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Crohn's Disease Forum

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Thank you, LittleMissH. I do trust your opinion so I just emailed my GI. Like I said in my earlier post, I'm not sure if he's even around, I think he's going to be gone for about a month. But I just went to the gym and had a pretty awful workout. Anytime I tried to do anything involving my abdominal muscles (even the triceps machine), my body sent me a very strong signal saying I should stop! I remember when I first hit remission, my body was practically screaming at me to eat and to exercise, so I did both, and I felt great. Today in the gym, my body was practically screaming at me to rest. I hate this. So I'll let you guys know if my GI responds. If he's not there, one of his nurses usually responds to his messages.

I did have one more thought while I was in the gym - I have severe GERD and I have to take anywhere between 6 and 10 Tums (antacids) whenever I work out. I also take 300 mg Ranitidine before a workout, and another 300 mg Ranitidine before bed. And on top of that, I take 40 mg Nexium first thing in the morning. That amount is necessary to keep my symptoms at bay and so that I can exercise. And I exercise almost every day. But maybe all those reflux meds are causing me to bleed? I did a quick google search of "Tums and rectal bleeding" and came up with a few hits. So maybe that's the culprit? If so, though, that's a problem. I cannot work out without taking a bunch of antacids - I will literally puke within a matter of minutes if I go into the gym without Tums in my system. And if I can't work out, I am going to get really depressed. I can't not exercise. Ugh, no matter what is causing this, I don't like it.

Wow, that was fast! As I was typing this, I got a voicemail - apparently my GI's clinic already saw my email and are calling me for more info. I'm going to return their call in a little bit - once I pull my emotions together. Crap like this makes me cry so easily, it's ridiculous.

Edited to add: Pulled myself together & called my GI's office, the nurse wasn't available when I called so I'm waiting for a call back. It's nearly 4 PM on a Friday so I'm not sure if I'll even get a call back today or if I'll have to wait till Monday.

I'm pretty sure you aren't supposed to take any other gerd meds wthin four-five hours of each other. Even though they are good at stopping gerd, they also affect how we digest our food. If there is no acid at all, you can't digest your food or break it down. I too have gerd and I think it is more an issue with the flap not closing that goes to the esophagus. Sounds like you have that also. I would really try to remedy taking so many of those and try some good probiotics. Just my thoughts. Hope you feel better soon Cat!:thumleft:
 
Crossroads, the only GERD meds I take at the same time are Zantac & Tums just before I work out. I've experimented a bunch, and that's the combination I need in order to get through a workout without refluxing horribly. If I take anything different/less than that, then I get too nauseous to finish my exercises. My doctor knows this and he's okay with it, he feels like working out is doing me a lot of good. I'm still able to break down my food, so I've on a good balance of meds.

I do have a hiatal hernia, it was found on endoscopy about 6 months ago. However, it's "small and sliding" according to my doctor, so it shouldn't be causing such severe symptoms. My GI is unsure why my GERD is so severe when my hiatal hernia isn't all that bad.

I can't take probiotics, they cause me more harm than good. They worsen my GERD and can cause me to pass blood too.
 
Aw Jayed I'm sorry you are in pain luv, keep us updated as we all care and their are some very helpful people on this forum! I always feel bad because I don't know how to help because I've only been suffering a short time compared to these lovely people but I guess as long as we are all here for each other then that's all that matters :)

Big hugs Hun x

Thank you Blurbird - hugs back :)

:ghug:
 
Crossroads, the only GERD meds I take at the same time are Zantac & Tums just before I work out. I've experimented a bunch, and that's the combination I need in order to get through a workout without refluxing horribly. If I take anything different/less than that, then I get too nauseous to finish my exercises. My doctor knows this and he's okay with it, he feels like working out is doing me a lot of good. I'm still able to break down my food, so I've on a good balance of meds.

I do have a hiatal hernia, it was found on endoscopy about 6 months ago. However, it's "small and sliding" according to my doctor, so it shouldn't be causing such severe symptoms. My GI is unsure why my GERD is so severe when my hiatal hernia isn't all that bad.

I can't take probiotics, they cause me more harm than good. They worsen my GERD and can cause me to pass blood too.

Hi Cat,

I, too, have the diagnosis of GERD and was told that that was my 'main' ailment for years - when having a flare up I would need to take 2 tums with a piece of bread and lay down to completely relax my entire system. Sometimes, I would take an NSAID as well like: indomethacin to reduce internal swelling - although these too can agitate our stomachs. Once the pain stopped (15-30mins depending), i could try to continue what I was doing previous, but heavy exercise i probably couldn't do :yfrown: .

Have you tried less weight, but more reps? Or less time at once?

Stay strong - :thumleft:

:ghug:
 
Crossroads, the only GERD meds I take at the same time are Zantac & Tums just before I work out. I've experimented a bunch, and that's the combination I need in order to get through a workout without refluxing horribly. If I take anything different/less than that, then I get too nauseous to finish my exercises. My doctor knows this and he's okay with it, he feels like working out is doing me a lot of good. I'm still able to break down my food, so I've on a good balance of meds.

I do have a hiatal hernia, it was found on endoscopy about 6 months ago. However, it's "small and sliding" according to my doctor, so it shouldn't be causing such severe symptoms. My GI is unsure why my GERD is so severe when my hiatal hernia isn't all that bad.

I can't take probiotics, they cause me more harm than good. They worsen my GERD and can cause me to pass blood too.

Oh wow! I guess then that whatever works best for you, glad your Dr. approves. I should try the Tums as well, because my Gerd never goes away completely, even on very strong Protonics. My GI thinks my flap doesn't close all the way. Maybe because no hiatal hernia was seen on scopes. It's awful, isn't it having Gerd?
 
I'm the same as you 723crossroads, nothing seems to control my reflux/regurgitation.

They do say with the autoimmune disease I have it makes the pyloric sphincter weak so it allows food back into the oesophagus though. And that's exactly what it feels like. No burning, just food coming back into my throat. So gross.
 
lsgs, that's mainly what I experience too - it doesn't usually feel like acid coming up, it feels like food/water/"stuff" coming up. I rarely get heartburn. When acid does come up, it's like burning dragon fire - fortunately that doesn't happen often. I get a lot of nausea with my GERD though too which is the sucky part.

Crossroads, my GERD never goes away completely either. With all the meds I'm on now, it's fairly well controlled though. I'm not waking up in the night having awful reflux attacks anymore, and I can get through a workout without puking. The symptoms are always there, but they're much easier to tolerate thanks to Nexium, Zantac, and Tums.

Jayed, only 2 Tums? I took 9 Tums before my workout today plus a 300 mg Zantac. :p I have to have a completely empty stomach too, no food for at least 2 hours before working out, and only water. I once tried drinking Gatorade before a workout, and I had to stop after about 2 mins. Got super nauseous and just could not continue! Yes, I could do more reps/lighter weights, that's what I was doing when I first started lifting weights. There's nothing like lifting a big, heavy weight until you can't possibly do one more rep though. :) I like to push my muscles to the point of failure. I feel so strong, like a normal healthy person when I'm doing that. My gym time is the only time I can fool myself into feeling healthy and I treasure that and try to make the most of it each time. So yeah, I could ease up, but I feel so much better when I don't if that makes sense. :p
 
Cat,

Lol! :lol2: Yes, only 2 tums (at one time) the big ones though "Tums Smoothies" - mainly because I can't stuff more down my throat without gagging. I, like you and many others here, have had to take so many throughout the years that I just can't stand that chalky, nasty taste. You do make an excellent point, however, when the stomach (GERD) is acting up, this may be something I have to do repeatedly throughout the day... :yfaint: (I do have to point out that at times, it's hard to say whether its the GERD or the Celiac Artery that is the culprit of the day.) :hallo3:

I do know what u mean by excersing with weights - i used to workout years ago. Sadly I have not been able to exert myself like that in years, but perhaps after surgery i can slowly start again! :thumleft:

I admire your strength!!

:rosette2:
 
Well, technically I only have 2 Tums at a time too (I also do the Tums smoothies, they're less chalky than the regular Tums). Before a workout, I've pretty much got it down to a science. :p I have my Zantac before I get my things together. 2 Tums as I'm getting ready to go. 2 more as I head out the door. 2 more as I'm on the road heading for the highway to the gym. 2 more as I exit the highway, and 1 for good luck as I'm in the changing room at the gym. That usually works out quite well.

Hah, it's not so much strength as it is stubbornness. ;) I might be flaring, and my doctor told me not to lift anything heavy for 2 weeks. I lasted one week and went right back to the gym. :p I'm feeling pretty good though - I am taking it easy on my abdominal muscles as much as I can.

If you're interested in working out, we have a fitness & exercise support group here. I would say, start very slowly and see what you can and cannot do. Maybe short walks or gentle yoga to start with, and if that goes well then you can gradually increase the amount of time & intensity. And of course don't push it if something hurts. I personally can't jog - both my hips now have arthritis (I'm only 33, so that sucks). And I seem to have an increase in symptoms when I ride my bike, which is frustrating. But I can lift weights, and do yoga, and walk my dog. So it's okay, I can still do some exercise.

Speaking of my dog, she's been passing blood in her poo all weekend! Poor thing, I know just how she feels. I hope she just has an infection or whatever and not IBD.
 
Thanks for the tips you all! I am going to go for the tums next time as soon as I get some. I need something for the breakthrough burning.
 
Wow! Lots of posts!.. the only experience I have with heartburn was when I was pregnant.. I hated that so much. So I do not envy you guys suffering with it all the time!

My spa weekend was lovely :) but im getting really nervous for the surgery this friday :( eek!
How are u all doing? Xx
 
@ jayed75 - that's so interesting about the celiac artery compression syndrome. Ill have a proper read about it later on after work.. as I didnt understand it at first glance. When will you find out if you are having the surgery?
 
Bozzy I always lose track of the posts in this thread, it moves so quickly.

I've put my turbo trainer in to get fixed so I can start trying to shift some weight. I haven't gained for about two months and I can eat anything I like again. So I should be able to start losing some. Hopefully get a bit fitter in the process if my turbo can be fixed! Can't wait to get those cyclists thighs and calves again! :D
 
Just a update that I have a partial diagnosis, my Dr has said that its going to either be Crohn's disease or Celiac Disease.
Can you believe that my mother turned around after I told her and said "oh so nothing life threatening then" -___-

My thyroid he said he isn't too worried about because my blood test was fine the month before but just to be safe than sorry he's ordered me to have an ultrasound but he doesn't think they are related and thinks its a separate issue.


So not a diognosis but a partial which is better than not knowing at all, least its narrowing it down xxx
 
lsgs, what's a turbo trainer? Is that one of those things you put on your bicycle so that you can ride indoors, it basically turns it into a stationary bike? Have fun with it! I know you've been wanting to ride again, and I hope you can get outside for a proper ride once you feel confident enough to.

Bozzy, I've heard that from friends of mine who were pregnant, my friend from childhood said she had awful heartburn all through her first pregnancy, and my sister-in-law (who is pregnant with her 5th kid!) has complained about heartburn a lot too. I don't have kids and have never been pregnant, but the more I hear about it, the less it sounds like something I want to go through. :p I look at my sis-in-law and her 3 monsters and her one good kid (guess which one is my favorite, ha ha) and she's got another monster on the way, and I'm just SO glad that isn't me! I think I would run away and join the circus if I had to deal with that many kids all the time! Although I would adopt her oldest in a heartbeat - my oldest niece likes to read, she's quiet and thoughtful and for some reason the kid actually likes hanging around with dorky old Auntie Cat. :p I usually don't like kids but my niece is pretty awesome. This is probably another reason I shouldn't have kids - I totally play favorites, and I resent my parents for playing favorites with my brother and I (he was the favorite). So if I ever do have kids (not likely), I'm totally going to stop at one so that they have no choice but to be my favorite! :p

Wow, that was a ramble. What was I talking about? Oh right, heartburn. Ha ha. Yeah, I fortunately get it very rarely. I reflux all the time but rarely feel actual heartburn type pain. Although if I eat fried food - fried fish being the biggest trigger I've found - I will have horrid heartburn for hours and hours. I remember hubby and I went to a fish fry awhile back, and then we went to see a movie afterwards. I barely remember anything about the movie because I was so uncomfortable throughout the whole thing. I had to sleep sitting upright that night too, which is always so uncomfortable and I have such a hard time falling asleep in that position. Not fun, so no more fried fish for me.
 
Bluebird, that's good news! What's your doctor basing this on, purely by symptoms or has a test come back with a positive result? Have you been tested for celiac yet? The blood test is notoriously unreliable (I've heard that you may as well flip a coin). The "gold standard" for testing for celiac is to do an upper endoscopy with biopsies. Oh, and you have to have been eating gluten regularly for at least a couple of weeks before they take the biopsies. If you don't have gluten in your system, your body stops the reaction and everything looks normal, even if celiac is actually present. So if you're gluten-free at the time of the test, everything will look fine even if it's not, if that makes sense.

