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One thing I have just remebered and ex hubby kindly reminded was that I had a pelvic ultrasound about 2 months ago for what I thought may be an unrelated issue, referred by a gynae consultant. I get occasional stabbing pains in my section scar, which is obviously explained by the adhesions, but they also commented on my small bowel being slow moving. I never got called back for a report though by the GP so will have to bring that up to I think.
I agree with you allieinwonder, IBS does seem to keep being thrown around now but feels like a rather rubbish term when they can't figure out what's going on. Who knows, I'm not the qualified one after all...
 
How weird, Penguin, I also had a doctor recently tell me, as he was listening to my guts with a stethoscope, that my bowel sounds to be slow-moving. But it feels like the opposite is true, especially when I'm having bad diarrhea, it seems that food goes right through me super quickly! I told him this and he said he believes me and he must have just listened at a bad time or to a quiet spot. How odd that you were told the same thing!
 
penguine I just read back and saw you ahd your scope...mine was really painful too and they had to stop, dont beat yourself up that shit hurts!!
 
lol soretum, it really does, in many senses! :biggrin:

cat-a-tonic, it really does sometimes feel like the opposite doesn't it! Thank you for all your help and information. I will definitely seek out that vitamin.
 
Penguin, even if the colonoscopy didn't find anything, one normal test does not equal an IBS diagnosis (or it shouldn't). IBD can be very difficult to diagnose given that Crohn's can occur from mouth to anus. So keep pushing if nothing is found from the biopsies!

Also, hello to a fellow ME/CFS sufferer! I got mine at 15 and gastro symptoms started at 19. Needless to say now they are both awful!

Cat, currently waiting for confirmation of a complaints service meeting (asked to go in on the 16th). It will be at this I will ask to change GI's, already mentioned in the meeting request letter. I don't know how far it will get me, since at a meeting with all the GI staff they changed my scan result to bring me back to their IBS dx, but what I do know is I can't continue with current GI.


Yes I will certainly seek help should the bleeding get any worse, I am under orders from Mum lol.
 
Star, your mom sounds like a good lady. :) I know you've mentioned in previous posts that she takes time off of work to bring you to appointments and stuff like that. It must be really nice to have such a supportive parent! My parents are both kind of clueless about what I'm going through. My dad is clueless about most things, ha ha. And my mom got it in her head awhile back that I must have celiac and that I'd be "cured" if I'd just give up eating wheat. It's kind of a complicated story, but basically, a couple of my mom's cousins, their children, and their father (my mom's father's brother) all have/had celiac. My mom's dad died of colon cancer relatively young and it's entirely possible he had celiac and/or IBD and/or something else as he seemed to have a "sensitive stomach" all his life. So my mom, after talking to one of her celiac cousins, decided her dad must have had celiac too, and since I am sick then I must have it too, and therefore she also has it - even though she really had no symptoms! So she gave up gluten and supposedly noticed a difference for the better, as did a few other members of that branch of my family. None of them were actually tested for celiac but they are now all convinced that they've got it.

Meanwhile, I actually WAS tested for celiac in both blood tests and biopsies and it all came back negative, plus things like breads and pasta are some of my safests foods that I can usually eat even in a flare. So I know for sure that I do not have celiac. But for so long, over a year, my mom kept harping on me about celiac. She didn't listen to me at all! Finally I put my foot down and told her in no uncertain terms that I don't have celiac and I don't want to hear any more about it, ever! She finally shut up about it after that, thankfully. But, long story short, she's been less than supportive in my mind. I'm sure in her mind she was just trying to "cure" me but to me it was totally annoying and added unnecessary stress for me!

Edited to clarify: Even if my mom's dad didn't have IBD, there's still IBD in my dad's side of the family - dad's mother's father had UC. So if I do have IBD, it's possible that either side of the family could have given it to me! There's only celiac in one branch of my mom's side of the family though.
 
Star, hello :) I've not met anyone yet who suffers with both. Largely I've recovered to about 80-90% which is great, though the troubles I have with my bowels sure does make things feel much worse some days. I have heard of them being linked before but as I say, I've never met anyone who experiences it the same as I do. I'm glad you have lots of support from your family. I'm very lucky that I do too. Both my parents are supportive and know they help out with the kids when I'm having bad days.
Have spent most of the day feeling very rubbish after the colonoscopy yesterday but starting to feel slightly more my usual self now. I need to, I'm back to mummy duties in the morning!

Hope you're all doing ok today

Edited because my spelling was terrible!
 
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Hello everyone! you have probably all read my thread "journey from hell" I have been through a lot this past month and a half. It all started with D about 3x a week only at night. week later stomach cramping that sent me to the hospital. everything with that has pretty much subsided but i still feel like I am bloated a lot. I have been passing normal stools and then came the blood. It was some in my stool and I was pretty scared at this point. A week later I started experiencing joint pain and have ever since. My family and doc keep saying its stress but I feel like a 90 yr old! I had a colonoscopy yesterday and it came back normal, my doc said that I can 100% rule out UC or chrons. I asked then why the hell do I have joint pain he said I needed to see my family doctor. He said the pain and bleeding from my booty was from the hemorrhoids and gave me instructions on how to take care of it. He took some biopsys as well. The upper endoscopy didnt go so great as I kept pulling it out of my mouth although I was under some heavy duty sedation. So I am scheduled for the full procedure on the 16th. I feel so hopeless and scared! and I cant even work : (
 
Cat-a-Tonic said:
Is it IBS? Probably not, especially if your symptoms are bad enough that you're here! IBS is a brain-gut malfunction, something in your brain tells your guts to cramp which can cause some pain, nausea, and diarrhea. But IBS doesn't cause massive pain (from your "my story" thread, you said your pain sometimes interferes with eating - this is NOT a part of IBS, the pain would not be that bad with IBS).
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This is not necessarily accurate. If you have ever spent any time on an IBS forum, those people are definitely miserable and in "massive pain" on a regular basis. Whenever my problems were bad (no IBD found in my case), I had pain bad enough to cause me to faint once and vomit on several occasions, so that's pretty intense in my book as I have a reasonable pain tolerance. I wanted to die more than once. It may not be the same as pain from inflammation eating through your intestines, but it's still real pain and it hurts.

I know everyone here doesn't want to be shooed off by their doctor telling them they have IBS, but it also doesn't need to be discounted as a minor annoyance.

Don't take offense, Cat. :ytongue: I'm just sayin'...
 
No offense taken, May - although I wonder how many of the people on those IBS forums actually have an undiagnosed IBD or some other similar illness and don't know it. I just think that a brain-gut signal malfunction shouldn't logically cause pain that's so incredibly severe that it causes fainting or vomiting. If it's that bad, it seems to me like there must be something else going on. Just my opinion of course, I'm not a medical professional or anything like that.

Dayz, glad you found this thread and I'm sorry to hear that your colonoscopy didn't find anything. That doesn't necessarily mean that it's not IBD, though. Crohn's can manifest anywhere from mouth to anus, and it has a "skip" pattern. So if it wasn't found in your c-scope then either it's somewhere else, like in your small intestine, or it's possible that it is there but it isn't bad enough yet for scarring or inflammation to have been seen on the scope. Biopsies can find crohn's, if they're taken in the right spot. Since Crohn's can have a skip pattern, sometimes biopsies can miss it since the illness can be patchy and appear between areas of healthy intestine.

If your doctor is trying to attibute this to being stress or feels that one colonoscopy rules out IBD 100%, personally I would get a new doctor! At the very least, push for more testing. You mentioned in your "my story" thread that your doc wants to do an upper endoscopy, which is a good one to have. That one will look at your esophagus, stomach, and the start of your small intestine to see if there's any illness/inflammation going on there. Like the c-scope, it can also take biopsies. And best of all, no prep is involved! :)

In the meantime, Dayz, and I know this is easier said than done, but please try not to stress out about all this stuff. Stress can have a very real impact on this type of illness, whether it's IBD or IBS, and getting too stressed will only make you feel much worse. So watch a funny movie or get a massage or just take a nice hot bath, whatever will relax you and make you feel better.

Oh, and I wanted to add - you mentioned joint pain. That is really common with Crohn's & colitis as well. I get tons of joint pains when I flare up, and I was recently diagnosed with arthritis. If you feel like you've got arthritis, your primary care doc should be able to diagnose it relatively easy. Mine was diagnosed with an x-ray, and I now go to physical therapy for it and am doing a bit better.
 
Complaints service meeting has been set for next Thursday, is the first battle in the war so to speak!

It's ironic that I am able to eat a better variety of food now, but I have never felt so bad. Was convinced I was going to pass out today when I had to go into town to do errands. I must have a bleed inside, I really must. Still not heard from GI so no way of knowing whether anything was picked up in my last bloods. But I will contact Rheumy soon, ahead of July 20th appointment, for blood forms to get my CRP&FBC done again before my appointment in the interests of saving time. I've been off the iron supplement 6-8 weeks now, something has to show soon!

It could be stopping my multi vitamin (2 weeks ago) that is leading to this iller feeling, but GI was most insistent. Hopefully new one will let me back on it. Usually if i disagree with a Dr I do what I want, but in this case if it goes wrong it reflects badly on GI which would be good for me. Terrible isn't it.
 
Good luck for the complaints meeting Star. I hope you're feeling a bit better this evening than you were earlier
 
This is all just very scary for me : ( I have an upper endoscopy scheduled on the 16th. I just feel like seeing someone right now...I know very impatient. Cat I followed your advice and scheduled an appt with another GI doc in my area. He is ordering all of my work from GI consultants and is going to return my phone call to say what he thinks and when we can meet. Next step will be pill cam I am definitley going to push.

StarrGirl- I was wondering what kind of tests do they run with the rheumy as I want to make an appt but need a refferal.

My dad has IBS and he is convinced I do to. He has had some pretty fierce symptoms including blood in his stools, joint pain and massive pain. He has been checked up and down with every possible test and nothing comes out. He has his IBS under control and know what his trigger foods are and stays away. I have read in other threads that people with IBS are convinced they have something more eventhough all tests come back normal. This is so horrible that we have to go through this- This really is a major pain in the ASS!
 
