Undiagnosed Club Support Group

Crohn's Disease Forum

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Stacey, are you on any medications? I was in a similar boat before they put me on meds, I would eat as much as I could but the weight was still falling off of me. When they put me on steroids (first pred and then Entocort), that was when I was finally able to eat more normally and regain my weight. Do you have any appointments or tests coming up?

Bozzy, that stinks that you keep getting ill, but it sounds clear to me that your immune system is not normal! My immune system goes up and down, sometimes I'm like how you described and I get every cold and flu going. Then other times my immune system is way up and I can go forever without getting any colds. That's how it was when I was flaring regularly, so I really feel like my illness, IBD or whatever it is, is directly related to my immune system. I had flare after flare for a full year, but I got zero colds or viruses that year. So in a way it's a good thing when I get cold after cold, because I feel like that means my immune system is working more normally (at least it's not attacking me anyway and causing flares or whatever the process is!). I know it sucks to get cold after cold though so I hope you can finally kick all these viruses and get back to feeling relatively normal again!

How's everyone else doing? We're having a bad cold spell here, the high temp today is 7 degrees fahrenheit (-14 celsius) but I have the day off of work because it's Martin Luther King Jr Day, so I am hibernating inside and trying to stay warm! I can't even walk the dog outside when it's this cold because extreme cold really riles up my arthritis, so we're all staying in. Watching the presidential inaguration on TV and going to drink some hot chocolate. :) I hope everyone else is doing okay and is staying warm! Big hugs to all.
 
Hi Cat

no meds at all, i have the dietitian on the 4th Feb and my GI wont see me untill i have seen the dietitian
my GP says that i have to go through the GI
bloodwork keeps showing imflammation markers and low white blood count as i am aneamic so take iron and vits
my next GI appointment is on the 18th March where i will be begging for something to relieve me
so in the meantime im staying away from anything that will cause me any more pain which is bloody hard
my brain is taking over as i now see food as fuel and look at most foods as potential pain and that includes drinks as well so water and juice no coffee just tea 1-2 cups max
basic bland quick

Hope you ok hun and getting through the terrible weather back in blighty its snowing but nothing like what you guys get its only light but as per we cant cope with any adverse weather

hope everyone else is good
xxxx
 
just wanted to drop in ,ive been sooo bad at keeping up , and my goodness big hugs are in order , you have all been ill bless u all . so all i can do is say big hugs and keep posting n i do keep reading xx
 
I just have to note... i have spent most of the afternoon trying to clean poo off my toddler's stuffed doggy.. after she thought it would be a good idea to take her nappy off in bed.

oh the irony...
 
Hey everyone! Gosh this thread gets so much longer so fast...o_O

Well, I went to callbacks and long story short, I didn't actually get called back for Elle. They decided, for some stupid reason, Elle should be filled with a high school student. The cast list came out last night, and it ended up getting filled with a middle school student. I am beyond pissed. Last year they filled a role with an average singer because of her looks, then this year they say looks arent important its the talent. I myself got two little ensemble roles, and I don't know if I'm going to accept them.

My health is in shambles right now. I cut my dogs nails last week, and he in turn sliced my tummy with one of them that I cut a little too sharp (accidently of course). The next morning I woke up with heavy chest pains and they have only gotten worse since. I really should have gone to the ER by now, but I HATE BEING IN THAT HOSPITAL. So, I'm sitting at work right now. I called my rheumy last Friday and they cannot see me until February 18th...so its the ER or nothing. :( I really don't know what to do......I keep just taking muscle relaxers hoping it will get better on its own....

I know what you guys mean with pred and hunger!!! I have been such a hunger monster the past few weeks, especially in the morning. I eat and eat and I'm still hungry, its crazy! I've gained weight because of it, which is a good thing, but it is so annoying being hungry all the time!

I hope you are all doing well. :)
 
This thread moves soo fast I can't keep up anymore :O haha

Stacey what inflammation markers are showing high? Is it ESR or CRP?? Is it definitely low white cell count you have? Anaemia is normally low red blood cells. Low white cells can indicate autoimmune diseases. I have low white cell count cause I have sjogren's syndrome. High inflammatory markers and low white cell count sounds awfully suspicious of something autoimmune.

Cat, how did you find getting back into exercise after being ill? I'm desperate to take up cycling again, although would just use the turbo trainer indoors at the moment. I used to be superfit and did road cycling, but when I got sick I found that exercise kicked things off and I would end up crippled by the side of the road unable to move! I am terrified to feel that pain again. But since I am feeling better on pred I am wondering if it's time to start again, particularly with my skyrocketing weight! What was your experience of taking up exercise again? I have started walking the dog again which has been a great success and really helped my mood.

Allie really sorry you're not feeling well, really want to encourage you to go to the ER!! Particularly with something so serious as chest pains.

My doc has decided he wants to keep me on pred indefinitely if I stay well rather than going on something like azathioprine. Not sure I'm comfortable with this :( Also found out my GI has ordered an MR enteroclysis so I'll need an NJ tube for it and I honestly think I'll chicken out. I am so squeamish about stuff like that :(
 
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...

Just didn't want this post to get lost in the thread. Has anyone heard any more from her?

Hope all other undiagnosed club members are doing well too.
 
Hi Isgs

its esr that showing up so its very confusing and i am now realising that its gonna be a long process of getting anywhere near a diagnoses so just try and keep myself as comfortable as poss

i am really worried about Gabi too i really hope she is ok bless her
xxx
 
StaceyC96 said:
Hi Isgs

its esr that showing up so its very confusing and i am now realising that its gonna be a long process of getting anywhere near a diagnoses so just try and keep myself as comfortable as poss

i am really worried about Gabi too i really hope she is ok bless her
xxx
Click to expand...

High ESR was the first sign of something going on with me.

In fact my first GI about 4 years ago ignored it (and a high calprotectin and liver enzymes sadly) and slapped the old IBS diagnosis on me and discharged me. It was only a year or so later when I got sicker he decided to investigate it and did an autoimmune panel which found high rheumatoid factor, then found I was anti-ro, anti-la +ve for sjogren's.

Also when I got really sick in summer before my steroid shot my ESR shot right up, that's how I knew something was really wrong. It was 51 prior to the shot, and 2 after!

What's your GI saying about it? I'd be wary of letting them ignore a high ESR like I did. There is inflammation somewhere it's just a matter of tracking it down, which is not always easy.
 
Allie, yikes! That's very worrying, I know that you know your body best so you know when it's time to go to the ER, and of course I hope things get better without you having to go to the ER, but please - do go in if this continues! You said yourself several times that you're at risk of a heart attack, please don't risk your life just because you hate the hospital. We all hate the hospital but it's not worth dying over. Big hugs, I really hope you feel lots better soon - please keep us posted. Oh, and in the future, take your dogs to a groomer to get their nails done! :p I take Lily to the groomer that's inside of the PetSmart store, it's not too expensive (something like $16?) and they do all the hard unpleasant work (Lily is a very squirmy dog who hates having her nails done). It's totally worth the cost to have a professional do that for me. :)

lsgs, as for how I got back into exercise - like you, I used to work out regularly before I became ill. The hubby and I went kayaking often and I was getting some nice arm & back muscles. Then I got sick and that all went out the window. When I was really ill and flaring regularly, I was able to do a bit of yoga and that was about it. By the time I finally hit remission, I had lost most of my muscle mass. Being ill and losing weight by not absorbing nutrients, and then being on steroids for awhile, both of those things made me lose a lot of muscle mass (corticosteroids like pred & Entocort have the opposite effect of anabolic steroids, they sap your muscle mass rather than building it up). So I was in a pretty sad shape and had basically no muscles. I got diagnosed with arthritis right around the time I hit remission, and my physical therapist noted that my good hip was about as weak as my bad one, in addition my knees were weak, so were my ankles, and so on. I felt ashamed that my body was in such a sad state - I knew I was bad, but hearing a professional tell me just exactly how bad it was, that shocked me. That pushed me to start working out and getting my health back on track. I don't think I could have worked out regularly if I wasn't in remission though. I started really slowly, 2 days a week of lifting very light weights. I tried jogging but it really hurt my arthritic hip so I stuck with weight lifting. Sloooooowly I built myself back up. I've been working out regularly for close to 2 years now and it's been a lot of work for a long time but I'm finally back in shape again and have gained my muscle mass back and then some. I'm up to working out about 5 days per week (weights 3x and cardio 2x). I feel great when I work out and I have no plans to ever stop. :) Being in the gym makes me feel healthy and human, it makes me forget I have an illness. It's just awesome. :D

So, my advice to you or anyone looking to start working out again is: start very slowly! Don't push your body too hard when you're starting out or it'll just make your tummy really unhappy. If something hurts, don't do it, try something else (I couldn't do jogging so I ride the stationary bike for cardio instead as that doesn't hurt my hip). Stay near a bathroom if possible (jog on a treadmill or ride a stationary bike rather than jogging/biking outdoors). Drink LOTS of water because those of us with diarrhea issues tend to dehydrate more easily. Try different types of exercise (cardio, yoga, weight lifting, etc) - I was sure weight lifting would cause me tremendous pain, but I tried it anyway and to my great surprise and relief, I do really well with it. I have issues with the abdominals machines sometimes but I do fine with everything else. Jogging is really the only thing I cannot do - I can do the elliptial machine, the bike, I can kayak again and walk my dog and lift weights and do yoga and even jump rope and hula hoop! It's kind of amazing how much I can do when I try. But you really do have to start slowly and ease back into a workout routine. And don't get discouraged if it takes a really long time to see results. It took me at least 6 months before I noticed any change in my body. I think I spent that first 6 months just building myself back up to being like a baseline of where a normal person's muscle mass would be at. It wasn't until after that that I started noticing that I actually have muscles again.

Bozzy, please let us know if you hear from Gabi. I'm also really worried about her. Her situation just sounds so unbelievably horrible, that poor girl needs some major relief and for a doctor to actually listen to her. :(
 
they have ignored that reading and slapped me with IBS and food intolerence which i have kept a food diary now for over 6 weeks detailing everything i eat ( or little i eat ) and the reaction i get its very detailed and as i have cut out everything all i eat is chicken rice soups and veggies all i drink is green tea and water
i still get the symptoms and loosing weight
i have dropped 22lbs and even though i am ok at the moment all i have is the pain and discompfort and messed up BM
my next appointment is on the 4th Feb to see a dietitian im hoping that see has experience with IBD and can clearly see that its not a bloody food intolerence or IBS as my sleeping is still messed up and i intense pain at night time
i have made peace with the fact that its going to straight forward and quick to get a diagnoses i just need to keep as comfortable as possible
i know there is something going on as i sit here nodding my head at everything that is written about IBD and on this forum knowing that i am going through the same things
i will be asking for the blood work analaysis so i can get a second opinon as when i was sitting in my GI office all he was worried about was the fact the MRI and Scope was clear he was not interested in the Inflammation markers or the symptoms its almost as if he dismissed me on the face value of the tests even though my symptoms are still present
NOT Happy at all

cheers hun
xxxx
 
Yeah, I know the ER is probably the choice here...I just hate being there day after day trying to get into a routine so that I don't go crazy. Eat breakfast, get told what test or two will be done that day, do the tests, try and pass the time all afternoon, see the doctor and the results which are usually normal, then try and pass the time at night while I can't sleep. It's a cycle of torture. :( I don't want to go through another visit if this is just costochondritis. Ugh.....I really just don't know what to do.

