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txarmywife - im so glad you're home! but i hope that pain eases soon :(

allie - i cant believe they changed it to a ct scan, especially when you've had 2 already!? theyre so high in radiation. and im sorry to hear about the panic attacks - ive only ever had one of those - and one is enough! theyre so scary :(

hannah - wow - your mum (and you too!) definitely had a rough time. ive read that type 1 chiari is congenital and it usually manifests symptoms in your 20's-30's. so it looks as though it was caught very late on. but ive also read that people can have type 1 chiari and never have a problem!
the only issue is - i just feel constantly nauseous and "not with it". i sometimes get pins and needles in my hands, and get achey pains across my shoulders/arms/thighs. i have suffered with awful migraines (with diminished vision) but only ever got them when i was pregnant or on the contraceptive pill. i get flashing in my left eye, and have had a deep pain in the back of my left eye too. chronic fatigue and bladder control is also an issue..
normally my symptoms are fairly intermittant - apart from the "not being with it".. its like i struggle to concentrate and cant focus on anything.

this is what my mri report states:

the cerebellar tonsils descend below the foramen magnum by approximately 12mm. this therefore constitutes a chiari type 1 malformation. there is some reduction in the volume of CSF around the medulla at the level of the foramen magnum. the dorsal column nuclei however do not appear to be displaced downwards and the cerebellar tonsils maintain a rather rounded appearence

the remainder of the brain is normal. in particular normal white matter and ventricular system. mild-to-moderate inflammatory change is noted within the paranasal sinuses

conclusion. there is a type 1 chiari malformation. the spinal cord has also been imaged (see seperate notes) there is no evidence of an associated syrinx within the spinal cord (so this is good, right?). the brain and spine are otherwise normal

(on my spinal cord results.. it is all fine except there is a small prominent central cord at C6 level and again at T1-2)

sorry for the long post!!!
 
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well it has been quiet hasnt it?

im back from hospital now. the flexi sigmoidoscopy found the bleeding - no sign of inflammation. they started to cauterize the bleeding - but it was just too painful and i had to ask them to stop.

theyre baffled as to what is causing the bleeding, because like i said - there was no inflammation and my bloods are fine. ive gotta go back next week to see the gastro again and get the biopsy results
 
Flaring hardcore today and yesterday. Had about two weeks good time, couldn't expect any more.

Not really constant pain this time around, but when it comes it's pretty bad. Started at work last night, got really bad cramps, really really tender. Gave up mostly after work, then today I had pain and a fair amount of blood on my poop.

I don't like this one bit. Might try and do a drop in on my doc tomorrow, she's open saturdays, but maybe too late as I've got work tomorrow.

Kind of worried that I might be developing a stricture as non-constipated stools have become quite narrow, and constipated stools cause bad cramping and pain as they pass through the right side where my issues are and where I would get the 'clogged' feeling.

My joint pain and sore throat both flared at the same time. I have a cough, not from airway irritation, but because I have so much mucus in my throat that it gets down my airway and I need to hawk it up.

But I've got nothing to worry about. It's just IBS or fibro and it's all in my head. :lol2:
 
oh no! i think you should try your doc's tomorrow - can you make up any time with work?

i hope you're not developing a stricture :( but you definitely need to have your abdomen examined
hope you feel better soon xxx
 
I might try it, not going to bother missing time from work, because my doc hasn't been helpful recently and I'd flip my lid to miss money and get nothing done. If nothing else I'll just get in Monday, I've got most of the day off.

I just don't know what to do. I wanna feel better, so I try and take it easy, but when I'm not so tender, the doc pokes around and says, 'oh you're not doing too bad, probably ibs'.

Such a silly situation.
 
this is the problem you see. i had a colonoscopy in early feb which showed absolutely nothing. but at that point, i was feeling fine! and i had recently spent 3 months on prednisolone.
and having had my sigmoidoscopy today - this found the bleeding, because the test was done within a week of my bleeding starting!

all tests need to be done when you are actively in pain/having symptoms

let us know how you get on when you do see your doc
 
Well, no chance of that happening, lol. We're in Canada here and the GI I saw during the troubles last year discharged me. I'm going to be weeks at best waiting. That's what happened to me as far as I'm concerned, colonoscopy was about 3 months since I'd had any significant symptoms, was on the road to recovery when I got it, so what's the point.

That's why every time I have a flare, I hope just a little bit that it gets bad enough, pain wise, that they'd take me seriously at the ER. But that's it, it'll be figured when it's figured I suppose.

Thanks,
Nathan
 
i know, its so frustrating - i only got the test done so quick because i was admitted into hospital (and thankfully my local NHS hospital has a highly rated gastro investigations unit)

its so hard not knowing whats going on :(
 
I have my first "real" crohns test on Tuesday......the dreaded colOnOscopy!!!! I'm sure not looking forward to the prep, am enjoying the nice sleep that comes afterwards, but not so much looking forward to the results. So I'm eating anything I like this weekend, damn the consequences!!!

But today I had a particularly rough day. Was in bed until about 5:30pm, I was told by my husband "What are your plans for feeling better?" my plans, right. My plans are to get to Tuesday evening without killing anyone who asks such a stupid question!!!

Ugh just a rant. A lonely, irritable "maybe chronie, maybe not" rant.
 
I had the colonoscopy in feb with just gas and air - no sedation.
it was uncomfortable but bearable :)
The prep was the worst bit. which prep do you have? I had klean prep and it was awful!

Good luck! And i hope you get some answers :)
 
estrella409 said:
I have my first "real" crohns test on Tuesday......the dreaded colOnOscopy!!!! I'm sure not looking forward to the prep, am enjoying the nice sleep that comes afterwards, but not so much looking forward to the results. So I'm eating anything I like this weekend, damn the consequences!!!

But today I had a particularly rough day. Was in bed until about 5:30pm, I was told by my husband "What are your plans for feeling better?" my plans, right. My plans are to get to Tuesday evening without killing anyone who asks such a stupid question!!!

Ugh just a rant. A lonely, irritable "maybe chronie, maybe not" rant.
Click to expand...

I plan on feeling better tomorrow! Don't count on everything going as planned though! :p

Colonoscopy, not so bad, don't know why all the dread and terror. Prep is a bit nasty, but not too bad.

Hope you get some answers or some relief mate.
 
Yeah, it's the prep that worries me the most. I was prescribed GoLytely, which I've heard absolutely nothing about. The actual colonoscopy itself doesn't worry me...........I'll be fully sedated, so it's really just a welcome nap. The results part worries me too, and I'm not sure if I'm more nervous about what they might find or them not finding anything.

Thankfully, though, my guts feel better (for today, at least). My husband is less of a crank thanks to a Fathers' Day gift of Mad Men on DVD, so guess it's a good day today!!!

Anyone have any insight into GoLytely?
 
Good luck with the colonoscopy estrella! Everyone is right, the prep is the worst part, I promise. I have used the GoLytely in the past....the best tip I have for you is to mix it with lemonade mix. It will REALLY help the taste! That stuff is very strong and you will be flushing yourself out in minutes after you drink that stuff. So just be prepared for a very bumpy night/morning. When I had to prep with that stuff I was told to do half of it in the evening, then half in the middle of the night...not fun! It was because my pill cam was in the early morning (same prep as colonoscopy).

I hope everyone has had a good weekend.

I heard back from my GP on Friday, and they have decided that the CT scan is a good idea. I am devastated...I am going to spend an entire two days away from home for this CT scan and doctors appointment, and I KNOW that the CT scan won't show anything. This will be my FOURTH CT scan! My second with a rheumy! I just know it isn't going to work...gotta love bouncing from doctor to doctor and no one wants to listen...ugh. :( Other than that, I've just spent the weekend pretty much doing nothing. Hubby had to work Friday and Saturday mornings, and I have had several panic attacks leading to 8 hours of feeling like a zombie on xanax. My blanket business is keeping me busy....no one wants to buy blankets right now, but I'm working really hard to get lots of blankets in my shop for the fall and winter seasons. My dogs have also kept us busy, we spent some time with them in the giant field near our house today and then furminated Kallie (the adult dog, I got so much fur off I could have made another puppy), and then bathed both of them. I love them so much. :)
 
I've got my gi appointments. Both the first and second opinion gi's.

Guess when I get to see em?

Oct-fucking-ober.

I don't know. I just don't know.

Nathan
 
Finally have an appt with my hospital doctor, although it's in August!
Saw my GP today, was so tired from going to loo all of last night that I just got fustrated after she tried to prescribe another supplement type drug.
I said that the IBS meds were just not good enough, and by not getting anywhere on about five different pills, that must say something!
She just ordered more blood tests and is fobbing me off to my hospital doctor.
At least he's not given up on me, he deffinately wants to do more tests, which is slightly comforting.

On an odd note, has anyone here had any sucess with complimentary medicine like accupuncture, or reiki healing? I've had reiki in the past for unrelated things and it was amazing.
 
Holy cow, those far-away appointments are unreal!!!! And then to think of the extra wait on top of that for scheduling and running tests that may not even give answers....wow. My sympathies go out to you both.
 
Chell and nathan thats awful about the appt dates!
I understand chell's position because i know what the NHS is like (not bad mouthing it, i feel lucky to have the NHS)
So i dont know how it works where you are nathan?
 
Estrella, good luck with the scope and the prep! I haven't had golytely myself and don't know much about it. I've done prep twice, I did the Gatorade & Miralax prep both times, and although it was pretty easy to get down, it made me super dehydrated and I felt awful. Some helpful hints for you to get through prep: When you start "going" clear, you can stop drinking the stuff. Going clear means you're cleaned out so you shouldn't need any further laxative! I think that was my issue and why I got dehydrated, I drank the full amount which ended up being too much for me (just remember, they prescribe the same amount of prep for a 300 lb guy as they do for a 100 lb woman, they don't take weight into consideration but if you're on the smaller end then you shouldn't need as much prep to clean you out - this is doubly true if you're prone to having diarrhea anyway!). Also, well check with your doctor to be sure, but when I did prep I was worried about puking it all back up - they told me I could take Zofran for anti-nausea while I was doing prep, and that made a big difference. The first time I did prep, I didn't take anything for nausea and I did end up vomiting. The second time, I took Zofran and didn't vomit, so it definitely helped. Anyway, there's a couple helpful hints from me. Prep is pretty yucky and definitely the worst part of the experience, but like you said the scope will just feel like a lovely nap and you shouldn't remember a thing. So once you get the prep over with, it should be smooth sailing from there! Good luck and keep us posted!

