I couldn't believe it, however looking back I can see now I was but its funny how at the time my brain was telling me I'm over reacting. Just shows observations can't lie no matter how much they think I am!
I hope you all have a great day.
 
God Gabi that is awful I really don't envy you :( I wasn't given pain pills for a long time and thankfully no one has ever questioned me on my use of them since I got them after being admitted last year. I would crack up if anyone tried to take my dihydrocodeine from me now!!

I really don't know what to say, I really feel for you. Why does your GI have to be involved any more? Is there any way to 'fire' him? I have 'fired' my original GI and while the new one isn't perfect I've made more progress in a few months than I have in 4 years with my previous GI.

I'm sorry you're in so much pain :( When I was admitted last year I couldn't walk or stand either, I would lie there until the very last minute to go to to the toilet and nearly end up soiling myself because the pain of moving was too scary. I also couldn't eat like you and lost consciousness in the shower a few times due to it. I ended up having to take sitting cold showers to avoid passing out lol. Funnily enough my GI at the time said it was all psychological! So I kind of get the I'm in agony and no one believes me thing.

Hope you feel better soon? Do you have a plan or any idea when you're getting out? Although obviously you won't want to get out until you know what's going on/you feel better!
 
Gabi, I really hope you manage to change gi drs, cuz that really sucks and its not fair to you or the nurses to be put in the middle of it all.

On another note, I finally got called by my IBD specialist to go in tomorrow morning, nothing like last minute notice! But it's an appointment. My choice was tomorrow morning or in 5 months. I'll take tomorrow thanks. Hopefully I get some answers and progress towards an actual diagnosis.
 
I'm back from my business trip. Phew, so glad to have that over with! My guts weren't too happy about it, they don't like travelling and they don't like when I have to do things outside of the norm. And they served non tummy friendly food at the meeting I had to go to. It sounded good on paper - baked chicken and mashed potatoes, I thought that would be fine. But the chicken was SO pink it seriously did not look safe to eat so I didn't touch it, and the mashed potatoes had the potato skins mixed in which is a big no-no. So I had a piece of bread and a tiny bit of steamed broccoli, and then a piece of cherry pie because that seemed safe. I guess it wasn't though because I'm seeing undigested cherries in my poo now. Ugh!

And I think I've actually been over-exercising this week. I haven't given myself a rest day for like 5 days now. I did weights Saturday, cardio Sun, weights Mon, cardio Tues, and weights yesterday. And every day I worked my legs, whether it was cardio or weights, so my legs got too sore and when you get too sore for too long you risk injury. So I am backing off and giving myself a rest day! I might do a bit of yoga at home this evening but I am staying out of the gym today. Tomorrow, though, I am definitely right back at the weight machines. :p (Help me Bozzy, I think I have gone crazy!)
 
Cat- sorry to hear that you aren't feeling good after your trip. But now that you're home hopefully things will get back to normal.


I saw my IBD dr this morning and my labs came back that the pentasa isn't working. I go for a scope top and bottom in 2 weeks and they will probably change me to imeran I think after the results of the scope. I could of told her it wasn't working, I feel about as good as I did before ending up in the hospital.

I have to take 10 special needs athletes to Calgary on Saturday for a bowling tournament and am totally not looking forward to it. I'm lucky if I'm still awake at 8 pm and we don't return home until 1030. And the lovely joy of their banquet and dance before we leave Calgary. Oh the things I do for my special friends. At least I know they will have fun!:)

Hopefully everyone else is doing ok!
 
Alberta, Pentasa is a really mild med so that's not too surprising that it isn't working for you. As for the Imuran, I haven't been on it myself but I believe I read that it takes something like 3 months (?) to kick in, so you might want to ask about something else to take in the meantime while you're waiting for it to take effect. Like a pred or Entocort taper perhaps. Good luck with the scopes and the bowling tournament too!
 
Cat I'm on prednisone too, that they were tapering and now they are saying to stay on the same dose and then they will change all the drugs after the results from the scopes. But yeah, so far all these drugs seem to do is make things worse. Oh well now at least things are starting to happen again and I'm not being ignored.
 