Yeah, I usually get my dogs nails done by a groomer. :p I worked at PetSmart for three years. Here in German it is harder to find a groomer, and his nails were awful. I didn't realize my immune system would react so violently.
 
bozzy bless u but u made me chuckle with the teddy - not fun though
cat-a-tonic i love the excercise thing too ( tho i am naughty and take codiene to get through it ).
allieinwonder , glad you got a diagnosis but a very scary one , hope you don't mind i sent someone your way on the site , you are all so helpful.

shame everything is soo rubbish for us all at the momemnt

hi to everyone else n hope and hug you can get sorted!

All much the same this end , pain awful , steriods work for short while then back to square one , gluten free helps a lot but lots of pain and bloating when i eat feels stuck if you get my meaning
New consultant is a dream ...love her , she is trying soo hard for me , she has done scope ( some visual inflamm) but biopsy ok , she is umming and ahhhing about trying me on crohns med with also having the skin tags and raised calprotecting , bloods ect... she has even arranged an mri after re looking at my small bowel barium thingy , so im hoping she will stick with her original plan of trying me with some meds as im outa ideas lol !!
i have added her on the doctor list if anyone is up my way Hull , East Yorkshire , UK
 
Hi everyone sorry I haven't replied, I got out of hospital as thanks to all your fab advice I realised they will never change their mind about me. Nothing's changed but I've seen a private GI consultant who wants all my test results and is ringing my GP. However I have no hope here as he will just hear the poisin that they have filled him with(the GP). He has requested I have a casual endoscopy ASAP so the waiting list is approximately 6 weeks am I know this may not seem long to some people but right now 6mins feels like a life time. My kidneys seem to be failing but they ignored that too, I'm getting that followed up too.
I have such respect for everyone who has been through this and I wouldn't wish it on anyone.
I will never trust a doctor again and now due to the damage I will never have my life back again. I'm still praying god will take me just to end the pain.
I feel no connection with anyone in my life anymore. People say they understand but they have no idea.
Thank you all for your support this means more than you will ever know.
Xxx
 
Hi all

Sounds like folk are all going through the mill at the moment.

Gabi - at least you have an endoscopy in the pipeline. Granted, it's not as fast as hoped, but at least if they're doing that they do realise something is the matter.

Allie - sucks they didn't cast you as Elle... that's a bit of a blow! I never can tell how these people make up their minds when casting roles. Seems a bit hit and miss if you ask me. I hope you're getting your injury seen to. Hospitals suck, but infections suck more! I learned that one the hard way when I cut my foot open on a rock kayaking and then ignored it, thinking it was just a scratch - then ended up with full blown blood poisoning whilst I was on holiday in Spain. The one worse thing than being in hospital is being in a hospital where nobody speaks the same language as you, haha.

Stacey - what food intolerances do they think you have, and do they mean intolerances or allergies. I was reading about this and there is a substantial difference. At least you are getting to see a dietitian who can hopefully help you a little more. My friend in the UK saw a dietitian after having a lot of issues with her stomach. Started off on a really really bland diet with lots of supplements to repair the damage that was done to her stomach by a nasty infection. Now she's SO much better, doesn't need the supplements and can eat most things. It's amazing what an infection can do in terms of damage, it took her a whole year or more to get properly back on her feet in terms of diet and to put a little weight on (she lost HEAPS).

I hope everyone else is getting on OK, or at least getting somewhere closer to feeling better.

I got my blood results back today (they turned them around in 24hr! I'm used to the UK where it takes at least a week). They said that my B12 is very low so want to investigate that further, and the blood test for coeliacs came back as being positive. Wasn't expecting that one, so it's a bit of a curve ball. Those were just the things that jumped out at the nurse, but she's made me an appointment for me to see the GP on Tuesday next week (it's bank holiday over here).

So now it's a case of just waiting for a GI appointment and seeing what the doc says on Tuesday.

Heather :)
 
Hi Heather

they think its Lactose W&G, i have cut them all out but still have symptoms however iam sleeping better only getting up once insead of every hour or so and BM are a lot less so thats an vast improvment gone from 10-20 times a day to 3-5 times a day
i have stitch like pain in left/right side under rib cage and lower abdomin pain constantly
almost as if i have all the pain of needing a BM but no stools so no relief

so wait and see what happens see if this lady can come up with something else as i am very open to suggestions and help

Gabi
So good to here from you hunni, glad your getting some care and i wish you all the best
xxxx
 
Gabi said:
Hi everyone sorry I haven't replied, I got out of hospital as thanks to all your fab advice I realised they will never change their mind about me. Nothing's changed but I've seen a private GI consultant who wants all my test results and is ringing my GP. However I have no hope here as he will just hear the poisin that they have filled him with(the GP). He has requested I have a casual endoscopy ASAP so the waiting list is approximately 6 weeks am I know this may not seem long to some people but right now 6mins feels like a life time. My kidneys seem to be failing but they ignored that too, I'm getting that followed up too.
I have such respect for everyone who has been through this and I wouldn't wish it on anyone.
I will never trust a doctor again and now due to the damage I will never have my life back again. I'm still praying god will take me just to end the pain.
I feel no connection with anyone in my life anymore. People say they understand but they have no idea.
Thank you all for your support this means more than you will ever know.
Xxx
Click to expand...

Hi Gabi good to hear from you. Unfortunately when you have that sort of 'diagnosis' on your notes it can be difficult to shake it off, much like UnXmas said. I was in inpatient last year and my GI had me evaluated by a psychiatrist who insisted I must have been abused as a child but just repressed it. When I was discharged I saw a psychologist for a year who eventually wrote to all my doctors saying it wasn't psychological and they should sort it out. You might want to consider something similar. Apparently if you have this sort of thing on your notes it can affect insurance claims and cause havoc!!

Did they do any testing in hospital?

How is your new GI? Does he have a plan? Does he seem quite sympathetic? One of the best moments for me was seeing a new GI and have him look me in the eye and say 'I don't think this is all in your head'. He had seen my previous notes and wanted to make it clear he didn't agree with the previous implication it was psychological!!

Hang in there!
 
Oh Gabi, I hope you can somehow get that endoscopy sooner than 6 weeks! Can you go to another hospital in the meantime? The kidney failure thing sounds very serious, I hope that gets addressed immediately too! How did they determine that your kidneys may be failing, was it through bloodwork? Do they know what's causing it?

As for feeling hopeless, please don't give up on life hun. I know things look very bleak now but surely you can get some quality of life back once they actually give you some proper treatment. If it were me, I'd go to a different hospital and beg for help. Kick and scream if you have to! Don't let a few bad doctors make you give up on your life altogether. I've had some very dark thoughts too about wishing for death during the worst of my illness, but - and maybe this is just me - I'm an atheist and I don't believe there's any type of afterlife/heaven/whatever. This life I have now is all I'm reasonably sure of getting, and I don't want it to be over with soon or while I'm still (sort of) young. No matter how bad things get, I know it can get better too, and this is the one and only shot I've got at it. And admittedly I was never as bad as you describe, but I was bad, and I clawed my way into remission and things are so much better now. So please, don't give up. It can get better, remission is possible, and life is worth living. I hope you can get some relief from the pain and see some light at the end of the tunnel very soon. Please continue to update us on how you're doing, we're all very worried about you! Sending you a big gentle hug. Keep fighting!
 
gabi i have just been reading some of your posts , stick with the guys here they are super support keep posting and try and keep strong , wish i could do more . big hugs xx
 
@gabi - so glad to hear from you! please hang there - i really hope the colonoscopy will provide answers for you. we are all here for you. you can vent as much as you like - and dont forget that all those who have been diagnosed... where all once in an undiagnosed situation. and we're your cheerleaders to help you through the tough road to getting that diagnosis (whatever that diagnosis may be) xxxxx

@fosterschick - its so good to see that your new GI is really good :) its strange how you can have visual inflammation.. but biopsies are normal (thats exactly what happened with me) there is obviously an inflammatory bowel disease going on.. but it may not necessarily be Crohn's if you know what i mean?

@lsgs - its weird how the steroids wont help... i think star had the same reaction and it actually made her worse.... you are just really tough cases to crack!

@allie - im so sorry you didnt get the role of Elle :( how are you feeling now? did you end up going to the ER? i also hated the constant hungriness while being on pred..

@stacey - counting down the days to the dietician appointment! just gotta keep plodding through the appointments - do what they ask, and when it doesnt work - then they have no excuses if you know what i mean?

@heather - good luck with the GI referral, make sure you take your list of symptoms with you (although your gP will probably put majority of that on the referral letter).. given that you have the celiacs test being positive.. they may ask you to try a gluten free diet for a while before having anymore tests. however, having said that - there's no point in delaying things.. and the obvious first tests to ask for are the endoscopes. i forgot to ask - which area of your stomach do you have pain? because if its central around your belly button.. then a pill cam is the best way to go. anyway.. keep us updated! :)

@cat - how are things for you lately?

Ive got my rheumy appointment in the morning.. dont really know what he's going to say now that he knows the steroid injection worked - i have intense aches in my right arm and hip.. so dont know if he'll prescribe any meds.
im still suffering with that rash i was telling you guys about. it doesnt itch as much anymore, as the stronger antihistamines have helped with that - though the rash is still there.
 
Hi peeps, just an update after this mornings rheumatologist appointment.
It went really well!!
I didnt even mention my bowels... I just spoke about my joints/skin. It was actually my doctor who brought up the bowel issues... he said he was concerned that I'd never had an upper endoscopy before. He said that its been two years since I had a celiac blood test and advised that celiac is better diagnosed with a gastroscopy and biopsies of the duodenum.

He was very happy to hear that my injection had been successful and suggested i take sulfasalazine with regular blood tests every 3 months.
but im not 100% sure i want the medication... so i said no for now.. and i can change my mind later if my joints get bad again.

what do you guys think? have you heard of sulfasalazine before?
 