Cat-a-Tonic said:
No offense taken, May - although I wonder how many of the people on those IBS forums actually have an undiagnosed IBD or some other similar illness and don't know it. I just think that a brain-gut signal malfunction shouldn't logically cause pain that's so incredibly severe that it causes fainting or vomiting. If it's that bad, it seems to me like there must be something else going on. Just my opinion of course, I'm not a medical professional or anything like that.
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I have wondered that, too, b/c of how severe they describe their pain and on a very regular basis. But apparently it's pretty common to feel severe pain with IBS. If the malfunction is causing spasms in the colon, though, apparently those can be pretty painful.

I thought for sure fainting would be an indication of something awful in my case (that's the only reason I went to the doc), but my GI didn't even flinch when I told him about it, and my GP said that if it ever happened again, to let them know. I think Lulu commented before that vasovagal fainting or whatever it's called, is fairly common.

I found this thread, which you will no doubt find interesting, b/c the OP ended up getting dxed with Celiac. ;)
http://www.ibsgroup.org/forums/topic/137690-how-bad-is-the-pain/
 
Dayz said:
StarrGirl- I was wondering what kind of tests do they run with the rheumy as I want to make an appt but need a refferal.
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Well with my Rheumy I have had White Cell Scan, MRI of painful joint and a CT scan, along with numerous bloods. It really depends what the problem is.
 
I had to actually take some pain killers for the joint pain. My stomach is fine but this joint pain is driving me crazy!

Thank you and I hope you get better soon : )
 
You're more than welcome :)

Also decided to ask rheumy to test B12 (only done once) and Vitamin D (only done once, came back slightly low) again. As I was told to stop the multi vitamin maybe any deficiencies/ malabsorbtions will show now.
 
Hey I just want to tell ya all to hang in there. It's a difficult run not knowing what you have nd if you'll ever get treatment. My symptoms were very clear, chronic blood in stools and blood diarreah which eventually turned to just blood. I had a colonoscopy by a pompous GI doctor which showed inflammation and sat me down after to tell me I had UC but wouldn't treat me until the biopsies came back which lead to me eventually fighting for my life. He never accepted my calls and never got back about it. I would go to the ER and have pills shoved at me and the doctor spacifically stating they wouldn't help me(even after the CT scan shows bad inflammation of my colon) It took a year to finally get a diagnosis and that only happened because I bled out so much I needed two pints of blood. I hope none of you go through what I did and I hope all off you get diagnosed soon
 
Melissa, that sounds just awful, I'm so sorry you had to go through that! It never ceases to amaze me the "bad doctor" stories I hear on here. Fortunately there are plenty of good doctors out there too, sometimes they're just a little hard to find (hmm, like my illness! ;) ). I can't believe that doctor found inflammation and dx'ed you yet still refused to treat you! That's just awful. I hope you have a much better doctor now!

May, that's an interesting link. I noticed that the person said, in the last post, that he had been tentatively diagnosed with celiac via a blood test, and then he didn't post any further. I wonder if he really and truly has celiac? After all, the blood test can be rather inaccurate. (I know most blood tests aren't known for accuracy, but that one in particular is supposed to be not much better than just guessing!) I hope he gets some further follow-up testing to confirm. I've always been told that upper endoscopy with biopsies is considered the "gold standard" for celiac diagonsis, and my GI said that because my biopsies came back normal, that means we have ruled out celiac 100%.

Star, good luck in a few days, I hope the complaint meeting is productive! Let us know how it goes!

How's everybody else doing today? I didn't have such a great weekend, too much stress. I posted a longer post on this subject in the "mini vents" thread, but in a nutshell my brother lives with us and for the past couple of months he's been driving me crazy! Lately he has taken to lecturing me about what I eat, what TV shows I watch, and especially about my illness. I've shouted at him and explained about my illness countless times but he just doesn't get it. The latest thing he did, on Saturday, was to tell me that if I change my attitude and if I look to him as my "health role model" (hah!) that I'll get better. I screamed at him that he is certainly no role model in any regard (he's nearly 26 and still living with his big sister, he works a slacker job because he "doesn't want to work for the man", he smokes a ton of weed and he spends nearly every waking minute on his computer - in other words, he's a total loser, and I'm just about ready to kick him out of my house). So, when he started in on lecturing me, again, I screamed at him that he's an a-hole and that he doesn't understand anything about what it's like to have a chronic illness, and that if he can't shut up then he needs to get out of my house! That was seriously the last straw. If he so much as hints about anything related to my health, diet, etc, from now on, he's gone. I already warned my mother that bro cannot stay much longer (he lived with our parents before he lived with me - yep, looooooser!). I am so done with this and don't need the stress! I think he might have mental issues, but at this point I can't even bring myself to care. He has a job and can afford his own place. At some point I have to put my health and sanity first, and that time has come.

So, because of the stress, I've had a lot of stomach pain & nausea the past few days. My arthritic hip has also been bad for 4 or 5 days now, ever since there was a shift in the weather (it went from hot & sunny to cooler and rainy). I just feel kind of blah today. To top it all off, hubby is working on putting together a bit convention event thingy next month and he's totally stressed out about it. It's hubby's birthday today, and his birthday wish is that, even if things are bad (mostly money-wise, we've been extra broke lately and my car needs new brakes, stuff like that), if for the next month I could just pretend when I'm around him that everything's fine so that he doesn't get even more stressed. Wonderful. I guess that means I probably need to wait at least a month before I kick brother out (although I will give him notice that he needs to start looking for a new place like now-ish). Urggghhh. I hate stress! And I hate having to bottle it up even more! This is NOT going to be a fun month. :(
 
Sorry to hear that Cat :(

I have had a night I would rather forget in a hurry! Been feeling bad since the weekend, alot of pain, coming and going, a bit worse than normal. Then Monday 2am I am awoken to go to the loo, lovely. Then Monday morning I wake up in terrible pain and feel awful. Came round in the afternoon and then woke after nap at around 6pm with the most god awful pain. Got up around 6:45 and back in bed to try and sleep it off less than 45 mins later. Lasted hours and hours, various trips to the toilet, was really, really bad. I would have gone to A&E but I was worried about needing the loo on the way (20 min taxi ride to get there). I probably should have done actually but too late now. Didn't get much sleep either. Pain is better today but if it comes back will have to go to the Hospital, don't feel that great either really still. Going to try and get some sleep.
 
Oh Cat, I am so sorry that you are not getting the support you need. You are right, stress does aggravate. But, your hubs needs to see that you not being able to be you and feel what you feel is not fair to you. He is trying to control his stress, but how is increasing yours helpful? That's just not fair.

Your bro sounds like a real gem! : )

Starr, I hope you feel better soon.

I had a small bowel CT friday after work. It's normal. I have an EDG scheduled the 21st at 3. I have been regurgitating a lot lately and it feels like food sometimes gets stuck in my esophagus. I hope that means he'll find it there. If that comes back normal I am going to cry and/or scream. I had a pretty normal dinner last night and no side effects. I even ate cantaloupe Sunday and grapes last night. Yay! Maybe this flare is finally passing. I am craving salad and fruit. I want to eat healthy food again.

I hope everyone is okay!
 
Meg, sorry to hear that the CT came back normal. Yet another frustration, I know the feeling. :( EGD is upper endoscopy, right? I hope it goes well. That's one of the easier tests, no prep except for no food/water the night before, and you get to sleep through it like during a c-scope. I had my upper endoscopy last summer even though I had no upper gastro symptoms, and then of course I started experiencing acid reflux symptoms (possible hiatus hernia) in December 2010. So I might have to have another upper endoscopy myself soon, especially now that I've had gastritis as well. Anyway, keep us posted on how your upper endoscopy goes. And glad to hear that your flare is finally passing! I can sometimes eat salads, although usually they turn my poo green so I think that means I'm not absorbing all the nutrients or something like that. I recently got a juicer too and I've found that fresh juice is really easy on my tummy. If you can find a cheap juicer, get one - I got mine for $10 at a garage sale. Store bought juice goes right through me but fresh homemade juice doesn't have the same effect.

Star, sorry to hear you're doing worse. :( Just a couple more days until your complaint meeting, I hope you're feeling up to it! Although if you're still feeling bad, perhaps the people you're meeting with will take one look at you and agree that you're too ill and not getting proper care! Good luck, I do hope you feel better, at least able to leave the house and get to the meeting. Keep us posted on how it goes! I will be thinking of you on Thursday and hoping for some good news for you.

I am worse today too - yesterday afternoon, about an hour before going home from work, I felt this sharpness in my right hip (the hip that has arthritis). It felt like my keys in my pocket had shifted and were sharply poking me in the hip. But when I put my hand in my pocket to adjust my keys, they weren't anywhere near my hip. The poking feeling was a new pain! Usually my arthritis is a dull ache, so I am not sure what caused it to suddenly change to a sharp pain. I was sitting at my desk, not doing anything that would have caused it to change or worsen. It's still pretty bad today. I'm not sure if I should make a GP appointment about this or if I should wait until my next physical therapy appointment. I do see my GI on Monday so I will mention it to him then but I don't think he'll do anything about it. He doesn't seem to pay much attention to my "extra-intestinal" symptoms. I don't see my physical therapist again until next month but I am going to try to get a sooner appointment. If I can't, I think I'll make a GP appointment. This new pain is pretty unpleasant and lately my hip has been getting worse in spite of the physical therapy exercises that I've been doing twice a day. To top it all off I won't get to see my physical therapist for much longer because she's about 8 months pregnant so she'll be gone soon on maternity leave.
 
Cat-a-Tonic said:
Melissa, that sounds just awful, I'm so sorry you had to go through that! It never ceases to amaze me the "bad doctor" stories I hear on here. Fortunately there are plenty of good doctors out there too, sometimes they're just a little hard to find (hmm, like my illness! ;) ). I can't believe that doctor found inflammation and dx'ed you yet still refused to treat you! That's just awful. I hope you have a much better doctor now!

May, that's an interesting link. I noticed that the person said, in the last post, that he had been tentatively diagnosed with celiac via a blood test, and then he didn't post any further. I wonder if he really and truly has celiac? After all, the blood test can be rather inaccurate. (I know most blood tests aren't known for accuracy, but that one in particular is supposed to be not much better than just guessing!) I hope he gets some further follow-up testing to confirm. I've always been told that upper endoscopy with biopsies is considered the "gold standard" for celiac diagonsis, and my GI said that because my biopsies came back normal, that means we have ruled out celiac 100%.

Star, good luck in a few days, I hope the complaint meeting is productive! Let us know how it goes!