I'm sorry your mother sounds very unsupportive. Mine is too if it's an consolation. On the subject of celiac, I've had 2 upper endoscopies w/ biopsy and also I've had the blood test for celiac. All came back negative, I've been told by my doctor that I 100% do not have celiac. But my mom for some inexplicable reason thinks I have celiac, and that if I just go gluten-free then I'll magically have perfect health forever. She refuses to listen to reason on this subject, and she's self-diagnosed herself with celiac and she actually tells people she's been diagnosed with it (she's never seen a doctor about it and didn't have any stomach or dietary issues to begin with). I don't know if she's lost her mind or what. But yeah, instead of her being supportive and listening to me, I just keep getting the same gluten lecture over and over. My dad is kind of an idiot, but he's actually tried to be supportive which surprised me. He'll actually ask about my health and ask what my doctor said and so on. My mom never asks, always just lectures. I'm so tired of it. I'm sorry you have one of "those" mothers too. :(
 
Bluebird, that's good news! What's your doctor basing this on, purely by symptoms or has a test come back with a positive result? Have you been tested for celiac yet? The blood test is notoriously unreliable (I've heard that you may as well flip a coin). The "gold standard" for testing for celiac is to do an upper endoscopy with biopsies. Oh, and you have to have been eating gluten regularly for at least a couple of weeks before they take the biopsies. If you don't have gluten in your system, your body stops the reaction and everything looks normal, even if celiac is actually present. So if you're gluten-free at the time of the test, everything will look fine even if it's not, if that makes sense.

I'm sorry your mother sounds very unsupportive. Mine is too if it's an consolation. On the subject of celiac, I've had 2 upper endoscopies w/ biopsy and also I've had the blood test for celiac. All came back negative, I've been told by my doctor that I 100% do not have celiac. But my mom for some inexplicable reason thinks I have celiac, and that if I just go gluten-free then I'll magically have perfect health forever. She refuses to listen to reason on this subject, and she's self-diagnosed herself with celiac and she actually tells people she's been diagnosed with it (she's never seen a doctor about it and didn't have any stomach or dietary issues to begin with). I don't know if she's lost her mind or what. But yeah, instead of her being supportive and listening to me, I just keep getting the same gluten lecture over and over. My dad is kind of an idiot, but he's actually tried to be supportive which surprised me. He'll actually ask about my health and ask what my doctor said and so on. My mom never asks, always just lectures. I'm so tired of it. I'm sorry you have one of "those" mothers too. :(


He's going off what my GI found, something in my bloods that relates with celiac and he's going off symptoms for Crohn's too.Just seems the only two things to fit it.
He's going to get my GI if she agrees to start me on a low dose of crohns meds and see if I respond.

I'm 25 and apparently it can be harder to detect.

That's all I know anyways.

My mum has type 2 diabetes and she got that because of a life time of bad eating and she compares that too by two possible outcomes?
She is very competitive with me and its pathetic, maybe we should get our mums together lol
I've just told her off lol she's been this way my whole life. I was born with epilepsy and nearly died a few times and she acts as if she was the one with it and not me, she just wants attention.

She self diagnosed herself lol omg

My dad has been very good x
 
What kind of meds are they going to try, have they said? Also, I should have mentioned this earlier but it slipped my mind - it IS possible to have both Crohn's and celiac. I hope you don't have both, but it's not uncommon to have both. I hope that's not the case for you though.

I'm sorry your mother is like that. Mine is crazy, her parents both died of cancer when she was young so she goes kind of nuts trying to prevent cancer in herself (she runs marathons, eats really healthy, etc). I think, me getting sick, it just somehow made her crazier and she had to try to find a way to try to "fix" me, or something like that. She's too far out there to realize how damaging she's actually being. Deep down I think she means well, but it's not helpful to me at all. Gluten isn't my issue but she can't not fixate on that for some odd reason.
 
Lol well that would be being an over achiever.
Asacol it's called, it's just a trial.

:( aw that is sad but she shouldn't treat you like that, maybe she's just scared she's going to lose you too. It is odd for her to focus so much on that but maybe if she does that then she won't have to accept its something else, gives her control which I guess she must of felt she lost when her parents passed, the unknown is always harder for people with control issues so that's why she wants it to be that.

X
 
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lsgs, what's a turbo trainer? Is that one of those things you put on your bicycle so that you can ride indoors, it basically turns it into a stationary bike? Have fun with it! I know you've been wanting to ride again, and I hope you can get outside for a proper ride once you feel confident enough to.

tacx-turbo-trainer-mat.jpg


This is a turbo trainer! I like it cause I get to use my road bike with it, I find exercise bikes a lot more boring for some reason. Hopefully once I've built up some fitness indoors I can take my bike outdoors. I am just hoping it can be fixed :)
 
How annoying is having to constantly run to the bathroom with d and waiting on a phone call you really don't want to miss? lol.

I'm so glad I have somewhere that people will understand :p
 
Bluebird - glad to see your GI is working on a diagnosis.. have you tried being gluten free before? Sucks that you might have Crohn's too :(

Me and Cat have rambled about our mothers before.. but I cant believe what your mum said! I wonder if these AI illnesses also come with "annoying awful mother syndrome" boy did we draw the short straw!! Lol

Cat - your SIL is pregnant again!?!?! Wow.. and this will be the 5th? She deserves either a medal or to be taken away by men in white coats lol!!

Lsgs - I totally know what you mean. Guaranteed the call will happen when you are on the loo too.
 
I had the blood test for celiac and it came back negative. I didn't know it was unreliable, that sucks because after the blood test both of my docs were positive it's not celiac. I can't seem to tolerate gluten very well though. The GI I saw did say most of my symptoms and trigger foods seem to fit Crohn's but he think I still might not have it because I don't get diarrhea hardly ever. He put me on docusate sodium (I'm up to four a day now) plus fiber con and probiotics, but I am still constipated as all get out. Still don't even go every day! It's better than having constant diarrhea but still frustrating.

When I am not flaring and can eat regular foods, I get terrible heartburn from doughnuts. Seems like the combination of sugar and fat is not popular with my system! And most fried foods will make me quite sick to my stomach. When I was pregnant I did get heartburn a lot too, and drank a TON of milk (good thing I didn't have the lactose problem back then).

Cat and Bluebird, you guys make me feel pretty lucky to have the supportive mom I have. She's a watchdog and tells me I'm too thin all the time, but she totally believes what I have wrong and tries to help any way she can. One of my friends was nearly in tears Saturday night because of my brain tumor and upcoming surgery and she pulled him aside and told him he needed to be strong because I was trying to comfort him and she said I can't do that right now. She's kind of the other way than disbelief!
 
Bluebird, I was on Asacol for a couple of years (they recently stopped making it in the US as the patent is up, so I had to switch to a different but very similar med called Delzicol). It's a very mild med, it's a mesalamine-based drug which is the mildes of the Crohn's treatments. It's used more for maintenance of remission than it is to get a flare under control - so it may not do much for you because of that and the fact that it is so mild. It is basically like rubbing a soothing salve on your intestines - the problem with that is, that Crohn's can affect the entire thickness of the bowel. So if you're putting medication on the surface only, it's not going to penetrate deeper. In other words, it might work - but don't get bummed if it doesn't. It helped me maintain remission for a good couple of years, but now that I seem to be flaring, Delzicol is not doing much to keep things under control. Anyway, definitely give it a shot, it could help and there's a low risk of side effects.

lsgs, I get *so* bored by my exercise bike too. But I just cannot ride my regular bike right now, not even on one of those turbo trainer things. I find I use my abdominal muscles too much when balancing on a bicycle, and it causes me tons of trouble (the bleeding episodes first started after bike rides). I have a recumbent stationary bike, so I can sit back and not use my abdominals nearly as much, and that doesn't cause me gut trouble. But yes, it's super boring. I have my stationary bike set up with a TV and DVD player in front of it, and a Roku box too, so I can watch whatever I want (the Roku box has Netflix, Hulu, etc) but I still find myself wishing I was actually going somewhere out in the fresh air, rather than just pedaling while staying still in my spare bedroom. :p

Bozzy, yep, niece or nephew # 5 is on their way, I believe sis-in-law said she's due in October. She has 2 girls and 2 boys, she said she's hoping for another girl. But this one was a total surprise, sis-in-law is not very strict about using birth control it seems! :p She told me she and her husband only use condoms, no other form of BC. I know kid #1 and #4 and soon to be #5 were all oopsies. #3 was planned (they had 2 girls and wanted to try for a boy), and I'm not sure if #2 was planned or not. So yeah, more than half her kids were "oops" - not a very good track record for my sis!

Cindy, yeah, the blood test for celiac is not definitive by any means. It's also possible to have a gluten sensitivity without having celiac. My understanding is, celiac means gluten causes both symptoms and intestinal damage. Gluten sensitivity causes symptoms, but no damage, so you'd look fine on biopsy and wouldn't cause yourself actual harm by eating gluten, but you'd feel crappy. I'm glad you have a supportive mother, that must be so nice. It sounds like you have good friends too! I think I have to disagree though, sometimes I get constipated if I take too many meds (too much Zofran will constipate me), and I would way rather have diarrhea than constipation. Yes, it's miserable to go and go and go, but I'd rather have things moving through me than not. Constipation is like torture! D is no picnic, but in a way I'm somewhat glad that I'm much more prone to d than to c. There's nothing like a nice normal poo, though! In remission I've had some that were so perfect I was tempted to take a picture! :p Ha ha.

How's everyone else doing today? I'm feeling kind of crappy. Had a bad episode of d last night and another this morning. My guts are grumbly so I'm taking it easy food-wise. Oddly, though - my libido is going kind of nuts lately! Like I said before, if this is a flare, it's the weirdest flare ever. Usually in a flare, sex is the farthest thing from my mind. But lately I can't get it off my mind! :p Very, very odd. Well, at least my hubby is happy. ;) It's totally weird though, my body is throwing such odd stuff my way lately. The issue with my lips is not improving either and that one is also very odd, I've never had a flare before where my lips were affected. They feel super dry all the time (I've been slathering on lotion and lip gloss to no avail), and my top lip is numb most mornings. Then in the afternoons the skin on my lips goes from dry to peeling off. There is blotchy redness on my lips that sticks around all the time, whether numb or dry or peeling. It's like this every day lately. It's not painful or anything, but it's really annoying and weird. I do not understand anything that my body does lately. I'm definitely calling my GI after my rheumy appt, we need to get this stuff figured out.
 
Cat,
you definitely have something odd going on with your lips! Hopefully it's something simple and an easy fix. Your hubby must be one happy dude with the sex drive thing! I know mine has not been up to usual lately which is odd for me, but I'm thinking it has something to do with the brain tumor, most likely. So hopefully after surgery.....

And you are right, constipation is no fun. It's gotten to the point where I'm excited when I do go and tell my hubs about it. Fortunately he just laughs at me and doesn't get grossed out!
 
hey all

visited GI on Monday, and he was really good. he's just like my GP - actually suspect they went to med school together... or at least know each other. it went as suspected... he feels it is likely to be crohns, given symptoms, history and the calprotectin, but not ruling out cancer yet (guess they can't without having a proper look for it). getting me in for the next available appointment for colonoscopy, and doesn't want to prescribe me anything until he knows the haps. I've said to my husband that i'm going to book into a fancy hotel room for the prep - nice bathroom! a cleaner! warmer than our house! genius. mum thought it was hilarious.

talked to my boss and have cut my hours back to 0.8 - will work two days in my office and two days at home (they're setting me up with full remote access to our systems and laptops and whatnot), with fridays off (if i can manage to stay away), and have to promise not to still try to work 60hrs... oops. i offered the 0.8 as a token of good will - i know i'm nowhere near doing as much as i should/would usually. my boss said he was happy for that only because it means i'm less likely to feel like i have to do as much work :)

at home today - in bed with cat curled up. have already written my monthly BI trends and analysis report for our communications board (give or take some stats that I've got someone sending through to me), and have been on the phone to the minister's office and my boss, providing research for an urgent question in the House. and it's only lunchtime! working at home is good.

i'm just ranting. i actually feel awful. my husband is not coping at all... bless his heart - he doesn't like to see me unwell :( i'm usually the strong one, but i don't have the energy to make him ok too.

self-obsessed me, at the moment.

still sending love to you all.
xLT
 
Just make sure you bring enough "supplies" with you to the hotel, Lenatilde! For prep, you're going to want flushable wet wipes & soothing barrier cream (you're going to get pretty sore back there), a variety of clear liquids and whatever else is allowed (things like clear broth, sports drinks that aren't red, jell-o that isn't red, etc), and so on. I always like to light scented candles and have some nice bubble bath on hand, soothing music playing, whatever I can do to make myself more comfortable during prep. And of course I need to have portable entertainment - my Kindle is usually my go-to. Prep is typically the worst part of the colonoscopy experience - I'm glad you're thinking ahead to have a hotel room, but just make sure you don't forget to bring any of the comforts of home! :) Good luck with the scope, keep us posted on when it'll be and how it all goes. And of course feel free to ask us any questions, I think we've all been scoped at least once!

How's everyone else doing today? I was looking forward to the long weekend - tomorrow is Independence day here, so no work for me. And I'm taking Friday off so I'll have a 4-day weekend. :) But yesterday, hubby's boss said he has to work Thurs- Sun so he'll be working the entire time I'm off! :( (I'm hoping the boss made a mistake and forgot that Thursday is a holiday.) We were going to take the kayak out and spend some nice time together, but now it looks like I'll be on my own. Hmph! Well, I'm fine having alone time too, and we do need the money so I know it's best that hubby works all the hours he can, but it still kind of sucks in a way. Oh well, that's life I guess.

Health-wise I'm still not great - had a fairly normal poo last night, but was back to d this morning. Lips are worse today than they have been, so I ran to the grocery store and found some vitamin B6 on sale and am going to try that and see if it helps any. (Thanks Cindy for the tip about that!) My lips were seriously so numb this morning that I got kind of happy when it was afternoon and they started peeling - I peeled off as much skin from my lips as I could just so that I could have some feeling in them again! They feel raw now, but honestly raw feels better than numb. :p Putting menthol lip gloss on raw lips feels all tingly and like it's doing something, whereas putting lip gloss on numb lips doesn't feel like it's doing anything. I really hope these vitamins stop my lips from doing this!
 