Bozzy, I am not very familiar with sulfasalazine but I've heard of it so surely there will be some threads about it in the treatment section. I want to say it's a combination of something and mesalamine (mesalamine is what Asacol & Pentasa are comprised of) so I think it's somewhat similar to mesalamine... I think. Not sure though so don't quote me on that! It is used in IBD though as I've heard it mentioned on the forum before, so it sounds like your doc is definitely taking the bowel issues seriously. If it were me - I'd wait until after the upper endoscopy and see what that says, then I'd probably try the meds. And in the meantime I'd research sulfasalazine to know what I was getting into. Good luck with the endoscopy and keep us posted on whether or not you decide to try the meds!

As for me, I'm doing so-so lately. Pretty stressed at work as I have a lot of new projects and the stress is affecting my bowels. I'm trying to fix things naturally by increasing my psyllium intake bit by bit and that's going okay so far. (If I take too much psyllium at once I get horrible cramping & bloating so I'm being careful not to do that!) As you know, exercise is my go-to for stress relief and I've been working out every day. It's gotten to the point where I'm stressed enough that I've been wanting to work out twice in one day sometimes. I haven't so far, but the urge is totally there. I did a hill program the other day on the exercise bike, felt great for a couple hours afterwards, then felt the stress creep back in and had to stop myself from getting on the bike again. Since I'm actually resisting the urge to exercise at times, my mood has dropped. If I can just get through the next few weeks at work, things should calm down at least a little bit and hopefully I can get back to the point where working out once per day is enough. If I start working out multiple times per day I'm either going to injure myself or I'm going to turn into one of those freakish-looking body builder women. :p Neither option is something I want!

I hope everybody has a good weekend. I am looking forward to a super relaxing weekend by myself (hubby has to work weekends for awhile now because his boss is on a long vacation). I got my oven fixed so I am going to bake something, I want to get some yarn to start crocheting a new blanket, of course I'm going to work out, but mostly I just want to relax on the couch and watch movies and take naps. That sounds sooo nice. :) Anybody have fun weekend plans, or is a relaxing weekend in store for everybody else too?
 
Bozzy the steroids are fantastic for me. They have me on a really slow taper and I'm down to 10mg and doing pretty good. I'm also starting get a bit of confidence back which is great. It's been so nice to have a break from constant pain. Only problem is my face is ridiculous and I'm gaining weight at an incredible rate. My doc talked about sulfasalazine, but he seems to only ever talk about things and never do anything about it lol so I don't know too much about it. I think it's a DMARD used in inflammatory bowel disease and RA, lupus etc. From what I read about it at the time it seems to be quite well tolerated?

I would also wait until I'd had the upper endoscopy. You don't want meds covering up any problems!!

Cat I've never heard of psyllium what's that? I'm not much into all this natural stuff but maybe I should be! Haha. We're planning on taking the dog to the beach today (I know, in this weather we're crazy but it will be fun) and then my husband has booked a nice dinner out. Hopefully I don't let him down. I had my first lunch out with him in a very long time during the week and it turned out ok so hopefully tonight will be too :) Feel like I've got my life back at the moment, long may it continue!!
 
Hi all

I'm a bit down tonight.

Well, a lot really.

Today was OK. Got up, spoke to my mum back home, did a few chores and then went to the shop for groceries. Thought I'd make chicken and corn chowder. Nothing too adventurous, but something.

Anyway, made it later on, it's LOVELY. I used my home dried thyme etc. An hour or so later I felt stomach gurgles. I was so fed up I wanted to cry. No way could I tolerate things running through me again, my backside is SO sore. Anyway I waited a bit to see if it would go away but no.

Short in short, I ended up going to the loo to make myself sick it all up. That is disgusting. I'm disgusted with myself to do that to avoid going to the bathroom so now I'm sat here in tears and my friend saying 'oh you'll turn into a bulimic' like that's what I need to hear. What a mess.

H
 
Im so sorry to hear you are feeling down - we have all been there :hug:
This illness (whatever it is) can make you do drastic things.

just got to look at each step of the journey.. every doctor appointment, every test..and just aim to get past each step. (Rather than looking at a long road to diagnosis) you might get a diagnosis after your 1st colonoscopy!!!

It may be worthwhile trying a low residue diet for a short time to give your bum a rest!
This diet limits fibre and worked wonders for my big D when i was in hospital last year.
so you cant have fruit or veg... or brown bread. so you can eat cheese, eggs, pasta, potato and meats

hang in there xxx
 
@lsgs - just re-read your post about the steroid shot... i read it wrong haha! Thats great it works for you! - this adds weight to your illness being an inflammatory problem
i think your right about the sulfasalaziine, and just like you and cat have said - im gonna wait for the gastroscopy before going on the meds. :)


@cat - i would love to picture you as a body buider haha! Theyre mental! And im worried you are becoming addicted to exercise ;) :hug:
 
Aw Heather, sending you a big hug, poor thing. A couple things came to mind when I read your post - first of all, that chowder does sound lovely, but also dangerous. Corn doesn't digest for people with normal digestive tracts so you might want to try avoiding it! Also, if the chowder you made was cream-based, stuff like that just kills me. I'm not sure if it's the dairy or the fat content or what but I would do badly with that chowder too. Have you nailed down what your trigger foods are, or does everything affect you pretty much equally? You may want to try an elimination diet and see what you can and can't do if you haven't already.

Also, you said your backside is super sore. I'm not sure what's available there in NZ, but a good cream should help immensely. I prefer Calmoseptine and Tucks personally but not sure if those are available where you are. Have a look around the stores there sometime and see what you can find. When I go too much I get really painfully sore back there too so I can totally relate. If you can find some moist flushable wipes, or at least some really cushy plush toilet paper, that'll help too. Hang in there!

Bozzy, I'll never look like one of those bodybuilder women. :p I like junk food too much for one thing! Ha ha. And I think those women spend like all day every day in the gym whereas I work out for an hour max each day. I hit the gym really hard today, just beat myself up, and was so tired afterwards I felt too weak in the legs to walk the dog. She's not getting walked tomorrow either as we're getting a bad storm - a bit of snow but also ice and they're saying we could lose power if the ice gets on the power lines too much, so it could be bad. But I'm not going outside in that! So I'll ride the exercise bike inside. ;)
 
heatherb said:
Hi all

I'm a bit down tonight.

Well, a lot really.

Today was OK. Got up, spoke to my mum back home, did a few chores and then went to the shop for groceries. Thought I'd make chicken and corn chowder. Nothing too adventurous, but something.

Anyway, made it later on, it's LOVELY. I used my home dried thyme etc. An hour or so later I felt stomach gurgles. I was so fed up I wanted to cry. No way could I tolerate things running through me again, my backside is SO sore. Anyway I waited a bit to see if it would go away but no.

Short in short, I ended up going to the loo to make myself sick it all up. That is disgusting. I'm disgusted with myself to do that to avoid going to the bathroom so now I'm sat here in tears and my friend saying 'oh you'll turn into a bulimic' like that's what I need to hear. What a mess.

H
Click to expand...

Really sorry you're feeling like this :( How are you now?

Don't be disgusted with yourself, it's not your fault. Pain can drive us to do funny things! You are living with such horrible symptoms it's not surprising you want to do something, anything to relieve it. When I was admitted to hospital last year I was SO embarrassed my stomach was covered in bruises from me pinching my stomach and essentially self harming! The pain was so bad the only way to get any relief was to pinch my tummy which distracted me from it. I was mortified and of course everyone wanted to examine me didn't they! But pain/illness drives us to do these horrible things. Please don't feel disgusted with yourself you are dealing with something so horrible, it's not your fault.
 
Looks like I killed this thread haha!

Hope everyone's okay :) Has anyone heard from Gabi?

I'm off to see my old GI today, my new GI and rheumatologist insisted I should go see him. Wonder what he'll think about having me evaluated by a psychiatrist now after being steroid responsive, having a high calprotectin and generally being reasonably well for the first time in years under his 'care'?! haha!
 
No worries, lsgs, sometimes the thread just goes dormant for a bit every so often. You didn't kill it, it was just taking a nap. ;)

I'm here but busy. Work is crazy! I'm also on my time of the month so the guts have been quite crampy due to that and stress. I'm still working out daily - weights yesterday, cardio today. I'm hoping to do weights tomorrow but we're supposed to get a snowstorm so I hope the roads are okay so that I can make it to the gym. I'm also hoping that the snow deters everyone else from going so that I can have the gym to myself, ha ha. :p Other than that, I'm doing so-so. I haven't been sleeping well at all, I think I've been taking amitriptyline for long enough now that it isn't as effective at knocking me out at night like it used to be. It still prevents my migraines though so I'll stick with it. But I just cannot turn my brain off at night lately. I'm exhausted!

lsgs, good luck with your appointment - keep us posted on what happens and what your GI says!
 
What an interesting appointment! He is like a different guy honestly because there is now concrete evidence of something physical wrong rather than 'just' IBS. I certainly do know how to make a GI squirm!

He's keen to get me on aza, he thinks it's safer than steroids whereas my rheumatologist is saying the opposite. He said my blood results were really significant in that they showed the inflammation, showed the steroid response and showed it wasn't related to my liver disease. This seemed to be very significant information to him. He said I should continue my taper to 5mg, he'll review me again and between the three of us we'll decide whether immunosuppression is right for me and in the meantime I have to do some research into it, so you'll probably see me spamming hell out the boards lol.

He said it's unlikely to be serositis as one rheumatologist thought as that doesn't normally cause D. He said there is definitely inflammation in the small bowel but they just haven't caught it on a test yet - he said 'you don't have typical crohn's or colitis' which I think means he is thinking IBD but I'm a tricky case to diagnose. I don't know. He kept saying how complicated and difficult the case is. He thinks the MR enteroclysis which I am REALLY not looking forward to and tbh was trying to worm my way out of today probably won't show anything and then they will just immunosuppress. He has also been astute enough to realise I need a DEXA scan which I was worried about when the rheumatologist hasn't.

He was so attentive, caring and interested today. What a change! What a relief!

I'm finally getting somewhere, it feels really, really weird.
 
lsgs, that's great that your GI is suddenly taking you seriously! My GI was similar, I could tell he cared and he told me that he knew my pain was real, but he's so "by the book" and nothing was showing up on tests, so I could tell that he didn't really know what to do with me. Then I tried a short trial of pred (it was prescribed by a different doctor) and I responded so well to it and my GI took that very seriously. He put me on Entocort as it's milder than pred (he didn't feel comfortable putting an undiagnosed person on such a harsh med like pred) and Entocort got me into remission. My GI still says he can't officially call it IBD but he treats me as though I've got IBD. My GP has thought all along that it's IBD but he can't make an official diagnosis because he's not a specialist. Anyway, I'm rambling again - long story short, I can relate and have been through similar. I'm still undiagnosed but remission is good so I can't complain. That's great about your appointment! Feel free to spam away about aza and immunosuppressants, we don't really know much about that stuff in this part of the forum but definitely do check out the Treatment section and see what you can find out.