How's everybody else doing today? I didn't have such a great weekend, too much stress. I posted a longer post on this subject in the "mini vents" thread, but in a nutshell my brother lives with us and for the past couple of months he's been driving me crazy! Lately he has taken to lecturing me about what I eat, what TV shows I watch, and especially about my illness. I've shouted at him and explained about my illness countless times but he just doesn't get it. The latest thing he did, on Saturday, was to tell me that if I change my attitude and if I look to him as my "health role model" (hah!) that I'll get better. I screamed at him that he is certainly no role model in any regard (he's nearly 26 and still living with his big sister, he works a slacker job because he "doesn't want to work for the man", he smokes a ton of weed and he spends nearly every waking minute on his computer - in other words, he's a total loser, and I'm just about ready to kick him out of my house). So, when he started in on lecturing me, again, I screamed at him that he's an a-hole and that he doesn't understand anything about what it's like to have a chronic illness, and that if he can't shut up then he needs to get out of my house! That was seriously the last straw. If he so much as hints about anything related to my health, diet, etc, from now on, he's gone. I already warned my mother that bro cannot stay much longer (he lived with our parents before he lived with me - yep, looooooser!). I am so done with this and don't need the stress! I think he might have mental issues, but at this point I can't even bring myself to care. He has a job and can afford his own place. At some point I have to put my health and sanity first, and that time has come.

So, because of the stress, I've had a lot of stomach pain & nausea the past few days. My arthritic hip has also been bad for 4 or 5 days now, ever since there was a shift in the weather (it went from hot & sunny to cooler and rainy). I just feel kind of blah today. To top it all off, hubby is working on putting together a bit convention event thingy next month and he's totally stressed out about it. It's hubby's birthday today, and his birthday wish is that, even if things are bad (mostly money-wise, we've been extra broke lately and my car needs new brakes, stuff like that), if for the next month I could just pretend when I'm around him that everything's fine so that he doesn't get even more stressed. Wonderful. I guess that means I probably need to wait at least a month before I kick brother out (although I will give him notice that he needs to start looking for a new place like now-ish). Urggghhh. I hate stress! And I hate having to bottle it up even more! This is NOT going to be a fun month. :(
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Iam so sorry : ( thats sounds awful. I was having a good weekend too hanging out with my cousins and laughing eventhough I had to go to the hospital. And on Sunday my brother tells me that he wants to take his life and all of this drama happened. I felt terrible. I already feel like my symptoms are getting worse as we speak and the anxiety ripped me apart. I felt like running but I didnt know where, I just wanted to run. I am getting a refferal to a rheumy today but I am just so exhausted. I wish you well Cat you are such a great person you dont deserve all of that.
 
Thanks, Dayz. And it sounds like our brothers think alike - mine has also threatened suicide in the past, although to my knowledge he's never attempted. He's had a lot of issues with depression. That's part of the reason I offered for him to move in with me - he got medically discharged (sleepwalking) after being in the air force for just a couple of months, and as he was unemployed, he could either move back in with our parents or move in with me and my husband. My dad and brother don't get along and I didn't want my dad to have to put up with bro again, so I offered to let brother move in with us. Things were actually going fine up until a couple of months ago, that's when he started haranguing me about every little thing. I think my brother is very immature and in a lot of ways he acts like he's still a teenager (when in fact he's nearly 26). But he's got a job now and some savings, and there's really no reason he can't be out on his own. Hopefully when I do kick him out, it'll make him finally grow up.

Sorry to hear that your brother is putting you through drama too. What's up with brothers lately?? It's like they have no idea what stress does to us! Dayz, I hope your brother is able to grow up too and stops all the drama, and I also hope he wasn't serious with his suicide threat. My observation is that my brother seems to just do it for attention - he was always the favorite child and doing crap like this just gets my parents attention even more. He's still the favorite too in spite of all this - they just paid for his car repairs, but when I told my mom the other day that I need new brakes, she just said that was too bad. Seriously mother! Fine, I'll pay for my own brakes, but then don't get mad at me when I kick your worthless son out of MY house. Bwa ha ha (evil laugh).

Good luck with the referral to a rheumy! I hope you get a good one! Keep us posted, and I really hope you feel better soon. Don't let that silly old brother stress you out too much (I know, I know - waaaaayyyy easier said than done!).
 
Thanks Cat. I'm not worried about it except its another workday on clear liquids or no liquids. My mouth gets so dry and I always have fluids. I think I will be as dry as the mojave when I get there at 2. I really hope he sees it there.
 
Meg, whenever I have no food/no liquid fasts before a test, I've always been told that it's perfectly fine if I sip little bits of water here and there. Before my abdominal ultrasound a couple months ago, they said no food and no water for 8 hours before the test. Well, the test was at something like 2 PM so I got up at 6 AM, had a big drink of water, and then had little sips throughout the day. It kept me from getting dehydrated - every time my mouth felt too dry I'd have a little sip. So, check with your doctor of course, but my experience is that should be just fine.
 
I sure hope you lovelies don't mind me posting/venting this in here...but as you're all undiagnosed, (so am I), and I'm sure you get sick of people's/doctors, lack of compassion, so I assume you will relate !

I want to kick my (oh so loving) husband in the teeth !:ylol::ylol:
Seriously, he knows I haven't felt good in quite some time. He cares, but he's one of those types that if I'm not complaining, then he's not asking. So I never complain, and he never asks LOL. I'm ok with that honestly, because I know I should be going to the docs but I'm just not in the mood to deal with my old one, and don't have the energy to start all over with a new one. Make sense?
So here's my problem (vent) for the moment...
I guess I don't "look" so great lately. I have lost a little over 20 pounds in the last couple of months, (im not very big to start with), I'm exhausted all the time and don't feel like doing a damn thing around the house quite frankly, but I still manage to do what "has" to be done. I hardly eat the last few weeks because it just causes too much pain..etc.etc...you all know the drill of not feeling good :(
Anyhow, last night i'm laying in bed watching t.v., and I guess I was in a really awkward looking position, when my hubby comes in and says, "are you in pain? you look like your in pain". I said yep, as usual, I feel like my organs are going to swell right out of my stomach, no biggie. ....his response ? ... He went to sleep LOL.
So today, he gets home from work and comes in our room, looks at me and says, "do you feel ok? your face looks all puffy and you have that sick color again". I said, not really, but I'm fine and maybe my invisible problems are going to come to the surface now and someone will finally pay attention? ... what's his response?...."well you look terrible!"....and left the room to go eat his pizza ...

Awww....thanks honey!! LOL
OH MEN>...why o why are they so clueless ?? LOL
He's a good guy really...he's just fricken clueless!

ayi yi yi....I think I just wanted to be "babied" a little maybe, so his non-chalante (caring) put me off...and like I said...I wanna kick him in his teeth today! hahahaha.
 
You poor thing CM! What a big freaking goofball he is. He could.at.least.say.a.sorry! Big hug from Quirky!!!!! I hope you feel better.
 
Morning all.
Good news is upper endoscopy has come through for the 12th July. Quite a few weeks earlier than I expected (GI said min 6 weeks, it will be 7, I thought due to past experience more like 8-10). Will be on my period which isn't ideal but think the need for the test outweighs any small discomforts. I am sure taking the sedation!

Bad news is that horrid pain I had is back. Going to wait a few hours and if it hasn't gone will have to go to Hospital. :(
 
Hey everyone! Sorry I haven't been on lately, I've been traveling a lot lately. Just got back from Munich with my parents; they are going to Zurich without me because I know I cant make that and then go to England for four days with my husband...way too much, not enough spoons!

Meg, I'm sorry they didn't find the problem with the small bowel CT. Cat is right, the upper endoscopy is a breeze compared to the colonoscopy. I hope it goes well!

Star, I hope your upper endoscopy goes well too! Definitely get the drugs - I woke up halfway through one of mine...that little bit was enough to know the drugs are a must. >.<

Cat, I'm sorry you are having issues with the hubby about being ill. My husband has a fine line between being ok with this and utterly frustrated..I understand it can be hard, but sometimes I don't think they truly understand what it means to go through something like this!

My next Dr.'s appointment is Tuesday. The plan is to tell him that the nortryptiline is making the pain better, but the D and other symptoms worse, and that I would like to pursue Addison's or see what else he recommends. Fun stuff!
 
Crohn's mom, absolutely we are more than happy to have you post in here! You're one of us and we appreciate your input too! With regards to your husband, it sounds like he's a "typical clueless guy" and has no idea what to say or do in response to you being in pain. My hubby wasn't exactly supportive either when I first got sick - it actually took kidney stones for him to realize that 1. It's no fun having chronic pain and symptoms (in his case, the kidney stone pain often made him vomit, he sometimes peed blood and he had a lot of LRQ pain - sounds kind of like the urinary version of IBD!), and 2. Being ill isn't a choice and it isn't something I'm doing just to annoy him or inconvenience him. He's SO much more supportive now than he initially was. So, who knows - maybe karma will get to your husband too and knock him down with some nasty pain and symptoms! It worked for my hubby. ;) Not that I was happy that he got kidney stones, it seemed absolutely terrible and I'm sorry that he had to experience that, but I am happy that it taught him some valuable lessons about what I've been through. (This might be kind of mean but sometimes I secretly wish that my brother will come down with kidney stones or IBD or something like that so that he will start understanding and stop being such a jerk to me.)

Star, my heart breaks for you, you poor thing, your body just won't give you a break! I hope you're either feeling better now or have gone to the hospital and are getting some good care & treatment. Keep us posted, thinking of you! I hope this pain at least lets up in time for the complaints meeting. And glad to hear you're finally getting an upper endoscopy! I've been through tests before while on my period, it's not so bad. I know I had my period during my CT scan because I meekly asked the (male) technician beforehand if it was a problem that I had a tampon in, if that would mess with the scan or be in the way of them seeing something. He laughed and said it wasn't a problem (I think he probably gets that question a lot). Anyway, keep us posted on how you're doing, if you went to the hospital or not, and how the complaints meeting goes (that's tomorrow, right?). Wishing you all the luck in the world with all of this! I hope you get some relief from the pain and get some satisfaction from the complaints meeting.

As for me, my hip is feeling better finally. I think I was overdoing it on the exercises that my physical therapist gave me. She said to do the exercises twice a day (although she said most people don't have the time/energy to actually exercise twice every day) and she said to do 10 to 20 reps of each exercise. So I've been faithfully doing my exercises as prescribed and trying to do 20 reps of each. I skipped my exercises last night and this morning and the hip is feeling nearly normal again. So, I'm going to take a couple more days rest and then start doing my exercises, but starting off with just once per day and maybe fewer reps too.