Bluebird - glad to see your GI is working on a diagnosis.. have you tried being gluten free before? Sucks that you might have Crohn's too :(

Me and Cat have rambled about our mothers before.. but I cant believe what your mum said! I wonder if these AI illnesses also come with "annoying awful mother syndrome" boy did we draw the short straw!! Lol

Cat - your SIL is pregnant again!?!?! Wow.. and this will be the 5th? She deserves either a medal or to be taken away by men in white coats lol!!

Lsgs - I totally know what you mean. Guaranteed the call will happen when you are on the loo too.


Nope I've never tried a glutton free diet, bit annoying as I already can't eat hardly anything so if they say it is celiac then I'm screwed is the nicest way of putting it lol I dunno I think it will either turn out to be both like Cat was saying or I reckon it may be Crohns.
If it was just glutton I could handle it because I know you can get a lot of foods glutton free.

Yeah I swear we should get our mums together and then they can argue between each other lol
I think people struggle to understand because they think if something isn't cancer then "it's not that bad" which annoys me, it's ignorance.
I'm not one for fuss but it would be nice if people took things a bit more seriously.
Also I wish people would understand that it's not just about not eating certain things and losing weight which people like to make continues jokes about like "I wish I could lose weight" lol like oh yea I love being like this.
I think people want to be positive which is fine and I do make jokes myself but at the end of the day it's not fun n games as you guys know.
 
Bluebird, I was on Asacol for a couple of years (they recently stopped making it in the US as the patent is up, so I had to switch to a different but very similar med called Delzicol). It's a very mild med, it's a mesalamine-based drug which is the mildes of the Crohn's treatments. It's used more for maintenance of remission than it is to get a flare under control - so it may not do much for you because of that and the fact that it is so mild. It is basically like rubbing a soothing salve on your intestines - the problem with that is, that Crohn's can affect the entire thickness of the bowel. So if you're putting medication on the surface only, it's not going to penetrate deeper. In other words, it might work - but don't get bummed if it doesn't. It helped me maintain remission for a good couple of years, but now that I seem to be flaring, Delzicol is not doing much to keep things under control. Anyway, definitely give it a shot, it could help and there's a low risk of side effects.

I looked up the meds and yeah I saw something about them no longer being sold but thanks for verifying that for me x
I think my GP just wants to see if it works but it obviously comes down to what my GP thinks.
If they can't sort me then they will send me to Georgetown in Washington as apparently Southern Maryland isn't that hi tech lol those where my gps words haha

How you doing today? How's everyone else?
Lots of love to everyone xx
 
Bluebird, that's interesting that your GP would say that the hospital you go to isn't "high tech"! I have found that high tech doesn't mean a whole lot, I go to a fancy schmantsy high tech teaching hospital and they do all sorts of cool stuff and have pioneered various treatments and things like that - but they still can't diagnose me so go figure! :p It seems to me like a good doctor means a lot more than good technology.

I'm pretty sure now that I'm flaring. My guts woke me up at 3 AM with nausea and an urgent need to go to the bathroom. It's just past 4 AM now and I'm feeling somewhat better now that I have my heating pad on and have taken some Zofran, but still not feeling great. Good thing I already took today off of work, so I can rest up today, but it's frustrating feeling like this. I feel like a full night's sleep is something so basic, and my body can't even give that to me, it's like its not even trying. I put in all this effort to be healthy, and my body is just like, meh, whatever, you don't really need sleep or food to live do you? :p

I see that Bozzy's headed to her surgery shortly. Good luck Bozzy!!

I'm going to attempt to go back to sleep. Wish me luck. Good night/morning all!
 
Thanks Lenatilde - I tried going back to sleep, had to get up a couple more times, but finally managed to get back to sleep at around 5 AM I think? Slept fairly well until 9:30 so I did get some sleep. :) My guts feel somewhat better, I'm pretty empty I think at this point. :p I feel kind of like a zombie though, my body clearly didn't like having a middle of the night episode like that. I haven't attempted to eat yet today either so I don't know what'll happen when I try to put some food in me.

I'm mad because today was supposed to be my day of getting stuff done. Hubby works all day today so I was going to do laundry and go grocery shopping and hit the gym too. I know the gym is out now, but I still stubbornly want to do everything else. I've been pretty functional so far during this flare, I don't want to let it stop me now.
 
Bluebird, that's interesting that your GP would say that the hospital you go to isn't "high tech"! I have found that high tech doesn't mean a whole lot, I go to a fancy schmantsy high tech teaching hospital and they do all sorts of cool stuff and have pioneered various treatments and things like that - but they still can't diagnose me so go figure! :p It seems to me like a good doctor means a lot more than good technology.

I'm pretty sure now that I'm flaring. My guts woke me up at 3 AM with nausea and an urgent need to go to the bathroom. It's just past 4 AM now and I'm feeling somewhat better now that I have my heating pad on and have taken some Zofran, but still not feeling great. Good thing I already took today off of work, so I can rest up today, but it's frustrating feeling like this. I feel like a full night's sleep is something so basic, and my body can't even give that to me, it's like its not even trying. I put in all this effort to be healthy, and my body is just like, meh, whatever, you don't really need sleep or food to live do you? :p

I see that Bozzy's headed to her surgery shortly. Good luck Bozzy!!

I'm going to attempt to go back to sleep. Wish me luck. Good night/morning all!

Awe good luck Bozzy!!! Make sure you get treated like a queen when your in recovery :) x

Cat: lol he made me laugh, he's a really nice dr though but I dunno hopefully they decide what it is but I won't hold my breath ;) ha

Poor you darlin, :((( are you okay now?

I tried having a low fat beef burger yesterday but it hurt, nowhere near what the one I tried in cheeseburger in paradise but still, I knew I shouldn't of but we had this BBQ for 4th of July ( yes I'm a Brit celebrating 4th of July lol) my own silly fault.
 
Grr just made my husband and I a hot drink and used normal milk in mine and didn't realize till I drank 3/4 of it -___- now I feel icky, I'm a daft cow at times lol
 
I feel for you, Bluebird, I can't do beef nor dairy either. Have you tried substituting ground turkey in place of beef? I do that all the time and it usually goes quite well for me. I also do almond milk in place of real milk - if you do almond milk, just make sure to get one that doesn't contain carrageenan as that can cause us even worse tummy troubles.

I'm doing a little better. Just had some toast and so far so good. Being stubborn, I'm going to go out and run a bunch of errands soon. I'm pretty sure that's a bad idea but I just don't care anymore. :p

Bozzy is out of surgery! She didn't give many details, she said she's pretty out of it. The fact that she's posting updates on FB already makes me think it must have went well. Yay Bozzy! :)
 
darn, a flare.... I was hoping perhaps it wasn't. :( I'm sorry Cat! Not feeling that well myself this week, lots of nausea and some pain. I dunno if the nausea is from the tumor or the belly. Ugh. I hope you feel better, girl!
 
Bluebird, I'm with Cat. I can't do beef or dairy either! But I do love turkey burgers so they are a great substitute for beef burgers. Almond milk is also my friend!

Thinking of bozzy, hope she's feeling great.
 
Cat:I'm glad you feel a bit better, I see you also don't like to do as your tummy tells you LOL but I wish I hadn't been so dopey, been sick and feel crap and have to go out to practice driving -___- boooo!

Cat/ Cindy: I haven't tried turkey!! I shall! I'm a girl who loves her meat I think I was a T. rex in my previous life haha I have soya milk which seems okay but a British cuppa with soya isn't the same, you need cows milk so I've been missing my tea but people say drink it without milk and I hate it and I just would rather not bother. Tried peppermint tea the other day and I nearly was nearly sick lol how dramatic but I just don't like other teas other than black .... With milk :/

Have you ladies tried veggie burgers and veggie sausages?

One of my friends has a infection so for about 8 months she's had to cut out certain foods so she was banging on (English slang for talking a lot) about all these extreme diets she's been doing because when its gone then she can eat normally and well she just kept telling me what I should do -___- I humoured her but I'm like its not really the same and when I updated her on my situation shall we call it then she's like "oh but it can go into remission" I hear it can but it was the way she said it (how much of a woman do i sound? lol) but I just don't think people get the severity of what we go through?

Aww I'm glad Bozzy is doing okay :) poor chickadee xx

By the way did everyone have a good 4th of July? X
 
Bluebird, I'm the opposite, I can't do anything but herbal caffeine-free teas (caffeine triggers migraines for me) so I rely on stuff like chamomile, ginger, and sometimes peppermint tea. (You're not supposed to have peppermint tea if you have GERD, as it can make that worse, but it's very soothing and I have some every once in awhile.) I don't put milk in my tea. But now that I've been doing almond milk for awhile, I honestly can't even remember what regular milk even tastes like. Almond milk is really creamy and delicious, it's much better than the other milk-alternatives. Soy milk is okay, rice milk I found to be really watery.

Have fun with your driving practice! I love to drive, it relaxes me so much. If I'm by myself in the car, I can crank my music or talk to myself and vent out some feelings, cry, whatever I need to do to feel okay. My car is like my own little cocoon. :)

Cindy, yeah, I'm going with the assumption that this is a flare, although honestly I'm still not totally sure what's going on. I still haven't had night sweats, paleness, going 20+ times in a day, etc. Those things have all been pretty standard for my flares up until now. But things are definitely not right, so it's either got to be a flare or something new, right? I refuse to take on any new illnesses! :p I already have IBD, GERD, arthritis, funky "nodules" on my liver, probable OCD, and possible Asperger's. If this is something new, I just don't know what I'll do! So a flare is the better possibility and I'm going with that for now.

I was feeling somewhat better - I ate toast without issue - so I decided to run some errands. I had a ton of things to do and I ended up going to like 6 different places. My last stop was the grocery store, and as I was waiting in line to check out, I felt hot and dizzy and like I might pass out. I think I pushed myself too hard, so I came home and am resting now with my heating pad on, having some gatorade and a snack. I'm feeling a little better again, no longer in danger of passing out anyway. Going to rest up the rest of the day. I can rest all day tomorrow too - I need to be functional by Sunday though, as it's my grandma's birthday party that day and I can't miss that. But if I could survive all those errands today, then surely I can survive eating a bit of cake on Sunday, right?
 
See the caffeine in tea doesn't bother me it makes me pee slot lol but it's only coffee that does not make things good at all :/

What is GERD? Maybe I shall google it.

I took your recommendation and got minced chicken, I know you said turkey but they had ran out -__- so I thought 50% fat free minced chicken was the next best thing!!! So will make my own burgers in a min minus onions because if I eat onions they make my stomach kill :(

Go rest up! Naughty you for doing too much but then again I can't blame you, frustrating when you need to get stuff done.

Mmmmm cakkkeeee *drools* maybe you could have a little nibble just to check its okay for everyone else ya know? Take one for the team ;) ha xx
 
Thanks for the well wishes everybody!
I am on hourly observations.. so im wide awake..

My neck is stiff.. and they have just put a catheter in because I couldnt pee haha!!

I cannot even begin the describe the fiasco going on in the next bay... im in the neurosurgery high dependency unit. And there is a woman who is accusing the nurses of stealing and threatening to call the police.
(This isnt true! The nurses are lovely.. and I think the old woman is not "all there")

I will explain more tomorrow.

This hospital is great.. before surgery they did some acupuncture to my wrist to help with post operative sickness. *touch wood* I think its working!
:hug: xxx
 
do you guys think it possible for a proton pump inhibitor such as omeprazole to be causing nausea and stomach bloating/aches?

Ive just been reading my diary, and the daily nausea and stomach discomfort only really came on after i started omeprazole after a very painful and explosive acid reflux event...
diarrhoea and stomach pain has always been around though for years...
worth scaling back on the omeprazole as a trial do ou think? 40 mg atm... might ak dr on monday if we can gradually reduce it to 10 mg then one every other day etc,
 
Bluebird, GERD is gastric esophageal reflux disease. Basically it means I have chronic acid reflux. My GERD is severe and isn't particularly well-controlled, I reflux the majority of the time even though I'm taking multiple medications for it. I had a test done a little while back to test the severity of my GERD. They give you a score - zero means you are fine, and 100 means you have like the worst GERD ever. I scored a 95. :p I had something like 48 separate episodes of reflux during the 24 hour test, and the longest episode was like 5 hours I think? And I did that test while taking all my medications as usual. So yeah, my GERD is bad!

Chicken burgers sound yummy. :) If you can find ground turkey, you can make burgers or meatballs or whatever you'd use ground beef in. Turkey meatballs are yummy with spaghetti, mmm. I'm making myself hungry!

You mentioned having issues with onions - can you do garlic? I can't do raw onion or garlic in any form, but I can do cooked onion okay. Like sauteed with some olive oil and mixed in with pasta, that's fine on my tummy. Garlic, however, does terrible things to me. I'm not sure why that is.

Yes, cake! I will definitely take one for the team, especially if it's chocolate cake. :D Yum!
 
Charlotte, it's possible Omeprazole is causing your symptoms. If you take too much, it could possibly be reducing the acid in your stomach too much to the point where things aren't getting broken down properly. That started to happen to me when I was on 80 mg of Nexium (esomeprazole), I suddenly couldn't break down my Asacol tablets because my pH was too low. Or maybe you are just having a side effect or mild allergy to the omeprazole? There are lots of other reflux meds to try, so maybe ask your doc about switching to something else if a lower dose doesn't change things.