Argh, so I'm frustrated. My GI usually writes me enough Asacol refills to carry me through until my next appointment with him, so I didn't even look at how many refills I had left. Turns out, it was zero. I've got like 3 days' worth of Asacol left so now my pharmacy has to get ahold of him and get him to write more refills before then. And as I've said in the past, sometimes he takes a week to return calls, so I might have to skip a few days of Asacol. NOT happy about that, I enjoy remission and don't want to jeopardize it! My next appointment with him isn't until August, so my plan now is to try to get him to write enough refills at least to get me through then, and at my next appointment I will explain to him how frustrating it is to only get a few months' worth of refills written at a time, and that I'd really like a year's worth of refills like I have with every other med I take! Asacol is probably the most important med I'm on, and I think he just doesn't get that. Once again I'm feeling a bit tempted to switch doctors, we'll see what happens with this refill situation anyway.

I hope everyone else is doing okay? I've been quite busy lately but otherwise am feeling okay.
 
hey cat! i've been missing you on here!
im glad you're feeling ok - and i hope your GI will get you some refills asap!

im waiting for my biopsy results from the flexi sig - which i should get this thursday. otherwise - the bleeding seems to have stopped.
i still feel extremely exhausted though and nauseous and not with it :( but i dont know whether this could be related to my chiari malformation? will have to wait and see when i get to see my neurosurgeon (i still dont know when ill get to see him though)

im feeling a bit low, because i dont know what he's going to say, and what the prognosis is. i cant believe my urologist told me what they found on the MRI - but because he doesnt know anything about the condition, he couldnt advise anything"
so im in limbo until i get to see the neurosurgeon :(
 
Good luck estrella!!!

Cat, that stinks! Hopefully it won't take long to get more. I completely get you on the med refill thing...now that my pain meds are only 1 month's worth, and they only give me enough pred/plaq until right up to my appt (or where they think I might get an appt), it is really frustrating. It is really just unnecessary stress!
 
I know what you mean about the pills Cat , my thyroid pills often get lost or not put in on time, I went two weeks without them once! Wasn't very fun.

Good luck Estrella, drink as much water or clear things as you can, it really helps. After it's all done, think about the tastiest thing you can eat :)

Thinking of you all :ghug:
 
Bozzy, thanks - I've been reading, but when I reply I like to respond to everyone and sometimes that's very time-consuming and I just haven't had time! I've been so busy with work lately, and on the weekends I save up all my chores so I end up cleaning and doing dishes & laundry and errands and everything else all weekend. So, busy busy! I still don't have the time to write a proper message to everyone. But rest assured, I am reading, just don't have time to respond!

And Bozzy, I hope you can talk to that neurosurgeon soon and get more answers and info about your diagnosis. Good luck with the biopsies too! I can't believe they found the source of the bleeding and tried to cauterize it but still don't know why it was bleeding? That makes no sense to me. At least they've now seen that you were bleeding - that, plus the positive response to pred, sure doesn't sound like it adds up to IBS to me.

Estrella, good luck! I hope you have a good book, portable DVD player or laptop, anything like that to keep you occupied because the next few hours will be spent primarily in the bathroom. It won't be fun, but the worst will soon be over.

Allie and Chell, sorry to hear you two have been through the same thing - why do doctors do that! Make us wait until the last minute (or even longer!) to get our much-needed meds. So frustrating! I called my pharmacy an hour or two ago and they still hadn't heard back from my GI - they've faxed and/or called his office every day since Friday (I don't think he works weekends, but he's had all day Friday and all day today to put in the order). I'm going to call again in another hour or two although I'm not expecting anything. I think I will call my GI's office tomorrow morning if nothing comes through today, and let them know that I've only got a few days worth of meds left and I really need it refilled ASAP. Seriously, if doctors only knew what it was really like for us, they'd take us so seriously and wouldn't mess around with stuff like this! I am one of those people who likes to be prepared for anything (I always buy the 36-count roll of TP, ha ha) and it really stresses me out to not be able to get my meds when I need them! Urgh!
 
I've posted my story in 'General IBD Discussion', it's so interesting reading all your stories, some are so similar!
 
So I still haven't gotten my Asacol refilled. Apparently on Friday when I first went to the pharmacy, they faxed my GI's office that same day and his nurse did everything except sign off on the refills (apparently a doctor needs to do that part) so they're literally just waiting for him to give the okay and have been waiting since Fri. I called his office and left a message with the receptionist that I'm almost out (I counted my pills, I have enough to last through Thursday evening) and that I'm rather upset and need him to sign off on the refill ASAP. That was first thing this morning, it's now afternoon and I still haven't heard anything back. If this goes until tomorrow, I think I will call my GP and see if he can sign off on the refills. (And if he can, then my GI will officially be useless, in which case I may as well ask my GP for a referral to a new GI while I'm at it.) I really don't want to miss a dose if I don't have to and it's so frustrating that my remission may be jeopardized because my GI can't be bothered to do something that would literally take 5 seconds. What a joke!

That's my vent of the day. I'm sure tomorrow's vent will be similar. :p How's everyone else? Estrella, how'd the scope go and how was prep?
 
@cat - that is so frustrating! i really hope you can get it signed off tomorrow!
and in terms of my bleeding - my crp levels were very low and the scope didnt show any inflammation. it literally just looked like patches of red raw skin. (i only had gas and air (entinox) for this scope) so could see everything. they said it could be due to gastroenteritis or some sort of bug. but should get biopsy results on thursday

@sammcl - welcome to the undiagnosed club! hopefully you'll get some answers soon

@estrella - hope everything went well with your scope. xx
 
Hey everyone, I know it's been A LONG time since I last posted, I'm sooo sorry... I've definitely been going through A LOT... :yfrown:

To be honest, I have no idea what's going on and what's happening with my body... I've been in and out of the hospital almost every other week for something new everytime.

So for those who don't know, I got the loading dose for Humira in April and 3 days later had severe joint attacks in my legs and ended up not able to walk... I now use a wheelchair to get around... The Humira sparked up Rheumatoid Arthritis in my joints and also Lupus. SOO now I don't just have stomach issues, now i have issues with basically everything. I also have been having severe migraines and bad vision, but I went to the opthalmologist and they couldn't find anything wrong with my eyes.. so he recommended I see a Neurologist... so i'm seeing a Neuro guy this Friday. I'm also going to be trying out Acupuncture for my Rheumatoid Arthritis tomorrow. If I could be able to walk again or at least not have joint pain as much, that would be great. then at least ONE thing would be going okay... I'm off Prednisone and have been for a little over a week now. I was on Methotrexate (chemo drug) for my joints, but we stopped that too. So, right now I'm only on Colchicine, prevacid, folic acid and vitamin D. I have literally something wrong with every part of my body, and it's just awful!! Nothing has gotten better at all on any of the drugs I was on. Seemed like the drugs they put me on made me ten times worse... I'm terrified to take any drugs now. :(
My case is SOO confusing to all these doctors. I'm actually looking for a new doctor now. My doctor seems to not know what to do. I'm basically undiagnosed but people keep trying to label my sickness, but they don't really know... however it is official that I do have Rheumatoid Arthritis (came back positive through blood work). The Lupus is supposed to go away when the Humira got out, but I still have the lupus rashes, so idk... :/
they know that I have inflammation around ALL my organs, even my heart and lungs now. So i'm really struggling but I'm hoping things start turning around soon... I'm still having diarrhea 10 times or more all day too... its like nothing was accomplished at all through all these hospital visits or medicine... so frustrating. I don't get it.
anyway, there's really A LOT more to all of this, but I just thought i'd share a little bit to get back into the swing of things with this forum and get some support :sign0085:

love you all sooo much, i really hope you are all doing okay. I miss you guys so much!! *HUGS HUGS HUGS!!!!*
 
Finished with my colonoscopy.......totally, totally unexpected results. They found polyps and I was missing part of my colon that no one ever told me was missing when I had abdominal surgery thirteen years ago. Glad they found something concrete, but as I'm only 29 and they're finding polyps already.....not sure how good they are.
 
wow.. part of your colon is missing?? what abdominal surgery did you have? thats crazy!

hopefully nothing nasty comes back from your biopsy results. can polyps cause your symptoms? (i dont know what symptoms you have though)
 
They are not sure what to do next. Basically... i'm just hanging in there until further notice... :( That's why i'm looking for new doctors.. because I need help! My body is just getting so weak. I'm always in pain and getting new symptoms... I hate it.

estrella, so sorry about the results! I hope the polyps come back 'normal'... At least they found why you are probably having pain. Hopefully they can do something to help you!
 
Wow, I am so sorry for what you are going through. I am still in the midst of trying to find out what it wrong with my guts. I have been ill for the last nine years with many different issues, so I know what you mean about having issues with all body parts!

I am guessing they are thinking you have "drug induced lupus"?? I have a friend who was getting IVIG shots and it gave her drug induced lupus. It did get better after a few months. I hope yours goes away soon. I also have adverse reactions to most all medications so I am another one who HATES to take any types of medications. I am always taking the smallest dose of any meds or cutting them in half and starting out slow just to see how my body will tolerate it before I take the full dose. I was told I had multiple chemical sensitivities(MCS). It really makes it hard for a person to take any meds or supplements.

Again I am sorry you are going through all this. I hope you can get some relief very soon. Hang in there:Flower:











SunshineSmile said:
Hey everyone, I know it's been A LONG time since I last posted, I'm sooo sorry... I've definitely been going through A LOT... :yfrown:

To be honest, I have no idea what's going on and what's happening with my body... I've been in and out of the hospital almost every other week for something new everytime.