Speaking of my GI, I have an appointment with him on Thursday. We're going to discuss the results of the upper endoscopy that I had in November (apparently it found a hiatal hernia but no barrett's esophagus) and we'll discuss my Nexium dosage since I didn't do well at the double dosage, and I'm also going to inquire about possibly switching from Asacol to Pentasa since the Asacol doesn't always break down and sometimes passes undigested. Asacol still works pretty well, but I don't like seeing undigested medicine in my stool (it's the full tablets too, not just the shell). My theory is that I'll still do okay on Pentasa. Just my educated guess, but since my main "IBD-like" pain is in the LRQ, I think I have it in the terminal ileum. Asacol works on the TI and the colon. Pentasa works on the small intestine including the TI. So either way, my TI is covered and theoretically I should do well on either med. The fun part will be convincing my GI of this theory though! Sometimes my appointments with him are really good and he listens and does what I ask, and other times my appointments suck and he tries to take me off my meds altogether or does a poor job of listening to me. So we'll see what happens, it'll be interesting. Wish me luck!
 
Hi all,
Just wondered if anyone else has had anything like this.My daughter is 13 year old and had joint and skin problems for years . Also had a really bad rash all over the body that was like it was moving doc said vasculitis, also a large lump appeared below the knee that wasnt sore . Also had problems with her vision, tingly hands and feet, feeling that her bowels have moved and havent just now and again, tummy pain, feeling weak and tired. My daughter can go long periods of time feeling well. Doctors did a fecael caliproctine test in March 2012 and again in Sept 2012 level 227, they have just done camera up and down and biopsys all came back normal he said alot of red spots blemishs. Also just done a bowel MRI but no results yet, but the doctor is quite sure crohns wont be in small bowel as he said would have spread to colon that they have checked. Also her ANA bloods have been 624 for a number of years . The first time we saw the doctor he told us fecael caliproctine can only be raised from crohns or colitis . when we got the results of colonscopy normal he then said can be raised by cold or sore throat etc, i didnt like to challenge and say you told us before it can only be raised by crohns or colitis. can anyone help?
 
Well I went for my scopes, top and bottom today! They have now moved from a working diagnosis of ulcerative colitis to is looks like Crohn's. I'm now continuing pentasa while flaring and waiting for the imuran to kick in. Anyone have experience with imuran? So far the only positive I see is that it's cheaper and not pentasa which doesn't work.
 
Hi kathleens.. welcome! Sorry to hear your daughter is having all those symptoms. im 25 and i experience all those same symptoms.
However.. i have other diagnoses that could attribute to my tingling and vision issues.
i also have a rash... and it moves, disappears and re-appears somewhere new. but im seeing my GP about that again tomorrow. my rash is like little red dots that itches a LOT!

Has she been advised it is a form of EDS the vasculitis?
Also... you can have crohns anywhere in your gastro tract... so thats a load of rubbish him saying it would have spread to the colon..
when does she get the mri results? X


@alberta - i hope the imuran helps... have you had biopsy results from the scopes yet?
I dont have any experience of any IBD meds except prednisolone..
 
Cat -are you on any meds at the moment? My GI said another option was to try to taper the steroids to 0 and basically see what happens. Obviously that would be great but I still have symptoms (manageable symptoms, though) at this dose so I can't imagine 0mg being as good. Although it would be good if like yourself it had kicked it into a kind of 'remission' and I didn't have to bother with any heavy duty drugs. There must be something in between nothing and aza to try :S My GI really put the fear into me on Tuesday, he seemed keen to stress how serious this business all is.

kathleens - so sorry your daughter is going through all this. Have you seen a rheumatologist? Particularly for the ANA result? I'm ANA +ve due to a condition called sjogren's syndrome but it can also be positive in other autoimmune diseases like lupus. Don't let them ignore a high faecal calprotectin just because they don't know what it is!!

Alberta - I'm trying to make a similar decision about going on imuran so I'm keeping my eyes peeled. The negatives/side effects seem so overwhelming at the moment I can't even begin to think about it. Glad your scopes went well! Did they see crohns on the scopes?
 
lsgs, I'm currently just on Asacol (mesalamine) for the presumed IBD. It's a very mild maintenance med - it's not for getting a flare under control, it's for maintenance of remission. There are other similar meds (Pentasa, Lialda) in that family too. They're all basically the same medication but they work on different areas of the digestive tract. Pentasa works on the small intestine, Asacol works on the TI and the colon, Lialda works on the latter part of the colon and the rectum. So depending on where they think your disease is located, one of those meds might work for you. They are very mild drugs though so they don't work for everyone. I'm wondering if your doctors might think your illness has gotten more severe - if so, the mesalamine drugs might not do anything for you and something like aza might be better. You'd have to ask your docs what they're thinking though.

As for steroids, I was on Entocort for 7 months total. The max dose is 9 mg and I was on that dosage for about 3 months. I tried tapering down to 6 mg but the first time I tapered, my symptoms came back so I went back up to 9 mg. The second time I tried to taper, it was successful, and I stayed at 6 mg for about 4 months before I was able to come off the drug completely without symptoms. If you're still having symptoms, ideally your doctor should bump you back up to a slightly higher dose of pred. Steroids are meant to blitz inflammation and induce remission - if you're still having symptoms, you're not in remission yet. Feeling better is good, that means you're heading towards remission, but it sounds to me like you're not there yet.

Kathleens, welcome - I agree with what lsgs said about ANA. Illnesses like Crohn's/colitis do not cause a positive/high ANA - but other illnesses like RA or Lupus can. And Lupus can sometimes mimic Crohn's-like symptoms. Also, what your doc said about Crohn's not solely being in the small bowel? That sounds like BS to me! Crohn's can manifest anywhere in the digestive tract, literally from mouth to anus, and sometimes does appear only in the small intestine. You might want to think about getting a second opinion from another doctor, and I agree that it's a good idea to see a rheumatologist. Good luck to you and your daughter!

Alberta, what did they see on your scopes that made them say it looks like Crohn's? I'm glad that it sounds like you're getting closer to a diagnosis anyway! Will they make it official based on the biopsy results? I don't know much about Imuran - I believe aza (azathioprine) is the same thing, that's what lsgs might be starting too, so hopefully the two of you can come up with some info about it.

I'd write more but I have to head to the GI in a few minutes! I always get so nervous before going to the doctor so my guts are in a knot right now. Wish me luck!
 
thanks all for getting back to me . Just hope one day we get some answers. Has any one had a fecal caliproctine test done but biopsys clear?only medicines she is on is omprazole.
kathleen
 
Isgs and Cat- my dr didn't talk to me after the scopes just left a bunch of paper work with the nurse to go over and send home with me when I came out of sedation. All it said was the gastroscope was clear and the colonoscopy looked like Crohn's. here is some other drugs and increase the prednisone again and start tapering after a week, flagyl and Cypro too. The nurse said it won't be official until the biopsy results come in. I decided to start the imuran because at this point something has to give and what I was on wasn't working and the flare was increasing since I was discharged from the hospital a month and a half ago.

Hopefully everyone else is doing ok.
 
kathleens- I am so sorry to hear of you & your daughters troubles. Being undiagnosed sucks!

There is an excellent section of the forum called Parents of Kids w/IBD, which sadly includes undiagnosed children. They are amazing and should be able to offer you better help there :)

If I have one tip for you, it is be assertive. Question and question the drs, see someone else if you feel they are talking bs. Sadly when you are undiagnosed one has to be very proactive.
 
I'm here. SO glad that it is Friday afternoon, I am burned out! I am looking forward to a restful weekend of doing nothing. I always have dark circles under my eyes but I swear they are worse lately. I did manage to sleep well the past couple of nights, but work is still stressing me a lot. A glass of wine and a hot bath are in my near future. :)

Alberta, I'm surprised your doc didn't talk to you after your scopes. I thought GIs were supposed to do that? My GI always talks to me after my scopes. In fact, after my first upper endoscopy, I have fuzzy partial memories of getting dressed and being driven home. When I got home and was slightly more lucid, I complained to hubby that my GI didn't talk to me after my scope. Hubby was like, "What are you talking about? He talked to you for awhile, you seemed coherent so I thought you would remember that!" Nope, not at all! So because of that incident, with my more recent upper endoscopy, I told my GI that I have no memory of talking to him after the first one and that he should please wait awhile and make sure I'm totally coherent before he talks to me afterwards! My GI is a pretty serious guy most of the time but he laughed at that and he did wait awhile - I remember talking to him after that scope. Anyway, I'm totally rambling. My brain is fried I think. :p Sorry if I missed seeing it, when do you get the biopsy results? And if I read that right, if they're positive for Crohn's then of course you'll be diagnosed - but what happens if the biopsies are clear? I hope you get definitive answers of course, but with this type of illness it seems to me like nothing is ever black & white 100% clear-cut. Anyway, please keep us posted on when you get the biopsy results - as I've said before, I will never kick anyone out of this club, but I hope you get to "graduate" and get diagnosed!

Hi Star, how are you doing lately? I remember you had gotten a promising letter that your rheumy had written - any progress with that?

As for me, I'm still working out a lot. Not sure if I injured myself or if my arthritis is spreading or what. I have had some recurring lower-back pain lately. It's weird too because I can go for weeks without feeling it and then suddenly it'll be back out of nowhere and will stick around for days, then be gone again. Then the other day I had some upper back pain too. I just kept continuing to exercise as usual - I figured if it was an injury, it would get worse with exercise, right? It seems to get a little better with exercise which is why I'm worried about arthritis, because my current arthritis (right hip) also feels better with the right kind of exercise (anything except for jogging). So I don't know. I see my GP in a couple months for my yearly physical, so I figure I'll ask him about it if I'm still having these back pains then. I really don't want more arthritis though so I've been kind of depressed thinking about that. I really hope it's not arthritis.
 
Cat- nope, my GI didn't come, I even asked the nurse when I was more lucid and she said that my dr. Doesn't do that. I will let you guys know when I get the results. I agree with you on the feeling burned out. I'm so glad I can just sleep tomorrow. Hope you feel better soon.
 
lsgs said:
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!
Click to expand...

Stupid doctors I hate them all!

That's EXACTLY how I felt with the hunger -- still hungry while eating!! haha That's hilarious. Sorry for the late response, i missed this post somehow.
 
The letter was for my GP to arrange Pain Management and Chronic Fatigue management referrals. I will ring them in a week or two to see if anything has been done.