Got my requested copy of letter from Rheumy sent to GP, it's quite reasonable, and it says he thinks I would benefit from input from fatigue/pain management services, so maybe it's not CBT therapy after all which is nice.

Has a fair amount of detail on which I think will be handy for my benefit claim/appeal.
 
Gabi said:
Hi girls and guys thanks for the reply. To me my GI doctor is playing mind games with me and I'm going to ask the nurse about how I changed GI doctor because he is putting me through hell and back. I was on the highest legal dose of morphineon casualty/ER and I was still on bloody pain- so now they my GI is saying I'm a narcotic junkie!!

Gabi: That is so disturbing to read your story. What is wrong with physicians these days? There is nothing scarier than being in severe pain and an unresponsive physician. I experienced something after my resection surgery that caused me severe pain and my surgeon said "I don't know what it could be, maybe your bowel is adjusting." and just left me like that. The GI said "I can't see you until next week, I'm going out of town." And offered the emergency room option which is a 5 hour hell to someone who is already in hell. Thank God my husband had filled the Vicadin script - which I never opened - after my surgery. It was 6 days of that and the Vicadin is the only doctor I had. I think medical professionals are so desensitized to your pain because of the number of people who do abuse it that they automatically assume you're one of those. The only good part of your story is that the nurses seemed sensitive to your dilemna. Hope you are feeling better soon!In my prayers...
Click to expand...
 
Alberta_sweetie said:
Cat I'm on prednisone too, that they were tapering and now they are saying to stay on the same dose and then they will change all the drugs after the results from the scopes. But yeah, so far all these drugs seem to do is make things worse. Oh well now at least things are starting to happen again and I'm not being ignored.
Click to expand...

Alberta, does prednisone affect your appetite? I'm currently on Entacort for another month and a half and I'm like a hungry mama bear!! I'm especially focused on sweets. Did I mention the Duncan Donut people bought me a Christmas present this year? LOL I am wondering if prednisone offers the same symptom.
 
Sparkle2012 said:
Alberta, does prednisone affect your appetite? I'm currently on Entacort for another month and a half and I'm like a hungry mama bear!! I'm especially focused on sweets. Did I mention the Duncan Donut people bought me a Christmas present this year? LOL I am wondering if prednisone offers the same symptom.
Click to expand...

I wish, I'm the opposite of hungry. I'm forcing myself to eat so that I can take my drugs because I just don't ever feel hungry. And when I do eat I feel like crap.
 
You have my utmost sympathy. I did 39 days of Pred (2 weeks at 30mg then 5mg less for 5 days). I had horrible side effects, didn't feel any better and to top it all off my pre and post steroid blood tests showed an increase of all my inflammatory markers!

:stinks:
 
Sparkle, I was on Entocort for 7 months and it made me super hungry too! Which was good in a way, because I had lost a bunch of weight from being ill, and Entocort helped me put my weight back on (and then some, eek!). And when the weight came back on me thanks to Entocort, it seemed to all come back to my midsection - that's the bad part! I still have a bit of a flabby tummy, I've been working out for over a year and a half now and have almost lost the flab but not quite. It's really stubborn! So if you're concerned about Entocort weight gain, maybe start working out and don't expect results overnight because it's taking me forever. (My main exercise goal is not to lose the flab, though, it is to get as healthy and strong as I can so that I can fight my illnesses with everything I've got, so I won't stop working out even when the flab is all gone.)

Star, that letter sounds promising, I hope this means you won't have to do CBT after all. Keep us posted on what your GP says!

