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It's not all in your head and it sure doesn't sound like "just IBS" either. Don't let them get into your head like that - you know things are very wrong, just keep pushing your doctors and put the onus on them to figure out what specifically is going on. Don't doubt yourself. It's NOT all in your head! You have a legitimate physical illness that's just being particularly tricky to pinpoint right now. That's not your fault and it's not something you're making up. It's real and it's obviously causing you a lot of pain.

My memory is garbage - remind me, do you see the GI for the first time soon? Like next month? You haven't had anything like a colonoscopy yet, correct? If it were me, I'd definitely be asking the GI for that right away and maybe a scan (CT or MRI) as well if you haven't already had imaging tests done. Have the GI do as many tests as they can to see if you can at least figure out the source of the bleeding, and hopefully get a diagnosis as well.

Seriously woman, you need to stop eating things that make you feel worse! Eek! I've actually been really good this week myself, I'm eating mostly low-residue things to be as friendly to my tummy and guts (and hemmie) as possible. Eggs and toast are really safe for me, so I've had those for at least one meal every day. :p This week I've also had baked salmon, a baked potato without the skin, and some plain buttered pasta. Eggs and toast are my staple dish right now though. Last night my hubby asked what I wanted for dinner, and I was like, "Um, you're going to kill me, but, eggs and toast?" Ha ha. He actually made it for me, too.
 
Cat-a-Tonic said:
It's not all in your head and it sure doesn't sound like "just IBS" either. Don't let them get into your head like that - you know things are very wrong, just keep pushing your doctors and put the onus on them to figure out what specifically is going on. Don't doubt yourself. It's NOT all in your head! You have a legitimate physical illness that's just being particularly tricky to pinpoint right now. That's not your fault and it's not something you're making up. It's real and it's obviously causing you a lot of pain.

My memory is garbage - remind me, do you see the GI for the first time soon? Like next month? You haven't had anything like a colonoscopy yet, correct? If it were me, I'd definitely be asking the GI for that right away and maybe a scan (CT or MRI) as well if you haven't already had imaging tests done. Have the GI do as many tests as they can to see if you can at least figure out the source of the bleeding, and hopefully get a diagnosis as well.

Seriously woman, you need to stop eating things that make you feel worse! Eek! I've actually been really good this week myself, I'm eating mostly low-residue things to be as friendly to my tummy and guts (and hemmie) as possible. Eggs and toast are really safe for me, so I've had those for at least one meal every day. :p This week I've also had baked salmon, a baked potato without the skin, and some plain buttered pasta. Eggs and toast are my staple dish right now though. Last night my hubby asked what I wanted for dinner, and I was like, "Um, you're going to kill me, but, eggs and toast?" Ha ha. He actually made it for me, too.
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I know something is wrong, but I don't know how wrong. I told my boyfriend and he said, 'how do I put this lightly, but you have a sore arse!' I told him, it doesn't bleed though, only on one occasion after a heavy night on vodka and that was in days before my piles. He said that it was unlikely I had UC like him, I just said I have lots of mucus instead of blood, so probably not. Either way, I just want an end to all of this. I just want to stop feeling sorry for myself and feel better. I didn't even go to the gym last night for that reason.

GI first appointment is on the 10th of next month. It's gone pretty quickly, but it's just not quick enough. I just don't want to be in and out of the doctors any more, but at the same time there are days where I am in pain and I really do need help. Today, I feel a bit better, apart from being bloated from all the cake I've eaten.

I just feel that there are other people that are in a lot more pain than I am. :( Maybe I'm not bleeding, maybe it's explained some other way. They didn't do a micronutrients test, so can't see if iron is low, but either way, I eat plenty of iron rich foods.

I've been baaaad. Just stood outside and had my arm over my stomach and the rumbling was so loud and so vibrate-y, it was weird! My safe is rice krispies and toast at the moment. :cool2:
 
Ah, sorry to hear that kellehbeans, I've been in similar dead ends with doctors so I know how it feels. One second you think maybe they're right and you're not as sick as you feel, the other you get enraged because you KNOW you're as sick as you feel and they need to take it seriously.