Other than that, I've been having some weird sharp left-sided abdo pains today. That's weird, I rarely get left-sided pain. I'm wondering if it's because I had a salad for lunch yesterday. I can usually eat salads without much pain, although they do turn my poo green. I'm going to take it easy food-wise and eat only low-residue foods for a little bit until the pains stop.

Oh, and the latest update about my brother - I barely said one word to him yesterday. I came home from work and I told hubby, "I think we should walk the dog. My hip's hurting but I'm going to try it." And brother was like, "It? You're going to try what? What's 'it'? What IS that?" And hubby kind of snapped at brother, "She said it clearly, her hip is hurting but she's going to try walking the dog. Sheesh!" So brother is clearly starting to annoy hubby too with his nonsense. Glad I'm not the only one who has noticed it!
 
Allie, I must have missed seeing your post while I was writing mine. I know just what you mean about not enough spoons! Right now it feels like all the spoons in the world wouldn't be enough for me to deal with my brother. ;)

Good luck with the doctor appointment on Tuesday. I hope he lets you schedule the Addison's testing! Keep us posted, wishing you lots of luck that he'll be open to the idea that this could be Addison's. This is the same doctor that suggested it could be lupus or something else auto-immune, right? So hopefully he'll be on board with the idea. Make sure you go to the appointment with lots of info, since many doctors aren't too familiar with Addison's (it's fairly rare, I think something like 1 in 100,000 people have it). Best of luck and let us know how it goes!

Edited to add: If anyone reading this doesn't know what Allie & I are referring to when we talk about spoons, it's the Spoon Theory, an essay about what it's actually like to live with a chronic illness. Here's a link to it:
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/
 
Hi Allie. Good luck at the doc.

Love the link Cat! Thanks! I forwarded to a friend with lupus. She's been there when I needed to vent recently. Her website is www.thewolfsleepsinme.wordpress.com. She has lupus, so she understands (sadly to a much greater degree) chronic illness. She's a roller derby referee.
 
Glad you liked it, Meg! It nearly brings me to tears every time I read it because it is just so true (in fact I just re-read it now and am trying to hold back the tears). Every decision I make, I have to consciously keep my illness in mind and it's exhausting. Healthy people have NO idea how good they've got it! And I'm sorry to hear your friend has lupus, that's got to be incredibly awful. How cool is roller derby, though! I am a skinny weak chick so I'd never have a chance of doing anything like roller derby, but I am kind of jealous of women who do. There's a roller derby league and a women's rugby league in my city and at various times I've been invited to try both - not a chance though, I am way too wimpy and bruise too easily for that stuff!
 
Thanks Cat! Yes, its the same doctor that thinks its autoimmune but not crohns.

Isn't the spoon theory awesome Meg? My husband and I refer to it all the time! ;)
 
That is really cool Allie and Cat. Thanks so much for speaking of it today.

I am going to start trainign to be a ref. It'll be off skates at first. I am really involved with roller derby, as a volunteer official. They had tryouts on the 12th, workshops prior to that. I really wanted to do it and was asked to do it, but I declined. One of the gals, Ima Hurchu, asked me at practice. I told her my body just wasn't there and I needed that. Her best friend has Crohns. She immediately understood. Being a ref, if I can't skate, its not as bad as if I were a skater. I'd hate to tryout, make it and then my body give out on me again.

My derby name is Cuppy Cakes, but I'm called Cuppy.
 
Update: I went to the doctor and explained my story to her. I talked to her for over an hour. I have my endoscopy scheduled for tommorow *thought it was today. My eyes are killing me and I just feel really fed up with all of this. The doctor gave me antidepressants and pain killers. I am feeling better overall. My program director called and said they will have to terminate my membership with Americorps because I have been out for so long. I am devastated. I really loved my job and I was hoping on going back ASAP. I feel like hiding under a rock and never coming back out. Not to mention I was so caught up with doctor visits and all of this that I went late to my interview for my internship.
 
I'm really sorry to hear that Dayz. Being sick and undiagnosed sucks.

Happily pain eased this morning so didn't go to the Hospital in the end. Feeling pretty bad otherwise though, crappy you know.
 
Sorry to hear that Starr, I hope you feel better. If you dont mind me asking what are your symptoms?
My doctor is now leaning towards lupus, I spoke to her today and she sent me to the lab to get tested.
 
Meg, that sounds like fun and I like your derby name! :) I would like the roller skating part but not so much the beating up part (or more precicely, the getting beaten up part!). Being a ref sounds like you'll eventually be on skates but not have to get beat up? That sounds like the best thing to me, ha ha. ;)

Dayz, sorry to hear about all of that. You said your eyes are killing you - did you mention that to your doctor? Eye inflammation, I think it's called uveitis, is pretty common with Crohn's so that's definitely another possible extra-intestinal symptom. You also said you talked with your doc for over an hour - I'm assuming that means she's a good doctor? If so, that's good news at least! It's so hard to find a good doctor who listens and takes us seriously. That goes for Crohnies and especially those of us who are undiagnosed. I'm sorry to hear you lost your job, and I hope you're able to find another one where they treat you with a little more compassion.

Star, glad to hear your pain eased although it sucks that all your other symptoms are still giving you trouble. Glad to hear that you avoided the hospital too - nobody likes being stuck in the hospital. Actually, that's not totally true, I kind of enjoyed spending the day there when I wasn't a patient. ;) When hubby had his kidney stone procedure, we were there most of the day and I even ate lunch there. The cafeteria at our hospital is amazing - they even have a build-your-own ice cream sundae bar! And the food is really inexpensive there too. I mentioned it to my crohnie friend and she said that sometimes she goes to the hospital just to eat at the cafeteria! Ha ha.
 
Build your own sundae bar, wow!

So I think I have figured out what's causing my pain. Monday for lunch I had a particular kind of crisps (potato chips) and tonight I had a different flavour, and the pain is back in force.

Doesn't explain the weekend or this morning but on both those occasions it was much milder and more like what I am accustomed too.. So, I know what not to eat and just got to ride out this pain now!
 
Hospital food is awesome lol

I told my doctor about my eyes and how dry and sensitive they were and that I could feel pain. I went to my eye doctor and he said everything looks fine. I have some drops and it feels better, Iam praying it is nothing serious.

My doctor is really knowledgable about all of this GI stuff eventhough shes not a gastro. She really helped me and even said that she will be willing to try steroids if my symtpoms continue. What baffles me is that my stomach symptoms have subsided and I now have what seems to be lupus. Iam so confused. I talked to my counselor at school today and she gave me some excellent advice and I want to share it all with you:

"When you feel like you are at the end of your rope, tie a know and hang on!"

She also told me to stop catastrophizing and to relax which is what I need to do.
Quirkysoul: thats great that they were understanding about everything! I know its hard to find people like who truly empathize.
 
Hi Cat,
How does it stand for you today? Are you still undiagnosed? I have my appt on 6/30, should I ask for Prednisone or Endicort? Have they worked for you at all?

I am the Queen of YOU ARE NOT REALLY SICK SO GET OVER IT. My doctor just cocks his head to the side and says, "hmmm" and "unh hunh", then says, Well, just get some rest and take your probiotics and make an appt for a follow-up. Follow-up to what? I haven't had a "follow-in" yet.

I still have diarrhea, pain, nausea and lots of vomiting. I have been sick with these symptoms for on and off about 5 years. Nobody can tell me what is wrong. I do know one thing- it is not normal to vomit 3-5 daily every day and to be nauseaus 24/7. Do you think they will ever be able to help people like us? I have lost so much due to this illness... friends, boyfriends, my home, jobs, my sanity and my mind. It's depressing!!!
 
Dayz - wow, your doctor mentioned Lupus as well? My GI thinks it might be whats ailing me as well. It confuses me since lupus doesn't seem to affect your guts as much as I am...I'm really glad your doctor is going to every possible direction, especially that she is going to try steriods! I wish my doctor would do that!

Cat - Thats so funny about the hospital food. The german hospital I stayed at had a good restaurant as well...and well, its Germany, so they even sell beer (even high schools sell beer here so its not uncommon lol). The food I was fed was good as well!

Star - I am sorry you are in so much pain. :( I would stay away from those potatoes crisps! Where is your pain located exactly? I'm sorry if you have mentioned it before.
 
Hi guys, quick message as need sleep so more later.

Went to A&E this morning as pain too bad and got given oral morphine among other things, bliss!

They were very nice and will go into details when I have had a long nap.
 
Hi Shan, glad you found the club! Sorry that you have to be here, and I hope you do get a diagnosis soon. As for me, yes I'm still undiagnosed. I've been diagnosed with other things, such as acid reflux and arthritis, but my underlying "main" illness hasn't been diagnosed yet.

It sounds like you definitely need a new doctor! It doesn't sound like your current one is doing a darn thing. Is this your primary care doc or your GI that's doing this? Either way, if I were you I'd definitely start looking for a new doctor and get a second opinion. Remind me again of what tests you've had - I believe in your "my story" thread you mentioned a colonoscopy that came back normal and that you're possibly having an upper endoscopy soon. Have you had blood tests, stool tests, or any scans such as CT scan or MRI? As tempting as it is to try the steroids like pred and Entocort, I'd recommend that you do more testing first to rule some things out (stuff like celiac disease can be easily ruled out with an upper endoscopy) before trying them. Many doctors are hesitant to try steroids on undiagnosed people. But, if you hit a dead end with the testing and are still having normal test results, then I would say definitely give steroids a try. I was told that steroids only work if there's something there for them to work on. Pred works for most inflammatory & autoimmune conditions, and Entocort is much more "specific" (only works on certain areas of the digestive tract, where as pred goes into the bloodstream and works everywhere in the body) so if you do respond to Entocort, you most likely have something like Crohn's or microscopic colitis. I respond to Entocort and those two illnesses are the most likely suspects now for me.

Dayz and Allie, I'm not even sure exactly what the symptoms are or what the treatment would be for lupus. I'm going to do some googling after I post this and read up about that. I did read a few posts in Meg's friend's blog and that was pretty interesting. It sounds like a really awful illness and I hope neither of you have it!