How's everyone else doing? I'm okay, made myself take a rest day yesterday (didn't even do yoga) and my body feels so much better, I'm not sore at all anymore, so I'm going back to the gym today. I'm kind of upset though because my oven broke yesterday! I was pre-heating it as we were going to bake some mini-pies for dinner (yummm) and we heard a loud "POP" sound, apparently that sound was the circuit board blowing. I can still use the stovetop but can't bake or broil anything inside of the oven. Hubby did a bit of googling and it looks like circuit boards cost about $150 (!!) and that's not even including the cost of the repairman to install it. We paid a little less than $400 for the oven when it was brand new 4 years ago so I'm not sure if we should just trash this one and get a whole new one - either way it'll probably cost about the same. Ugh, this is going to be expensive and I can't bake anything until I figure out which expensive route I'm going. The kicker is that hubby is away for the weekend so it's just me, and I'm a terrible cook. So I am thinking of going out to eat or getting some microwaveable meals because I cannot deal with no oven and having to cook for myself! Blah.
 
Will do! Although I didn't like him at all, he obviously listened well to me because of the list of dx's is "probable IBS". I gave him the "I know why Gastro say IBS but my symptoms don't fit spiel". Just so he was aware my bowel issues were more serious than they might otherwise appear really.
My old Rheumy said new Rheumy wouldn't hold my hand but would get the job done, he was right.
 
Sparkle I'm on prednisolone and my appetite is insane. I'm on a lower dose now (11mg) and it's not quite so bad, although I am piling on weight, but when I was on 50mg I would feel sick from hunger constantly. I felt hungry even when I was eating! :p I think a lot of it has to do with how well steroids work for me too, now I'm feeling a little better it's like I want to make up for lost time with food!!

Has anyone had MR enteroclysis? My GI/rheum have ordered this test and I honestly think I'm going to chicken out of it. I really don't fancy an NJ tube, it terrifies me, and while I'm this well, what's the point in doing more testing? I wish I could just have the enterography. My GI's communication is so poor I didn't even know I was getting an NJ tube or a bowel prep until I handed in the MRI form and the lady told me!
 
Hey everyone sorry to hear others are having problems. You are on my prayers. I'm still in hospital and I'm being treated as an anorexic, narcotic junkie. There is constant running to the loo and there are proteins, blood and keytones in my urine. The doctor told me the blood in my urine is menstral- and I asked to a doctor to check me out down there to prove it wasn't but the nurse said it isn't the same blood and called him a "typical man"( sorry guys out there lol!) my doctor also told me that this will be followed up as an out patient so
some time!!! I cried all night and rolled around the bed- I requested the doctor came to see me but my nurse said he will not give me narcotics so she will not ring him. I argued back and said that I had a right to see a doctor. She came over to me at 6 or 7am and said so you l yo your getting home today as you were so peaceful last night I went crazy and she said didn't want an argument as she has sick patients to attend to. I immediately left the ward and walked to what I hoped would be the end. I don't wana bring anyone down but I pray so hard for god to take me everyday. I didn't sleep a wink and they have me a sleeping tablets!
I contacted my mother who rang in and to the nurse how bad I was. She seemed shocked and called me into her office and Said she had a son and if he was like this she would go mad. The nurse said she is go a beg the doctors to keep me but I know there is only so much they can do.
I want to die.

Xxx
 
Oh no! Gabi, this is awful. i wish i could say something to stop you feeling this way.. but i ld probably feel the same way if i was being treated the way you're being treated. surely if they 100% thought you were an anorexic narcotic seeker.. then they would have admitted you for rehab or a psychi hospital?!
Can you ring a solicitor and maybe seek some legal advice? They are practically torturing you!
:hug: stay strong as best you can xx
 
Gabi said:
Hey everyone sorry to hear others are having problems. You are on my prayers. I'm still in hospital and I'm being treated as an anorexic, narcotic junkie. There is constant running to the loo and there are proteins, blood and keytones in my urine. The doctor told me the blood in my urine is menstral- and I asked to a doctor to check me out down there to prove it wasn't but the nurse said it isn't the same blood and called him a "typical man"( sorry guys out there lol!) my doctor also told me that this will be followed up as an out patient so
some time!!! I cried all night and rolled around the bed- I requested the doctor came to see me but my nurse said he will not give me narcotics so she will not ring him. I argued back and said that I had a right to see a doctor. She came over to me at 6 or 7am and said so you l yo your getting home today as you were so peaceful last night I went crazy and she said didn't want an argument as she has sick patients to attend to. I immediately left the ward and walked to what I hoped would be the end. I don't wana bring anyone down but I pray so hard for god to take me everyday. I didn't sleep a wink and they have me a sleeping tablets!
I contacted my mother who rang in and to the nurse how bad I was. She seemed shocked and called me into her office and Said she had a son and if he was like this she would go mad. The nurse said she is go a beg the doctors to keep me but I know there is only so much they can do.
I want to die.