So for those who don't know, I got the loading dose for Humira in April and 3 days later had severe joint attacks in my legs and ended up not able to walk... I now use a wheelchair to get around... The Humira sparked up Rheumatoid Arthritis in my joints and also Lupus. SOO now I don't just have stomach issues, now i have issues with basically everything. I also have been having severe migraines and bad vision, but I went to the opthalmologist and they couldn't find anything wrong with my eyes.. so he recommended I see a Neurologist... so i'm seeing a Neuro guy this Friday. I'm also going to be trying out Acupuncture for my Rheumatoid Arthritis tomorrow. If I could be able to walk again or at least not have joint pain as much, that would be great. then at least ONE thing would be going okay... I'm off Prednisone and have been for a little over a week now. I was on Methotrexate (chemo drug) for my joints, but we stopped that too. So, right now I'm only on Colchicine, prevacid, folic acid and vitamin D. I have literally something wrong with every part of my body, and it's just awful!! Nothing has gotten better at all on any of the drugs I was on. Seemed like the drugs they put me on made me ten times worse... I'm terrified to take any drugs now. :(
My case is SOO confusing to all these doctors. I'm actually looking for a new doctor now. My doctor seems to not know what to do. I'm basically undiagnosed but people keep trying to label my sickness, but they don't really know... however it is official that I do have Rheumatoid Arthritis (came back positive through blood work). The Lupus is supposed to go away when the Humira got out, but I still have the lupus rashes, so idk... :/
they know that I have inflammation around ALL my organs, even my heart and lungs now. So i'm really struggling but I'm hoping things start turning around soon... I'm still having diarrhea 10 times or more all day too... its like nothing was accomplished at all through all these hospital visits or medicine... so frustrating. I don't get it.
anyway, there's really A LOT more to all of this, but I just thought i'd share a little bit to get back into the swing of things with this forum and get some support :sign0085:

love you all sooo much, i really hope you are all doing okay. I miss you guys so much!! *HUGS HUGS HUGS!!!!*
Click to expand...
 
thats not good at all.. there was a girl i met in hospital last year. she had crohn's. and she was immune to all the usual drugs and the next step for her is stem cell replacement.
would this ever be an option for you?
 
Estrella, oh my gosh! Were they able to figure out why you were having the symptoms you were having? Does it all make sense now? I am so sorry they found polyps... :(

Sunshine, it sounds like your case is a lot like mine. I have inflammation around my heart as well, and I have severe heart/chest pain at times. I'm stuck too, and I also have problems walking. :( Lupus would explain your symptoms....have you seen a rhuemy yet? Hopefully the lupus symptoms will go away soon.

Cat, that sucks about your meds! Try not to get too worked up over it....the stress wouldn't be good, especially with no meds! :(

As for me, I got my CT scan and new rhuemy appointments today, both the 16th of July. They have me drinking barium beforehand like last time...I am SO NOT HAPPY about this....I am in a really bad flare right now though, even my mouth ulcers have come back...and I'm on freakin meds! Not fun. I counted my tramadol after the appt was made and I only have enough to take 2 day, when I'm on 3, so I either have to lower what I'm taking or call my PCM for another refill....:( I hate having to play these games just to be able to be able to lead a normal life. Good news though, the play performances are this weekend!
 
IHurt, yeah you sound a lot like me too! lol every side effect from a drug always happens to me and i've been sick for 9 years too now! that's crazy. :/

bozzy, not sure if that is an option for me or not. Hmmm.... sounds interesting.

Allie, I'm starting to wonder if I don't just have drug induced lupus, or if I actually have the real Lupus, and have had it this whole time but all these other drugs just pushed it out there... I don't know. I'm so confused. I feel like we are in the same boat. all the same symptoms... ughh! Allie, this is craziness. we have been going through this for too long. :(
 
Yes we have Sunshine! Honestly, I really hope yours is drug induced and it goes away, even if it just takes a few months.. I would never wish this on anyone! Don't even get me started on how the doctors treat these unique cases.... >.<.
 
Honestly, i don't know WHAT is going on though. i've gotten ten times worse since all the drugs I've taken to 'help'... i honestly never get a break. it's awful. i just want to know what is going on and start feeling a little better so i can actually live my life.. that'd be great. :(
it makes me so frustrated how many undiagnosed patients there are.. it's not right. not at all. :(
 
Sunshine! I haven't been on the forum much lately myself, but saw you were logged in. We missed you! I see you on FB sometimes but didn't know the full story. I knew you had drug-induced Lupus from your FB posts but didn't know about the RA. :( I really hope you can find some miracle doctor who can get you all sorted out finally! I can't believe that in spite of all the doctors and meds and hospital visits that you've just been getting worse and worse, it's just not fair at all. I'm at a loss for words - I just want to grab your doctors and say "HELP HER!" It's just unbelievable.

Bozzy mentioned a stem cell transplant and that might be your best bet at this point. I have read some of the threads on here about stem cells, and they all sound really hopeful although they aren't considered a cure... yet. I know from reading on here that they are doing trials somewhere in the Chicago area so you might want to research that, I'm not sure if there's anywhere closer to you that's doing stem cell transplants. The guy in Chicago who's doing them is named Dr. Burt. There was a forum member here, I don't think he's active on the forum much anymore, but he wrote a blog about his stem cell transplant (he went through Chicago/Dr. Burt) which was a very interesting and informative read. He still updates it ocassionally. Here's the link:
http://mypsct.blogspot.com/

Allie, I can't believe they're putting you through yet another barium CT scan. :( Any chance you could talk to your doctor and express your concern at getting so much radiation from repeated CTs? MRIs don't give off radiation, they operate with big magnets instead of radiation, plus I believe they can visualize specific areas more clearly whereas CT just gets a good "general" view. From personal experience, my general abdominal CT found "nodules" on my liver and I then had an MRI of my liver to get a better look, and the MRI was able to get the nodules diagnosed ("focal nodular hyperplasias", basically benign tumors). With that warm/inflamed spot you have, I would think an MRI would be much better to visualize that. If it were me, I'd get on the phone with the doctor and list my reasons for wanting an MRI vs. another CT (not to mention the fact that you've already had 3 CTs that didn't find the problem!). If you really make your case, they might let you switch. It's worth a try anyway! Good luck with whatever test you end up getting.

Estrella, oh my goodness, what part of your colon is missing? Was it removed during your prior surgery, or is it just naturally missing like it never formed? Either way, how crazy to find out you're missing a chunk of intestine! Is that a possible explanation for your symptoms, that plus the polyps maybe? Did they take biopsies?

As for me, I'm breathing a little sigh of relief. I just called the pharmacy and my Asacol refill finally went through (at 4:30 PM)! Yay! In the future I am going to keep a closer eye on how many refills I have, and make sure to get on top of things well ahead of time the next time that I am out of refills. Don't want to come down to the wire like this again! Fortunately I still had a few pills left and I'm going to pick up my refill in a little bit, so I won't have any lapse in treatment. :) Phew!
 
The part of my colon that was missing was taken out when I had my appendectomy/bowel resection/gall bladder removal 13 years ago.....apparently removed by the original surgeon. From what my current GI could see, it looke like they took out a chunk of colon (hes not sure quite how much), a chunk of terminal ileum, and rerouted the regular small intestine straight into the colon. It's very close to where my appendix was, although he had no idea why they would do that since my appendix was just taken out "for good measure" since they already had my whole abdomen open. It wasn't an acute appendix, so why the heck am I missing a part of my colon?!?!?

The polyp was bleeding, about 11mm in diameter and he described it as "precancerous". Took five plain old biopsies plus removed the polyp, but won't have the results back for two weeks. I'm only 29, so very very shocked at that finding.
 
I have some news at last!

Rheumy's colleague has looked over my notes and raised some ideas, some of which have come up before.

To that end I am being sent to a Professor in London who specialises in auto-inflammatory diseases, some of which involves genetic testing. Pretty exciting. Who knows how long it will take but at least they are still trying with me which is what I want really, not yet ready to go on to long term steroids especially as the short term Pred isn't working that well.

They would also like a more detailed procedure done to look at my blood vessels again, but since the MRI was so screwed up they are reluctant on the basis of weak rather than strong evidence. Which I understand but would do the testing anyway.

On the subject of Pred, I am now tapering, (currently 4/5 days of 25mg, another 21 days to go in total) and I don't know whether it is working at last or the side effects were worse than I thought and now lifting, but I have seen some more improvement. It's not dramatic and is not really improving my quality of life, but something is happening.
 
Thats great news star! I hope the new specialist can figure it out. Wow, another person that might not have Crohn's, but another autoimmune disease.....There is a pattern emerging!

BTW, I love your new avatar. I LOVE that show!!

Cat, I tried to get it changed back, but my doctor's response was simply that it was safe and to go ahead with another CT. I can't talk to her directly anyway, what went down was a "nurse consult", so there was a nurse calling me and was the middleman between us. I really wish it had stayed as an MRI though....that barium is going to make me so sick. My rheumy appointment is only a few hours after the CT, so he will see me very weak and sick from the barium.

Cat, I'm glad the refill went through! That was a close one!

Estrella...wow, that polyp does not sound friendly! Hopefully now that they are taken out you can start to feel better. It would be great if it wasn't crohn's/IBS at all!

Well, today is a spoon day for me. I take that back, I really don't have any spoon days anymore because I have a 11 week old puppy, but I am trying to chill as much as possible. My pain has been through the roof lately, and the past two nights I have come home from rehearsal in a huge amount of pain, so sleep hasn't really happened. Last night I laid in bed wide awake from the pain until 3 or 4 in the morning. I was suppose to go grocery shopping today, we are almost out of food completely, but I cannot see myself doing very well with a grocery trip, then a 3 hour rehearsal.

Oh, speaking of rehearsal....we were double cast in this play, and my counterpart has been a drama queen lately, and it is really getting to me. This is my second play with her, and she is pulling the same stuff she did last time...we work really hard right before performances, and she always thinks shes too good for it. Last night she was told I was running through as Dakota first, and she got ready anyway, took our wig, and said "oh, I thought I should go first, my husband deploys soon." Ok, I get your husband is leaving, but that isn't fair. My husband will be working almost 24/7 once the unit leaves, even though he is staying here. The director made me decide whether or not I would let her, and I didn't want her drama so I just let her go, saying I would go first tonight. Well, now she has decided tonight she isn't coming to rehearsal at all, and now I have to be there the entire time to cover her half of it! And tomorrow night she is suppose to play the part on stage, and she isn't ready! Absolutely ridiculous....oh well, sorry for the random rant!
 