Dayz, glad to hear the eye doc didn't find anything wrong with your eyes. I go to my eye doc every year too and he found something weird with my eyes - my vision actually improved in both eyes! First time ever that that's happened! I'm not sure if it's related in any way to my gut illness or if it's just a weird thing that happened. I was on steroids (Entocort) when this happened so I am wondering if the steroids somehow helped improve my vision - maybe my eyes were inflamed and I didn't know it?

Allie, I knew that about German high schools, actually. It seems really weird to me still! My family went on vacation to Germany about 10 years ago and during that time we visited some distant German cousins and their son was graduating high school. At the graduation dinner, all the teenagers were drinking & smoking! It was weird. If I'm remembering right, Germany allows drinking & smoking at age 16 but you can't get your drivers license till you're 18? That seems so backwards compared to the system we have here! (For non-Americans who are curious, here in the US you can get your drivers license at 16, smoke cigarettes at 18, and drink alcohol at 21.)

Star, glad the hospital was able to get you some pain meds and some relief! I'm looking forward to hearing more details and also learning about how the complaint meeting went! Keep us posted!

As for me, I'm doing worse again today. More abdo pain, more nausea, and feeling weak. I had started another thread with some questions related to my arthritis, and Mountaingem responded saying that when her arthritis pain gets sharp, it's usually a bone spur and that usually precedes a flare for her. I hope that's not the case for me, although if it is it's kind of good in a way because I have a GI appointment on Monday. He's never seen me in a full-blown flare, it usually takes forever to get an appointment with him so by the time I do see him the flare is usually completely over with. If I do flare, I'm definitely going to ask for more tests ASAP. If I could do SBFT and/or MRI-enterography while flaring, I think that'd be ideal! The next few days will be very telling. In a way I'll be disappointed if I don't flare! Ha ha.
 
Cat I know what you mean, when I had my CT I was quite dissapointed I wasn't in more pain!

Well at 6:30 am decided enough was enough and headed to A&E. As well as the pain had been in the loo all night and when I swallow I feel like there is a lump/ ulcer or something at the back of my throat.

They were really, really nice and I didn't get the " so why did you come in today" so I must have looked rotten. Nurse went off for some kind of pain relief and came back with oral morphine instead after speaking to the Dr. Took ages to work but it worked nicely! Had to be oral as they couldn't get a cannula in or draw blood, had to wait for the Registrar (Senior Dr) to do both which he managed. It's amazing that my shoulder joint doesn't hurt right now, it's been painful for 2 years, and once the abdo pain went I realised that it had been bad for ages.

As he put it, it was a flare/ attack of whatever I have, and was a case of making me comfortable and sending me home until next time. They couldn't diagnose me there and then which of course I didn't expect. He also said with my case the consultants were groping in the dark which was very apt.

Also had an injection of buscopan and iv paracetemol.

The female Dr who I saw before Registrar was very interested in me getting mouth ulcers and the fact that Grandad's great niece has CD.

They didn't wait for bloods to come back before they sent me home as it was obvious the morphine was working. Said they would ring if they found anything of concern which they haven't. Got to follow up with GP, and continue my care with them but really gone beyond that point now honestly in my view.

As the Nurse who sent me home said, it's a good job my investigations are booked as I need them!

Also chatting to the male nurse who was great since he had had stomach issues in the past, we were comparing colonoscopy prep stories lol. His turned out to be H Pylori which was sorted with a weeks anti biotics and never been back.

So, didn't make the complaints service meeting after all, will have to be rearranged for next week or the week after, probably the latter as next week is breath test, got to be up to pay the man doing the garden one afternoon and hoping to visit some hand reared kittens for some cuddles!

Still quite tired but after today don't expect anything else! Really tempted to have a bread roll as quite hungry but think might be useful to rest my insides. So will decide later.
 
Star, sorry to hear that you had to reschedule the complaints meeting, but it sounds like you had a really good experience at the emergency room! If you're flaring now, I hope that means that the breath test next week will produce a useful result. I'm glad you got some relief from the pain!

And I know what you mean about not realizing how bad it was until the pain isn't there anymore. You just sort of acclimate to it and don't really realize it. About 6 months after my illness first hit, I decided to switch from the birth control pill to the nuva ring. I was having so much d at the time that I was afraid the pill wasn't absorbing and was just shooting out the other end - I don't even want to consider having children until I get diagnosed and know exactly what illness I'd potentially be passing on to the next generation. Anyway, so I switched to the ring - and instantly felt so much relief! I hadn't realized the pill was making things that much worse. I didn't get totally better by any means, but I hadn't realized that I was as bad as I was. It was odd to feel good again - I was so used to feeling bad! Of course after a few days my symptoms started creeping back again, but this time I was able to recognize that yes, I was constantly in some pain.

Hand-reared kittens, how cute! Are you taking one home or just visiting the kitties? I only have one cat but I'm often tempted to get another. Unfortunately my cat doesn't play well with others and she'd probably tear a kitten to shreds, so it's not an option to get more kitties. Sigh! Someday when I'm very old, if I make it that long, I'm sure I'll be one of those "crazy cat ladies" ha ha.
 
allie: I thought it was strange too as my dad coworker has lupus and that didnt even cross my mind when all of this started. My doctor said she was going to push for some more tests but that she would give me steroids because my eye pain is worsening and my joints still ache. Stomach is doing fine. Doesent feel perfect but I havent had D just mild cramping. I told her I thought it was chrons and I thought she was going to think I was a looney but she really listened and made me feel validated. She said Lupus can affect the GI tract. She also mentioned celiacs disease. Have you been tested for it? I know someone else who has lupus and she is 70 yrs old. Shes lived with it all her life. I dont know anyone personally with chrons but its nice to come on here and chat with you guys.

Hi Shan and welcome! I truly feel for what your going through. Eventhough all of this just started I feel like it has taken over my life. I lost my job and my boyfriend is so lost he doesent even know what to say anymore. I truly hope things get better and that you can find a doctor who understands and who can help you.

Cat: My doc says he wants to see me every 3 weeks...One more doctor I have to see. That is so weird about your eyes- but pretty cool. Did your doc give you anything after the entocort?
 
I would *Love* to take home a kitten but i don't think I could afford 2 cats and my current one, Lily, is not a fan of other cats so not a good idea!

I volunteer with a local branch of a national cat charity and the co-ordinator asked if i'd like to go round and visit them. I had promised myself no contact with the cats as i'd just want to take them all home, but I couldn't say no and hopefully they will all have homes waiting as people always want kittens here.

Feeling wiped out today but can't expect to be (what passes for) fighting fit after such an ordeal. Happily my shoulder pain is still gone which is great. Didn't eat yesterday after all, may try something small today.
 
Last night was bad. I have been having some major tmj pain in my left jaw this week. Well, after a vicodin Wednesday night, it is somewhat better. But, I ended up with a raging migraine that caused several vomiting episodes, nausea, and I had abdo cramping too from the "crohns". I was in a world of hurt. I feel like this sounds as if I am exaggerating. sadly, no. I finally slept, after puking up my second migraine pill. I slept, luckily, for four hours. Woke up at 12:30. I was awake for a bit, and slept another 4 hours until the alarm went off. The 'graine is still there, just dull. Technically I took my allotted pills for a 24 hour period. But seeing as how I puked when I swallowed the second pill and puked a few minutes after taking it, I'm sure it came up.

I broke down for a moment because I am so tired of not being in control of my body. I have been "sick" now since last Labor Day weekend. Sure I have had some good days, but that is when I got sick. I am so tired of this.

sorry, I'm not in a good space this morning. Other than I get to meet a couple long distance friends tonight and tomorrow, and get some derby in tonight too. Sadly, we're going out for lots of meals. I don't know how I am going to do it. I was supposed to bake some cuppys for them to taste last night. To quote Allie and Cat, there wasn't enough spoons.

Cat, how are you? Are you in a flare? That will help your test, but I hate that you are.

Starr, I love my kitties. I don't know what I would do without them. I'm glad you have that for yourself.

Sheesh, I can't remember everyone's updates. I'll be back later with more personal shout outs.
 
Meg, that sucks, sorry to hear you're not doing so well today. I started getting migraines right around the time that this gut illness hit me. I had exactly one migraine in my life from age 0 to 29. Then at 30 I started getting migraines every month or two. Fortunately the Amitriptyline seems to prevent them pretty well and I haven't had one in about 8 or 9 months now. But they are awful and I feel for you! Do you get the "aura" thing too with your migraines - the weird visual stuff? I get auras and each time they're different, and it always freaks me out. For me that's almost worse than the actual pain & nausea. I can deal with that stuff, but it just makes me flip out when I feel like someone turned off the lights but only in my right eye... freaky!

Star, that's funny that your cat's name is Lily - that's my dog's name! We didn't pick it out, as we got our dog in December at age 2 from a co-worker of mine who was no longer able to keep her. Her full name is actually Callalily Star (her original owner bought her to be a show dog so she has one of those silly long dog show names). My cat's name is Lydia and I sometimes call her Lyddie for short, so their names are kind of similar and I sometimes yell the wrong name! "Lyddie... er, Lily! Whichever one you are! Stop that!" ;) I hope you have fun playing with those little kittens, give 'em a belly rub for me. I don't know if you have the same TV commercials there, but there's a commercial here and I think it's for a cell phone or a computer or something, and anyway the announcer says something like, "With this new product we can fill the internet with what it's intended for - even more cats!" And then the commercial shows tons of cats doing funny things like driving cars. I love that commercial! :)

I'm actually doing a lot better today. Still some hip pain, but nowhere near as bad as it was. I managed to walk the dog last night without limping at all! And my guts have started to feel better too. I'm bloated like crazy, but the pain had decreased greatly and the nausea is mostly gone too. Guess it was just a bad day and not a precursor to a flare.
 
Dayz, I missed your post, didn't look back a page! As for your questions, I have been tested for celiac and it has been confirmed that I do not have celiac. There is some celiac in one branch of my family tree so I definitely wanted to make sure I either confirmed or ruled that one out. I had the blood test which was negative, but I was told by my family members that the blood test isn't particularly accurate. They said that the upper endoscopy with biopsies is the "gold standard" for confirming or ruling out celiac. I had that and the scope was normal, no visual signs of celiac, and the biopsies also came back normal. My GI said that means we've essentially ruled out celiac 100%. I don't remember, did you have the blood test? And you're having the upper endoscopy soon, right? So the upper endoscopy will tell you pretty much 100% whether or not you have celiac. Have you noticed your symptoms worsening after eating bread or pasta? Those foods have always been safe for me, even in a flare, so I assumed from the get-go that I didn't have celiac, and I was right.