With the waiting lists I doubt I will even have been seen at either when I see Rheumy again in 6 months. I really wanted to have done them and failed to get him to look at medical side/testing again :(
 
You know, I just realized I forgot to say how my GI appointment went. :p It went really well, he's keeping me on Asacol for now and is bumping up my Zantac to see if that'll get the reflux under better control while still allowing me to digest my Asacol. I think it's a good plan. If it doesn't work then he'll try me on Prevacid instead of Zantac, and if I still can't digest my Asacol then we'll try either Pentasa (what I'm leaning towards) or Lialda (what he's leaning towards). He also explained that my hiatal hernia is small and "sliding" as opposed to "fixed" (in other words, it's not always active I guess) so it shouldn't be causing such awful reflux. But because the hernia is so small and fairly insignificant, both my doc and I agree that it would not be a good idea for me to have surgery on it anytime soon. That's a relief because I wasn't super enthused about the thought of surgery. So yeah, it was a pretty good appointment. He listened to me and we came up with a plan, I like when appointments go like that.

I hope everyone else is having a good weekend and getting lots of rest. Big hugs to all!
 
Good Afternoon My Lovelies

Just got back from the Dietitcian and she has put me on a complete exclution diet
thats no weat glutine diary basic
after having a terrible few days in tears this morning as almost messed myself on the way to work been a loo about 6 time already
she believes that im far more serious than food intolerence and JUST IBS as my weight loss and symptoms are way more than those of a IBS and intolerence
so i have to do this exclution diet for 4 weeks then she along with my GI will put me through for more testing as she is learning more towards all the symptoms of CD
so hopefully this new diet will relieve me of some of the more painfull symptoms fingers crossed

hope everyone is well

loads of love

Stacey
xxxxx
 
Stacey, I hope the diet goes well, and that's good that your dietician is taking you seriously and knows that this has to be more than IBS/intolerance. Any idea what testing is in your future after being on the diet for 4 weeks? Have you had the pill cam yet? That would be the one I'd ask for if you haven't already had it, it can see the entirety of the small intestine. Anyway, good luck with the diet and keep us posted.

As for me, I'm feeling blah. Work is still crazy and the weather has been bad and I just feel kind of down. My guts are still so-so, increasing my psyllium dose didn't seem to do much.

Oh, I'm remembering an older post now - did somebody ask me about psyllium at some point? I think I forgot to respond to that. Psyllium is soluble fiber - it's what's in Metamucil (although Metamucil has a lot of chemicals/additives so I take pure organic psyllium with no additives, as the additives can cause cramping). I have a hard time with fiber but I find that I can do soluble fiber much easier than insoluble. Psyllium helps bulk my stools and helps me "go" less often and I swear my menstrual cycles have even been easier to deal with since I started taking psyllium. If anybody else is interested in it, there's a long thread called "Psyllium Husks" in the diet & fitness section of the forum with lots more info. It's helped a few of us on the forum feel a lot better and it's all natural, so really no side effects (well, if you take too much at once you can bloat and cramp, but that's about it). I currently take one tablespoon of psyllium daily (mixed into a big glass of water) and it does me a lot of good. Apparently it helps regulate the bowels no matter what you tend towards, too - if you're like me and tend to have diarrhea, it firms things up, and if you tend towards constipation, it helps move things along. It's one of those wonder-remedy things that nobody really knows about. Anyway, it works really well for me. Yay, psyllium. :)
 
Yerh Pill Cam and endoscope

thinking there could be something to do with the stomoch

so just have to crack on with this diet and hopefully get some kid of relief

fingers crossed

Thanks Hun

xxxxx
stacey
 
sorry for not being on lately - been so busy with my little girls' birthday (and other toddler parties)

@Stacey - thats great that they want to do a pill cam and a gastroscopy - annoying you have to do the diet stuff first.. but like i've said before - do what they ask, and if it doesn't work - the doctors only have themselves to blame lol!! good luck!

I had more blood tests this morning along with my first smear test *shudder* (sorry for any men reading this lol) I had to take my daughter to my friend's house, so I could go to my appointment.. and boy was it snowing loads!! I swear that pushing a pram through thick snow is the hardest exercise i've ever done.. i must have lost 10lbs just doing that haha!!! (so Cat,, any kids in the pipeline, I recommend what I did as good exercise!!!)

anyway, my rheumy gave me my blood request forms to take to my GP's and have a nurse do it.. because I wouldnt let them take blood at my rheumy appointment as i felt too week and sure i would have fainted.
I looked on the forms and they are doing coeliac tests again (last 1 was 2yrs ago) and obviously CRP and ESR. he has written on the forms:

*polyarthritis
*possible IBD - diarrheoa and bowel sx

so should get the results next week..

hope everyone is doing well? again, sorry for not being able to reply to everybody xx
 
Stacey, I'm glad too that you're having the pill cam and endoscopy done. Make sure they take lots of biopsies during the endoscopy! They can test you for celiac using those biopsies - you have to be eating gluten/wheat around the time of the test though, so you might have to go off of the new diet for a bit just before that test. How's the new diet going so far? Oh, and I like the new profile pic too. :)

Bozzy, I'm 33 and still not quite convinced that I want kids, ha ha. I don't mind older kids but frankly I just do not like babies! So much grossness coming out of such a tiny package - drool and snot and puke and poo and pee and germs and who knows what else, yuck! But no worries, as you very well know I get lots of exercise anyway. ;) I hear you on the heavy snow though. We've gotten a lot of snow here lately and I had to walk my dog in it over the weekend. I was wearing big heavy boots and trodding through the park and the paths hadn't been cleared so the snow was very thick & heavy. Of course my dog loved it and she was running all around, while I was huffing and puffing and sweating the whole way! I will never understand how a corgi, whose legs are like 4 inches long, can romp through the snow for hours and go much faster than I can! :p

That's really interesting that they put possible IBD on your paperwork - I thought awhile back they had decided that it's IBS? Also, I'm not sure what polyarthritis is - is that something related to your hypermobility? Let us know how the blood work goes. I'm a bit surprised that they're re-doing the celiac blood test, as that test is known for not being very accurate at all. You've had an upper endoscopy w/ biopsies, right? That test is much, much more accurate for celiac.

How's everyone else today? I'm doing a bit better, for some reason I felt depressed yesterday but am doing better today. I'm tackling work projects one by one and feeling somewhat less stressed about all that, although I have a big meeting to go to tomorrow and I'm not looking forward to it. The weather has been snowy pretty much every day which is making my arthritic hip unhappy. I took a rest day from the gym yesterday, didn't do any exercise at all (see Bozzy, I am capable of not working out sometimes! :p ) but I feel stiff today, I seriously think my body doesn't want any more rest days. I ate some potato chips yesterday too and felt massive brain fog afterwards! I hadn't pigged out on junk food in a little while, it's strange how much it affected me. So I'm trying to eat healthier today. I had cottage cheese and blackberries for my snack (oddly neither one affects me even though I'm lactose intolerant and can't do most fruits!). Anyway, I hope everyone else is doing okay, big hugs to all.
 
That is very true about the amount of grossness that comes out of a tiny baby haha!

The IBS diagnosis was my gastro and GP. its my rheumy that thinks possible IBD - my rheumy was concerned that i'd never had an upper endoscopy..so he actually referred me for a 2nd opinion with a new gastro! so i think he's just ordering the celiac blood test to go with a potential upper scope...

I think polyarthritis is rheumatic arthritis (ie rheumatoid, psoriatic, sapho) that affects >5 joints
Im not 100% sure though..

i think my rheumy is wavering from the SAPHO diagnosis as potentially could be IBD arthritis instead haha.. but for now.. at least i have something to work with you know?

Ps: MY SISTER IN LAW IS PREGNANT!!!! SO SO HAPPY.. THEY HAVE BEEN TRYING FOR 3YRS along with fertility treatment (which didnt work) and now its happened naturally! Eek!
 
Morning everyone

i need some advise im on this eclustion diet only started Monday but yesterday i had salad with some tuna for my lunch and since yesterday afternoon i have had extream neausa to point that all night i have been throwing up, ive only had a couple of hours sleep, ive got really bad cramps and keep going hot/cold
all im doing now is gagging and still really bad neausa is this normal with a complete excultion diet or could i have pick up something as i have eaten nothing since yesterday lunch time and even water is making sick
feeling like crap and at work
xxx
stacey
 
Sparkle2012 said:
make sure they xray you after to determine it has left your body (unless you see it!). Important! :)
Click to expand...

This worries me. I had a pillcam 2011 and never saw it leave. I'm due to have an MRI shortly, just waiting on the appointment, and I'm wondering if I should tell them as I'm presuming it's got metal in it :O

bozzy, why is it that rheumatologists are often the only ones to take any action? They're a different breed to gastros IMO, much more empathy and genuinely want to help. Hopefully your new gastro will have some answers. It certainly worked for me having a second gastro.

Stacey, that certainly doesn't sound like anything to do with an exclusion diet. I've done them myself and they shouldn't make you feel ill. It sounds like a bug you've picked up personally. Also I think it's pretty daft to put you on an exclusion diet then scope you, make sure you're back on gluten for a period of time before you get scoped!

I'm starting to flare a bit being under 10mg pred :( Getting a little more pain after eating. Nothing I can't cope with and still a damn sight better than I was before I started pred but it looks like I'm going to be pushed down the azathioprine route if I can't stay well. Not even getting less side effects, tremor is back and still piling on weight, I am getting way too big haha!

Anyway, I'm off to walk the dog. Let's hope my guts behave themselves :p
 
@lsgs - i have noticed this too about rheumatologists. he is the best doctor ive ever had! Really takes his time to listen. i also find that rheumatologists aren't afraid to try medication without you being diagnosed.. which is good. because how you react to the meds can help to diagnose!

@stacey - i agree with lsgs - though ive never done an exclusion diet myself. if it lasts more than 5days.. i'd give your doctor a call xx
 
Newbie here. I sure hope I can get some sugestions here. I apologize in advance as this could be lengthy.

My issues started back in 2004 with symptoms of gall bladder. I was vomiting, nausea mostly to start, the bowel symptoms were there but were more in the background. I was refered to a surgeon who said the gall bladder had stones and was diseased and need to be removed. So I had it removed. I felt better for about 3 weeks, then it came back. Still mostly vomiting bowel issues still in background. They did a scope of my stomach and found several ulcers and treated for that. OK so that helped the vomiting but then the bowel issues started getting worse. I know a lot of the meds they give for this treatment can cause bowel issues, but this was not the cause.

I have had several scopes of my colon, the first they did find polyps and removed them. I have had several blood tests also, I feel I have been poked and prodded from every angle at this point.

I have dealt now with the bowel issues since then. I still have flares of my ulcers but I have gotten pretty good at telling when it ulcer related.

The bowel issues got so bad that in 2006 I was just not able to continue to work. I have had surgery for hemorrhoids and an anal fissure.