Xxx
Click to expand...

I would get yourself out of this hospital if it's at all possible. When I was a teenager my illness was misdiagnosed as anorexia, to the point where I was forced into an in-patient eating disorder clinic. (Because of weight loss and because they thought my diarrhoea was caused by laxative abuse - which can be a common behaviour in eating disorder patients.) It was an absolutely horrendous experience which I have never gotten over.

Because a psychiatric label was on my medical record, I experienced unbelievable amount of discrimination from doctors. They put every symptom down to various psychiatric conditions like stress or depression or Munchausen's! So many doctors seemed to assume that having one psychiatric diagnosis meant you could have any number of others, and they also believed that having a psychiatric diagnosis meant you couldn't possibly have anything wrong with you physically as well. It made me realise how terribly people who do have a mental illness are treated!

In the end I had to go through a huge and distressing formal complaints process to get my medical records changed, which I was only able to do after my health got so bad they had to accept there was something physically wrong with me. Reading what had been written about me on my record was devasting and I could never trust a doctor again - I make sure I get copies of every single thing now and anything that even suggests they may not be treating me right I bring straight away to a formal complaint.

I realise my case is the absolute extreme, but if I were you I'd get a copy of your records now to make sure this doesn't snowball - in the future other doctors will be influenced by what's been written about this admission and you need to make sure now that it's accurate and won't reflect negatively on you.

I'd get out of that hospital now. If you need to be in hospital, is there another one you can go to? Can you manage out of hospital and follow up as an out-patient somewhere else? When your health isn't so critical, I would make sure you follow this up - make a complaint - so it won't cause you other problems later on.

So sorry you're going through this.
 
Last edited:
Gabi, I don't even know what to say, that situation sounds so terrible. :( I think UnXmas has given you some good advice so hopefully that helps - I agree that it sounds like it's time to go to a different hospital because the current one seems hellbent on torturing you. Sending you a big hug and I hope somehow things can improve drastically! Please keep us posted, very worried about you.
 
@gabi - just wanted to check in and see how you are doing? has anything changed over the weekend? like cat said - please keep us updated - i am very worried about you and your situation xxxx

**************

on a side note.. i have my rheumy appointment this friday, and it cant come soon enough. i feel like rubbish! i feel so weak... i have noticed i feel like this whenever i get over an illness.. like my immune system is incredibly **** and struggles to make me feel better lol!
 
Gabi

im so so sorry your going through hell your GI is cruel my god how can he get away with this piss poor level of care

hun i dont understand how they can just write you off as a drug abusers

i have all the its ibs its the food your eating its in your head your crash dieting
when i am in so much pain and i want to eat

the colonocopy and mri cant find anything so as far as the gi is concerned its IBS or food intolerency but i am no where near as bad as you are, hunni you are one strong brave lady

like alot of us we just want to get a diagnoses and treatment ibd is there its just hiding

please keep us updated and i wish you all the best
big hugs xxxxx
stacey
 
hi Bozzy

same as really, had some more bloods last week and came back again with inflammation markers GI wont see me untill after i have seen the dietitian woman so just preparing for that next week as i have been keeping a food diary and just sticking to my diet of chicken rice veggies soups and water
that seems to be working but i do go from 10 BM a day to nothing for 3-4 days at a time
but i am just tring to get on with it and working through the pain and discompfort
getting sleep were i can and eating what i can and im still loosing weight

i have been like this now for 6 months so im having a good period at the mo just wait for the bad periods to come and go

hows you hun

xxx
 

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