Bozzy! Glad to hear from you hun! Glad everything is going okay, although that sucks that you have to wake up every hour! I've heard good things about acupuncture so I'm glad that went well for you too. Are they going to let you sleep or will they keep checking you hourly during the night?
 
I just dozed off in that last hour.. but im on hourly obs until 4am I think (its midnight now)
I thinks thats because I came ou of theatre around 4pm.. so that is 12 hrs.

She keeps checking my pupils with a light and asking me what month/year it is haha..
Oh well im not too bothered.. because I cant sleep long due to my neck becoming stiff.
 
Bluebird, GERD is gastric esophageal reflux disease. Basically it means I have chronic acid reflux. My GERD is severe and isn't particularly well-controlled, I reflux the majority of the time even though I'm taking multiple medications for it. I had a test done a little while back to test the severity of my GERD. They give you a score - zero means you are fine, and 100 means you have like the worst GERD ever. I scored a 95. :p I had something like 48 separate episodes of reflux during the 24 hour test, and the longest episode was like 5 hours I think? And I did that test while taking all my medications as usual. So yeah, my GERD is bad!

Chicken burgers sound yummy. :) If you can find ground turkey, you can make burgers or meatballs or whatever you'd use ground beef in. Turkey meatballs are yummy with spaghetti, mmm. I'm making myself hungry!

You mentioned having issues with onions - can you do garlic? I can't do raw onion or garlic in any form, but I can do cooked onion okay. Like sauteed with some olive oil and mixed in with pasta, that's fine on my tummy. Garlic, however, does terrible things to me. I'm not sure why that is.

Yes, cake! I will definitely take one for the team, especially if it's chocolate cake. :D Yum!




The burgers turned out okay but I made them too spicy :/ I can eat garlic and I think I manage okay with it.

Wow, good lord 95!!!! I'm pretty sure you deserve a trophy for putting up with that!
It doesn't sound nice at all :( poor you Hun x

What a legend ;) thata girl!! I'm eyeing up cheesecake in the fridge but I daren't! *drools* omnomnomnoms!
 
Hi everyone just stopping in for a wee update. Hope you are all well (as if we ever are, but as well as you can be!)
Just out of hospital with a partial blockage in my large bowel. I've been told to eat only liquid food and take a lot of laxatives. Apparently my potassium levels are dangerously low-maybe explains why I have tremors constantly. People keep asking me am I cold!! It's so embarrassing as its summer here and I've spilt so much juice water etc over myself when I've been out its not a good look. My GI came over to see me when I came in and said he would bump my appointment up to discuss my faecal calprotectin results and he said we might start treatment. I don't know if this means a diagnosis or what! He said he wants to scope me again-sadly :/ They wouldn't give me much pain relief in hospital which I think was just cruel. But opiates and the bowel don't work we'll together so they put me on a laxative. I though this was odd as I have crohnic diarrhoea but aparent the blockage is making it over flow diarrhoea. I'm so confused and in so much pain I just want treatment. Does anyone know how long it takes for general IBD treatment to start working?
Hope you are felling better Boozey take things easy.
Xxx
 
Hi Gabi! How fast treatment works depends on which treatment they put you on. If prednisone, it should start working within a few days or so. If Entocort, it should start working within a few weeks. And if they put you on something like azathioprine, it takes something like 3 months to build up in your system enough that it works.

Do you get cramps in your legs/feet? I have borderline low potassium most of the time, and particularly when I sweat/work out, my toes and feet will sometimes cramp up horribly. What are they going to do about your potassium levels?

Good luck with your appointment and scope - please keep us posted on how it all goes!
 
Bozzy hope you're doing okay!!! Keep us updated! :D

Gabi, sorry to hear you've got a partial blockage, sounds extremely painful. I sent you a pm about FCP results. As Cat said, steroids work incredibly quickly but aren't meant for long term use, normally you're then put on an immunosuppressant of some description. Steroids worked literally within days for me.

I've just been out for my first cycle and had reasonable success. Turbo was broken so decided to just take my bike out anyway. Absolutely loved it but reflux played up a bit. Hopefully I can keep it up :) It was only 2 miles but 2 miles in the right direction :)
 
lsgs, glad to hear you got out for a ride! :) My reflux plays up every single time I work out too, so I feel for you. Here are a few things I've learned about controlling reflux while exercising:

Don't eat for 1 to 2 hours before working out. For me I have to wait at least 2 hours, no food and nothing but water before a workout. If I even have so much as a sports drink, I'll get too nauseous during my workout and will have to stop.

Don't eat anything at any point in the day that may give you the burps or the vurps (vomity burps). I can't have bananas before a workout because I get terrible banana vurps when working out. I also can't have sardines before a workout - fishy burps, yuck!

The more work my abdominal muscles do, the more I reflux. If I can find a way to use my other muscles and take some of the pressure off my abdomen, I can work out longer and feel better overall.

I take a Zantac and a handful of Tums shortly before working out. Most people probably won't need that many antacids, but play around with it and see what works for you in terms of pre-medicating before a workout.

If you're really prone to reflux, don't drink too much water during a workout. I find that even plain water will sit in my stomach and start to come up my throat if I've drank too much. If you do feel stuff coming up your throat during a workout, by all means do drink water to get it to go back down again!

This is all probably a bit extreme but it's what works for my severe GERD.
 
Hi all! :) Not getting on every day but after surgery on Thursday I probably will I'll be bored! lol
I love ground turkey and use it a lot in place of ground beef. I think turkey burgers are better than regular! I also love garlic and seem to tolerate it well, cooked anyway. I don't tolerate onions though. (that's okay, i don't like them anyway!)
Hello bozzy, glad to see you're doing well after surgery! Keeping my fingers crossed that my own goes as well this Thursday.
 
Hey Cindy, sending you lots of luck for your surgery! Okay, so I don't really believe in luck, but I am very good at finding 4 leaf clovers, so that's got to be worth something, right? :p At any rate, I'm already rambling this early in my post, but I hope everything goes really well and am looking forward to hearing some good updates from you! :)

How's everyone else doing? I'm not so great. My arthritis is playing up quite a bit today (good thing I see the rheumy on Wednesday!) and my guts aren't so good either. I had a rough weekend symptom-wise and didn't do myself any favors by eating things I shouldn't have yesterday at my grandma's birthday party (the only cake was carrot cake, yuck, so I had key lime pie and ice cream instead - my grandma always provides a lot of desserts!). It's ridiculously warm and humid here today which doesn't help my guts either, so I'm kind of a mess. I'm really looking forward to Wednesday, I hope to make some progress on figuring out my arthritis, and once I get that appointment out of the way then I can call my GI and tell him I think I'm flaring and request a colonoscopy. I just hope the rheumy is good! If he's bad and I request a new referral to a different rheumy, I'll likely be in for another 4-month wait, and that obviously will not be good. I think I need to find some more 4-leaf clovers for luck... ;)
 
Wow, I just spent the last two days reading through these and to say it’s a relief to find out that I’m not stranded on my own desert island like I thought I was, is a relief words simply can’t describe ;.;

I’ve seen 3 different GP’s now…out of the three, one of them has told me;

“I’m very underweight, and show all the clinical signs of depression; (i.e. slow movements, dark bags under my eyes from lack of sleep and the most amusing; because I'm really pale -.-) so I’m simply attention seeking and need to see a councillor not waste his time.”

Yes, I am underweight; my mum weighs me regularly and I’m 93 lbs. But it’s not from lack of eating, I do eat. Just within 20–45 min’s I have to go to the bathroom…so I’m eating and never gaining the weight from it.

Then we have the other two doctors who have basically told me to eat the food I know sets my body off, then go back…

They don’t seem to get that I can’t move when I eat taboo foods. I know if I eat nuts then just lie in bed like people suggest I do, I'll end up spending up to 5 hours in the bathroom and sadly, toilets aren’t mobile…so I feel like I’m stuck.

They’re the only doctors near where I live, and they more or less refuse to even do anything till I “prove” to them that this is happening! :(

They don’t even seem to listen to me when I tell them they took my appendix out for no reason nearly 5 years ago, and the nurses were so rude to me for “wasting NHS money” and kept calling me a baby cause I couldn’t handle “a little pain”, I just wanted to go home so I said I felt fine, when in reality it hurt no less and I then had inner and outer wounds to deal with…
I regret it now, big time since last Christmas was awful, but I’m sensitive and I don’t like people who are meant to be helping me, calling me a liar or a baby.

I even told them about when I was young (8-9) my mum had to rush me to the hospital because I was literally screaming in pain from my stomach, I couldn’t control my bowels and I was throwing up everywhere from the pain…it just goes in one ear and out the other…
My worst triggers are nuts and alcohol.

So I do think I’ve had this since I was 8-9 since though I drank a lot of milk when I was young, it never bothered me, it only bothers me now if I drink a lot, but my mum monitored how much I drank when young, and I never ate raw vegetables, I had what my mum made me and it was all cooked- but with the stomach aches I did get, chances are there's some other trigger foods I have yet to “re-find” ><

Plus, my sister is deadly allergic to nuts, so they were banned from the house till I finally got permission to have them when I was about 18 as long as I kept them in my room. And alcohol is pretty self-explanatory due to legal age - and I will never touch it again-

I was literally screaming for my mum to wake up (it was around 3am since I got in quite late as it was my first night up the pub) But, all she did was get me a bucket cause I was being sick, then she sat outside the bathroom, occasionally asking if I was okay since she was too tired to take me to the hospital…understandable now, but at the time it felt like she didn’t care...

I just don’t know what to do anymore ;( But knowing I’m not alone really does give some hope since I can learn from reading pages like this and find methods on how to control the pain should I eat something I shouldn’t by mistake (Nuts = the greatest evil)
And sorry for the rant/essay, just I have so much to moan about regarding this and I never knew such an open and friendly blog for these type of problems existed till now ;w;


I really, really, really hope all of you are doing okay, and those who have had surgery are recovering well, and others also going through a rough time right now get “better” soon :)

And sorry again for the essay ;w;
 
Good Afternoon My lovelies

just have a question id like to ask everyone re food

I have someone who says they have been told they have Crohns of the colon and small bowel, but what baffles me is that they are still able to eat things like Macdonalds kfc drink fizzy drinks like coke and pepsi basically all the bad foods
but yet I have just have to smell a burger and im on loo in bloody agony
fizzy drinks is like drinking battery acid I have to eat clean and fresh and water herbal tea and cordals

is there anyone on here that can pretty much eat what they want like the foods and drinks above

or like me is an absolute no go

all the best

xxx
 
Hi Ronai, welcome to the forum and the club. You are not alone anymore! I'm glad you found us. :) It sounds to me like you need a new doctor who takes you seriously. Are you able to travel to a larger city where there are more/better doctors? These 3 doctors you mentioned are all GPs, right? Could you get a referral from one of them to a gastroenterologist (GI)? (Folks in the UK, can someone help out with better advice? I don't know the ins and outs of the NHS.)

No worries about writing a lot. You've been through a lot! I'm so sorry that no medical professional has taken you seriously yet. Don't let it get you down - you know you're ill, you know it's not "just a little pain" and you know it's not all in your head. You've got to be strong and keep fighting, and don't let them send you away without helping you at all. Believe me, I'm the meekest shyest person around, but being ill and undiagnosed has taught me to stand up for myself, educate myself, and be able to argue with my doctors for the treatment I feel I need. These doctors don't live in your body so they have no idea, and it sounds like your mom isn't really advocating for you, so you're going to have to be your own advocate. It's hard, but you can do it, and we're all here to support you. :) Hang in there! If it were me, I'd either go to a new doctor ASAP or go back to the best GP of the 3 and ask for a GI referral and some tests. If you haven't had bloodwork or stool tests, I'd start there, then ask for a colonoscopy. Good luck!

Stacey, I can't handle a lot of foods either - even when I was in remission I couldn't! Fried food, dairy, red meat, nuts & seeds, caffeine, carbonated drinks, high-fat foods, coconut, high-fiber foods - none of it does good things for me even when I'm feeling really well. We're all different, so yes, some IBD'ers can eat whatever they want. Some have a few trigger foods, and some people like you and I have a lot of triggers and have to be really careful about our diets! It sucks, I know. Have you found some good safe things you can eat? How are you getting on with treatment, did they put you on any medications?
 
Hi stacey.. I can drink and eat those things just fine. Although they are bad for you.. it is not high in fibre and fibre is generally what triggers most people.

Obviously im undiagnosed.. but I cant have, chilli, eggs or soy sauce. However.. if my tummy is fine - I can eat those things.

I think it's just different for everyone. But dont you have it in the stomach?? That might be why you are more sensitive to these things :(

Just a quick update. been in awful pain since yesterday. . None of the pain meds are helping. Had another CT scan which was fine.. and bloods were fine.. so no infection and no more surgery! ! Yay
 
Hi Cat

My diet is boring specially for a foody like I used to be

nope im on diets of chicken rice salad veggies

big big no is fried foods processed foods diary bread I have not had a fizzy drink in almost a year now I tried some of a friends cider it was only a small sip and I was so sick, I only drink herbal teas no milk at all ice tea water and dilute fruit juices I cant drink fresh juices as that just goes right through me and the pain and bloating is immense and the same list you have as well :( sucks really but at least we are eating clean :)

I got asked today when was my baby due ( im a size 8 and defiantly not pregnant ) all because my belly is so swollen and bloated not at all happy about that

I'm on
Amitriptyline 10mg 1 a day
iron supplements 3 tabs a day
Mebeverine 135 mg 20 mins before meals
Lansoprazole 15mg 20 mins before food
Diclofenac 150mg 2 times a day
I really don't want to go on to any form of steroids but the GI is happy at the mo and im ok so apart from my pants diet of really boring foods even through they really healthy and my weight is staying at a decent 9st - 9st 2lbs so between 126lbs - 128lbs much better than the 8st 8lbs 124lbs that I was 3 months ago
I have gone from eating about 300-600 cals per day to about 1000-1500 which is very good


Hope everyone is well

xxxx
 
Stacey I can eat whatever I want since having treatment. Prior to that I had an extremely limited diet.