Sending lots of hugs your way!
 
Kelleh, that's what my GI said about UC as well - he told me that with UC, you just bleed and bleed and bleed. I'm an on-again off-again bleeder, but mine seems to be solely due to hemorrhoids (and with UC it's due to ulcerations). So we've ruled out UC for me as well - but Crohn's and other IBDs like microscopic colitis are still likely suspects for me. I would think that they are for you as well. So yes, you can still certainly have IBD even if you're not a bleeder, but not being a bleeder means it's probably not UC specifically.

And, yes, of course, there are always others who are worse off than you or in more pain than you. BUT - this does not negate your pain, it does not mean your pain doesn't matter or isn't important! I had a great-grandfather who died many years before I was born. He apparently had UC, tuberculosis, AND cancer all at the same time according to what my grandma told me. Needless to say, he died fairly young and probably was in a ton of pain and suffered horrendously. Sometimes I think about him when I feel like I need to "suck it up" and just deal with things. But, his suffering also doesn't negate my own. So please don't get yourself in that mindset. Your symptoms and your pain are valid. :)
 
We shall see. :) just overdid it at the gym and oh my gosh, my stomach, could not move once I'd finished! 2 and a half hours exercise today, 1hr45min at gym itself! Glad to be home. Don't need food though after all I've eaten today, argh.

About the bleeding, obviously some bleeding somewhere for my RBC to be decreasing, it's just not obvious. I eat so much iron rich food, I don't know where I am losing it. Going to take those results to my GI and express my concerns.

I know we can't compare, but it's sometimes so hard! I just don't want to be lumbered into the 'crazy' diagnosis or the 'IBS' one, which seems like us lot here seem to be getting a lot recently. I'm just scared of meeting my GI and hoping they're a lot more insightful than the GP. Just don't want this to go on for too long. [emoji24] But, I guess that's everybody's wish!
 
I just spent the last 7 hours in absolute agony. The worst epigastric pain I've ever had, it felt like someone was squeezing my insides and it also radiated to my back. I've taken so many painkillers and I guess they kicked in finally because the pain is subsiding. I've had this before and reckon it's my pancreas..I don't know. My family are all downstairs laughing and I've been upstairs crying...
 
kellehbeans said:
We shall see. :) just overdid it at the gym and oh my gosh, my stomach, could not move once I'd finished! 2 and a half hours exercise today, 1hr45min at gym itself! Glad to be home. Don't need food though after all I've eaten today, argh.

About the bleeding, obviously some bleeding somewhere for my RBC to be decreasing, it's just not obvious. I eat so much iron rich food, I don't know where I am losing it. Going to take those results to my GI and express my concerns.

I know we can't compare, but it's sometimes so hard! I just don't want to be lumbered into the 'crazy' diagnosis or the 'IBS' one, which seems like us lot here seem to be getting a lot recently. I'm just scared of meeting my GI and hoping they're a lot more insightful than the GP. Just don't want this to go on for too long. [emoji24] But, I guess that's everybody's wish!
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Honestly, do be prepared that you'll have to argue with the GI just as much as with a GP. I had high hopes for my first GI appointment and he had barely read my chart when I came in, and dismissed almost everything I said.

He basically held a mini-seminar as to what IBS is? I had to really get mad and point out the bleeding probably 5 times before he was like "oh fine we'll do a pill cam too then, but then THAT'S IT!" Of course then he didn't actually order one until I called back over a month later only to find there was nothing about it in my chart... And getting back in with him is about as hard as it was to get my very first appointment.

I don't want to bum you out, and hopefully you'll have better luck with your GI, but don't expect miracles or you might be disappointed.

My GI still has the point of view that once the pill cam is done, if it doesn't show anything, he's done with me. Even though we haven't found the source of the bleeding and my iron levels are still down...
 