Cat- Glad your pills came through at last! I wish these doctors and pharmacists would understand how important the meds are. I'm happy everything was sorted in the end though :)

Sunshine- I have a look at your tumblr sometimes, sorry you're doing so badly. Thinking of you!

Estrella- Oh my! Is there anything that can be done about the missing colon sections? Hope things get sorted for you!

I had another blood test today, all went well. Got my favourite nurse, which was awesome. She's the only one that can take my blood without blowing veins, which is good! Apparently I can just request to have her as my nurse for these things which is also good!
Had the full shebang tested, so that'll be interesting to see. I'm worried about deficiencies and anemia, so this'll put everything right.

I have officially broken up with chocolate! My damn system is taking everything tasty away from me slowly. My Dietician was saying about the FODMAP diet, does anyone know any information on it? All I find it saying it's either fantastic, or awful, so I wondered if anyone had any experinces?
 
oh no chell! its definitely not a good thing when a girl has to give up chocolate. but to be honest, whenever my bowels are playing up - chocolate is a no no for me too.

so i feel really down at the moment :( :( :(
i went to see my gastro today. he still doesnt have my biopsy results. and he doesnt know whats causing the bleeding - he thinks it could be a small tear? and he's booking me for another colonoscopy.
they tried to take bloods from me, and that vein has officially given up. and i refused to let them try again. i think i was just so frustrated with the vague answers from the doc
i dont even want another colonoscopy. ive literally had enough :(

my main issue is fatigue (i had a 5hr nap yesterday!) and nausea - my BM's have been ok this last week. so i dont know if my symptoms could be related to my Chiari malformation? and i cant find any good forum/support groups for the chiari. especially nothing in the UK anyway. i feel so alone right now :(
and i still dont know when im going to get to see the neurosurgeon.
 
Chell, I don't know anything about the FODMAP diet but I'm guessing there should be some info about it in the diet section of the forum, have you had a look around in there? As for chocolate, oh, I couldn't imagine giving it up! There are times when I have had to temporarily give it up, which is so difficult because chocolate is possibly the best thing in the world. In a flare, or when my GERD is acting up, chocolate just seems to make things worse. But when I'm feeling okay then I usually have at least one (sometimes more!) small piece per day. They say dark chocolate has some good health benefits anyway, and dark chocolate is my favorite, so really I'm eating health food! Right?... ;)

Bozzy, I don't know anything about Chiari malformation (except what's already been posted in this thread) so I don't know if your fatigue could be due to that or IBD/IBS/something else. At any rate, I hope you can see that neurosurgeon soon! Maybe put in a call to the hospital and let them know your symptoms, perhaps they could squeeze you in sooner or at least let you talk to someone who can give you more info? As for the bleeding being caused by a tear - would that be a fissure then? I have had fissures plenty of times and my understanding is that they're like small cuts or tears that bleed a little (or sometimes a lot, although thankfully mine have only ever bled small amounts). As awful as another colonoscopy sounds, it might not be a terrible idea - they could get a better view of what spot(s) are bleeding and might help clear up the IBD vs IBS thing for you. I know you said that you've basically accepted the IBS diagnosis, but you've also said things like pred works for you, and that coupled with the bleeding really doesn't sound like IBS to me. Anyway, whatever ends up happening, I hope it all goes well and that the appointments come quickly so that you can get some relief from your symptoms. Hang in there!

Star, that's excellent news about getting some new tests run for other AI illnesses, I hope this can finally shed some light onto things! The genetic testing sounds intriguing, do you know much about it? I presume they'll do things like see if you have any gene mutations that are common with any particular AI illness? I read on here recently that there are several dozen different genes that can be associated with IBD, I wonder if it's that complicated with other AI illnesses. At any rate, so glad to hear that more testing in a slightly different direction is on the table - I hope it goes well and happens soon, please do keep us posted!

Allie, as far as grocery shopping goes, I don't suppose you have the option to shop online and have groceries delivered? I haven't done that yet myself but I know that there are services here for that. Not sure if they have that in Germany though. Just a thought, it might help you save up some more spoons if you don't have to walk through a store during a flare. And as for your co-actor in your play, she sounds like a total flake! But if she doesn't know her part and isn't coming to rehearsals, I'd be tempted to sit and watch her perform, then you can laugh about how awful she is! Ha ha. That's a little mean of me but it sounds like she's got it coming. Oh, and with regard to your rheumy appt being a couple hours after your barium CT - if you're really sick from the barium, that doesn't sound like an entirely bad thing if the new rheumy sees how you are when you're really ill (even if some of it is from the barium). Hopefully that means he'll take you really seriously. Good luck with it, I hope it isn't super awful and that the new rheumy is good.

Estrella, I don't suppose you could still get a copy of your medical records from when you had that appendix surgery awhile back, to see if they noted why they took chunks out of your intestine too? That sounds so fishy to me that they'd do that and not even tell you! And as for the polyp, it sounds nasty! When I had my colonoscopy a couple years ago (at age 30), my GI said it would be highly unlikely that they'd find anything cancerous or pre-cancerous. So I'm guessing your polyp is an uncommon find in someone your age too! As awful as it is, hopefully it means that your doctors will take you seriously at least. When do you get the biopsy results back?

I'm doing good today although I had a bit of a rough night last night, my tummy apparently wasn't super fond of what I ate for dinner and I couldn't fall asleep for a couple hours due to cramping and bathroom trips. I'm doing okay today though so I'm taking it a bit easier food-wise for now. How's everyone else doing today?
 
cat - well i would have thought a tear meant a fissure - but he never mentioned it. . - when i was watching the screen during the scope - it looked like a red rash - and then two large patches of raw bleeding skin!
and he wasnt that helpful at all.. but i've calmed down now lol!
sorry you had a rough night, what did you eat that triggered it?
the chiari malformation can cause many similar symptoms to MS. and its compression of the lowest part of the brain - pretty weird huh?

estrella - that does sound scary. and i cant believe you were never told before that you had some colon removed? thats pretty major! how are you feeling otherwise?

star - this sounds promising about being referred for these auto-inflammatory diseases, fingers crossed it leads you towards an answer!

like i said - ive calmed down now. i'll go back to work on monday (i dont work fridays)
and ill just have to wait for the appt to come through.
 
Thanks everyone- This is where I will be going. Looks like they do tissue and bone marrow biopsies as standard- which I haven't had yet and think it's time I did since surface scans haven't gotten anywhere.
 
Hello all,

My name is David and I guess I am still in the undiagnosed club at the moment.
Been cramping with very loose stools for about 4 years now. A couple of years back I had a perianal abcess and the specialist thought I had Crohns but after a colonoscopy it was ruled out because they found some kind of bactaria that was making me ill. Anyways a couple of years later I have now gone back to the doctor after a couple of really bad crippling cramping sessions he referred me to specialist again. Had bloods done which were normal, then an utrasound which also showed normal. I was then sent for a MRI which showed narrowing of the small intestine at the terminal illeum and a few other places further up. Got a colonoscopy booked in for next week. The doctor put me on Pentasa and said he will start me on steriods when he sees how bad the inflamation is. He is almost pretty sure its Crohns but wont commit till after the colonoscopy. To be honest I dont seem to have most of the symptoms of Crohns like weight loss and vomiting or anything else besides bad cramping and the narrowing in the small intestine. I am hoping its just something that is easily treatable so got my fingers crossed. Anyways will update once I get the results of the colonoscopy.
 
welcome to the club! your doctor sounds like he's on the ball which is great :)
thats great that you dont have all the symptoms if you were to be diagnosed with crohn's. hopefully you wont have a hard time in getting it treated.
i was told last year they were 99% sure i had crohn's but it turned out i had a VERY sneaky appendix lol! so im happy with the IBS label. but the gang couldnt get rid of me ;) - everyone is so lovely on here. whatever you need - to vent, get advice or support.. we're here for you :)

good luck! :hug:
 
Sunshine -thanks for the update - but WOW - how awful!! We have one doctor (rheumi) wanting to try Danny on Humira .... but your story definitely makes me rethink that given Danny is not diagnosed. (His GI's are not enthusiatic about trying Humira without a firm Crohn's diagnosis) Prednisone made Danny 10 times worse when he tried it, and shortly after tapering he went back to baseline. I am so frustrated for you ... I finally thought things were headed in the right direction. I really hope your new symptoms go away soon!
 
Bleh. I'm not having a good week! I wrote a longer thread about this in Members Only, but basically I had a migraine last night and apparently had a bad/weird reaction to my migraine medication. I seem to have gotten a rebound migraine in the other side of my head - my migraines always, always, ALWAYS occur in the right, no exceptions. But my generic Imitrex seems to have caused some weird rebound migraine in the left side of my head. It also made my sinuses go wonky and I've had nausea all day. Yuck! I had to skip the gym today and I *hate* having to skip the gym. But I think I would hate barfing in the gym more and I know my limits. I'm supposed to go see "Brave" tonight with hubby so I can't even rest up tonight. And now I am back to having no "safety net" when I get my next migraine, don't want to take that medication again and Tylenol is my only other option and of course it does nothing. Ugh.

How's everyone else today? Anyone have fun weekend plans?
 
I'm doing aiight, the flare I had last week has settled for the most part, excepting the whole being in pain bit. Haven't had any more blood, but my stool has been hard, and I don't have blood when I've got hard stool. (Puts a dent in the hemmorhoids theory, right :p)

This weekend I'm studying. Got an exam monday. Exciting right? :p
 
sorry to hear you're not doing so well cat :( and migraines suck too - do you get visual aura's with them? i get really bad tunnel vision.
you need to start feeling better missy!

i went back to my doctors today and they have signed me off work for another week, because my fatigue is so bad. even taking a shower is hard work and i wanna fall asleep. doctor is baffled because as per usual my bloods are normal - but could be due to my brain thing.

hey - i found a funny quote related to the condition "too much brain to contain" made me giggle ;)
 
Good luck on your exam, Nathan! What are you studying? As for blood, yeah, I usually only get blood when I have a hemmie or a fissure, so pretty much only when I have hard stools. Although if I have a ton of d then my backside sometimes gets so sore and inflamed to the point where it just basically weeps blood, that's always a fun time. :p Have fun studying!