So far to date I was given the diagnosis of IBS but was told that was a garbage pale diagnosis and it may or may not be that. That was in 2008

2010 still suffering from the same symptoms but now have added severe joint pain. Along with what seems like menapause symptoms, of night sweats, low to no libido, irregular cycle, and mid section weight gain.

Things I have noted through the years. Whatever this is, is not triggered by food. What I mean by that is if my symptoms are flared up it doesn't really matter what I eat I am going to have issues. I can eat something while I am having a flare and it just tear me up but I can eat the same thing when I am not having a flare of symptoms and be fine. I have also noticed that these symptoms get worse a week before the week of and the week after my cycle. Now that is not the only time I can have a flare of symptoms but it does get worse.

I have seen several GI doctors in my area. I say this as if I see a doctor and am treated like I am a nut case, or it is in my head I will not go back to them. I am not going to waste my time trying to convince a doctor that what I am telling him is true. Also if he doesn't believe me then he isn't going to do much to help me. I am done being treated like this.

So far the only test I have that have come back not normal was my progesterone level was extremely low. Which I do have pre menapause symptoms, I am 43 and so far all the ob/gyn doctors keep telling me that I am too young to be experincing those symptoms. Another frustration of mine....anywho.....the other test result that has shown up was on 3 CT scans that shows "mild thickening" of the walls of my colon. To date the only thing I can find about what could be causing this "thickening" is crohn's.

I have been given just about every prescription out there for IBS including low dose of anti depressants with no relief. So far the only thing that seemed to make a differnce is the 3 times since 2010 I was given a steriod to take once for swelling in my knee, and twice for headaches, which they said they were giving me for swelling of the brain. While I was taking the steroid, which was only for a week at a time, I had no symptoms but shortly after finishing the prescription the symptoms came back. I have made mention to every doctor I have seen about this and they all seem puzzled as why this would make a difference.

The last doctor I seen was an internest. My concern was when researching I was seeing so many things that a GI wouldn't be looking for. So I was tested for lupus and even cushings. I no longer see this doctor because of office policy due to being 5 min late to an appointment due to car trouble and once again being late due to my health issues. Anyway my last appointment with this dr he told me if this was IBS it was the worst case he had seen but he felt that all of my symptoms seemed to indicate Crohn's but so far the blood work did not support that. But he did feel it was more of an inflammation issue.

In 2010 I finally applied for SSI disability. With the help of this last doctor I won my case after a hearing. While this helps some with the lost wages from not being able to work I would much rather someone give me the correct diagnosis and hopefully help manage it so I could go back to work.

After 8 yrs of being treated like a nut case by most all but this last doctor I became completely frustrated and completely gave up on doctors and have just been suffering, if it gets so bad I go to ER.

I have decided though that this is not something I can just give up on. So I have made an appointment with Cleveland Clinic and have an appointment March 4th with a Dr. Su.

I have a few questions for everyone though.

1) Does anyone else experince worse symptoms around their cycle?

2) Does anyone else have symptoms of hormone imbalance and/or these symptoms seen in Crohn's?

3) Has anyone been to Cleveland Clinic for these issues? If so how would you summerize your experience?

4) Is there something specific I need to ask or inform this doctor at Cleveland Clinic that may help?

I thank every one in advance for any help of advice you may be able to give.

Oh I forgot to mention this I have noticed too that since this started my stool has went from regular or normal size to pencil or smaller in size. I haven't seen any information about this and was wondering if anyone also experinces this or could maybe tell my why?
 
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Hi kimberley,

Really sorry you're going through all this. I feel your pain on being told it's all in your head, I've been there many a time and it is so frustrating!

What blood tests have you have done? Did you have any raised inflammatory markers like ESR or CRP? Have you had a faecal calprotectin stool test done?

Have you had a colonoscopy done?

I have personally never noticed a correlation between my cycle and symptoms but from reading on this website, a lot of people do.

I think the fact your symptoms are relieved by steroids is quite important as it shows there is definitely an inflammatory component to whatever it is you are experiencing. It really frustrates me that a doctor wouldn't realise that, it's not rocket science! If steroids help, it's not IBS!
 
Hi kimberly! And welcome to the group.

Im so sorry to hear you are having a rough time. many of us here have experienced similar to you - so you have definitely come to the right place!

In answer to your questions, here goes:

1)YES!! My bowels are definitely worse during my period :(

2) i have not been tested for formone imbalance.. might be worthwhile posting in the females/obgyn section?

3) i am in the UK so cant help with the cleveland questions :(

4) have you ever had a pill cam? That could be a good thing to request. Which blood tests have you had? CRP and ESR are inflammatry markers.. and not everybody shows a response to that (i certainly dont!) Have you had vitamin D and B12 checked?

All i know is.. dont give up! It may not be crohns.. it could be something that mimics it etc.. but you dont sound like you have IBS xx
 
hey insensitive remark of the day from co workers that know how poorly ive been as its a very small close office

Co worker to me
" Morning skinny bitch god you wasting away go have a big mac or somthing you need to eat "

Me to Co worker ( considering that i have been throwing up since yesterday afternoon )
i would love to be able to eat what ever i want and not be sick or in pain and yes im wasting away try to laugh it off

Co worker
How much have you lost and it cant be just your bowel thing what else are you doing

Me
2 stone but thats not out of choice and no nothing else then i burst into tears.
now sitting at my desk wishing the ground would just swollow me up whole as im very very mortified at my waterworks as i am not a very overly sensitive type but hey im tired and in pain
grrrrr insensitve arseholes

sorry rant over

xxxx
 
@lsgs

I have had blood work checking for inflammation however do you have to be experincing inflammation at the time of the blood work cause if you do that may explain why nothing showed up. I know of only being tested once by the internest but at the time he did the test I was not experincing any symptoms. I believe it was the CRP test they did. I have had stool test done really early into this but I think that was looking for gardia.

I have had several colonoscopies done last one was almost 4 yrs ago though.

I have always wondered why the steroid made a difference, I mean I knew there was inflammation in my knees but I don't know why these doctors haven't at least gave me that to see if it really did make a difference. Should I ask them for it? Cause I asked this internest once if during a flare if we could try it and he seem skeptical about wanting to try it. I couldn't understand that as I would think that would give us some indication as to what it was if it did help.

So far everything they tell me at the doctors around here is completely different from what I read about IBS and Crohn's and the differences in them and I have also found this doctor doesn't agree with that doctors description of IBS at all. I was told by one doctor that if I had the nausea and vomiting that it couldn't be IBS just to have another say I could. This has been my frustration and the fact that I don't think they want their patients doing their own research and then asking them about it. I mean sound research. I only read mecial journals, studies, and educating hospitals mainly the one who are leading in the research in such fields. Whenever I mention something I seen or ask a question they just treat me like I spend to much time searching on the internet.
 
Aww stacey!! Thats awful :(
Im so sorry you have had to deal with that.
have you spoken to your boss about it?? Is this co worker your friend and are you able to explain things to them?

I know how you feel about the waterworks.. it can be embarassing but you cant help it when you are exhausted. my boss rolls her eyes everytime i cry.. i hate it :hug:
 
My Boss is also a really great friend and will be great

i work with my hubby and it one of his staff in his department so i think he is going to deal with it

cheers hunni

xxxxx
 
she is back in tomorrow so i grab to one side and explain that those kinds of comments are unwelcome and hurtfull
but at the mo in the mood im in im best to just stay at my desk and keep my head down

xxxx
 
@ Stacey

I know I am a newbie, but hold your head high, I know it can be embarassing but it's not like you can control it until they find out what it is. There is no shame in being ill.

I dealt with this at my job also and was part of my decision to go a head and quit. After trying to work with this for 2 yrs. I was an emergency dispatcher and went to work and was bleeding from the fissure and the bosses wouldn't answer my page to relieve me so I could go to the ER. So I was stuck at work for the whole shift. That's when I decided I just could not ever be stuck like that again.
 
kimberly said:
@lsgs

I have had blood work checking for inflammation however do you have to be experincing inflammation at the time of the blood work cause if you do that may explain why nothing showed up. I know of only being tested once by the internest but at the time he did the test I was not experincing any symptoms. I believe it was the CRP test they did. I have had stool test done really early into this but I think that was looking for gardia.

I have had several colonoscopies done last one was almost 4 yrs ago though.

I have always wondered why the steroid made a difference, I mean I knew there was inflammation in my knees but I don't know why these doctors haven't at least gave me that to see if it really did make a difference. Should I ask them for it? Cause I asked this internest once if during a flare if we could try it and he seem skeptical about wanting to try it. I couldn't understand that as I would think that would give us some indication as to what it was if it did help.

So far everything they tell me at the doctors around here is completely different from what I read about IBS and Crohn's and the differences in them and I have also found this doctor doesn't agree with that doctors description of IBS at all. I was told by one doctor that if I had the nausea and vomiting that it couldn't be IBS just to have another say I could. This has been my frustration and the fact that I don't think they want their patients doing their own research and then asking them about it. I mean sound research. I only read mecial journals, studies, and educating hospitals mainly the one who are leading in the research in such fields. Whenever I mention something I seen or ask a question they just treat me like I spend to much time searching on the internet.
Click to expand...

I would be asking for a faecal calprotectin test. It seems to be fairly reliable in detecting inflammation in the GI tract. ESR/CRP are non specific and can be negative in IBD. So if it comes back positive it just says there is inflammation somewhere in the body, not specifically in the GI tract. Whereas the calprotectin measures it directly. For me, this is the test that has led my doctors down the IBD route when my scopes were negative, as can happen!

Also, do you see a rheumatologist for your joint issues? What do they think the inflammation in your knees is?

What I have learned through my 'journey' of being undiagnosed for so long is that doctors don't know everything, and quite often they are winging it. I used to trust in doctors a lot and take their word as gospel but they have made so many mistakes with my care I question everything. I went well over 10 years having symptoms before it just so happened my usual rheumatologist was off on holiday and I saw another one, and he fired a steroid injection in and did a calprotectin test and it went from being IBS/in my head to probably small bowel crohns! He pretty much said, do you know what this is an experiment we will see what happens. A one off injection won't do much harm. And it absolutely changed my life. So sometimes it just takes an open minded doctor who is willing to think outside the box. Trouble is doctors don't like you doing your own research and if you do, they label you as a hypochondriac! It's an awful cycle to get into.

Sorry I'm rambling now :p

Stacey, I've been there. It is horrible. I looked absolutely horrible at my lowest weight but I still had people (including my own mum and sister) saying can I not get what you have?! A couple of my colleagues last week saw pictures of me when I was super skinny and not fat from 'roids and they said they wanted to get what I have. It's so difficult when you're exhausted and in pain all the time too, it plays havoc with your emotion. Don't worry about crying, if they had to deal with even what half you do...
 