Bozzy have you told them the pain meds aren't working?
 
Hi all, I just got back from my rheumy appt. I think it went quite well! He examined me thoroughly and did a bit of bloodwork, CRP and ESR and one other thing that I already forgot. :p I told him a brief synopsis of my history with the probable IBD and all that. He said that if it's inflammatory arthritis, then, given my symptoms & history, the arthritis is "definitely" related/being caused by the IBD. He even said that since my IBD isn't fully diagnosed, it sounds to him like the arthritis is an important piece of the diagnostic puzzle to me, and he said he can certainly give me that puzzle piece. That was awesome that he said that! I hope it's true!

He did say that the most common joints in the body that IBD affects are the sacro-iliac joints, and that's what seems to be affected for me. So this will be a major puzzle piece if it's confirmed that I have arthritis of an inflammatory nature in those specific joints.

So I like him, he seemed pretty good. He wasn't sure what to make of the x-rays and he didn't give me any diagnosis today. He felt like the images on my recent x-rays were a bit fuzzy so he would like to see things in better detail, and he's sending me to have an MRI. When he said MRI, I figured it'd be a 6 month wait like it was when I had my liver MRI. Nope, he had his staff get me into the soonest available slot - they could have gotten me in next week but my work schedule wouldn't have allowed that, so instead I'm going in the following week, on the 22nd. This means I may have my answers to my arthritis questions before my next GI appt (on Aug 7th)!! I wonder what my GI will say if I tell him I have inflammatory arthritis that's being caused by IBD. :p I feel like I'm getting so close now. I probably won't get an official IBD diagnosis even if I definitely have inflammatory arthritis, but the evidence is really starting to pile up in IBD's favor.
 
How's everyone doing today? It worries me when the thread goes a little quiet!

McCindy, I know you're having your surgery today - wishing you tons of luck, I hope they get the tumor all out and that it's not cancerous and that you go back to being your old self again after the surgery. I'll be checking your caring bridge page for updates! Thinking of you and hoping for the best!
 
To be honest I'm having a bad day, I was in pain yesterday and this morning I woke up in agony. I just gripped my pillow and forced myself to try and sleep through the pain and ended up breaking down in tears. Not to bear my heart but I feel like its a daily struggle sometimes and I always want people to see me as being strong and I always make jokes all the time to try and cover the fact I feel miserable because I don't want to ruin their illusion that I'm absolutely okay.
I had a eating disorder when I was 15 and it went on n off for a few years, it had nothing to do with weight but at the time I had a lot In my life going on. It's very hard to deal with being in pain and not want to go back to my old ways or to give up entirely.
It's been a tough day, I have no family over here and my friends don't understand, my husband works long hours so it can be really lonely.

I hate to feel like this because I guess I shouldn't moan because their are a lot of people who are worse off then I am. I don't feel sorry for myself but I think I'm just very frustrated because too some extent it's out of my control, I'm trying my best.

Anyways bla bla bla.

Hope everyone else is doing okay. I'm glad your making some progress Cat xx
 
Bluebird, hun, I'm so sorry that you're in such pain. First of all, sending you a big hug. Second of all, have you called your doctor? Please do tomorrow morning if this pain continues. And third, you ARE strong. It's okay to cry, it's okay to have bad days, it's okay to struggle. Your real strength is that you're not giving up - so please don't give up! I had an eating disorder in my teens as well and I have struggled with depression for years, so I know how hard it can get when you develop a tremendously challenging physical illness on top of that. Just keep fighting. I know you're trying your best, hun, and you just need to keep fighting. It's exhausting, and frustrating, it seems endless, and sometimes you feel like you're hitting nothing but dead ends and brick walls. I know, I've been there, I'm still there. There IS a light at the end of the tunnel. I won't lie, it may be a far distance off, and you may have to fight very hard to make it there, but this feeling is not forever. Diagnosis is possible, remission is wonderful, and there may yet be a cure within our lifetimes (read the stem cell threads & blogs if you don't believe me - they're doing some incredible stuff with stem cells).

Don't worry about not complaining because others may have it worse than you - there's always someone who is worse off, but that doesn't negate or lessen your pain or emotions. You're going through a lot and you have every right to complain, cry, vent, yell, scream, punch pillows, whatever you need to do! And we're here to listen, so just vent away all you need to. I think we've all had days like that where we don't feel strong and don't feel like fighting it anymore. And I know we're all strong, amazing warriors, because we did pick ourselves up and kept on fighting. It took me a long time to realize/accept that I *am* strong, even when I don't feel like it - I'm fighting a battle inside my own body every day, and dammit I'm a warrior! You guys all are too. :) I'm so proud of everyone here, you guys all are so strong and incredible. Even when you don't feel like it, you truly are.

I hope you can find some supportive people "in real life" to talk to because it doesn't sound like you have anyone. Have you looked into support groups through the CCFA (Crohn's & Colitis Foundation of America)? I looked on their website and found a couple local CCFA chapters in the Maryland area. You might want to contact them and see if they have local in-person support groups. Here's the info I found:
http://www.ccfa.org/chapters/#

Greater Washington D.C./Virginia Chapter
11300 Rockville Pike #1005
Rockville, MD 20852
(703) 865.6130 or (877) 807.5271
(703) 865.8873 (fax)
[email protected]

Maryland/Southern Delaware Chapter
1201 South Sharp Street #107
Baltimore, MD 21230
(443) 276.0861 or (800) 618.5583
(443) 276.0865 (fax)
[email protected]

Hang in there, hun. Brighter days are hopefully on the way very soon.
 
Bluebird, hun, I'm so sorry that you're in such pain. First of all, sending you a big hug. Second of all, have you called your doctor? Please do tomorrow morning if this pain continues. And third, you ARE strong. It's okay to cry, it's okay to have bad days, it's okay to struggle. Your real strength is that you're not giving up - so please don't give up! I had an eating disorder in my teens as well and I have struggled with depression for years, so I know how hard it can get when you develop a tremendously challenging physical illness on top of that. Just keep fighting. I know you're trying your best, hun, and you just need to keep fighting. It's exhausting, and frustrating, it seems endless, and sometimes you feel like you're hitting nothing but dead ends and brick walls. I know, I've been there, I'm still there. There IS a light at the end of the tunnel. I won't lie, it may be a far distance off, and you may have to fight very hard to make it there, but this feeling is not forever. Diagnosis is possible, remission is wonderful, and there may yet be a cure within our lifetimes (read the stem cell threads & blogs if you don't believe me - they're doing some incredible stuff with stem cells).

Don't worry about not complaining because others may have it worse than you - there's always someone who is worse off, but that doesn't negate or lessen your pain or emotions. You're going through a lot and you have every right to complain, cry, vent, yell, scream, punch pillows, whatever you need to do! And we're here to listen, so just vent away all you need to. I think we've all had days like that where we don't feel strong and don't feel like fighting it anymore. And I know we're all strong, amazing warriors, because we did pick ourselves up and kept on fighting. It took me a long time to realize/accept that I *am* strong, even when I don't feel like it - I'm fighting a battle inside my own body every day, and dammit I'm a warrior! You guys all are too. :) I'm so proud of everyone here, you guys all are so strong and incredible. Even when you don't feel like it, you truly are.

I hope you can find some supportive people "in real life" to talk to because it doesn't sound like you have anyone. Have you looked into support groups through the CCFA (Crohn's & Colitis Foundation of America)? I looked on their website and found a couple local CCFA chapters in the Maryland area. You might want to contact them and see if they have local in-person support groups. Here's the info I found:
http://www.ccfa.org/chapters/#

Greater Washington D.C./Virginia Chapter
11300 Rockville Pike #1005
Rockville, MD 20852
(703) 865.6130 or (877) 807.5271
(703) 865.8873 (fax)
[email protected]

Maryland/Southern Delaware Chapter
1201 South Sharp Street #107
Baltimore, MD 21230
(443) 276.0861 or (800) 618.5583
(443) 276.0865 (fax)
[email protected]

Hang in there, hun. Brighter days are hopefully on the way very soon.




Thank you for caring, I really appreciate the time you have taken to talk to me and it has helped me to hear that I can cry. Sometimes i just feel that people expect me to never cry or show I'm struggling.
Maybe I'm scared to not be seen as strong because then my suffering would be in vain.
I hope one day there is a cure, maybe when I'm 80 I can enjoy a cheeseburger again :)

My problem is with seeing the Dr earlier (booked in 1st of Aug) is that I have no one to take me, my husband can't get any more time off because of taken me to drivers Ed and my other appointments like my thyroid ultra scan tomorrow.
I wish I could see her tomorrow :(

I feel better after going to drivers Ed said no one ever lol but I do because even though I had pain my mind was taken off it. Then I read what you wrote and I really feel better.

Everyone on this thread is brave and a fighter like you said I just wish people knew half our pain, I wish there was more awareness.

When I pass my test and get my own car things should be easier.

Big big hugs and I truly respect your words of wisdom and appreciate it xxxxx
 
One thing I'm worried about is has anyone been pregnant with Crohns or Celiac? My husband and I are thinking of having kids maybe the end of next year and its something that really has been on my mind. If anyone has I would appriciate like maybe some advice? X
 
I don't have kids and have never been pregnant so I don't know the answer to that, Bluebird. Bozzy has a young daughter so she might be able to help, although I believe she just got home from the hospital so she's probably resting up. You may want to post your question in the Parenting/TTC (trying to conceive) part of the forum, which is here:
http://www.crohnsforum.com/forumdisplay.php?f=45

Generally speaking, what I've heard others say is that if they were in remission when they got pregnant, then they felt okay during their pregnancy (but it's common to flare up after giving birth what with the shift in hormones). If they were flaring or not feeling well prior to getting pregnant, then most have said that they had a pretty rough pregnancy with lots of sickness. Either way, I believe it's highly likely to flare up after giving birth. If you are thinking of getting pregnant, it seems to be like it's best to try to be in remission at the time of conception. So take care of yourself first and foremost, and that'll put you in the best position for yourself and for your potential baby when the time comes. :)
 
Hi everyone the weather is very hot with me here I can't stick it. I used to Love the heat :( I hope you are all doing well, as well as can be. Just wondering does anyone know can you get constipated if u have CD? No scope as of yet seeing surgeon in a week on Monday.
 
Hi Gabi! Yes, you can have constipation with Crohn's. Most have diarrhea, but not all Crohnies do. Some have constipation, some go back and forth between d and c, and I think a lucky few even have normal bowel movements (but other symptoms such as pain). There's really no such thing as a "textbook" case of Crohn's!

The heat bothers me too, particularly when it's hot and humid. It makes my guts cramp up terribly sometimes. Good luck with the surgeon, please keep us posted on how that goes!
 
That's great advice :) thanks.

I've read up about it a little, I'm 26 soon so looking at like maybe end of next year, start of the following it all depends I guess but at least over here if you have insurance you will get good health care and looked after so that's 1 of few reasons I would rather have a baby here then wait till I move home.

I will check that thread out thanks xxx
 
Hi everyone the weather is very hot with me here I can't stick it. I used to Love the heat :( I hope you are all doing well, as well as can be. Just wondering does anyone know can you get constipated if u have CD? No scope as of yet seeing surgeon in a week on Monday.

You still living in Irland? My family back in the Uk are not doing well with the heat lol but more so because now it's "too hot" even though two weeks prior they where too cold! hehe

Okay I go between like Cat said, I used to be D like pretty much 90% of the time with 10% maybe being "normal" but now I'm between D and C -___- and my Dr suspects Crohns or Celiac, so I also agree you can get it.

I think people (like my mother -___- ) and especially Drs think their is a strict check list and you must fit exactly for a diagnosis but surely a disease which Drs still don't fully understand or can cure can sometimes vary?
 
Yep bluebird it amazes me how doctors will not go on intuition or have any diagnostic skill, they seem to be there to read reports and not actually listen to what is happening to the patient.

That's why I love rheumatologists, they will listen to you and act on their gut instinct. I would not be nearly as well as I am today had it not being for a rheumatologist taking a chance on steroids for me.