Izzie said:
Honestly, do be prepared that you'll have to argue with the GI just as much as with a GP. I had high hopes for my first GI appointment and he had barely read my chart when I came in, and dismissed almost everything I said.



He basically held a mini-seminar as to what IBS is? I had to really get mad and point out the bleeding probably 5 times before he was like "oh fine we'll do a pill cam too then, but then THAT'S IT!" Of course then he didn't actually order one until I called back over a month later only to find there was nothing about it in my chart... And getting back in with him is about as hard as it was to get my very first appointment.



I don't want to bum you out, and hopefully you'll have better luck with your GI, but don't expect miracles or you might be disappointed.



My GI still has the point of view that once the pill cam is done, if it doesn't show anything, he's done with me. Even though we haven't found the source of the bleeding and my iron levels are still down...
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I never have high hopes in anything anymore. A certain somebody in my life ripped that hope and belief away from me. I just think our specialists may be a bit better than what I have at my doctors surgery, as pretty sure I'm attending the worst one in my hometown.

You really need a new GI... Bleeding isn't to be ignored lightly.
 
Well it's kind of out of my control. I'll see a new one eventually but for now I'm stuck with this ball of sunshine. Just have to keep at it with bad doctors until they give us some answers I guess.

It's not even that they're dismissive though it's more that when they've done the basic test and don't find anything - you're just crazy.

Because I have had a lot of test. They just don't show anything.
 
@kellehbeans You'll be glad to know I've now tried liquid Gaviscon. And you were right, it is better.

I'm back to feeling not-so-good. I think something must be triggering these little episodes of feeling worse because they just come out of nowhere. Sore throat, reflux from absolute HELL, passing a LOT of mucus. Have my fun phone appointment with the doctor this week though so I'm hoping to accumulate enough rage to be persuasive until then.

Hope you're all okay!
 
@izzie - yay! It's almost instant too. [emoji16]

Hope you feel better soon. I've been playing golf but I have a raging headache. [emoji24]
 
So I've gotten my hands on some esomeprazole and been told to "experiment". I'm currently on 40 mg Omeprazole daily and I'm just wondering, those of you who have experience with these meds, could either be more effective than the other? I'm contemplating whether to start off on 20 or just go to 40 right away. I know none of you are pharmacists, and I'm talking to them too, just wondering what your experience has been.

Either way, 8 months into having reflux I'm finally trying another medication since the first doesn't work so well. Keep your fingers crossed for me!
 
Izzie, I've been taking 40 mg esomeprazole and that dose has worked pretty well for me. (I did briefly try 80 mg, I think I mentioned this already, and it caused me to not be able to break down my other tablets that I was taking.) For me, esomeprazole has always been more effective than omeprazole. My GI said something to the effect of, esomeprazole and omeprazole are very similar medications, but esomeprazole is longer-lasting or slow-release or something like that? So in theory it works longer and/or better than omeprazole. I forget exactly what he said, sorry! But in a nutshell, it does work better for me than omeprazole and I need a 40 mg dose to keep my symptoms largely at bay.
 
Sweet! I'm cautiously hopeful about it but I suppose it'll take a few days until I notice if it's doing any good.

How are you doing?
 
I haven't been very well lately. :( Been feeling very run-down and exhausted ever since the bleeding episodes last week. I'm no longer bleeding, but I'm still feeling the effects for sure and my guts are still really unsettled too. The steroid suppositories seem to have stopped the bleeding in its tracks, so that's good news. I just wish I could bounce back from this stuff a little quicker, I feel like an old lady. I didn't go to the gym for over a week and then my joints started bothering me again, so I forced myself to go to the gym yesterday. Fortunately that went okay, my body didn't punish me extra for pushing myself to go to the gym, so my joints are doing better now but I'm still freaking exhausted.