@lsgs

I have not seen a rheumatoligist, when I asked our family doc about the knee pain she sent me to an orthopedic doctor, who reccomended a scope of the knee, so we did that and I will say it is actually worse. They only scoped the left knee and said that it was osteo arthritis. On my follow up with the knee doc he tells me my knee is bone on bone and the only way to fix it is to do a replacement but he wouldn't do it casue I was to young. So I sought a second opinion and same kind of doctor in another town even he did a MRI on that knee and said the arthritis was minimal and I did not need a replacement. As to why I had more pain in the knee since the scope he said he didn't even know why the doctor did the scope to start with if it was him he wouldn't have done it. Since then the pain has been in both knees, my elbows really bad, hips, shoulders just seems like every joint hurts. My insurance doesn't require us to have a referal but here the doctors office requires a referal before they will schedule an appointment. So if my family doctor doesn't want to give the referal I can't get an appointment.

I thank you for the mention of the stool test. I will ask about it when I go to Cleveland

Thanks again lsgs
 
Cheers everyone

ive just gone nuts down the phone to one the guards ( im a PA for a security firm and i also do the wages ) and some rude bloke just got it both barrells

i think everyone is avioding me now i think ill prob go home a bit early really struggling today

i have gone through all of this and scopes without any time off at all and today i ave had enough im now sitting in a shared office with someone eating tuna and its making me feel terrible again FFS

a very fed up and exhausted Stacey
all your support means the world it really does help
xxxxx
 
Well I had my first round of weekly blood tests from starting the imuran. One week in and still feeling mostly crappy, but a little better. I still haven't heard from my gi about my biopsies.

Sorry to hear that everyone seems to be having a hard time of it right now. Hopefully we will all get out of this funk.
 
Hi all

Just thought I'd check in - I agree with Alberta, everyone seems to be having a hard time of it right now. Hugs to all and hope things improve.

@Stacey I'm sorry to hear you're having a hard time with the elimination diet. I've not done it myself, but I can imagine it's not fun and games particularly when you're feeling crappy as it is.

Sorry I've not been around for a while - had dramas of my own in the gut department, and let's just say my birthday was a total write-off. Together with battling with supervisors who just totally don't get it, it's been stressful.

Anyway, I bit the bullet today and went back to the GP after a horrendous few weeks of constant D, feeling hot but having cold sweats at night and just horrendously achey joints/limbs (particularly at night) and fatigue. Once again she surpassed my expectations and has re-ordered another set of fecal specs, together with a referral to a GI on 26th of this month. She took her time picking who she thought was the best GI in Auckland, who is clinical director of a clinic in Remuera in the city. So that's me up to now. Although in general I feel rubbish, I'm optimistic that they'll help me. In no way has she treat me like some of the horrific stories I've read on here... I've been very fortunate in that sense. I guess it really is luck of the draw sometimes (usually I'm horrendously unlucky... so watch this space with diagnosis, it'll probably come bite me in the butt literally!).

Wish there was something I could do to cheer folk up :(

H
 
Somepeople are so F@~King insensitive and bitchy

i cant bloosy anything nice im in pain the chance of actually getting a full nights sleep is a luxury i would kill for, im a frigging woman on the edge tring to keep calm and positive
and the stupid little brat in my office is now standing next to my desk getting over excited ooohhhing and arrhing over a chocolate caramel easter mini egg saying how yummy and amaing it is oh its such a shame that you cant have any
i feel like jumping over my desk and smashing her in the face with my heavy duty hole punch
grrrrrr its bad enough i cant afford to go sick but all i ask is that the food and sweeties are not pushed in my face and go on about it all bloody day

its amazing that the guys in the are so good about not offering me any or going all sexual over the treats but this witch just wants to be an cleaver big girl if i had the energy ill ram the thing down her throat

rant over

sorry guys just needed to vent before i get sacked for assult

love ya all
xxxxx
Stac
 
Wow, a lot of new posts since I last checked in! I'm going to try to quickly respond:

lsgs, if your pill cam was in 2011, no worries, you definitely don't still have it floating around inside somewhere. If it stayed in you, it would have caused an obstruction long before now. I actually had the same concern - I had the pill cam and then I had an MRI scheduled a little while after that. I had never seen the capsule pass so I wasn't sure if it had ever come out, and I was also concerned about having a metal object in my guts during an MRI. I called the nurse and she said that it had definitely come out, no question. They had put in my notes that it had passed. Now, I am acquainted with a couple of radiology techs, and they told me that when they were in class learning to be radiology techs, the teacher once told them that sometimes the final images on a pill cam are of a face looking down into the toilet! And my nurse was adamant that the capsule absolutely had passed, so I'm wondering if I was one of those toilet faces, ha ha. :p But anyway, yeah, if it was that long ago and you haven't had an obstruction, it's definitely long gone. I wouldn't worry. But, if you are still worried, call your doc or nurse and ask them to look over your pill cam notes. It should say if they saw the capsule pass.

Stacey, I agree with the others that it sounds like a bug rather than the diet doing this to you. I read that there is a nasty norovirus (stomach bug) going around lately and it spreads easily, so I would wager that's probably what you've got. How are you feeling today, any better? If you don't improve, if you get worse, or if you get new symptoms, get to A&E right away. Dehydration would be my main concern, so if you get any symptoms like numbness/tingling/twitching of the hands/arms or legs/feet, get checked out right away. Another symptom of severe dehydration is - if you pinch the skin on the back of your hand and it snaps back right away, then you're fine, but if it takes a second or longer to go back, you're badly dehydrated. Hang in there and feel better soon hun!

Heather, you described my flare symptoms to a T - I get horrible night sweats (even if I fall asleep for 10 minutes, I wake up covered in sweat) and all my big joints ache in a flare (usually knees, hips, lower back, elbows, etc) - in addition to all the lovely bowel symptoms of course. I'm no doctor but it sure sounds like IBD to me. I'm glad your GP is on top of things and is getting you more tests and a GI referral - I hope the GI is a good one! Keep us posted, I hope you can get some proper answers out of all of this.

Hi Kimberly, welcome! Sorry you had to join us but I'm glad you found us because we are all in the same boat here. And what is up with being sent to orthopedic surgeons? My GP diagnosed me with arthritis in my right hip, and at first he sent me to physical therapy which helped a lot, but then when I requested a rheumatologist referral, he sent me to an orthopedic surgeon instead. The ortho did nothing - he said he could do a steroid shot in my hip but he felt I wasn't bad enough yet to warrant that - and he offered to refer me back for more PT. So, I haven't seen a rheumatologist either but everyone else here seems to have had good luck with their rheumys. Oh, and in regards to your question #1 - YES my bowels are definitely worse during my period. It was horrible for awhile, then I started taking psyllium husks and things have improved greatly. I still get a bit crampy during my time of the month, but it's a vast improvement over what it was.

Alberta, so you have already started the Imuran? Or you're just having blood work done in anticipation of starting it? In either case, I hope it helps and that you feel better really soon. I hope those biopsies come back soon too and that they are enlightening!

Stacey again... I'm catching up on reading while I'm writing, ha ha. Your co-workers sound really insensitive, I'm sorry you have to put up with such jerks. I'm pretty lucky, I have one co-worker who sits in my area, and he has UC so he totally understands when I talk about not feeling well or not being able to eat certain things. But other co-workers have not been so understanding. A lady in my department set up a big meeting that took place earlier this week, and when she was going over the plans with us, she said "The lunch is beef, if anybody has a problem with beef, well too bad!" Uh, yeah, I cannot eat beef. Even a tiny amount will make my stomach very angry. This lady knows I have tummy troubles and problems with a lot of foods too so I don't get why she was such a jerk about ordering beef and only beef. Fortunately my boss said I could leave the meeting early and go back to the office, so I had a tummy-friendly lunch at the office by myself. So yeah, I totally get it. Some people just enjoy being jerks for some reason, try to put them out of your mind as they're not worth your time! You can only hope karma will come back to bite these people eventually. I don't believe in karma but it's a nice thought anyway. ;)

How's everyone else doing? I'm okay except that my arthritis isn't happy. My hip hates when it snows or rains, and it's snowed or rained pretty much every day for something like 10 days now. My hip is still hurting today even though it's sunny out - it's supposed to rain and snow on Sunday though so I wasn't expecting relief anytime soon anyway. Yuck. I rode the exercise bike today and my hip never hurts when I ride the bike - well, today it was hurting. That is so frustrating! I hope it's just because of the weather and not because my arthritis is getting worse. Super yuck! At least I can rest up this weekend. I hope everybody else has a restful healing weekend too. Big hugs to all!
 
Hey everyone. How are you all? There as been some developments but very small developments! I went for a routine smear test and I had extreme pain and major bleeding also some evidence of a fistula- I was so shocked as my last routine test was so normal. My doctor was horrified and wants me to contact my new GI-which I did and he said I have to go through ER and come in and hopefully he can sort things out quicker if I'm in. I also went to the pain clinic today and he gave me a steroid cortisone injection- now my tummy is up like a ballon and with the examination he done I'm in so much pain(more than usual) but he said that would happen. I've changed my GP and she has put me back on tramadol and ondansetron for antisickness. This is good but I hate masking the symptoms without proper treatment! Although it takes the edge of the pain which makes life easier. In still waiting on my capsual endoscopy I was just wondering do you guys have any advice?
Thanks everyone
 
Oh goodness Gabi, I'm glad to hear from you and very glad that you've had some developments! Not happy about the potential fistula though, that sounds awful. Do you have an appointment set up for the capsule endoscopy? Are they going to make you do prep for it or just nil by mouth? I had to drink 1/2 prep for mine, but apparently it varies and some doctors/hospitals will make you drink full prep or no prep at all. I hope you don't have to do prep, but if you do - as usual, that's the worst part. I had no trouble swallowing the capsule, and then all you have to do is wear this funky belt contraption and wait about 8 hours for the capsule to make its way through your small intestine. You don't need to return the capsule after the test is done (no digging through poo to find it!), you just need to return the belt and then wait quite awhile for the results. I think it took about 3 weeks for my results here in the US. Let us know if you have other questions about the pill cam, a few of us on here have had that test and we'd be happy to help! I hope things continue to move in the right direction - towards relief and towards some proper answers!
 
Gabi, good to hear from you. What does this fistula thing mean then? Is that pointing towards IBD? I'm presuming you're going back into hospital then? I've had a pillcam before. They wanted me to do a prep but I had been an inpatient for three weeks, had been through every test under the sun, and could barely walk to the toilet at the best of times so I didn't do a prep. I had done a prep before and I was in no fit state to do it. I just fasted for what worked out to be something like 36 hours. It's such an easy test, I was worried the camera would get stuck when I swallowed it but it went down SO easy. Then you just get to chill out for 8 hours.