Keep us up to date with the surgeon Gabi :)

I'm totally just enjoying not seeing any doctors just now. I'm reasonably well and want to enjoy it while it lasts without any medical intervention. I'm coming off steroids next week too :)
 
Yep Lsgs, I have a great example of Drs sticking to check lists: I was born with severe Epilepsy and I had seizures all the time (I have a scar on my brain I was that bad) as I grew older they became less n less common to the point I hadn't had a seizure for years (however like IBDs there is no cure) and then one day I had a seizure so I went to my dr, I explained to him I had a fit and then he turns around and no joke he says "well if you didn't urinate on yourself then you didn't have a seizure" I was stunned, like I had never lost control of my bladder but here was some Dr with his little check list basically telling me I was wrong and clearly every other Dr who had looked after me growing up lol what a idiot. I have much respect for Drs I mean they saved my life several times but some are so far up their arse that they forget that what they are dealing with are humans who have emotions and can feel pain and that maybe a lot of Drs need to be less concerned about milking insurance and more concerned about the patients.
*puts her little soap box away* haha x
 
I was diagnosed with Crohns colitis last year. How do they know I don't have Celiac's? I break out in this weird rash there bumps that hurt but they has just liquid in the could be from my vitamin deficiencies dunno but Ive noticed when I eat grains I get a stomach and gas. How do they test? When I was tested in the hospital I had a colonoscopy and a lower Barium GI with Gastroview fluid so they could see my small intestines would they have caught it then? Im a hot mess and just trying to see if there is anything else I need to worry about

Not sure I posted in right place sorry if I didn't
 
I was diagnosed with Crohns colitis last year. How do they know I don't have Celiac's? I break out in this weird rash there bumps that hurt but they has just liquid in the could be from my vitamin deficiencies dunno but Ive noticed when I eat grains I get a stomach and gas. How do they test? When I was tested in the hospital I had a colonoscopy and a lower Barium GI with Gastroview fluid so they could see my small intestines would they have caught it then? Im a hot mess and just trying to see if there is anything else I need to worry about

Not sure I posted in right place sorry if I didn't

Well I'm not completely sure but I know what caught my Drs attention and made her consider Celiac was something in my blood but I don't what it was? I know it's not really that helpful but if I where you just voice your opinion. I did to my GP and I will be doing when I see my GI I will be doing the same. It's your body and you could always just say that your worried it could be celiac and how would they go about checking if it wasn't because it would make you feel better to just check it. X
 
Hi Everyone,

Over approximately the past month or so, I have been having chronic night sweats every single night, aside from perhaps maybe three nights.

I have also had a recurrence of the central abdominal pain that I have sufferred from on and off for the past couple of decades, which came along at virtually the same time as the night sweats starting.

Whilst I have not been diagnosed with Crohns, I am pretty sure that I have had it all my life, and that my Dad and Grand-Dad have also had it.

I am a 54 year old female, who lives in New Zealand, and the other "symptoms" I have had that I believe could be associated with Crohns are:-

1. Slow physical and sexual growth as a child and teenager
2. Psoriasis (on my scalp and various parts of my body)
3. Alopecia (fine thin slow growing hair)
4. Predisposition towards getting bronchial type of infections
5. Diagnosed with ADHD when I was in my early 30's
6. Difficulty with "Keeping Fat On My Bones"
7. Anxiety Disorder
8. Fingernail Biter and Weird Growing Toenails
9. Bed-Wetter beyond the age of five

There are perhaps others, however those are the ones that have sprung to mind whilst I am writing this post.

Until today, I had no idea that the night sweats I have occasionally had during the course of my life were perhaps associated with Crohns.

It has only been as a result of having these chronic night sweats almost every single night for at least the past month, that I did some goggling, and realised that the night sweats and sudden rises in my body temperature during the daytime that I have had, might be to do with me experiencing a current Crohns flare up of intestinal inflammation.

The length of time and severity of the abdominal pain and night sweats is starting to really worry me, and if this is a Crohns flare-up, then I am keen to get it under control and into remission as soon as possible, before any further symptoms or complications occur.

I have just started taking Cal.D.Forte and Multi-Vitamins, and I would appreciate any advice you can give me, with regards to dietary foods and medications that you would suggest, so that I can discuss things properly with my GP.

Many Thanks.

From Frankie.
 
Hi Everyone,

Over approximately the past month or so, I have been having chronic night sweats every single night, aside from perhaps maybe three nights.

I have also had a recurrence of the central abdominal pain that I have sufferred from on and off for the past couple of decades, which came along at virtually the same time as the night sweats starting.

Whilst I have not been diagnosed with Crohns, I am pretty sure that I have had it all my life, and that my Dad and Grand-Dad have also had it.

I am a 54 year old female, who lives in New Zealand, and the other "symptoms" I have had that I believe could be associated with Crohns are:-

1. Slow physical and sexual growth as a child and teenager
2. Psoriasis (on my scalp and various parts of my body)
3. Alopecia (fine thin slow growing hair)
4. Predisposition towards getting bronchial type of infections
5. Diagnosed with ADHD when I was in my early 30's
6. Difficulty with "Keeping Fat On My Bones"
7. Anxiety Disorder
8. Fingernail Biter and Weird Growing Toenails
9. Bed-Wetter beyond the age of five

There are perhaps others, however those are the ones that have sprung to mind whilst I am writing this post.

Until today, I had no idea that the night sweats I have occasionally had during the course of my life were perhaps associated with Crohns.

It has only been as a result of having these chronic night sweats almost every single night for at least the past month, that I did some goggling, and realised that the night sweats and sudden rises in my body temperature during the daytime that I have had, might be to do with me experiencing a current Crohns flare up of intestinal inflammation.

The length of time and severity of the abdominal pain and night sweats is starting to really worry me, and if this is a Crohns flare-up, then I am keen to get it under control and into remission as soon as possible, before any further symptoms or complications occur.

I have just started taking Cal.D.Forte and Multi-Vitamins, and I would appreciate any advice you can give me, with regards to dietary foods and medications that you would suggest, so that I can discuss things properly with my GP.

Many Thanks.

From Frankie.

Hi Frank, sorry to hear you're not feeling well. The first place you'll probably want to start are some blood tests. Sometimes (but not all the time) ESR and CRP which are markers of inflammation in the blood are raised with an inflammatory condition like crohn's. These are non specific though, and don't say definitely you have crohn's, just that there's inflammation.

You might want to get a faecal calprotectin stool test. If it's high it's a pretty reliable marker there is inflammation somewhere in the GI tract. It's more reliable than blood tests because it measures inflammation directly in the gut whereas blood tests measure it anywhere.

If you get a referral to a GI they'll probably want to first scope you upper and lower if they're investigating you for crohn's. If that's normal they might move onto small intestine investigations like a pillcam or MRI.

That said, there are loads of causes of night sweats so try not to get too bogged down on it being crohn's and keep open minded.

I am no expert in diet and meds for crohn's. When I'm feeling ill I just keep things bland and eat whatever I feel like to make sure I get calories into me.
 
Hi Ronai, welcome to the forum and the club. You are not alone anymore! I'm glad you found us. :) It sounds to me like you need a new doctor who takes you seriously. Are you able to travel to a larger city where there are more/better doctors? These 3 doctors you mentioned are all GPs, right? Could you get a referral from one of them to a gastroenterologist (GI)? (Folks in the UK, can someone help out with better advice? I don't know the ins and outs of the NHS.)

No worries about writing a lot. You've been through a lot! I'm so sorry that no medical professional has taken you seriously yet. Don't let it get you down - you know you're ill, you know it's not "just a little pain" and you know it's not all in your head. You've got to be strong and keep fighting, and don't let them send you away without helping you at all. Believe me, I'm the meekest shyest person around, but being ill and undiagnosed has taught me to stand up for myself, educate myself, and be able to argue with my doctors for the treatment I feel I need. These doctors don't live in your body so they have no idea, and it sounds like your mom isn't really advocating for you, so you're going to have to be your own advocate. It's hard, but you can do it, and we're all here to support you. :) Hang in there! If it were me, I'd either go to a new doctor ASAP or go back to the best GP of the 3 and ask for a GI referral and some tests. If you haven't had bloodwork or stool tests, I'd start there, then ask for a colonoscopy. Good luck!


Sorry it took so long to get back to you, this heat has not been fun :( But thanks for the reply =)

Sadly the doctors I did see all treated my sister through various stages of her life; and since she was born with so much wrong with her- all they see is her little sister trying to get some attention.
But thankfully, I was able to convince my mother to make the appointment for me this time and since she knows 90% of the people at the Doctors surgery, she was able to get me in with a different doctor, apparently she didn't "realise" what doctors I said I had seen...more proof that she doesn't listen to me, but one of them, even she said she doesn't like as he tried to tell my mother my sister had a "cold" when she has severe asthma, and she was just a "depressed mother without a supporting man in her life looking for attention" I kind of wonder if its him wanting attention since all he seems to do is bring it up -.-;


But anyway, I went to see this new doctor, and she actually listened to me ;w; and from what I've told her she kept saying it's most like CD, but she also said it could be; UC or IBD, so she gave me some tablets to help the acid reflux and try and settle my stomach a bit, and I've also got a blood test scheduled for Friday, so hopefully this will get the ball rolling as I need to get this sorted before I go back to college >< Praying these tablets help, even if just a little bit =(


And I get you, I need to find a backbone with things like this, but I'm shy even around my own family ;w;
I just don't get some doctors...they're obviously aware I'm shy beyond belief, I can't even look people in the eye, yet they still try to tell me I'm lying when this problem is incredibly personal? Oo Why would I open myself to something like that unless it was really happening? -w-; I'd much rather be out with my friends than stuck barely being able to walk, sleeping half the day away and spending the rest of it in pain...

But thank you though Cat, it's nice to know there is a place where I can have a good moan about this xD It's just so frustrating and I'm way to embarrassed to tell my real life friends about it :(
 
Ronai, that sounds a lot like me - I have a lot of trouble making eye contact too. I have a lot of social awkwardness and various other issues which make me suspect I might have Asperger's. I fit a lot of the criteria although I've never been tested for it. Do you have Asperger's or have you ever been tested for it? I know that there's a strong correlation between being on the Autism spectrum & having bowel issues (I know the definition of Asperger's was changed recently so it's no longer considered to be on the Autism spectrum, but even so, Aspies tend to have bowel issues just like Autistics do). I have a suspicion that if I have Asperger's, then that and my bowel issues are somehow linked.

I'm glad you found a doctor who actually listened, that's great! Do you know what blood tests they'll be doing? Keep in mind that bloodwork is not always the most accurate, so if your blood tests come back "normal", don't let that deter you from continuing to fight for a diagnosis. I would ask this new GP for a referral to a GI (gastroenterologist) as well, as they can do further testing such as colonoscopy, scans (CT or MRI), etc.

Hi Frankie, welcome to the forum. I have a few symptoms in common with you - my hair is also very thin & fine, and it falls out sometimes (particularly when I take certain medications). I was a nail biter for years, finally broke myself of the habit but I still feel compelled to pick at the skin around my nails (I think that's an OCD thing?). And I was a bedwetter up until age 12 or so - that seems to be a family trait in my case, as my dad & brother were bedwetters too (neither of them have bowel issues though). I don't know if any of that stuff is linked to my bowel issues or not. I will say, night sweats are a sign of infection or inflammation, so I would wager that's related to your gut woes. I get awful night sweats in a flare-up - like soaking through my pajamas and sheets, if I know night sweats are probable then I sleep on a towel - it's awful!

When you see your GP, I would ask for some bloodwork to start with, and a referral to a GI. And as lsgs said, fecal calprotectin and other stool tests would be good too (they can rule out bacterial infection and parasites with stool samples). For bloodwork, I would ask for them to do a CBC (complete blood count), CRP and ESR (inflammation markers in the blood), and a complete check of your vitamin levels (vitamins such as B12, iron, folate, and D are often low in people with IBD). That would be a good place to start. Good luck!

How's everyone else doing today? I'm still feeling meh, not well but not horrible either. Just kinda hanging in there. Getting nervous for my hip MRI which is one week from today. I had an MRI before, so I know what to expect and I'm not claustrophobic or anything. More nervous about the results than anything else. The rheumy just wasn't quite sure what to make of the x-rays, and I'm afraid that he'll say the MRI results are fine and I don't have arthritis. Which would be good of course, but then I'd be back to square one as to what is causing my joint pain. So I'm just trying to concentrate on the funner aspects of the MRI experience - I'm picking out which sweatpants and fuzzy socks to wear and what music I want to listen to during the test, etc. :p Have to find a silver lining in every situation, right? :)
 
Cat I have never been allowed to listen to my own music! I've only once been played classical music through the headphones. The rest of the time - nothing! So annoying! I even made a CD to take once and never got to listen to it.
 
lsgs, I hadn't even realized at my first MRI that I would be able to listen to a CD, so I didn't bring one of my own. But they let me listen to one of theirs (apparently they keep a small CD library there) so I listened to Alicia Keys and that was fine. This time around, I know more of what to expect and made myself a mix CD with a lot of my favorite music (mostly J-pop and K-pop because I'm quirkly like that, ha ha). I also recall being really cold at my last MRI - they keep the room really cold and blow cold air through the machine - so I'm going to dress as warmly as I can and maybe bring a blanket from home too. I feel better about things if I can be well-prepared, so that's the plan this time around. :) Music and warmth!
 
Dear lsgs and Cat,

Firstly, many thanks for writing such prompt informative helpful replies in response to my post :hug:

I am going to print off all of the info that you have given me, regarding the types of investigative blood work that my Family Doctor can organise for me to have, and take it with me to my doctors appointment.

Last night I woke up at least twice as a result of being cold from my tee-shirt and bed linen being drenched in my own perspiration.

I have had an enormous amount of psychological stress throughout the past six months or so, which I think has compromised my immune system, as has been the situation on so many occasions throughout my lifetime, and caused the pain in my stomach area to re-occur.

Is inflammation of the intestine caused by a bacterial infection of some kind, which then leads to having an almost permanent low-grade fever, and will I need a course of anti-biotics to clear up any infection ???

The reason I am asking this, is becos these night sweats are not going away by themselves, in spite of the fact that I have been eating as much good plain decent wholesome food.