It's also possible that I'm coming down with a cold and that's another reason why I'm so exhausted. We went from really hot weather here to much cooler weather, it basically went from summer to fall very abruptly. That sort of weather shift always messes with my immune system and my sinuses, so I've been sniffly and have had an off-again on-again sore throat for a few days. So that could be another reason why I'm so tired. I just want to hibernate. :p

Yeah, give the esomeprazole a few days or even a couple weeks to fully kick in. How are you doing, have your classes started yet? I kind of want to go back to school myself - I'm 35 and I have a degree (in Spanish, which I've largely forgotten and was never fluent in to begin with) but sometimes I think I'd like to go back and take some classes to become a personal trainer so that I could get a job in fitness. Ideally I'd love to work with people like us, people with chronic illness/arthritis/injury/etc who need work-arounds and help with their fitness. But sometimes I'm so sick that I feel like I could never make it in that industry and who am I even trying to kid. So I don't know, on one hand I'd love to do it but on the other I don't know if I'm physically capable.
 
Cat-a-Tonic said:
I haven't been very well lately. :( Been feeling very run-down and exhausted ever since the bleeding episodes last week. I'm no longer bleeding, but I'm still feeling the effects for sure and my guts are still really unsettled too. The steroid suppositories seem to have stopped the bleeding in its tracks, so that's good news. I just wish I could bounce back from this stuff a little quicker, I feel like an old lady. I didn't go to the gym for over a week and then my joints started bothering me again, so I forced myself to go to the gym yesterday. Fortunately that went okay, my body didn't punish me extra for pushing myself to go to the gym, so my joints are doing better now but I'm still freaking exhausted.

It's also possible that I'm coming down with a cold and that's another reason why I'm so exhausted. We went from really hot weather here to much cooler weather, it basically went from summer to fall very abruptly. That sort of weather shift always messes with my immune system and my sinuses, so I've been sniffly and have had an off-again on-again sore throat for a few days. So that could be another reason why I'm so tired. I just want to hibernate. :p

Yeah, give the esomeprazole a few days or even a couple weeks to fully kick in. How are you doing, have your classes started yet? I kind of want to go back to school myself - I'm 35 and I have a degree (in Spanish, which I've largely forgotten and was never fluent in to begin with) but sometimes I think I'd like to go back and take some classes to become a personal trainer so that I could get a job in fitness. Ideally I'd love to work with people like us, people with chronic illness/arthritis/injury/etc who need work-arounds and help with their fitness. But sometimes I'm so sick that I feel like I could never make it in that industry and who am I even trying to kid. So I don't know, on one hand I'd love to do it but on the other I don't know if I'm physically capable.
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I'm sorry you haven't been feeling well... That sounds like a great idea though!
I know I'd love it if I could find a trainer who was understanding about those kinds of issues. Staying as healthy as you can while sick isn't the easiest task, but you've been there yourself so I'm sure you could be a great help to people!

I have started classes, yes, but only 50% because I also have a job, and I can't handle full time AND work right now, it's just not feasible.

It's kind of taking me forever to finish my degree. Before all this it was because I change my major all the time (ADHD, totally can't decide on anything ever), and now that I've decided I'm sick and miserable all the time :ymad:

I'm not great at school. At all, actually, I dropped out of highschool twice and it took me until I was 22 to even get my diploma. I love learning, it's the whole... homework and organized studying part that gets me down sometimes. I can keep up for a while and then I kind of lose steam. So the fact that I'm at uni at all is kind of a miracle. I really prefer working and having more fast-paced and active days, not just sitting around reading and taking notes...

Sometimes it makes me doubt why I'm even in college. A lot of what I study is so theoretical and I'd hate to end up in an office job or something.
 
Ha, I work an office job. :p It's not bad, particularly when it comes to having a chronic illness. I get to sit rather than be on my feet all day, it's not super stressful, and I have a really understanding boss and understanding co-workers as well. And the building where I work is great, there's a free gym in the basement so I can go down there anytime and let off some steam.