No, my doctor didn't give me any other IBD meds after he took me off of the Entocort. I was on Entocort for about 7 months and I did feel a lot better during that time. Now that I've been off of it for a couple months, I am slowly starting to feel my symptoms creep back in, although for now I'm still having more good days than bad ones. The only meds I'm on right now are omeprazole (generic prilosec, for my acid reflux) and Amitriptyline (an antidepressant, which also has beneficial properties such as calming the guts, helping me sleep, and preventing headaches - I was initially put on it because Entocort caused chronic headaches as a side effect, and I've been kept on it because my GI feels that the gut-calming effect might keep me feeling okay).
 
Thanks Cat. I'm glad to hear you are better today. As much as it might help the test, I don't want you to be sick.

Ugh, work pitch in today. I'm so sick now. It was okay foods for me too. But, I am so sick. In pain and the trips to the "loo" as some of us say here, have started. I like the word loo.

You know how I make the trips a little more fun. I sing to myself, "I think I'm alone now. There doesn't seem to be anyone around." I'm an 80's child and I hate to have an episode with anyone else in the restroom. It makes me smile when a smile is the last thing on my mind.
 
quirkysoul: I hope you feel better! I have had nausea and fainting I hate that feeling. I usually sing too and I hate it when other come all up in my space when i am doing my thing lol.

Cat: I will ask my doctor for entocort. I am not sure what steroids she wants me on since she suspects lupus. I am glad your doing better and that your not in too much pain. I pray for all of us everynight that we will get better and find some answers.

I was researching lupus and let me just say that I wanted to faint! I am pretty scared right now. Is lupus a much more serious disease than chrons? I know they are both autoimmune diseases but my eye doctor asked me if lupus runs in my family and i said no, I told him about chrons and he looked at me and said "you dont want chrons trust me" - so I thought is having a dx of lupus better? i know these are probably silly questions but I feel really scared about my future and my health. Is lupus easier to treat? Obviously no one wants a disease but once your actually suffering your just want some answers.
 
That is going to make me smile next time i'm in there lol meg!

Hoping to rearrange complaints service meeting for the 27th. Also going to cancel local dietician appointment since never heard back from GI and the less I do, the better right now. Gone off the idea of specialist advice too, will cross that bridge when I come to it.

If I had a better GI I would ask to be bumped up the upper endo list in light of yesterday, since there is a month to go. But I don't so I shan't!

I also think now I am not well enough to seek the second opinion in London which I wanted and was my back up plan :( So stuck at local Hospital until something, hopefully, turns up.
 
I tell ya, I have come to find the humor in this, sometimes. We have to, right?

Good luck Starr.

Dayz, lupus is worse in my opinion. Lupus can lead to a host of other organs getting involved. However, you can live with one kidney a lot easier than part of your bowel removed. So, I guess they're all bad. A derby friend writes a blog about her lupus. I mentioned a couple pages back, but I will again. You might want to read it. www.thewolfsleepsinme.wordpress.com. It's good. She named it that since her lupus is SLE. Thats in the blog name. I thought that was clever!

Bottom line, they're all no fun. My doc said the same thing to me right before the meds knocked me out for the colonoscopy. He said he wants to make damn sure because I don't want Crohn's. In a way no, but if it leads to better treatment and getting this flare under control (I still think I'm flaring even thought I don't have multiple trips to the loo everyday), then I do. If I know for sure now, then I can prevent damage to my digestive system and keep surgery at bay. Not knowing, and no treatment, could let this fester inside me until it is too late.
 
Meg, that song is going to be stuck in my head for the rest of the day! Ha ha :) That's not a terrible thing though. I'm an 80s child too (I was born in '79) and I love 80s music. Oh, and after you first posted the link to your friend's blog, I sat down and read every post. How heartbreaking what she's been through! You're right, lupus sounds much worse to me than Crohn's. She sounds like a really strong and cool person. And how awesome that both her brothers are a perfect match to her for kidney donation! Reminds me of my grandfather, he's been in kidney failure for about 5 years now and has had dialysis 3 times a week since his kidneys failed. The really sad part is that my grandma, his wife, actually has THREE working kidneys! She would love to donate one to him but they're both too old and have other health issues to undergo such major surgery, plus I think she actually went through testing and isn't a match for him. It just sucks so much that he has no working kidneys and she has 3. Life is just not fair sometimes!

Dayz: If your doctor thinks it could be lupus, honestly Entocort wouldn't really be the way to go. It's specifically made for Crohn's and recent studies have shown it works in microscopic colitis too, but that's it. And even then it only works for certain types of Crohn's (when the illness is in the terminal ileum and/or the ascending colon). It doesn't even work for other types of IBD, such as ulcerative colitis. The reason it only works on a couple illnesses is because, although it is basically the same steroid as prednisone, it has a special coating and releases in that specific area of intestines. Prednisone would actually be a much better bet, whether it's Crohn's or lupus. Pred goes into the bloodstream and anywhere in the body, regardless of where the the illness/inflammation is. So pred would work for Crohn's, UC, lupus, and pretty much anything else that's auto-immune or inflammatory. Also, not sure what your prescription coverage is like, but Entocort is expensive and pred is cheap. My insurance covers most of the cost of Entocort - I end up paying $75 per month's supply of Ento. Without insurance, it's well over $1000 per month! For pred I pay $10 per month and I think it's not much more than that without insurance. So, for both cost and effectiveness, if you're going to push for steroids, I'd really go for pred over Ento. Just my opinion - I'm not a doctor or anything - but I have been on both.

Star, sorry to hear that you've got to cancel some things and aren't currently able to go to the specialty place in London. There surely wouldn't be any harm in asking to be bumped up the list for the upper endoscopy though? I wonder if you could get in touch with the emergency room doctor who saw you and have him email your GI and say that you were in a lot of pain when he saw you and that it'd be better if you had the test sooner?

I'm still doing okay - eating lunch right now in fact, and not having any pain or bathroom troubles right now. My hip still isn't great, though. I went outside for a bit during my lunch hour and went to a couple of garage sales. But the neighborhood I was in, all the driveways were really long! So I'd park my car and walk up the looooong driveway to shop. And then walk all the way back to my car again. I feel like I'm starting to limp a little bit again. Stupid long driveways and stupid hip! On the plus side, I did find a Sudoku puzzle book for 50 cents. I'm going to keep it in the bathroom so I can do Sudoku when I'm in there for long stretches. :) I have a Sudoku game on my nintendo DS, but I don't always remember to bring that in the bathroom with me (or if there's a lot of urgency, I don't have the chance to grab it on my way to the bathroom).
 
That's a great idea Cat. I hope it helps pass the time.

I went back again at 3:30. I take my cell with me so I can check Facebook to pass the time. I looked at the time and it was all of a sudden 3:48. It felt like it had been a few minutes. My body isn't happy right now. I'll be taking an anti-d med when I get home. Migraine came back. Got an Imitrex in quick and got it under control.

The derby girl is super cool. I actually only met her once. She's in St. Louis. But we spent the evening together. I was her official and she was the ref that tracked the score. We joked and chatted during the timeouts and halfs. She is way fun. Yeah, given her blog, I'd say lupus is worse too.

I get to leave in 10 minutes. Gotta rush home and potty the dogs and feed the kitties. Then back downtown to meet an out of town friend. We're going to dinner (ugh not excited and/or hungry) and then to derby practice. Tomorrow is a full day of eating out, farmers market, meeting a second out of town friend, laughing, drinking (them not me)...I hope I can find the spoons.

I probably won't be on until Sunday or Monday. Have a great weekend everyone and I hope all feel as best as possible, if not better!
 
Oh my goodness Meg, busy girl! I don't have much planned for my weekend, I'd send you a few of my spoons if I could! Instead I'm sending you a virtual permission slip. I, Cat, hereby give you permission to rest if you need to, to call in sick to some of your planned activities if need be, to eat safe foods ahead of time so that you're not stuck eating unsafe restaurant food, and to not feel guilty about any of it. :)
 
Awe, thanks Cat. It was a crazy weekend but I made it. I had some very suspicious poo. Tarry in color and lots of it Saturday night. I was a little worried. I did have blueberries at breakfast, cooked down and not fresh. Maybe that's it, but it wasn't blue in color. : ) I will mention it to doc tomorrow before he puts me under for the scope. I'm back in a flare, or still in this same one. I'm having pain daily, nausea all day, more tired, ... we all know the symptoms. I "choked" twice Saturday. Sometimes the food just stops. Once was water, the second time I had a bit of food that just wouldn't go down. I had to massage my throat. I'm so over this.

Our basement is flooded. We've had 2" in 2 hours and everywhere is flooded. I had to try several routes to work before I could find one I could get through and not stall. Sis is home working on the basement. we keep our dogs in the laundry room (they have a bed, food and water and its a big room), but its flooded so they can't stay in there. I'm out of time and won't get paid.

Oh well.....

Where was everyone this weekend? No posts. Whaaaaaaaat? How is everyone? I hope all are ok. I worry when no one posts.
 
Good luck for your scope tomorrow! I follow-up with GP tomorrow after A&E trip and then breath test Wednesday.

I have just been sleeping, so exhausted after Thursday, really was an ordeal. Abdo pains creeping back in now, oh well, nice while it lasted, shoulder still feels great though lol.
 
I'm here, just got back from my GI appointment. It was pretty uneventful. He's not ordering any further diagnostic tests for now except bloodwork, and I follow-up again in 3 months (with instructions to call him immediately if I flare or get new/worse symptoms). He tweaked the dosages of my Amitriptyline and Omeprazole, and added a new med - Levsin I believe? I haven't gone to the pharmacy yet to pick it up but I believe that was what he said. I just googled it and it sounds like another med that works better for IBS than IBD. Sigh! I had a migraine on Friday afternoon, the first one I've had since I've been on Amitriptyline. I was on 25 mg Amitrip for 8 or 10 months, and then when I thought I was headed into a flare my GI bumped it up to 40 mg. I didn't notice much difference in my guts on the 40 mg but it seemed clear that 40 mg is not as good as 25 mg for headache & migraine prevention. I had only been on 40 mg for about 4 weeks when the migraine hit. So I'm happy to go back on 25 mg, at least that means no more migraines (hopefully). I'm sure my migraines are related to my gut symptoms as both started at the same time.