I get the feeling that my body has gone past the point of no return, as far as being able to heal itself, and that I am going to require some modern day scientific medicinal help, to get rid of whatever is causing these horrendous night sweats that I wouldnt wish upon anybody, not even on my older sister, who is a complete _ _ _ _ !!! (please feel free to fill in the spaces with whatever letters of the alphabet appeal to you ... lol).

Is it true that every time a person has a Crohns flare up, that it leaves scarring on the intestinal walls, which as you get older, can lead to further complications ??? My Grand-Dad died due to complications from having a twisted bowel, and he had endured a lot of abdominal pain for years, before they finally operated on him, only to find that he had gangrene, and it was too late to save his life.

I know that my night sweats are not due to menopause, becos I went through that a few years ago, and at this point in time I dont want to even think about the possibility that my night sweats are a symptom of cancer, which is why I am focusing on the possibility of the night sweats being the worst symptom I have ever experienced with my "Un-diagnosed Crohns Disease".

About a week or so ago, I began taking Col.D.Forte Tabs and Multi-Vitamins again, becos I figured that the reason my hair had thinned out so much over the past couple of months, was perhaps due to gut mal-absorption.

I am hoping that by ingesting these supplements, that it will help to boost my immune system, and put my body back on the road to recovery.

A few years ago, following a strep throat infection, I suffered a huge psoriasis attack, which covered my entire body within days, and it was as a result of that happening, that I did some goggling, and I decided to take Vitamin D supplements, to see if that would bring my psoriasis under control.

Within three weeks of taking 2000IU per day, my psoriasis was completely gone, which was fantastic.

But there was also another really great positive side-effect that also occurred as a result of taking the Vitamin D tablets, that I hadnt realised until a few weeks ago, which was that after taking the Vitamin D supplements for several months, the hair on my scalp began growing faster and thicker than ever before in my entire life.

Again, many thanks for your terrific advice and information, and for making me feel so accepted and normal in here, becos I have tried talking to my family about all of my weird symptoms over the past few years, and have not received a very kindly response, and even got told that I was just being a hypochondriac.

Sadly, when it comes to many Family members, "ya cant live with 'em ... but ya not allowed to shoot 'em either" !!!

I am tired of suffering in silence, like I have done my entire life, and I am worried that if this is a Crohns flare up, and I dont get it under control and into remission, that my life expectancy and quality are going to be jeopardised in the long term.

My Doctor just phoned me, and I gave him the names of all of the blood tests that you wrote in your posts, and he is leaving a Blood Test form at the counter for me to pick up and get done tomorrow, plus he has been kind enough to make time in his schedule on Friday to see me, and he said that if the blood tests indicate that there is inflammation of my intestine, then he will probably be giving me an urgent referral to the hospital, becos of the complications that can occur as a result of inflammation of the bowel.

I feel a sense of relief, becos I am at least doing something pro-active about my stomach pain and night sweats, although I am not looking forward to waking up in a giant puddle of sweat over the next few nights until I see him on Friday.

Its 6.34pm on Tuesday 16th July here in Enzed, and the blood tests will be done tomorrow (Wednesday) afternoon, which means that the results should all be back by Thursday afternoon.

Will let you know what the outcome is guys and gals.

Bye for now :pillowfight:

From Frankie.

Pee-Eff:- Keep all of your fingers and toes and eyes and legs crossed that the night sweats havent been a cancer symptom ... becos I am not psychologically prepared at the present point in time for having to deal with that being the definitive diagnosis of my symptoms !!!
 
Frankie, stress can definitely cause/worsen symptoms, so I'm not surprised that you're doing worse lately with the significant stress you described. I hope the stressful situation alleviates soon. Are you able to exercise at all, even something like walking or yoga? I find that exercise makes me feel far less stressed.

As for antibiotics, they seem to help some people with Crohn's. Doctors don't yet know the exact cause of Crohn's so it's complicated. There seems to be a genetic component, as well as environmental/dietary, and bacteria may play a role as well. I read a study once that said that people with IBD (Crohn's or colitis) tend to have much different gut bacteria than people without IBD. Is it the bacteria causing the IBD, or did the IBD dramatically change the gut flora? I don't know.

Yes, generally speaking, the longer the inflammation goes untreated, the more likely you are to develop narrowing, scar tissue, strictures, etc. The quicker you can get diagnosed and treated, generally speaking, the more likely it is that you can avoid surgery and have an easier time getting into remission, etc. So I'm glad you're here looking for information, and I hope it helps you on the road to diagnosis. :)

I wish you lots of luck with the blood tests. Keep in mind that bloodwork isn't 100% accurate. Two of the things I mentioned, CRP and ESR (the inflammation markers), can in some cases be normal even when there is a lot of inflammation going on. I read that about 10% of the IBD population will not have raised CRP or ESR, and I am apparently part of that 10%. I seem to have normal CRP and ESR even when I'm in a terrible flare - I have had raised CRP on a couple ocassions, when my arthritis was acting up, but it's never gone up when my guts are acting up. Anyway, just keep in mind that if the blood work is normal, it does not necessarily mean that everything's fine, so if it does come back normal, keep fighting for more tests and answers.

As for the cancer worries, I think we all have those worries. When I had my colonoscopy, my GI said to me beforehand, "It would be very rare for someone your age to have colon cancer." But just him mentioning the "c" word was enough to worry me - I didn't even consider cancer until he said that! And when they found "nodules" on my liver, my GI said, "Don't worry, it's probably not cancer. We'll do an MRI to check for sure." And then they made me wait 6 months for the MRI!! It wasn't cancer fortunately, it's these benign tumor thingies (they're growing but won't spread, may cause symptoms but won't kill me is what I was told). I wouldn't worry about cancer if doctors would just shut up about it and not even mention that as a possibility! :p

How's everyone else doing today? I'm not too bad, guts are a bit grumpy but not bad compared to what they've been like lately. I've been eating okay and still going to the gym as often as I can (Bozzy knows how stubborn I am about getting my exercise, ha ha!). Oh, and for those not in the loop, I saw McCindy posted an update on her caringbridge page. It sounds like her surgery was very successful, they removed 99% of her tumor. She's got some weakness and is having a bit of trouble with swallowing and with words, but the update made it sound like that's temporary, so that's very good news. The last update she posted, which I think was from Saturday or Sunday, said she'll probably be going home soon, so she may be home already. So yay, Cindy is on the mend! :D That's excellent.
 
Hello. New here. I'm UK based, female, in my early thirties. I was 'diagnosed' with IBS aged 17. This was reviewed about 7 years ago as I experienced a big downturn in health, running to the toilet constantly. At this point I was told I had raised faecal calprotectin levels, so had barium meal X-ray of small bowel and colonoscopy to try and detect inflammation. They were inconclusive, so we were back to treatment and management of IBS. I learned to live with the symptoms, got on with my life, and prided myself on never having a day off work throughout. My career really took off and I was doing really well. I never nagged on the raised calprotectin.

Big mistake. Last October I came down with what I thought was norovirus. But it never went away. Since then I have had almost constant diahorrea and agonising stomach cramps day and night. My calprotectin was measured again and came back as 250. It was at this point that I found out my levels were over 300 7 years ago. I gave in and took sick leave in May and haven't been back to work since. Yet again, colonoscopy and endoscopy haven't shown anything and a small bowel MRI has revealed nothing. I'm now waiting for a decision on what the docs want to do next.

I have lost over a stone in the past year, and I was borderline underweight anyway. I'm so tired I can barely do anything. I've had no medication bar anti-spasmodics, anti-depressants and pain killers as my family doctor is still working on the IBS diagnosis. Needless to say, they haven't worked.

Has anyone any advice on what I should ask the specialist when I see him next week? Should I press for any more tests? Or should I request steroids to treat the inflammation that I believe is there, even if they can't find it? I'd appreciate any help. I just want my life back!

Thank you :)
 
Hi Ceej, welcome to the forum. As we sometimes say, I'm sorry you had to seek us out, but I'm glad you found us. :) Your story sounds a lot like mine, I felt like I got a stomach virus in Oct 2009 that never really went away. And my scopes and scans were all normal too. And I lost weight unintentionally as well, even though I would desperately scarf as many calories as I could when I was feeling well enough to eat - even with that effort, I lost about 20 lbs in a year. So our stories are quite similar!

You've mentioned a couple possibilities and I think both have merit - asking for more tests or trying a steroid trial. Personally, more tests only gave me more "normal" results, although there are more tests for you to try, so it may be worth looking into. Have you had the pill cam done yet? It's also known as capsule endoscopy. That's the one where you swallow a small pill-shaped camera and it takes tens of thousands of photos throughout your digestive tract. The big benefit of pill cam is that it sees the entirety of the small intestine, whereas the colonoscopy & upper endoscopy can only see the very beginning & very end of the small intestine. The pill cam can't take biopsies, and if you have a slow-emptying stomach then it may run out of batteries before it sees everything, and there's something like a .01% chance that it'll get stuck (if you're worried about that, you can do a dummy capsule beforehand, which will dissolve if it gets stuck). That's the test I'd ask for if I were in your shoes.

The other option, a steroid trial, was the better option in my experience. Prednisone (I think it's called prednisolone in the UK) is the one I asked to try. It only works on inflammation, so in other words, it wouldn't work on IBS. Meaning that if it works for you, any doctor worth his salt will rule out IBS and will concentrate on other possibilities (IBD such as Crohn's/colitis, but also possibly things such as Lupus or Addison's as those can also cause gastro-type symptoms and will respond to prednisone). In my case, I'm still undiagnosed, but I responded really well to pred, so my doctors stopped focusing on IBS. My doctor then ruled out Lupus and Addison's and a few other things, so basically I now have presumed IBD based on the meds I respond to, my symptoms, and the things we've ruled out. It's not a proper diagnosis, but I'm getting proper treatment and did really well for about 2 years (I'm flaring up again within the past couple months, so it might be time for another colonoscopy for me).

Keep in mind of course that that's just my experience and yours may vary. But given that our stories are similar, I felt that sharing my experience might be worthwhile to you. I wish you luck with whichever route you pursue! Please keep us posted on what you decide and how it works out for you.
 
I'm so glad that this group exist!

I have been a sickly person my whole life and my parents and doctors have just written off as just a poor immune system :( I have been suffering for so long. I have only been hospitalized once for my symptoms when I was 4 yrs. old. I was admitted for a fever of 105, vomiting, diarrhea. My records state it was just "bad" inflammation or infection of my colon and small intestine. Not I think it may have been more.

Over the years I had repeated trips to the doctor for crazy fevers, nausea, sore throats, stomach pain, and well the list goes on. I didn't always feel sick, but the symptoms always came back. It didn't really get bad again until my sophomore and junior year of high school. I was missing school so much because I woke up with intense headaches and stomach pains. I couldn't eat because it just hurt too much. I ended up losing weight pretty fast, I lost 30 pounds in 2 months! Most just thought it was because I was pretty active with color guard “it’s normal” (if that was the case why didn't I lose that much weight that fast the previous year?) I kept going to the doctor, but now I had a new symptom of heart palpitations and chest pain. I was so scared and all they could tell me that it was just a response to getting older and that it would go away. After all the tests and “normal “results, they told me nothing was wrong with me and that I was simply just making up. When I started to notice my symptoms lighten up a bit, I just gave up. I would still have really bad “flairs” and would stay home in bed in the dark and just coped with the pain.


I coped pretty well until the end of college and my symptoms went crazy. Which brings me to now. I have been going to the doctor none stop. The stomach pain is too much to cope with now, I have at least two headaches a day, I’m so tired and week all the time. I have sharp stabbing pain in my hands and feet, joint pain, an itchy rash on my knees and elbows (that I’ve had once before in hs), and sharp pain on my lower right side. One minute I’m suffering from bad diarrhea and the next in constipation. I lost 20 pounds in 1 ½ months, but then I gained ten back. Since I was able to put some weight back on my doctor tells me it’s just IBS and that it’s just stress. He put me on IBS drugs that ARE NOT WORKING. I still have to go to the bathroom all the time and I’m in so much pain! I also have the worst gas in the world which is so embracing, so I don’t make it a point to go out much. I don’t know what to do. He said maybe it’s my lactose intolerance…. But I don’t eat any dairy at all, its soy all the way. He also told me to try eating smaller healthier meals more fiber, but it seems to only be making it worse. I eat pretty healthy even though I’m considered to be over weight (for goodness sake I work at an organic market and predominantly a vegetarian. I just think in may be some form of IBD I think my symptoms fit crohn’s the most. I guess he’s tired of seeing my face all the time so I have an appointment to talk about more test he wants to do on Thursday . Ugggg I just want to be healthy and have energy again without all the pain.
I don’t know any more maybe it is IBS, but if so why haven’t the drugs he’s given me worked. What do you guys think?
 
Jaz: To be honest I would go for a second opinion and see what that Dr says, maybe they can run some tests and maybe spot something? If your young like me I know it can be harder to catch which is fab considering its hard enough in the first place.
Sorry I couldn't be more helpful x

Just keep holding on and keep fighting :)

I also live in MD btw :) so hello neighbor!


Cat: in regards to asking how everyone is, I've had a flare up the last couple of days and Sunday was pretty bad but some of that was my own fault, but today I woke up and for once didn't feel like I was so exhausted I wanted to collapse :) and I only got some pain today. I've been doing well in drivers Ed class and scoring 100% on 6 tests so far (another 2 to go) then will be taking my driving test which is a big thing for someone with Epilepsy who Drs thought wouldn't finish school never mind drive!!! :)
Looking forward to seeing my GI dr though.