Bozzy, that's a good quote! You've got too much brain to contain, I've got too much migraine to contain. :p Ha ha. I'm glad you get another week off work to rest, I hope it helps. And I hope you can see that neurosurgeon soon! As for the migraines, YES I get awful visual auras! It's different every time too so it always freaks me out! It's only ever in the right side, that's how I can always tell it's an aura. Sometimes it'll be like a little speck of light in my peripheral vision that gets bigger and bigger until it blocks my vision completely in my right eye and I'm basically blind in one eye. Other times it'll be like someone turned the lights on or off, but again only in the right. Once it was like someone turned up the contrast and the sharpness and I could see things really super clearly in the right eye. Yesterday's aura was the opposite - everything went a bit blurry in the right eye. So yeah, it's always different and that freaks me out. I hate migraine auras - sometimes I think they're the worst part!
 
yeah i hate the visual auras,, i always start with speckly dots of light that get bigger and bigger - so it becomes like a zig zag crescent moon shape. it makes it weird when trying to read - because you can only see the first half of words! such an odd feeling. then once my sight comes back i get hit with nausea and headache
 
Yeah, I've had auras like that with just one dot that slowly gets bigger and bigger. I don't mind those as much as it comes on gradually. The worst ones are the turning lights on/off or the vision getting sharper/blurrier - those ones come on quickly and all at once, it's literally one second I'm fine and the next I'm in a full-on aura. That was how yesterday's aura was, I was sitting on the couch playing a game on my Kindle and then all of a sudden wham! Aura! I sat bolt upright and shut my right eye tight and told hubby I'm having a migraine aura - he immediately turned the lights off and started rubbing my feet and saying soothing things, what a nice thing to do. :) But I just hate auras, especially when they come out of nowhere so fast like that. Sometimes I wonder if I'm having a stroke or something because it's so weird and just on one side.

And yeah, like you said, once the aura is over the headache starts. I usually don't get much nausea but I do get head pain (right side only of course) and a lot of sensitivity to light & sound. As long as I can lie down for a bit in a dark, quiet room then it's not too bad.
 
I'm just sooo sick!!! :'( I really don't trust doctors anymore at all and my body is just at rock bottom... i don't know what to do . i'm so scared. :'( this is not normal.
 
*** This is not related to any of our discussions***

but im so stressed right now watching the England vs Italy match - im literally living on the toilet!
haha i cant cope with it! lol... we never win any sports
 
Hello, I am new to this site and have decided to join in order to get some answers from some experts. That is from people who have been diagnosed and live with IBD every day.

I have had bowel problems since I was around 18 (I'm 28 now) in the last 3-4 years it has gotten significantly worse. I have been taking IBS medication which does nothing on and off for ten years. In the past year I have been hospitalised with septecemia (which the cause was unknown, possibly an infection from my gut I was told) and I have also been hospiatlised with a small bowel obstruction which apparently was ok to leave due to my ability to eat.

In January I had a laparoscopy due to my terrible abdominal bloating and pains. It gets to the point where I cannot go to work nor look after my two young sons. There they found an adhesion linking my bowel to my left tube but I have had no previous surgery therefore the cause is unknown.

More recently I have had diarrhoea with a lot of bleeding upon wiping. I had a colonoscopy two months ago which showed some inflammation but that was all. in the laast month I have had excess rectal bleeding when opening my bowels and cold and flu symptoms at the same time with a fever.

I went to a & e last week and was told that I am showing signs of colitis and was given antibitics and told to see my bowel consultant sooner. Appointment now made for July.

My brother has crohns and was severely ill but I know my own body and this is more that IBS, I am convinced.

How can they rule out crohns with one colonoscopy. My blood tests sometimes show inflamation and sometimes don't. I would really appreciate your thoughts on this and apologise for the long post. I am so tired and as much I do not want IBD I am desperate for a disgnosis so that I can treat these symptoms. Should I demand them to check my small intestine and can a negative colonoscopy completely rule out IBD from the colon?
 
They cannot rule out Chron's with a colonoscopy- Chron's occurs anywhere from mouth to anus.

Yes you need small bowel tests, even the upper endoscopy only peeks into the end of the small bowel, as does the colonoscopy.

Having a colonosocpy find inflammation isn't normal either.
 
Cat-a-Tonic said:
Good luck on your exam, Nathan! What are you studying?
Click to expand...

I am studying... Well, lets just put it this way, I'm planning on doing a double honours degree that has Chemistry in it. Not sure what the other half is, was going to be math before, but higher level math seems too pointless. I am looking at biochem now. :p Hoping possibly to get into medicine.

Yeah, I literally only get blood when I'm not constipated. My theory - it's just not visible on hard stools because it's been hanging around too long and has degraded/mixed in. On diarreah, it's probably just not visible, or maybe it's not solid enough to rough up my insides to make em bleed.

Dunni: They can't rule it out with colonoscopy, in fact, it sounds like they're on the path to finding a diagnosis by colonoscopy. It just often takes a while to get a biopsy to show the distinctive charactaristics of either IBD.

Nathan
 
Thank u Nathan and star girrrl for taking the time to comment. I guess what I need to do is demand more tests. I've taken photos of the amount of blood I lose and also the stomach swelling so that I can put it in front of the specialist in July. I need them to take notice rather than fob me off with ibs :) haven't eaten a thing today and feel surprisingly better but can go on starving myself lol.
 
I don't know if I can physically wait until August to see my hospital doctor. I can't sleep, paracetamol doesnt cut it, but that's all I have, I feel like I'm going to pass out constantly, and I've lost more weight again.

I've cried every day for a week :( I wish someone would take it all away so that I can do things, and not fail my Law course. Dropped two grades and it's taken me a year to get through two units.
sorry..so low today...just have to vent.
 
I'm sorry things are not good Chell :( Have you tried getting on the cancellation list for your GI? And maybe think about going to A&E if things get really bad, should give you some decent pain relief and maybe able to bump you up the list to see GI.
 
dunni83 said:
Thank u Nathan and star girrrl for taking the time to comment. I guess what I need to do is demand more tests. I've taken photos of the amount of blood I lose and also the stomach swelling so that I can put it in front of the specialist in July. I need them to take notice rather than fob me off with ibs :) haven't eaten a thing today and feel surprisingly better but can go on starving myself lol.
Click to expand...

Yeah, get the tests. Inflammation means that your symptoms are not just IBS. Might be transient inflammation, but it isn't functional.

I put myself in remission the first time by having only one meal a day for... threeish months. Was incidental cause I wasn't feeling up to having breakfast or lunch, but had to eat supper to keep from losing too much weight. Then as I picked up the second meal again, a few months later it came back full force and then some.

Chell: Would an ER run do you any good? Sounds like you're suffering and if you can't get in to see doc, it might be worth it to you? If not just keep pushing for an earlier date, eventually they might schedule you in just to shut ya up. :p

As for me, I realized yesterday I was dehydrated. I hadn't realized how bad my upper tract problems had gotten. No wonder I'd been feeling a bit run down. Basically, my stomach/throat has taken to hurting/being nauseous. Not severe, but enough to be irritating and uncomfortable. Apparently I haven't been drinking enough because of it.

Basically my throat is so sore that drinking doesn't give relief, and my stomach is sore so drinking any amount gives me an upset stomach.

But not to worry. It's all just ibs. :shifty:
 
Uggghhhhh. I'm here. This is going to be a vent, you've been warned. Guts are still fine, but I'm soooo stressed. My new boss keeps finding new projects for me to work on so I'm much busier at work. And hubby got laid off from one of his jobs, the one where he was getting a steady consistent paycheck, so financially we're not doing so well. (He has another part-time job but he only gets paid once a month from that and the paychecks are always small, and he does freelance work which is sporadic and so is the pay.) Hubby's depressed about losing his job, and when he gets depressed he just sort of retreats from the world. Meaning, he's not actively looking for new jobs or updating his resume or anything like that, instead he's hanging out at friends' houses and watching TV. I'm depressed about it too but that doesn't mean I should have to work full-time and have to take care of the house, pets, etc all by myself too! Grrr. Meanwhile I'm busting my butt at work and we are still just scraping by financially. I have a stress-induced headache and my guts are a little unhappy with all the stress although overall my health is still good. I just am so stressed! They didn't even give my hubby any warning that he'd be laid off, they just called him up and said, "Sorry, corporate decided that you don't work here anymore. Bye." Nice. So I feel so much pressure to keep us above water right now and I feel like I'm doing it alone for the time being. Urgh, stress!!!

I hope everyone else is okay. I skimmed but my head hurts too much to write meaningful responses right now. I will try to respond better later. Big hugs to all.
 
Aww cat thats awful! I cant believe they did that!? Surely thats not legal?
And sounds like your new boss is being a jobsworth - a lot of fun..
this is the last thing you need.. especially as your guts have been fine recently.. dont want this stress to affect that too!

I got my appt through today for the neurosurgeon - 18th july
plus my colonoscopy is booked on 30th august at 8:30 in the morning.. eep! That'll wake me up lol!

@dunnie - i agree completely with star and nathan.. maybe heading to A&E might not be a bad idea?

@nathan.. im sorry to hear you're not doing so good. hope u feel better soon (have u managed to get on the cancellations list for the GI?)
 
Thanks Nathan. Yeah I have been doing the same only eating one meal a day as the burning and toilet trips are too much and I'm feeling better slightly apart from weaker. Aw sorry to hear you are not feeling good either :( hope you feel better soon.

Yeah lozzy a&e a waste of time until I'm literally on my death bed. The last time they took me seriously was when I had the small bowel obstruction and septicaemia. Then they did no further tests once I was cured. It's a joke. But if things get much worse I will have no choice. Thanks for the advice :) hope all goes well with your colonoscopy.

Hope you feel better too cat.
 
Whereabouts in the UK are you? At sheffield hallamshire hospital they have a gastro investigations unit.. and my GP got me admitted there pretty quick.

its a farce that they didnt do tests after you were treated!?! I was hospitalized last year for 16days. when surgery found my appendix was a mess.. but they still booked a colonoscopy last feb when my bowels were still unsettled..
 