GI also tested my CRP and the other inflammatory blood marker, ERP or SRP or... ESP? That's not it! But whatever it is, they did both. For some reason I'm not thinking clearly today. (Maybe it's because they just took 2 vials of blood from me, haha! My blood pressure was 92/64 before they did the bloodwork so it's probably even lower now and I'm not getting enough blood to my brain cells or something.)

Star, sorry to hear the symptoms are creeping back in, I know that feeling well and it's not a good feeling. :( Best of luck at GP tomorrow - are you getting your CRP tested again as well? And I hope the breath test goes well too and you get a useful result (and that your GI doesn't try to ignore any positive result from it!).

Meg, how awful about your basement! Ours gets water sometimes too but not that much, just a trickle that goes right to the floor drain. I shouldn't speak too soon though, we're supposed to get thunderstorms pretty much all week and tomorrow is supposed to be pretty bad. Wishing you luck on the scope tomorrow, I hope it goes well and you get some useful results from it. I get the "choking" symptoms sometimes too - sometimes on food and fairly frequently when I have to swallow pills, especially my fish oil capsule because that's a pretty big one. I try to gulp it down but it just stops halfway. I wonder if it's related to my acid reflux. Do you have reflux too?

And Meg, I'm sorry to hear you're still flaring. Although on the plus side, maybe that means they'll find something worthwhile on the scope tomorrow. Try to get some rest, especially after your scope. After my upper endoscopy I napped for most of the day, it was lovely. :)
 
Do any of you bleed more when you flare? when they draw blood, I always bleed now and last night what looked to be just a drop of blood gushed. I had a blister on my heel. It was old and I picked the tiniest of scabs off as I was tired of looking at it. I walk downstairs, come back up (about one minute) and my heel is soaked in blood. Luckily I had on flip flops. I didn't even know it was happening.

Also, does lomotil back anyone up?

Cat, I'm sorry to hear you had the 'graine. Hugs, gentle quiet ones. And yes, mine are very tied to my guts. I'm sorry the appt was unproductive, but no tests is a good thing. Right?!?

Cat, I have not been diagnosed with reflux. I rarely have heartburn. No real pain. I am finding my swallowing is more labor intensive these days. My jaw is fired up again. Stupid pain! I'm sick of it.
 
quirkysoul said:
Awe, thanks Cat. It was a crazy weekend but I made it. I had some very suspicious poo. Tarry in color and lots of it Saturday night. I was a little worried. I did have blueberries at breakfast, cooked down and not fresh. Maybe that's it, but it wasn't blue in color. : )
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My son tends to OD on blueberries if I'm not rationing them out, and every time he does, he gives himself the runs, and it is black. It's not blue at all. So that could very well be it.
 
Meg, funny you should mention bleeding more. They just did a blood draw and where they stuck me with the needle hurts and bled a bit too! Usually needle sticks aren't too bad but this one was nasty. I think I do bleed a little more than I used to, not sure if it's the illness or meds/supplements causing it. I take fish oil every day and I know that can thin the blood and cause bleeding. Do you take fish oil or anything like that?

May, that's interesting about the blueberries. I haven't noticed that when I eat blueberries, but I've noticed something similar when I eat mushrooms. I get little dark balls of... poo? Blood? Undigested mushroom? I'm not sure exactly what, but it's mixed in with my regular poo. It looks like little dark globs of blood, but it only ever happens after eating mushrooms so I'm not too worried about it.

Oh, and Meg - YES! Lomotil can cause me to not poo at all for a week. When I do take that stuff, which isn't often, I also take 2 stool softeners (colace) with it, and 2 more every 12 hours until I am able to poo again. It seems silly to take stool softeners when the d is bad enough that I have to take Lomotil, but that's the only way I can get somewhat regulated rather than having either tons of d or days of c. So I usually end up taking about 6 stool softeners for every 1 Lomotil and that's been a pretty good system - my poo ends up fairly formed that way.
 
quirkysoul said:
Thank you Mayflower! Thank you. It was so fast. Maybe 8 hours later.
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If your body found them irritating maybe it sped it along. But that's pure conjecture. With my son (don't know how a child's transit time compares with adults - he's 3) if he ODs in the afternoon, then by the next time he goes, typically in the morning, it's all black and loose. And smells weird. :eek:
 
I seem to have a very rapid digestion process. I have tested with beets and I am never more than 24 hours. Most of the time 8-12 hours. I worry that means I am not absorbing nutrients, even though I am overweight.

Thanks Cat. I took 2 Saturday. It was the only way I could get through and even then I had massive d. I was a type 2 on the Bristol Stool Scale today. I'll get some colace when I get paid Wednesday. I don't feel bloated or have any constipation pains, so I can make it.
 
Hi everyone! I hope everyone had a great weekend
I watched the movie Love and Other Drugs- that put things into perpspective:eek2:

Star: I am glad your shoulder pain is gone! I think joint pain is the worse! My joint pain far exceeds my gut problems... I wonder if anyone around here has chrons ad has more joint pain than anything else.

Cat: Thanksfo the tip about the stool softner with the lomotil- I was scared to try it again because I was constipated for 3 days and felt like caaarap. I will try that next time.

Quirkysoul: Thats weird about your throat..my doctor always ask me that when I go, if i have trouble swallowing. Is that acid reflux? I hope that it doesent come bck and it was just a one time thing.
My boyfriend and his family want to go to six flags in July...Let me just say I am scard! lol I am scared that I wil feel sick and have to sit every five minutes. D isnt my biggest problem (atleast not for now) but the cramping and joint pain is enough to knock me out. The thought of not being able to bring my own food in sucks too. I have been eating mostly safe foods and I am afraid to eat anything else. I will just hve to sneak in some snacks. His whole family knows that I am sick ad they are all very supportive so I am thankful for that. I am anxious to get my test done for lupus because I just want to know what the hell is going on. Yesterday I ate an ice cream sandwhich because i thought it would be pretty safe...NEVER AGAIN. My stomach has been cramping since last night, who knew such a little piece of heaven can cause so much damn pain.
 
Dayz, are you lactose intolerant? That could be why the ice cream sandwich did you in. I'm lactose intolerant and so are most of the women in my mom's side of the family. We're all different, though. Cheese and milk just kill me - but I can do butter and ice cream with absolutely no problems. My cousin's worst enemy is whipped cream, my mom's is yogurt and cream, especially cream-based soups. My mom can eat pizza without problems though. Do other dairy products affect you, or just ice cream? Have you tried those "lactaid" enzyme tablets? The enzyme tablets worked fine for me for a few years, then started losing effectiveness slowly over time, and now they really don't seem to work at all (I've been lactose intolerant for 10+ years now - it didn't hit me until I was 20, I could eat all dairy just fine up until then).

And yeah, I know what you mean about feeling like crap when taking Lomotil - that stuff can really stop you up for days! Fair warning, sometimes the stool softener does cause some mild cramping when I take it - but it's so much better than having massive d or being stopped up for days on end. It's not that bad at all, it's milder than menstrual cramps I'd say. That's the only side effect I've experienced from the stool softeners. And make sure you get something like colace as opposed to something like dulcolax - dulcolax gives me watery runs! Colace is much gentler on the system, at least that's my experience. :)

I went to the pharmacy on my lunch break and picked up my new prescription. My GI has put me on hyosycamine, which is apparently the generic version of Levsin. I've never heard of either before today. Anybody know about hyosycamine? I did some googling but didn't find out much. I'm wondering about others' experiences with it. I will post in the Treatment section about it if nobody here has been on it, but thought I'd ask you guys first since it sounds like it's more of an IBS drug and I know most of us here have been told "it's just IBS" at one point or another!
 
Oh, and I meant to add - with regards to the conversation a few posts earlier about "transit time" - my transit times vary but sometimes, especially in a flare, it is VERY quick. I used to take peppermint oil capsules. I'd take my capsule first thing in the morning, and sometimes I'd have d about 15 or 20 minutes later - and my d would smell like peppermint! I don't know if solid food takes a little longer than a capsule would, but that was always interesting to me that it would go through me so quickly. And for once it made the bathroom smell nice and minty instead of horrible! ;) On a very good day my transit time seems to be about overnight - I'll have a poo or two in the morning, and then nothing again until the next day, and I can usually see bits of yesterday's meals in the morning's poo. If I eat tomato I can always see the skins in my poo the next day. So, for me transit time is anywhere between 24 hours and 15 minutes!
 
Have just been catching up with all your posts, gosh you're all going through it :( sending you all very well wishes and hope things start getting sorted soon! Good luck with the upcoming tests. I shall try and keep up a little more again now that I'm not in a total daze. x

I'm still recovering slowly from my surgery last week. I have an appointment with my doctor on Wednesday afternoon to get the pathology results from the polyp and biopsies they took when they performed the colonoscopy. Have completely forgotten what things I should be asking/suggesting pending the results as I've been on very strong painkillers for the past 10 days. A tad nervous, but hoping to at least get some answers maybe (though this might be wishful thinking!)
 
I've got a question, and this may sound strange, BUT... I have been having these dreams for about 2-3 years, off and on, that I am swallowing different things and that I am choking. In my dreams they are weird things, like a necklace, or nails, or small beads, etc. In my dreams, I am very scared, as these things are always accidentially falling down my throat. In my dreams I am choking, and I always wake up, scared to death, and I feel like I can't swallow. As soon as I realize it was a dream, I come to the conclusion that I am just extremely thirsty and that my throat is very, very dry. For this reason, I now make sure that I always have a drink by my bed every night so that when I have these dreams and wake up in a fright, I can drink and make the nightmare go away. So, my question is, WTH? I am not diabetic, and my esophagus has checked out OK, so I don't know what is going on... does anybody have a clue??
 
Couldn't get a GP appointment :( Took me 10 minutes to get through and all booked by that time. They lost two Drs recently and only got one replacement.

So annoyed, worked myself all up to go in and get my blood results from last week, so hoping had come back aneamic to get another shot at Pill Cam funding and wanted to know what CRP was during that horrible flare.

Will have to phone again Thursday and have another try (Hospital all morning tomorrow, garden being cut Friday afternoon so have to be here to pay the guy) and put my parts on. Ie "A&E Dr wanted me to follow up with GP, couldn't get an appointment Tues, can't come in again until Monday etc".