Cat, I'm just off a 10 minute very gentle go on my turbo trainer! Feels so good to be back in the saddle. No major tummy complaints although I did take it very easy. First go but already feeling bitten by the exercise bug, want to get back on! It was around this time last year I went out for a ride (I was previously managing 20 mile rides no bother) and my husband had to come pick me up from the side of the road a quarter mile from our house! Just reinforces the improvement :) The fact I even have the energy to get on the bike says a lot, although I can't see myself doing any outdoor rides for a very, very long time.
 
@gabi - so good to hear from you! sorry to hear that you might have a fistula though.. Might be worthwhile posting in the females only section? I know what you mean about masking the symptoms.. but if you have been struggling - having the medication could help you to cope and manage with the doctors!! You will feel stronger to stand up for yourself and not take any BS!!

@stacey - still really angry to hear that people are still being insensitive at your work.. are things any better now?

(Im on my mobile - so im sorry i cant reply to everybody)
My mum has to go to hospital on the 26th for some tests.. urodynamics and cystoscopy (under general anaesthesia) they are really concerned. to put it simply.. she has all the symptoms of bladder C.. she is 50 and has smoked heavily since her teens. In a way.. im not shocked. her lifestyle has always led me to expect this to happen at some stage - at least a "scare" if you know what i mean.
most of the family dont talk to her.. (shes not a nice person at the best of times) ad ive had my battles with her.. but shes my mum. and i'd be devstated if i wasnt there for her when she needs me. so im going to go with her for her tests.
:( dont really know how i feel.. not good though thats for sure.
Just wanted to kind of get it off my chest. ive got a 7yr old sister whose dad isnt involved.. so its just my mum and grandma who look after her. my thoughts just keep whirling round my head..
 
lsgs, that's wonderful that you're getting back into exercise again! :D And that's very good that you're starting off slowly, don't want to push yourself too hard at first or the guts may freak out. It has been nearly 2 years now that I've been building myself back up with exercise and I know I still have a long way to go. Be patient and stick with it - some days will be really hard, but you can do it. I know just what you mean about how it'll be a long time before you can do outdoor rides again. The hubby and I used to go kayaking all the time before I got sick. When I got sick, well kayaking was just not an option! I had no strength and was terrified that I'd be stuck in the middle of the creek or lake with no bathrooms in sight. I went something like 3 years without going kayaking. I finally felt confident enough in my remission last summer so hubby and I took a test run in the kayak on the little creek near our house. It went great and no need to run to the bathroom, my guts behaved themselves perfectly. :) It was so nice to finally be back on the water after so long, and I don't think I could have done it if I hadn't been building myself back up in the gym. So, keep at it, be patient, don't let setbacks discourage you. You'll be back to doing outdoor rides sometime - it may take awhile, but you can do it. Keep it as a goal in your mind. I'm proud of you! :D

Bozzy, what a terrible situation, I hope this is just a "scare" and nothing worse. And if it is just a scare, I hope it at least gets her to stop smoking. Hang in there hun! I really hope it's nothing. Please keep us posted, and please take care of yourself in this tough time too. Big hugs!

As for me, it's raining so the arthritis is still achey. I also ate something potentially unsafe for dinner last night - a greasy fried sandwich with cheese and mushrooms and tomatoes. My guts are perfect today, no issues whatsoever, had a solid perfect poo this morning. But, I woke up with a giant mouth sore today! And I don't often get mouth sores with my IBD so I don't know if this is just coincidence or what. But wow, I feel for you guys who often get mouth sores, this is not fun at all! So with the hip and mouth both being bad, I'm spending today indoors mostly resting, doing a bit of shopping online and some sewing and maybe I'll bake some brownies. I hope everyone else is having a restful day too.
 
Hey a fistula is a hole from bowel to another organ- a definite sign of IBD. I have my pill cam in the morning and I know nothing's going to hurt or anything it's the results I'm worried about! I had a pill cam done before but the battery failed (just my luck!)
Any tips on how to get it to go through smoothly with no slowing down?
 
Gabi, they should give you instructions as to when to eat & drink with the pill cam? As I recall with mine, I had to drink a big glass of water with the capsule, another glass of water 2 hours later, a small meal with more water 2 hours after that, and then I think I was able to eat & drink normally for the remainder of the test. As for keeping the capsule moving steadily through you - maybe you could ask if you could drink more water than usual? As long as there's no bubbles, water shouldn't impede the capsule's view. Keep us posted on how the pill cam goes this time around.

And you're correct, I don't know of anything besides IBD that causes fistulas. I can think of 2 people who used to be in the club, who were undiagnosed but were given Crohn's diagnoses based on the fact that they had fistulas. So, even though it's surely awful to have a fistula, the good news is that hopefully a diagnosis is coming very soon for you. Hang in there, good luck with the pill cam, and please keep us posted! I will keep you in my thoughts and am hoping for the best!
 
thanks cat.. just feel a bit overwhelmed at times. i have asked her about the smoking situation.. and she says she is too stressed right now to quit. just until she gets her results. and if she gets the all clear - she says she will stop. but if its bad news, she says there's no point in stopping because its like "locking the gate after the horse has bolted".

i can see what she says.. but she just doesnt get it. ive been nagging her all my life for her to quit! i cant stand it!

and to top it off... we ended up taking my little girl to the children's A&E today :(
i feel awful... i lifted her up by her hands (and her legs turned to jelly - refusing to stand up) so i just left her on the floor... and as i went to lock the stair gate - she started screaming and crying.
because of the way i lifted her it caused a "pulled elbow" which is similar to a dislocation (though not quite, because a 2yr olds elbow joint isnt the same as an adults)
the nurse manipulated it, and she's completely fine now.
but before hand i was in floods of tears, feeling so guilty :( my poor baby girl. i thought i'd caused her wrist to break - so im relieved she is ok.

:( :( :(
 
Cat- I started the imuran already, now almost 2 weeks in. So far no real noticeable change but it is a drug you have to wait a while with.

Gabi- it's good to hear that you are finally getting progress with your dr.

Sending positive thoughts to everyone but especially those who seem to be having a hard time of it.
 
Hi All My Lovelies

back to work today and its peaceful and no troubles, had a pretty ok weekend had some quiet painfull BM with a bit of blood so i spent most of the weekend at home near my own loo :)

BozzyLozzy - the co worker is off today back in tomorrow so i am not gonna let her ruin my tranquility and calm mood thanks for asking hun xxx

Cat a Tonic - bloody hell what a complete jerk i dont have that but they do go all sexual over chocolate and sweets in front of me which is very cruel but hey im getting to grips with this whole new diet thing so screw em xxx

i hope everyone is good too

loads of love
xxxx
 
I thought I would announce it on here for my friends to see..

I have messaged David for me to step down as forum monitor. I love chatting on here, and think you are all amazing. But i dont feel i have anything to offer, and im having a rough time at the moment with stuff at home.

But dont you worry.. you wont be getting rid of me that easily ;) ill still be here to offer to "beat up" those people who get on your nerves and to continue nagging cat about her exercising ;) lol xxxx
 
Hunni

Sending lots of hugs and love we will always be here

i hope your home stuff gets sorted asap

your weath of knowledge and massive support has helped me through and your an absolulte superstar

xxxxxx
 
aww thanks stacey :)
but i havent put this message up to get compliments, though i do appreciate it.

just wanted to tell you guys directly, rather than wondering when my forum monitor status disappears lol xxxx
 
Bozzy, hun, I'm sorry to hear it but I understand (I responded to your PM with more detail). You take care of yourself and I hope all the things at home and with your mom get worked out. Sending you a big hug from across the pond! Now with regards to my exercise... ;)

Stacey, how are you doing today? Hopefully feeling a little better? How's the diet going? How were the co-workers today?

How's everyone else? I'm not great. I'm still healing from this big mouth sore, my arthritis is still grumpy, and yesterday I had some stabbing stomach pains that felt like gastritis but not totally if that makes sense. It was a little higher up than where my usual gastritis pain is and it came and went rather than being fairly steady - almost like the top of my stomach was cramping sharply? I'm not sure what it was - I ate a low res lunch and it mostly went away after that. I felt a little flutter of it today but not like what it was yesterday. I hope it's just a fluke, it's always disconcerting though to get new symptoms and have no idea why.

Bozzy will be happy (not) to learn that it hasn't affected my workout schedule though. I lifted weights last night after work and felt great - no reflux at all, up until I did the abdominals machine (I always save the abs for last because those machines just wreck me sometimes). Then there was definitely some reflux but not quite as bad as it usually is during exercise. I've been taking a Zantac (ranitidine) just before hitting the gym and I think it's helping a bit. Today is cardio day so I'm going to go hit the exercise bike in a little while. Lately my arthritis has been bugging me more than usual during cardio so I hope it stays quiet today. I see my GP in a couple months for my yearly physical so I might ask him to re-check my arthritis then and see if it has progressed any. I suspect that it has, but either way I want to know.
 
thanks cat and stacey for your support :)

just trying to work out the logistics of getting to my mum's, then to the hospital and back home again..
we live in different cities.. and her hospital is in a 3rd different city lol! and im a nervous driver, so there is no way im driving all of that :( so im thinking about trains/taxis etc..

grr.. too much difficult thinking for my little blonde brain haha!! x
 
Is there someone who could drive you? And I have to say, I am the opposite of a nervous driver. The only time I'm nervous while driving is when it's icy or really snowy and the roads are bad. Otherwise though it's my "me time" (unless hubby is there too, ha ha). I can crank my music, sometimes I can go way too fast even though I shouldn't, I can take little detours if I'm not on my way to work or whatever, I can just explore and let my mind wander. Kind of like being in the gym actually! Music cranked, sometimes go too fast, take detours (to the drinking fountain), let my mind wander. Both are like my sanctuary - my car and my gym. :)

Wow, that was a ramble, ha ha. It's been a long day and I think my mind has been wandering a bit too much! :p Back to the subject at hand, I hope you can figure things out with the 3 cities and the driving and all that. Hopefully the transportation issues get ironed out and everything goes smoothly, and of course I hope your mother is okay too. I have a co-worker who had a similar scare maybe about a year ago - she's a longtime smoker too. She thought it was cancer and she was crying at work, she was legitimately scared. It turned out to be nothing... and so she still smokes. But anyway, it is possible to be a longtime smoker and have a scare and have it be nothing. Let's hope it's just something like that, and let's also hope the scare is enough to get your mother to quit smoking. Take care of yourself during all of this too! Please keep us posted, and good luck.
 
Hi Cat

Yerh all good my end having a good week so far...... fingers crossed !!!!

my dumb arse co worker is at arms length at the mo just being polite nothing more

the diet is Pants really just trying to get used to it but hey ill do as im told lol

hows you hun

xxxx
 

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