I live in the northeast, Darlington. Aw they blamed the sepsis on gynae issues then did a laparoscopy three months later showing no gynae issues other than my bowel being stuck to my left tube with adhesions. My gunae said it was a sign of infection from the bowel. The gi was great when I first saw him and said it sounded likely that it was early stage crohns. But when I laid there sedated he just said he could only see inflammation which must be due to ibs and prescribed me mebeverine and then left me on the table. Haven't seen him since. That was in April so I'm ready with the questions and the proof of my symptoms for when I see him two weeks.

Starved myself all day again and just had one little meal and what do you know, straight to the loo. So annoying. Lol. Sorry if tmi.
 
mebeverine sucks as it does absolutely nothing!
you dont get inflammation with IBS.. definitely be as strong as you can when you see him. (i always cry when i feel theyre not listening lol) this is so infuriating.. if he still says its IBS.. you should seek a 2nd opinion.

I do think I actually have IBS (as never have found any inflammation plus biopsies are clear) I really dont want this 2nd colonoscopy. As I genuinely think all my problems are neurological now I've had my chiari diagnosis..
because my main issue is bowel urgency with diarrheoa. I dont really suffer with stomach pains
 
I'm so sorry Cat! All that stress is not good for your tummy. :( I would definitely talk to him about pitching in a bit more...I don't have a job, but I would feel really guilty if I spent my time like that, well, except for when I feel REALLY bad. Hopefully it will turn around soon and he can get another job so things can get back to normal.
 
Bozzy, unfortunately it is legal - he was laid off, their official reason for it was that he was part-time and summer is the slow season (his job was at a photo portrait place) so they decided they could let go the part-timers. Legal yes, but they way they told him was pretty jerky. Didn't even say it to his face, he just got a phone call out of the blue saying he's out of a job. At least the time I got laid off a few years back, they told me to my face and gave me advance notice (I was advised 18 months ahead of time that my job was being outsourced) and they offered me a severance package and all that. Hubby didn't get any of that courtesy and it was so sudden. Just so stressful!

I'm feeling a bit better now though. I went to the gym a little while ago and gave it all I had. My body feels like jello now but I also feel less stressed than I did earlier today! And, I had a thought - I might open up an Etsy shop online like Allie did, to make & sell scarves for a bit of extra income. (Allie, I hope you won't mind a bit of competition! I promise to just make scarves and not take away from your blanket business!) I don't think scarves will sell well during the summer though so I'm going to wait a few months on that. Maybe by then hubby will have found a decent job, who knows.

Dunni, I don't know if I ever properly welcomed you to the club. Sorry about that, and welcome! Good luck with your GI appointment in 2 weeks, keep us posted on how that goes. Oh, and NOTHING on here is ever TMI so no need to apologize. We've pretty much heard (and experienced) it all so don't be shy about discussing things in detail.

Bozzy, glad to hear you finally got a neurosurgeon appointment! I hope this means you can finally get some of your questions answered and figure out how to treat your chiari and get some relief. Good luck with your 2nd scope, too. Let us know how it goes in comparison with the first scope. I've only ever had the one scope, which was over 2 years ago now. I likely won't have another scope until if/when I do flare up again. Just another reason for me to hope I don't flare up again for a looong time! ;) Anyway, good luck with yours, and I hope the prep isn't too awful this time around. Do you know which prep they're making you do?

How's everyone else? Hanging in there? Enjoying summer? We're having a heat wave here, it's supposed to be 100 degrees tomorrow (or about 38 celsius) which is super warm for this area! We've had no rain recently either so we're at a high fire risk and the plants are dying - the grass in my yard is literally yellow and crispy, and some of the leaves are dying and falling off the trees, making it look like autumn. It's crazy! My guts are not a fan of high heat & humidity (it's always humid here in the summer even during a drought, ha ha) so I've been mostly staying indoors in the air conditioning. I don't like this weather!
 
Ohh psssh Cat, you wouldn't be competition. :p There are many many MANY crocheters on there! It takes a lot of hard work to have a steady stream of orders, but in my eyes its worth it because I love it so much. I'm constantly tweaking and improving my shop, it never ends!
 
Allie, it would be one thing if he were the one with the illness and was not working, I would be sympathetic to that, but... I'm the one with the illness and I'm the one working full-time! Yes, I am in remission now, but even when I was really ill I was still working full-time (I called in sick a fair amount, but I still went in to work on a lot of bad days because I know we can't afford the loss of my income). He's healthy - he had kidney stones last year but those are gone and he's healthy as a horse. For awhile he was looking for a full-time job in his field (art/animation) but couldn't find anything and got depressed. He settled for 2 part-time jobs (the photo portait place a few days a week, plus teaching after-school art classes here and there) and freelance work. Recently his freelance work picked up a bit and he was offered more hours at the photo place so all seemed well, but now there's a lull in his freelance work AND no more photo job, so right now he's basically just teaching an hour here and an hour there and making almost no money. So even though I'm in remission, it's not fair to have this all on me - I'm working 40 hours a week and he's working like 3 hours a week!

The sad part is, he really wants to have kids. I told him I would think about having one kid (I don't really want kids but would be open to one, but definitely not more than one), but he has to get a decent steady full-time job with benefits first, so that I could take time off to take care of the baby (or, to take time off in the event that I flare up during/after pregnancy - I've read that the hormone shift after giving birth can sometimes cause flares). But he's not really been looking for a job and we haven't had the baby discussion lately so, has he just given up on that? I know he wants a kid, maybe I'll remind him of that as a way to light a fire under his butt to get him looking for a job. I refuse to even consider getting knocked up when he's only working sporadically - why does it always seem like the pressure's on me? Sorry for whining a lot today, I'm just so frustrated.
 
Thanks bozzy. Joining this forum has done wonders for my confidence in knowing my own body so I can't wait for them to try and fob me off lol. Seriously thanks for the advice :) will keep you posted.

Aw cat don't worry sound like you have got a lot going on. Just try and stay positive and remember that things can only get better :) will keep you posted and hope your partner finds work soon. Try not to stress. Went through the same thing last year and we thought we would never get through it but we did. Oh and sooooooooo jealous of the heat wave. Peeing down here as per!!
 
Cat: Rotten, hope you manage to get that all straightened out. Bit harsh, 'sorry 'bout that no job' thing. Hope he gets back up on the horse soon, just a job, shouldn't be too depressed about it. But ya know, everyone's different, that's just me. :p

Dunni! WOAH, fire that GI pronto. Well, don't take my word at face value, you make your own decision. That said, IBS is a functional condition. It doesn't cause any physical signs like inflammation or swelling or bleeding! Inflammation simply cannot be from IBS! Get a second opinion! If it's on the record that there was inflammation there, bring the report to another GI and they'll get it set straight.

WHY ARE DOCTORS SO BAD?

Now I'm frustrated. It bothers me to think, some people who wouldn't come onto a forum like this must have gone through his office, had 'just inflammation' seen, and even though that is the definition of INFLAMMATORY bowel disease, he sent them along with naught but a 'it's IBS, stop being dramatic'.

What are ya eating that goes through you? Is there anything that agrees with you?

Nathan
 
Really Nathan? His words were that the inflammation was probs from ibs and the bleeding from straining. Lol, I don't strain, I run too loo. It's anything really such as pasta, rice, a roast dinner, I like my curries too so have to stay away from them now. This past two weeks it's been everything I eat so drinking the shakes and having just one meal of fish or salad.

I can't believe I accepted his diagnoses when he blatantly said inflammation of the colon. I wasn't having any flare at the time so was bound to not be in my worst state. Can't wait to see what they have to say with all my questions and diary and pics. Stomach so extended today and pains again but at work cracking on.

You feeling any better?
 
Yeah really. IBS, as from wikipedia (I know, I know, not a reliable source, but it's good enough for these purposes).

"As a functional bowel disorder, IBS has no known organic cause."

And for completeness, functional disorder.

"A functional disorder is a medical condition that impairs the normal function of a bodily process, but where every part of the body looks completely normal under examination, dissection or even under a microscope."

Don't worry about it. He's a proffessional, you thought he'd know what he's doing. You'll lose that optimism soon enough! :p

Am I feeling better? I'm feeling great, I just happen to be in alot of pain and sick to my stomach. :eek: Nah, I don't get better. I just chug along at this level for months at a time. I had a good week the week before last, I figure I've got another two months before I have a day without constant pain and frequent nausea. :p

I'm not worried though, my doc said it's only IBS. :D

Enjoy,
Nathan
 
You'd think by now I'd have learned not to do my work in a public space when I've got my laptop out! 'Cause I've gotta pack up if I've gotta do my business, it takes me a bit of extra time! Almost didn't make it! :ylol2:

I had blood again, and the whole stool came out in literally about a second. A toilet filler too. :ylol2:
 
nathan.. what a silly thing to do! you need to be prepared ALWAYS for that dreaded run to the toilet ;)

omg, just bringing back memories of when i havent made it to the toilet :( - thankfully only ever happened 4 times in my whole life.. so embarrassing.

im having a really rough day today - thankfully my bowels are fine. but im just so tired! and headachey
 
Hi everyone - I'm sorry so many of you have been so poorly recently and sounds like a decent Dr is no where to be found!

recently my 'IBS' has been really bad - bloating in the morning (massive abdomen), explosive and VERY frequent diarrhoea (fresh blood on the toilet paper from being sore I guess), mucous, nausea (usually able to eat by the afternoon), now waking in the night due to being 'gurgly', now also have mouth ulcers, mild-mod upper right abdo, flank and back pain. Migraines being MUCH worse recently (with tingling down right side face and arm, numbness in fingers, vomiting, difficulty speaking, dropped right side face - but no loss of function in arm etc) and now the tingling is present even without a headache, loss of concentration and fatigue (although I do have a 5yr, 3yr, and 2yr old!). Anyway I went to the GP last week to say that I have this tingling all the time, the migranes are now not controlled by the sumatriptan (I didn't get round to the worsening IBS). She said I had a trapped nerve in my neck (even though it doesn't hurt) and I should go and see a physiotherapist, she said if the sumatriptan wasn't working I should take 3 asprin!!!! Anyway I went to see the physio today - he says def not trapped nerve and I need to go and see a neurologist.