I could try a phone appointment but I really wanted to go in and see someone. As need to sort out my prescription anyway and i've found it's just easier face to face and I prefer it. :ymad: Oh well, will just go back to sleep, will probably be out most of the day :(

Really mad and upset right now (I know the latter is silly), already in a very hard situation which is made even harder when I can't see a GP! Just not coping with things at all after that horrible experience last week, as well as feeling like crap 24/7 with no end in sight I am so scared of that happening again. Plus the abdo pains are back, and at the worse end of the scale too.
*feels like swearing*
 
Penguin: Surgery??? I don't remember you saying anything about surgery (although my memory's not what it used to be so I could have just forgotten). What kind of surgery? I hope you feel better soon!!

Shan, I'm not sure what those dreams mean. I do have dreams sometimes where I know my body is trying to tell me something. For example, I remember a couple of months ago I had a very vivid dream that my acid reflux was acting up horribly and I was so nauseous and felt so crappy - then I suddenly woke up at about 3 AM, and realized it wasn't just a dream! Spent the next 2 hours next to a bucket, having a battle of wills between my body (which desperately wanted to vomit) and myself (I hate vomiting and will fight all urges to do so!). That was not a fun night.

Star, poor girl, it seems like you just can't win! I'm not sure how it works over there, do you have to call your GP first thing in the morning to get an appointment that day? If you called today, even if today was already full, would they be able to set you up an appointment in a few days time? Here, if I call my GP, they can try to fit me in the same day if it's pretty urgent, or they can make me an appointment usually within the same week. There are walk-in clinics here too and most are on the same computer system that my GI and GP are on, so wherever I go they can usually pull up my records and give me test results etc. I'm guessing it's a different system in the UK though?

Meg, hang in there! What time is your scope? When I had my upper endoscopy, I was somewhat nervous and grumpy, and the nurse noticed that. She said that if I was having a bad day, that she was about to give me some great drugs in my IV and that my day was about to get much better! She was right, I had a lovely nap during my procedure, woke up feeling great although very groggy, and napped and snacked the rest of the day. So try to cheer up, sneak a couple sips of water, and look forward to your nap and to eating afterwards. :)
 
Thanks Cat. That's helping. Luckily, I am busy at work, so I am not as focused on it. I called my dad asking if we were going to dinner after and eating a cow. : )
 
Ha ha Meg! Enjoy your nap and your cow then! ;)

My new medicine (hyoscyamine) doesn't seem to be doing much, except that it has dried out my mouth and my eyeballs. My GI and my pharmacist both warned me that dry mouth and dry eyes are common side effects, but sheesh! I feel like I've had about a gallon of water already today and I still feel dried out. I hope this side effect goes away soon! The good news is, my GI didn't write any refills for this prescription, so hopefully after a month I can stop taking this stuff.
 
What is that med supposed to do, Cat? That sounds like a miserable side-effect to deal with. When do u see him next? Too bad he did not schedule more tests. Are they on the horizon at all? It would be nice for u to get some answers this year.

Quirky, hope your scope goes well. What time is your procedure?
 
Oh, duh. 3 pm test, 2 arrival. I leave work in 30 minutes to head there. I can do this. I think I can, I think I can, I think I can...chugga chugga chugga.....
 
Cat , I would imagine that your new drug is similar to hyoscine (buscopan). It is an antispasmodic which cause dry mouth etc.
Good luck with your scope Meg!
 
Yes, when I googled it yesterday I believe it said that hyoscyamine is similar to buscopan. My GI put me on it because I told him I've had a fair amount of abdo pains and bloating lately. Home remedies, such as drinking water with a teaspoon of baking soda mixed in, haven't been helping my bloat any, so he decided to try me on this med. He also said that, because I haven't had a proper flare lately and I've been feeling more or less okay most of the time, he doesn't feel it's in my best interests to put me through more tests now. That of course will most likely change if I flare or get new/worse symptoms - I'm supposed to call my GI ASAP if anything like that happens. For now I'm just trying to be happy with being back on 25 mg of Amitriptyline. That feels like the best dose for me - at least that dose prevents migraines, if nothing else! And I feel like I have more energy now that I'm back at 25 mg - didn't realize until today how tired the 40 mg was making me.

Meg, good luck! Thinking happy thoughts for you!
 
Yes hope it went well Meg!! Counting the days until mine.

Cat, each GP surgery has a different procedure for appointments. Mine have a limited number of pre bookable advance appointments (a month) or you ring in the morning on the day you want to go in. In reality the pre-bookable side only works if you want something more than 2 weeks ahead, very rarely are there any within 2 weeks (I did ask Thursday if there were any for today, there weren't).

NHS targets state you must be able to see a Dr within 48 hours and it used to be to meet this target you could only ever book a Nurse appointment, for a GP it was strictly ring on the day. But my surgery did tweak it which I think works better.

Usually the system works but not always. As I said they lost 2 Drs recently and only got one replacement. Only 2 Drs on today and the senior Nurse, whereas they usually have 3 GP's on.

*sigh*
 
quirkysoul said:
Oh, duh. 3 pm test, 2 arrival. I leave work in 30 minutes to head there. I can do this. I think I can, I think I can, I think I can...chugga chugga chugga.....
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Yes, you can make it. I think I would have died if I'd have had to wait until the afternoon!

Hope all goes well. Enjoy your nap.
 
Star, that makes sense. Is it common for GPs offices there to only have a few doctors? There are at least 10 and maybe up to 20 doctors in my GP's office, so if he's out I can usually get a same-day appointment with another GP if it's urgent. Still, I wish we had something here like the NHS. Even if it meant fewer doctors, longer wait times, etc - I'd still be happier with a system like that, I think. We just got hubby's doctor bill from when he went to the ER in March - $5000! Even with insurance, we have to pay $1000 of that. Personally, I'd rather wait a few days to see a doctor than go broke getting medical care, you know?
 
Oh, Meg, so sorry to hear that. I know that feeling all too well and it sucks! :( I don't know how they can even say IBS when the biopsies won't be back for awhile, and they haven't looked at most of your small intestine yet! Keep pushing for more tests, have you had anything like pill cam, MRI-enterography, small bowel follow-thru? Your doctors know that your bowel symptoms improve greatly when you're on pred, right? I was always told that IBS doesn't respond to pred - both of my doctors took notice and started treating me more like an IBD patient when I told them that pred worked wonders for me. If your doctor knows that you respond to pred and he still thinks it's IBS, if it were me I'd seek out a second opinion from another doctor.
 
No biopsies. It was all normal. He wanted me on bentyl but it hadn't helped. So he have me the same Mer as you cat. I think. He says there are other tests but he wants to wait and see if the meds help. He was comforting and said it could be something else. I didn't think it could be ibs since I have the vitamin issues. Oh well.

Oh, I woke up during and was fighting them to get the tube out. It was awful.

Im tired, going to bed. Crap to do around the house but I am checking out tonight.
 
Meg, I am so sorry to hear that. I would get another GI, biopsies should have been done even though it all looked normal, since that is the only way to 100% confirm/rule out Cealic disease.

Cat, yes that number of Drs is normal for the few surgeries I have been at, not sure about others. I know where you are coming from about the NHS, lived in the USA as a child, $80 they wanted for a bottle of peadatric medicine over 10 years ago, heaven knows what position i would be in now if I still lived there (although Dad works for the Government so has good healthcare).
 
No biopsies??? Wow, that seems strange to me. My GI loves taking biopsies. His middle name should be biopsy, that's how keen he is on taking biopsies. At the very least, celiac can be ruled out with biopsies taken during an upper endoscopy. Your doctor is puzzling to me! Next time you see him, definitely grill him as to why he didn't take any biopsies! That just doesn't make any sense!

I was on bentyl too (well, the generic version, I think it's called dicyclomine). That one did nothing for me either. I do keep it around because I've found that it works okay for menstrual cramps. I used to take ibuprofen for menstrual cramps and dicyclomine is the only thing I've found that works half as well and isn't an NSAID. I'm due to get my period next week so I'm curious to see if this new antispasmodic will do anything for my monthly cramps.

Edited to add: Star, looks like we posted at the same time about the same thing! Glad I'm not the only one who thinks it's odd that no biopsies were done. I thought biopsies were standard procedure in scopes, regardless of whether any signs of disease were seen or not!
 
Ditto the strangeness of your doc not taking biopsies. Isn't that one of the main advantages of a scope over other imaging techniques?
 
I'll post more tomorrow, but I have to say I am thoroughly heart broken. This sux. I can't sleep because I'm crying. I am sad.

Sorry to be a whiner.
 
Star: I am in the same situation as you,I am having abdo pain that feels worse than my period and my butt hurts...I dont know what the hell is going on with my body..I literally feel like its inflamed but nothing shows on the colonoscopy. Cuss away sistah! I am such a sissy I dont cuss I just cry and whimper. I really thought I was going to get better but the joint pain just doesent ease up. I caved in and took tylenol and tramadol aaaaaand nothing pain is still there! I cant believe this can actually happen to someone my age. I was at work and constantly felt like my legs were on the verge of cramping.

I am going to see my GP tommorow and getting my blood results back for the thyroid and test to rule out RA and Lupus. I am sooooo nervous I so desperatley dont want anything to be wrong but then again I cant go on living like this : ( Why must we suffer? I am sending out a big hug to all of my undiagnosed friends on here:ghug: I am going to push for the steroids tommorow. Should I ask for something simple like sulfamethoxazole or something like entocort or predisone? My GP is willing to treat me with steroids even though my GI said a big fat NO. And then I returned the big fat no with my big fat middle finger. I know this is whiney and annoying but I want my life back dammit. I want to actually feel 23. I need a xanax:yfaint:
 
quirkysoul: Dont hold back sometimes it feels so much to cry and let it all out! I usually go from :poo: to :eek2: to :confused2: then :( and then I take a xanax. If you lived close by I would go visit you and then we could whine and complain together. But We have to laugh and I found a video that will hopefully cheer you up watch both part 1 and part 2..part 2 is so funny because thats exactly what I go through when I got to the ER. I already know the drill. I truly hope things get better and I wish I could suffer some more of my crappy joint pain in place of you suffering your tummy pain.
http://www.youtube.com/watch?v=k9m2FLHlEwA
 
quirkysoul-
Keep your chin up... I know how frustrating it is- believe me, I have cried a BUCKET of tears. But God is in control, and I know he will help you, and me, and all the other sufferes on this forum to find an answer, and then with His grace, a cure. Until then, I am sending love, comfort and lots of prayers your way!! :hug:
 

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