I'm boiling at the moment even with air con and the fan on lol but tis all good :)


I'm glad Cindy is doing well too :) fantastic news and hope your okay today Cat xxx
 
Hi Jazji87, welcome to the forum. I agree with Bluebird, it sounds like your current doctor is not very helpful and it may be time to look for a second opinion from another doctor. What tests have you had done so far? Have you had a colonoscopy? I'm hoping you've at least had some bloodwork done - did they find anything abnormal in your bloodwork? As for your symptoms, you do not lose weight unintentionally with IBS. If you have had other symptoms such as blood in the stool, fevers/chills, or what they call "nocturnal diarrhea" (waking up in the night & having to go to the bathroom), those are also not symptoms of IBS. So definitely keep fighting for answers, it sounds like you already know it's more than "just IBS" and you need to find a doctor who believes that too. Good luck!

Bluebird, I'm so glad to hear you're doing somewhat better and also glad to hear you're on the way to getting your drivers license! :D I love driving, I love cranking my music and just getting far away from everything for a bit. Although my car needs repairs right now, the muffler pretty much died so my car is really loud and kind of embarassing to drive lately! I'm getting a new muffler in a couple days though. It's ridiculously hot & humid here too - does the heat bother your guts? It makes my guts cramp up badly so I'm trying to stay in the air conditioning as much as I can. My arthritis is really acting up today too, although hopefully that's a good thing in a way and will mean that something will show up on my MRI next week.

As for the brain surgery girls - I haven't heard any further updates from Cindy yet so I'm not sure if she's gone home or not or how she's doing. From the sounds of it, Bozzy seems to be watching a lot of bad daytime TV, ha ha, and taking lots of naps as well, so she's on the mend. :)

How's everybody else doing today? Stay cool for everyone else who is in this crazy heat wave! Unless the heat helps your symptoms, in which case stay hydrated and don't get sunburned. :p
 
Hi Jazji87, welcome to the forum. I agree with Bluebird, it sounds like your current doctor is not very helpful and it may be time to look for a second opinion from another doctor. What tests have you had done so far? Have you had a colonoscopy? I'm hoping you've at least had some bloodwork done - did they find anything abnormal in your bloodwork? As for your symptoms, you do not lose weight unintentionally with IBS. If you have had other symptoms such as blood in the stool, fevers/chills, or what they call "nocturnal diarrhea" (waking up in the night & having to go to the bathroom), those are also not symptoms of IBS. So definitely keep fighting for answers, it sounds like you already know it's more than "just IBS" and you need to find a doctor who believes that too. Good luck!

Bluebird, I'm so glad to hear you're doing somewhat better and also glad to hear you're on the way to getting your drivers license! :D I love driving, I love cranking my music and just getting far away from everything for a bit. Although my car needs repairs right now, the muffler pretty much died so my car is really loud and kind of embarassing to drive lately! I'm getting a new muffler in a couple days though. It's ridiculously hot & humid here too - does the heat bother your guts? It makes my guts cramp up badly so I'm trying to stay in the air conditioning as much as I can. My arthritis is really acting up today too, although hopefully that's a good thing in a way and will mean that something will show up on my MRI next week.

As for the brain surgery girls - I haven't heard any further updates from Cindy yet so I'm not sure if she's gone home or not or how she's doing. From the sounds of it, Bozzy seems to be watching a lot of bad daytime TV, ha ha, and taking lots of naps as well, so she's on the mend. :)

How's everybody else doing today? Stay cool for everyone else who is in this crazy heat wave! Unless the heat helps your symptoms, in which case stay hydrated and don't get sunburned. :p


Sometimes it does bother me, I've had bad pain today and running to the loo gah.

I hope your not in too much pain? Does heat help with your arthritis?

I'm so annoyed right now lol kinda unrelated but I have this girl who used to be my best friend but long story cut short she is my enemy now and she's the kinda person who attention seeks on fb and what annoys me is that I find people who don't deserve time get it off others and those who do are kinda left? I dunno but it's just makes me mad lol

Do you find that good people are ignored? Like thank god I have you guys!

Lol giggled at your car comment though Cat!

3 more classes left in drivers Ed and I'm done! No more sitting in pain for 3 hours! Xx
 
Bluebird, heat does seem to help my arthritis, yes. If it's just my hip that's aching, then I can kind of sit on my heating pad :p and that helps. I've tried ice on my bad joints but I hate feeling all cold and numb, I much prefer heat. My joint pain was bad last night in multiple joints (knees & hips) so I tried sitting in a hot bath (had to crank the air conditioning first) and that helped a little bit, but not much. The heating pad does more for me than a bath does.

Oh, I can so relate to your comment about your ex-friend. I had a "friend" a couple years ago who said she had Crohn's. She was all about the drama and was a total attention-seeker too, although she seemed like a good, supportive friend otherwise. Eventually though I came to find out that she was a pathological liar and that she actually made up having Crohn's! She wasn't sick at all, it was all lies. Needless to say, that was the end of our friendship, and I cut off all contact and blocked her from facebook. Lately she's been trying dilligently to suck me back into her drama but I'm just not having it. So anyway, I totally understand your complaints about your former friend. My advice is to just cut off all contact, block her from FB etc. My former friend actually tries to send me gifts through the mail - I return them all to sender, I do not open them. I don't acknowledge her at all anymore and I think that must drive her nuts, but it's what I have to do to keep my sanity.

So yeah, I have a few other friends but they mostly live far away (my childhood best friend lives 2 hours away, another friend lives 1.5 hours away, yet another friend lives in Phoenix which is like the opposite end of the country, etc!). And none of my real life friends have IBD or any chronic illnesses, and they tend to just look confused or change the subject when I try to talk about my health, so I'm very glad to have you guys too. :) I don't know what I'd do without the forum and you guys! You are all the best, I hope you all know that.
 
I think my body has caught up and realised I'm off steroids. Pain back a little and need to sleep all the time, absolutely no energy. Joints are on FIRE. Yuck!
 
Aw, sorry to hear that, lsgs. Have you been riding your bike at all lately? I ask because I rode the stationary bike in the gym for 30 mins yesterday, but even that short of a ride seemed to cause my leg joints to all get angry - that's what caused my joint pain to act up yesterday evening. It's odd because I used to be able to ride for an hour with minimal/no pain - now I can't even ride for 30 mins without paying for it? Hmph, frustrating. I'm sorry to hear your joints are bad too and I hope they calm down soon!
 
I've been reading, but not always responding because I often read on my Kindle, which makes responding hard.

I had a rheumatology appointment last Friday, and this rheum is AWESOME! She was extremely thorough, and while she is not sure what my diagnosis is/should be, she seems committed to helping me improve. Bluebird, if you are looking for a rheum, let me know because she is in DC.

A few comments in response to other posts:

*cleuger-- It's certainly possible to have celiac AND Crohn's colitis, but I don't think your doctor would mistake celiac for colitis (if he/she did a colonoscopy), as celiac causes inflammation of the small intestine, whereas colitis is literally inflammation of the colon. Have you had an upper endoscopy?

*perfectly.frank-- It sounds like you have a lot going on! I'm sorry. I can definitely relate to the night sweats. I have soaking sweats, requiring night clothes changes, 2-5 times per night. I sleep on towels. This has been going on for 5 years. I am not well, but I'm also not dead so I hope that encourages you. ;) Seriously, night sweats CAN be a sign of lymphoma or TB, but those are pretty easy to rule out with a chest x-ray and blood tests. Most likely, the night sweats are from a more benign cause. Are you on medications? A lot of medications can cause night sweats. Definitely get this checked out, but try not to worry too much. I know that the night sweats are miserable though. Unfortunately, we have not been able to pinpoint the cause of mine or get them to go away.

*ceej-- I can also relate to feeling like you have a stomach virus that never went away. In the spring of 2008, I thought I had a stomach bug or food poisoning....and never got better. I wonder how many of us had an abrupt start like that? I wonder how many of us DID have a bug that somehow triggered a genetic vulnerability towards an intestinal disease? On the other hand, my cousin, who is now diagnosed with Crohn's, went to the ER with what he thought was food poisoning. The doctors did blood and stool tests, and he was free from virus and bacteria; it was just Crohn's.

*jazij87-- I'm sorry you're having such a rough time. It sounds like you have more than IBS and food intolerances going on, but I wanted to mention that I do really poorly with soy. You might want to try eliminating soy too (hard, I know) and just see if you feel any better. With all of your other symptoms, I doubt that's the only issue, but maybe it would help even a little.
 
hi all
I am in the middle of being diagnosed .its been strange to say the least .let me explain .I have spinal problems and have had 3 major operations over the last 17 years .bowel wise no problems even with large amounts of narcotics for the spinal pain .but then I needed a fusion on my spine and they had to go it through my abdominal area {ALIF} ever since my appetite has changed and going to the loo has been hit and miss [before this op I was once every other day ..no pain no blood ./just normal for me } but after the last op things changed I did not realises how much until this easter when I ended up in hospital ...3 times and 3 times they said CONSTIPATION !! I knew It was not constipation and I am married to a nurse I also have a decent grasp of medical terminology and being an expert patient regarding spines I have learnt a lot .so there I am in agony and all I got was IV morphine that got rid of the pain for about an hour and after Xray and blood [raised CRP] I was sent home 3 TIMES . I managed to get one of the doctors at my surgery to refer me to a consultant and I have had CTVC /MRI with oral and IV contrast all inconclusive the last test was a white blood cell count under a gamma camera .I am still waiting for the results ..so far it looks like crohn's but I believe that's no picnic .I am 47 male a married and worried !!
 
Hi peeps!
I see we have lots of new members! Sorry I havent been around to offer any help/support :( but welcome to the clan! And good luck with your investigations :)

Straker - glad to see you pushed for a referral! Even though you had to go through your spinal doctors. Bowels are so sensitive.. particularly when it comes to surgery.. so it makes sense that your symptoms began then. I really hope it isnt IBD.. but there are many tests they can do to check. Are they considering doing a colonoscopy? Also.. do you have any family history of any bowel issues?

Cat - have you had any results from your rheumy yet??

As for me.. im a bit hit and miss with symptoms. Doing much better since changing my pain meds though..
Hopefully I can be online more often soon! Xx

Ps: since my surgery.. I now have really really bad hip pain! (Probably due to being in bed a lot) Thankfully I see my rheumy on the 26th..
 
Bozzy, I got my blood test results back - CRP and ESR were normal. He did a 3rd blood test but I don't know what it was and I didn't see any results for that, so no idea there. The MRI of my hips is on Monday, so coming up pretty soon! Hopefully that'll yield a worthwhile result. I'm sorry to hear you have hip pain! Is it one hip or both? My arthritis started out on the right and is now apparently in both hips, and although they both look really similar on x-ray, the right hip gives me far more pain than the left. Good luck with your rheumy appointment! And glad to hear you're doing better, that's wonderful. :)

Chickadee, no worries - I hate typing on my Kindle so I totally understand that! It's such a pain and the autocorrect is super annoying too. I can barely type one sentence on facebook on my Kindle, I wouldn't even try typing a post on here from it. (It is super convenient to bring the Kindle into the bathroom though! Or is that just me? :p )

Hi Straker, welcome to the club. How high was your CRP? As you probably already know, CRP is a general measurement of inflammation in the body - so it could have been your digestive tract raising your CRP, or your spinal issues or something else. Have you had any other tests besides the ones you've mentioned? I didn't see colonoscopy mentioned in your post - that and pill cam would be good ones to go for. I'm sorry to hear the ER didn't take you seriously. The next time you feel like you need to go to the ER, is there a different one you could go to? Not all hospitals are created equally. I'm surprised they gave you morphine if they thought you were constipated, as pain meds tend to have a constipating effect. You mentioned your wife is a nurse - what is her opinion on all this? Does she think it's potentially IBD (Crohn's/colitis)?
 
Thank you Cat-a-Tonic and BlueBidInlove for the advice, and Blue Bird I guess we are Maryland neighbors lol. I have been so unsure on what I should do from here. I have been in so much discomfort lately and well miserable. I had to be sent home early from work today because I was getting really dizzy, week and constantly thought I was going to hurl…. Lack of a better word. I have my appointment with the doc. tomorrow, and depending on his attitude, I’ll decide if I need to go to someone else for a second opinion. So far he has sent me in for an abdominal and pelvic ultra sound, where he found a cyst in my ovaries the size of a golf ball (he tried to tell me that that was the reason for my pain, but that doesn’t explain all my other symptoms). He also ordered a full blood work up where he found a vitamin deficiency, and my iron was low (not dramatically low according to him), the rest I can’t remember. I hope this visit he wants to set me up for a colonoscopy to have a better look at what may be going on, due to the fact that I have had a series of low grade fevers and occasional bloody stools to say the least.
 
Hi jazij87 - the low iron would definitely account for your dizziness.. and you are likely to have this deficiency because of the blood in your stools.. im glad he is sending you for a colonoscopy! Make sure they take lots of biopsies! I have lots of low grade fevers too.. let us know how you get on :)

Cat - my pain is currently in both hips.. ugh. But sometimes feel it down my whole leg down to the ankle too :( good luck with your mri! Did you ask him about checking your B12? Xx
 
I am struggling to find my way around the forum .when I get a email saying theres been a reply its not easy to link to it any advice ?? CRP was 37 .today I am in agony .I have to get on all 4s and lean forward on the floor to get some pressure off my guts and back .the pain is killing me .I have never felt so low in my life .and I have been in pain for many years .what can I do to get rid of this crippling pain in my gut RIF side at the moment and since easter I have not been out of the house {apart from hospital /doctors} I am so weak and feel so ill ..I am still waiting for my diagnosis
 

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