My question is - can neuro and gut problems be linked? has anyone else had anything similar? I know exactly what my GP will say - 'stress' - could it all just be stress? I am a stressy person but haven't been under undue stress recently (although one of my kids has been poorly for a year or so but he seems to be getting better). The tingling I can deal with but the tummy trouble is starting to affect my life quite a bit, the migranes just do not fit in with my life at all (they were copeable when the medication was working), the tiredness is becoming difficult with the kids, work, and hubby all being very demanding. I try to eat a good diet and I do lots of excercise (although I have had to give up running as I just can't do it anymore).

I just want to be healthy and normal and lead a normal life - I plan ahead as little as possible as I never know how I will be feeling each day and how much I will be able to cope with. I feel sorry for the kids when I am tired and grumpy and don't take them places. I don't want to go back to the GP as I know what their attitude will be but at the same time things can't carry on how they are. Just feel a bit down about everything at the moment. Sorry to go on when I know so many of you have been through so much more.
 
bozzylozzy said:
nathan.. what a silly thing to do! you need to be prepared ALWAYS for that dreaded run to the toilet ;)

omg, just bringing back memories of when i havent made it to the toilet :( - thankfully only ever happened 4 times in my whole life.. so embarrassing.

im having a really rough day today - thankfully my bowels are fine. but im just so tired! and headachey
Click to expand...

Hey! How was I supposed to know that I was gunna need to run! My usual complaint is constipation! xD
 
@nathan - haha! fair enough!

@suzysu - yes! IBS can be linked to neurological problems. I have just been diagnosed with a chiari malformation which is compression of the cerebellum into the spinal cord (causes similar symptoms to MS) im fully comfortable with my diagnosis of IBS now because all my biopsies and blood tests are normal. my main problem is diarrheoa and urgency - which i would assume could be caused by rubbish signals from my brain lol - but im not doctor! im not saying you do have a neurological problem, but this is definitely worth investigating. my chiari causes tingling down my right arm too - and my head hurts so much when i cough/sneeze etc.
feel free to message me if you want to discuss this further

hope you get some answers soon! xx
 
Yes Nathan I'm not worried either as mine is ibs too! Aw bless you nearly getting caught out today :-/

So are they not doing any more tests for you and just leaving it as ibs diagnosis?
 
Hey everyone, I hope all of you are doing well. Sorry I haven't been talking much this week...I had a really bad experience on Sunday, and I have completely shut down socially bc of it. I didn't notice it until one of my friends tried to call me and I freaked out and threw the phone bc I was panicking too much to answer....anyway...long story short the other girl that played Dakota in the murder mystery wasn't doing everything that she was suppose to be doing, only coming to be on stage, when there were two other nights she was suppose to be a server, and she just didn't come. She said it was because she had kids, yet she got a babysitter and went dancing till 1am the last night I played Dakota. The next night, she changed out of the Dakota outfit and started to leave, when we were emailed twice that day about having to stay afterwards to tear down the stage. She goes "I have kids, I can't stay". I went to the director and told him because I was tired of her slacking off, and he agreed with me and told her she had to stay. She then calls me a bitch in front of everyone, yells that I don't get it because my husband didn't deploy, then leaves. She then writes this huge facebook status about me being a "typical b*tch", "heartless b*tch", "she has no life, she has no kids or no job", "controlling b*tch", "nobody likes her because all she does is talk trash", etc. I ran out of my bedroom and just sobbed in the middle of the hallway...I'm talking ugly cry. This is the second time this girl has slacked off, I called her out on it (because I am a huge believer in responsibilities), and her writing a terrible facebook status about it. I have to see her this weekend at the cast party, and I am still not happy about what happened. She has made me feel like everyone here hates me, even though I know that isn't true. She defriended me, so I can't see the comments on the status, but one of our mutual friends told me no one was standing up for me. Then she did, and she got a PM from the girl telling her that I talk trash about her. Ugh. So I haven't been very social this week. Sorry for the long story.

Gculk, I completely get you on the laptop stuff! We have a coffee shop on base and I hate when I have a D attack when I'm there. People watch me rush to pack it up, run, then come back....weird? Yes, its weird, but they don't understand! lol :p

Nathan, I'm sorry about the blood. Blood is NOT IBS. That is not a "functional" disease symptom. Keep striving to get the correct diagnosis!

As for me medically, the stress of both the incident on facebook and the stress of my dog throwing up 6 times in one day, which led us to the emergency vet, has caused my flare to kick into another level. I've been on max pain meds and pretty much sleeping alll day. I've got a really busy weekend ahead of me, but theres no way I can cancel any of it, because then that girl wins, so I'm hoping all this rest will help.

Hope everyone has a good weekend!
 
omg allie..i really really cant stand people who b*tch on facebook. shes the one who has kids, yet she's the one acting like a kid and should know about responsibilities.
if she were genuine, and did have to get back for the kids.. any normal parent would have made their work mates/peers aware of the situation in advance (like stating that she couldnt stay upon receiving the email).. rather than just assuming this would be acceptable behaviour.
anybody who attacks on facebook is still classed as bullying.. people should be able to see through that bulls***

you dont deserve this abuse. i wish i knew how to help you, i really do!
 
Aww thanks bozzylozzy. :) She complained about everything on Facebook...she's an athiest, so she made fun of christians all the time...she is german, but she tries and acts like an american, and is a democrat, so she made fun of republicans...she just wants attention and doesn't care that other people are entitled to their own opinion. I will NOT let this happen again. I almost said no to the role of Dakota when I saw she was the other actress doing the role, because I knew this would happen. She treated me like an understudy the entire time. I will be talking to the director and letting him know that if she is allowed to be in more shows after causing drama in the past two I will not be participating. Its either her or me. I'm confident I won't have to leave, but I need to take a stance because this is just way too much stress. I'm sorry that I believe in doing your responsibilities, and she doesn't, but that doesn't mean you should try and completely strip someone of all of their dignity for saying "we need to take down the set still", or in case of the last play "notes will take two more minutes, just stay". Everyone else can't handle it either, so I'm hoping they will just tell her to leave. If not, I won't put myself in that situation again. I was bullied in elementary school and middle school, I will not let that happen anymore in my adult life!
 
just laugh in her face, because Italy are currently beating Germany in the semi-final match of the Euros haha!

i completely agree that you should take a stance, i was bullied in secondary school - all verbal abuse. but it knocks you down completely. girls are generally worse when it comes to b*tching etc.. and can be really hurtful

good luck allie :hug:
 
Allie, what an awful bully. :( I saw your post about it on FB but didn't know the full story. You don't need her in your life and I think you're right to tell the director "it's her or me" for the next play. Cut this girl off, no contact whatsoever, you don't need her drama - the added stress will only do bad things to you! I had a somewhat similar experience not too long ago, I cut a friend off completely and I'm so much happier for having done so. She created a lot of drama on FB too. I wrote a long post about this in Members Only awhile back when I first saw through her lies, but in a nutshell - this was someone who I thought was my friend, and when we first became friends was a few months after I got sick, and I explained then to her that I was undergoing tests and might have Crohn's. She told me her mother has Crohn's so we bonded over that mutual connection, and a few months later suddenly she was diagnosed with Crohn's too. So I thought I had a friend who I could really relate to. But I never saw her have to run to the bathroom in a hurry, she never cancelled plans because she was too ill, nothing like that. And then one day we were talking and I mentioned something about her mother and Crohn's, and she said "well, my mother's just lucky she doesn't have it!" And I was like, WHAT??? During this same conversation my so-called friend also said "I've been taking my Remicade at night lately and I think that's working really well." And I was like, double WHAT??? I'm not on Remi but I know it's an IV infusion that most people get about once every 8 weeks, so there was like 10 things wrong with her basically saying that you take it at home every day (or night). She had also told me once that she was on an inhaled version of Cimzia, and when I looked that up I found that no such thing exists either. So I called her on her lies, first I brought up the mother thing to see how she'd react. Someone on the forum told me that pathological liars, when caught in a lie, will make up a new lie to try to cover it up. And that's what my "friend" did, she was like, "Did I say my mom? I meant to say my Grandma! She practically raised me so I call her mom!" All that was lies, her grandma lives in another country and every time she mentioned her grandmother, she called her "Ooma" which is apparently the German word for grandmother - she never called her "mom" and she wasn't raised by her. So I told her I was sick of the lies and it was also clear she made up the entire illness (!!! How weird is that, did she make up having Crohn's just to forge some sort of false bond with me???) so I cut her off. I blocked her from FB immediately but some people I know stayed FB friends with her, and apparently she posted a bunch of "woe is me, I hurt my bestest friend forever" type posts and said she was going to leave FB for awhile because she was so sad... and then the very next day she apparently posted things like "Why should I leave Facebook! None of this is my fault!" Hah! I'm SO glad she's out of my life and no longer creating drama for me. She tries to contact me every so often but I just cut her off. She sent me a gift in the mail recently and I just returned to sender without opening it. Anyway, so that was wayyyy too long, but you need to cut the drama queen b*tch off and not have any contact and stop caring what she thinks. Your mutual friends know you, they know what kind of a person you are, and if they're good people too then they'll stand by you. And we're always here for you too, obviously none of us know you "in real life" but from everything you've ever posted on the forum, you've never been anything but kind and sweet and you've never created any drama on here. So dump the b*tch as a friend and move on, don't even acknowledge she exists, I promise you'll feel so much better for doing so! And big hugs to you, I know from my experience with my friend that this really sucks and puts so much stress on you when you feel like the bad guy - but you are NOT the bad guy, she is! She's just bullying you into feeling like the bad guy.

Also, for what it's worth - I'm a democrat and an atheist, but I can be friends with all types of people. I don't always agree with everyone's views but that doesn't necessarily make me right and them wrong! It just makes it my opinion vs. theirs, both are valid. I have one friend in particular who is VERY religious and she always asks about my health and says she'll pray for me - I don't believe in the power of prayer, but I do appreciate the sentiment and the fact that my friend is thinking of me and cares about me. And I used to be much less tolerant of other views in my younger days, so I think it's a maturity thing - this bully girl who knocks others' differing views sounds very immature indeed. I would guess she's very insecure too which is why she feels the need to bully others - most bullies are really insecure. Anyway, I'm rambling. But I hope my insight helped a little bit anyway. How's Kallie doing, is she still vomiting or feeling better now?