Yeah, it seems like there's a lack of really understanding trainers out there when it comes to health issues. Sometimes I watch those "extreme weight loss" type shows, and so often the contestants on those shows have things like arthritis, and what do the trainers do? High-impact stuff like jogging! That has to hurt so much, it certainly hurts me and my arthritic joints when I try to jog. I cringe at stuff like that and it seems like I could do a lot of good if I got certified to be a trainer myself. Sometimes it seems insurmountable to get there, though. I not only need to find the time and money to get certified (those are two big enough hurdles), but I also of course need to be well enough to complete the training. And am I even going to have a chance at being successful if I'm sick myself? Like, am I going to just end up cancelling a lot of training sessions with clients because I'm too ill to train them? Ugh. Stuff like that gets in my head and tells me I can't do it. I need to figure out a way that I can do it.
 
Cat-a-Tonic said:
Ha, I work an office job. :p It's not bad, particularly when it comes to having a chronic illness. I get to sit rather than be on my feet all day, it's not super stressful, and I have a really understanding boss and understanding co-workers as well. And the building where I work is great, there's a free gym in the basement so I can go down there anytime and let off some steam.

Yeah, it seems like there's a lack of really understanding trainers out there when it comes to health issues. Sometimes I watch those "extreme weight loss" type shows, and so often the contestants on those shows have things like arthritis, and what do the trainers do? High-impact stuff like jogging! That has to hurt so much, it certainly hurts me and my arthritic joints when I try to jog. I cringe at stuff like that and it seems like I could do a lot of good if I got certified to be a trainer myself. Sometimes it seems insurmountable to get there, though. I not only need to find the time and money to get certified (those are two big enough hurdles), but I also of course need to be well enough to complete the training. And am I even going to have a chance at being successful if I'm sick myself? Like, am I going to just end up cancelling a lot of training sessions with clients because I'm too ill to train them? Ugh. Stuff like that gets in my head and tells me I can't do it. I need to figure out a way that I can do it.
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Oh nothing against office jobs, I just could never do it on account of having the attention span of a goldfish. I need to be on my feet :p

I worry about that too though, being sick getting in the way of things that I really want to do. It already does, a lot of the time. Having stomach problems has not been good for my social life.
 
Sorry to hear you guys haven't been feeling a 100. I've been...meh. It's like I'm scared to say I feel well because it's so short lived usually so what's the point.

I hate my job, I'm a property manager and I've decided to hand my notice is on Friday. I really want to do primary teaching but you both echo my fears- that "what if I'm too ill, what if it's too active for me, what if I need the toilet". Teaching isn't something I can call in sick for as much as I've done in other jobs.

I need someone to just tell me I can. It's just mentally exhausting.
 
I'm such an introvert so fortunately my social life mainly revolves around watching Netflix in my pajamas with my hubby, ha ha. :p So that part doesn't bother me too much. I mostly just want to work out, that's my main frustration when my body doesn't allow me to do that. If I weren't sick, I could be so fit and I'd be able to have such nice abs. Being sick, though, sometimes I am not able to work out for days, weeks, even months at a time. And my belly area is a disaster, it's flabby from the steroid weight gain and it's always bloated and of course there are abdo pains and nausea and just generally feeling unsettled. I can't even do a plank lately without making my belly angry. It's *so* frustrating! And that's another one of my worries, honestly, even though it's kind of dumb - even if I did get certified to be a trainer, who would hire a trainer with a bloated flabby belly? Potential clients would take one look at me and laugh and walk away. That's probably just my lack of self-confidence talking, but it does get to me. I work out a lot, I wish my belly would show it the way my arms and legs do. Instead I look like I'm pregnant or like I just ate a whole pizza. Not a great image for a trainer to convey.
 
Cat-a-Tonic said:
I'm such an introvert so fortunately my social life mainly revolves around watching Netflix in my pajamas with my hubby, ha ha. :p So that part doesn't bother me too much. I mostly just want to work out, that's my main frustration when my body doesn't allow me to do that. If I weren't sick, I could be so fit and I'd be able to have such nice abs. Being sick, though, sometimes I am not able to work out for days, weeks, even months at a time. And my belly area is a disaster, it's flabby from the steroid weight gain and it's always bloated and of course there are abdo pains and nausea and just generally feeling unsettled. I can't even do a plank lately without making my belly angry. It's *so* frustrating! And that's another one of my worries, honestly, even though it's kind of dumb - even if I did get certified to be a trainer, who would hire a trainer with a bloated flabby belly? Potential clients would take one look at me and laugh and walk away. That's probably just my lack of self-confidence talking, but it does get to me. I work out a lot, I wish my belly would show it the way my arms and legs do. Instead I look like I'm pregnant or like I just ate a whole pizza. Not a great image for a trainer to convey.
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Good on you though-pushing through. I'm a giver upper. I bet you'd make a great personal trainer, you've clearly got just as much determination as any trainer despite an illness, I think that makes you more qualified than most. It's all about saying "you can"-both for yourself and your hypothetical clients! 🏆
 
Megan, I don't think 100% is even possible for me anymore. I'm happy when I get up to feeling 90%. I feel like 100% was my "old normal" and 90% is about as good as it gets with my "new normal" if that makes sense.

Being a teacher definitely sounds challenging. I wonder if they'd make accommodations for you? Maybe you could get a teaching assistant or a student teacher - that way someone would be in the classroom with you, so you could run to the bathroom as needed without worrying about leaving the kids alone? And surely you could sit on low-energy days and things like that?

I don't know that I'm in the right mental state to be able to honestly tell you that you can (clearly I'm in the same "I don't know if I can" mindset right now myself), but I'm sure there are teachers on the forum who might be able to give you more insight than I can. You might want to start a new thread asking for teachers to respond.
 
Cat-a-Tonic said:
I'm such an introvert so fortunately my social life mainly revolves around watching Netflix in my pajamas with my hubby, ha ha. :p So that part doesn't bother me too much. I mostly just want to work out, that's my main frustration when my body doesn't allow me to do that. If I weren't sick, I could be so fit and I'd be able to have such nice abs. Being sick, though, sometimes I am not able to work out for days, weeks, even months at a time. And my belly area is a disaster, it's flabby from the steroid weight gain and it's always bloated and of course there are abdo pains and nausea and just generally feeling unsettled. I can't even do a plank lately without making my belly angry. It's *so* frustrating! And that's another one of my worries, honestly, even though it's kind of dumb - even if I did get certified to be a trainer, who would hire a trainer with a bloated flabby belly? Potential clients would take one look at me and laugh and walk away. That's probably just my lack of self-confidence talking, but it does get to me. I work out a lot, I wish my belly would show it the way my arms and legs do. Instead I look like I'm pregnant or like I just ate a whole pizza. Not a great image for a trainer to convey.
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You know what though, you could totally use that to your advantage. Do you have any idea how intimidating perfectly ripped trainers can be to people? It can totally make you feel like training isn't even for you, it's just for perfect pod people who aren't sick, imperfect, real people with real problems. With the kinds of clients you'd want to take on if anything they'd be more inclined to work with you for NOT being the poster child for impossibly perfect bodies.

Just my two cents, of course, but don't sell yourself short!
 