How's everyone else doing? I am okay guts-wise and feeling better about hubby's work situation. Yesterday before I went to work I left him a "to-do" list so that he could at least get some things done around the house... and he completed the entire list! So at least he didn't just sit around watching TV and being depressed all day. He's seeing if he can apply for unemployment too and I left him another list of things to do today, hopefully he finishes his list again! If he's not working much, at least he's doing stuff around the house so that's one load off my shoulders. So yeah, I'm doing better. I have a barometric pressure headache from this weird weather - it's 100 degrees and super humid, when you walk outside it's like being punched in the face with sticky heat! Yuck! Heat and humidity tend to cramp up my guts, plus my "time of the month" just started so I'm a bit crampy to begin with, so I'm staying indoors in the air conditioning as much as possible! I hope everyone else is surviving the heat (or that there isn't this much heat where you are).
 
Wow Cat! That is insane! Why would anyone want to make up an illness to have a friend? You don't need an illness to be friends. :( It was a good decision to cut her off, you would never know if what she was saying was true. I agree with you on the opinions part....I always try and think of the other side when it comes to beliefs, whether they be politics, religion, or anything else. I respect others opinions and will never bring them down for their beliefs. This same girl trashed someone during our first play together because they were a christian...she came up to me, in front of the persons little sister, and called them insane and b*tchy for saying she believed in Christ. The girl she was talking about was a soldiers daughter, not even 16. Really?!?! You would stoop that low? She also called me stupid for being a christian..she said "oh, I thought you were a scientist, I thought you were smarter than that." Seriously?!?

I'm glad the situation with your hubby is doing better! At least you guys are on the right track and the house gets some extra care because of the free time. Our weather has been hot too, at least around 10 degrees warmer than summer last year, and there is no air conditioning, so it is a little uncomfortable, but not too bad. We plan on taking the dogs swimming soon so I'm excited about that. :)
 
I'm not sure why exactly she made up both herself and her mother having Crohn's - it could just be that she's a pathological liar, or maybe she's got Munchhausen's where she needs to fake an illness for attention, I don't know. I actually feel kind of sorry for her, she clearly needs mental help for whatever caused her to create all those lies. I do know that she takes a lot of Vicodin and sometimes Percocet too to the point that I am pretty sure she is addicted. I think she pretends to be sick to get prescription pain meds, although I think she fakes the illness to get attention too. At any rate, she's an awful person for faking an illness that a lot of people are really suffering from, and I'm glad she's no longer my friend.

No air conditioning, eek! We had no a/c for the first summer that I was ill, and as I mentioned, heat & humidity are not friendly to my guts. That was a very miserable summer! Last year we spent a bunch of money and got central air installed. It was expensive, but so worth it. I look at it as an investment into my health, and hubby just loves it. I'm one of those people who is always cold, and he's always warm, so he's miserable in the summer anyway since he's already warm to begin with. I'm always cold so I find myself bundling up a bit sometimes in the air conditioning, but that's still better than my guts cramping up all the time from too much heat. I'd rather be chilly than crampy. :)
 
Had a doc appt today. I had, well, an interesting result on my physical checkup. Was checking my breathing, checking for cold or whatever cause I've got a sore throat. She then started listening to my heart.

Said I've got a murmur. Not anything major, but it does semi-explain my fatigue, and the fact that when I've got symptom fatigue I feel like I'm always out of breath. Especially when considering my red blood levels are on the lower range of normal, possibly lower because of recent bleeding, and the fact that anemia can be a cause/contributor to a heart murmur. Going to get an ecg, but that's going to be something far down the line because of wait lists.

I figure it's nothing to worry about, just an oddity more than anything. But at the very least I know, hey, it's not all just in my head. :p

Yowzer allie, never good when someone gets sour about having to do their job. Not a fun responsibility complaining about someone's slack, but it has to be done. You don't get paid for hours, you get paid for work.

About blood =/= IBS, I was being facetious in my 'I'm not worried' bit. I actually am getting taken pretty seriously atm, I've got a new GI from this GP, just she thinks (or maybe thought) that there might be some merit to my old GI's statement of blood being hemmoroidal.

Cat, nutcase friend. Reminds me of someone I once knew. Total wonkhead. Can't remember specifics, never good with them, but yeah, lies lies lies. All you heard come out of her. It amused me mildly cause I was younger then, then I got bored, then just sad. Sort of pathetic, and I don't mean that in the offensive way either.

Never got the whole 'we've got different opinions, we can't be friends' bit. I'm pretty... Opinionated shall we say. On topics I have researched, I can be thorough, and tend to get carried away in discussions at times. But hey, if you're alright, I really don't care if you are a royalist :ylol:.

Enjoy,
Nathan
 
Nathan, did they say how severe your murmur is? My mother has a small/minor murmur and she runs marathons, so clearly it doesn't really affect her much and I would think then that if yours is fairly minor then it shouldn't impact you too much either. Although when you add everything else in then maybe so, I don't know. As far as the bleeding goes, and trying to debunk the hemmie theory, have you noticed any pattern as far as eating a particular food and then bleeding afterwards? For me, I usually don't bleed, and the rare times I do usually seem to be due to fissures and/or hemmies. But once I tried eating Greek yogurt - big mistake! It hurt the whole way through, and then I pooed a fair amount of blood that was not due to a hemmie or fissure. I've never experienced that before or since and I haven't eaten Greek yogurt since, either!

And what's wrong with being a royalist??? Ha ha, just kidding, I haven't actually heard that term before. I'm guessing it means someone who is loyal to the queen of England? If so, I think she has awesome dogs (I'm a corgi owner too - so is Allie) but otherwise don't have much of an opinion on that. :p

How's everyone else doing? Anybody have fun weekend plans? I'm going to see my grandparents this weekend, the whole family is getting together to celebrate both my grandmother's 80th birthday AND my grandparents' 60th wedding anniversary. :) It's supposed to be really hot weather though and there will be like 20 people crammed into my grandparents' tiny condo, that part might not be fun. It was kind of cute though, I called my grandpa to see if I could bring my dog to the party - he loves dogs and he particularly loves my dog - and he told me, "It wouldn't be a party without Lily!" Ha ha. He refers to her as his "great grand-dog". So the whole human family and one great grand-dog will be celebrating this weekend.
 
Aww that is so cute Cat! Lily going to the party! :p Have fun!

Nathan, I'm with Cat on the hemmie thing. I have one external hemmie that I have had for many, many years (since I was at least 17), and I've had some fissues as well. I know the bleeding is coming from a fissue when it is very painful to have a BM, because it literally feels like something is scraping against an open cut...not fun! If the blood you are having is directly on the BM, or is black and tar like, it is not blood from a hemmie...hemmie blood is usually a small amount, bright red on the TP.

So, I went out last night.....I don't regret going, but I am definitely paying for it. I had taken tramadol before I left (I had stayed in pain all day so that I had tramadol to take that late at night), and I made the mistake of drinking too much while I was there. I rarely drink, and I only bought myself two drinks, but I had forgotten that germans like their drinks very strong! I was only tipsy when I bought my second drink. Then my friend bought me a shot, and then my husband bought me another as a joke (it was not funny to me but my friends were not letting me do anything until I took it). I ended up drunk, which I NEVER do. My friends and husband thought it was hilarious, but I was just embarrassed. >.< Oh well. The pain and symptoms of my MCTD are now so much worse, so I couldn't sleep all night long, and am probably still too uncomfortable to get any sleep (its almost noon here)...so I'm running on two hours of sleep after a night of drinking! Geez! And in about two hours I will be taking my dogs to the dog park. I'm pretty sure I am crashing when I get home, esp. with the heat wave we are going through. Oh, BTW, something really awesome happened last night...I found out all of my friends here were absolutely pissed about the girl that has been bullying me over Facebook. I told them that I will not work with her in the theater ever again, and they agreed with me, and they told me that the theater director is livid at the girl for what she did to me, so it shouldn't be a problem to let him know that I don't think she should be welcome anymore. I don't know if it will work out that way, since we are all a family and the director is such a sweet man, but at least I know my friends have my back. That made everything that happened last night completely worth it. :)
 
Hello guys,
Been reading, just been rather busy this week to reply. Sorry to see a lot of us aren't doing so well, wishing you good thoughts :)

I've been feeling better since my last post, although the dizziness is geting worse. It always comes at night, and to the point where I think I'm going to pass out, but I did have some good anti-nausea meds that have just ran out, annoyingly.

I felt so good on Friday that I did some more essay, all about Contract Law, eek! I also felt well enough to get back to my favourite hobby, baking! I made gluten free red velvet cake with a swiss meringue buttercream. They tasted amazing, if I say so myself.
Until I discovered rather violently that egg is a trigger food now :(

I get blood tests back on Monday morning, so I'll post up what they say.
Also, majorly TMI, but, slightly worried regarding a lot of potential blood in stool. I've had the bright red often, but can it show as an odd rusty colour instead? Been getting that a lot recently, along with mucus. I should deffinately mention this to my doctor, right?
 
The red velvet cake sounds amazing. :) My husband just bought gluten free bisquick, apparently the pizza we make has been bothering me lately (he pays a lot more attention to what hurts me more than I do) so he is going to see if it is the gluten. As for the blood, yes, you NEED to tell that to your doctor. They will probably do a stool test to check for blood and a blood test to check for anemia. Blood on your stool is NOT IBS. I have heard that mucus in your stool can be caused by IBS though. I have mucus in my stool often...it looks like I sneezed into the toilet! >.<
 
@allie - true friends will always see through the bulls*** when somebody is talking badly about you. thats great news that everyone is on your side :) hope you've had a good weekend?

@chell - what blood tests are they doing? sorry to hear that egg is a trigger food - i find when my bowel is in sensitive mode, egg is a trigger for me too :( and i looooove poached eggs on toast.. and dont even get me started on cakes!

@cat - hope you had fun this weekend for the 80th birthday and 60th anniversary! thats awesome! and hopefully it wasnt too hot!

@nathan - hopefully the murmur doesnt indicate anything serious. and good luck with the ECG

as for me, ive been having good days followed by bad days. today is a bad day, and i go back to work tomorrow :( boo!
i saw the podiatrist on friday (because i have flat feet).. i was referred because of my knee pain. but after describing the pain to him , he has immediately referred me to a rheumatologist. geez louise! i dont think there is a type of doctor i havent seen lol!!!
 

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