Thanks guys, I really appreciate the encouragement. :) Izzie, that's a good point, actually. Maybe my belly flab can be advantageous in a way (that feels weird to say though, ha ha). It still bothers me, though. Maybe I'm extra sensitive to it right now because I'm back on the steroid suppositories right now so that's not exactly going to help me lose the belly flab (it'll just contribute to it, that's what always happens). I would love to get off of steroids for a good long stretch, maybe then my belly would deflate a bit. :p
 
Well, I've definitely come down with a cold, at first I wasn't sure but it's made itself more obvious as the day has gone on. It always seems totally unfair, for those of us who are chronically ill, to get a cold or virus or whatever on top of our usual issues. Bleh. At least now I know why I have still been feeling very low energy and run-down - and hopefully I will feel less fatigued once this cold runs its course and gets out of my system. For now it's soup and tea and rest and throat drops for me. Fortunately, we've had some cooler weather lately, so it won't be too bad - I can bundle up in a blanket or take a hot bath without sweating to death from the summer heat. :p And hey, it's a nice change of pace to get an illness that actually goes away within a week or so. I wish my guts had gotten that memo. ;)
 
Sorry to hear about the cold, Cat :(

I have some me news, though! So, I went to the integrative medicine part of the hospital for my appointment yesterday. They had me meet with an Internal Medicine doc, first. She asked something no one else has -- why haven't I had a methane/hydrogen breath test for SIBO, yet, when they've run just about everything else? So she wrote a note to GI, on my behalf, suggesting it (she can't order it for some reason or other). I'd have to go to a different hospital as they're the only one locally that offers it, but the results would go right back to the GIs I've been seeing. She read through my file, with a pharmacist in training also going over my meds, and they were both upset that I was told to "give up". She did, however, write referrals for acupuncture for chronic pain and arthritis pain (I said why not, can't hurt, right? haha!!) a dietitian because my diet right now is simply low-residue blands and they might want to help add stuff carefully, and a mind-body counselor-type person to help me cope, because she does think whatever this is chronic, and mind-body stuff is good for that.

I really hope this is a step in the right direction!
 
Sounds promising, Wildmtn! I hope all of that helps. Certainly if you've just been doing a low-residue diet, a dietician sounds like a good plan as it's not the best idea to do low-res long-term as you're not getting a lot of nutrients from most low-res foods. Have you tried anything like juicing? I love juicing, it removes all the fiber but keeps the nutrients from the fruits and veggies. It can get a bit pricey depending on how often you juice (for me it's about 1-2 times per week). And juicers themselves can be pricey too (although I got my first juicer at a garage sale for $10, so if you're interested in trying it, have a look around for a used one). Just a thought for you. It just feels like liquid health when I drink fresh juice. :) And it's always easy on my tummy.

I haven't had acupuncture but I've heard good things about it in terms of pain relief, so I hope that helps you a lot. I haven't had a test for SIBO either but I've heard others on here talking about it (I believe Moogle had that test done, although I haven't seen Moogle around the forum lately). Good luck with it all and keep us posted on how it goes!
 
I've heard good things about holistic treatments. I'm going to go down that route if all else fails. Quick question, my doctor is always asking if I have nocturnal symptoms, it seems to be the symptom they use to rule out things like ibd etc ....who here has nocturnal symptoms???
 
Hi Megan-interesting question from your Medco. I have never (at least yet) been asked that question. However I would probably respond with yes then list the following:

1. Difficulty getting off to sleep even when I'm knackered
2. Wake up constantly in the night to urinate then rarely go back to sleep
3. Symptoms feel the worst of a night just as I'm a out to retire for the evening
4. As I doze off I jolt and have mild panic attacks - my heart rate drops (which for me is around a low 40 RHR.
5. Aches and pains I've been having all day come to the fore along with a cold sweat
6. Sleep is often punctured by waking up with cold night sweats especially around back of neck and forehead.

Did she ask why she was enquiring along this line?
 
I definitely have difficulty sleeping because of the pain a lot of the time. Once I'm asleep it rarely wakes me up but it happens.

Personally it looks like I'm getting another proper in-person appointment with my GI. I've just bascially called daily for a week and been like "not good enough I want another appointment please" and finally they gave in :p

BTW, those of you who've been on PPIs for a longish time - should one take supplements to combat the whole... bone density thing? Because I've been on these for like 9 months and haven't taken anything. I already have bad joints and achy bones so I'm in no mood to make it worse :p
 
Needananswer said:
Hi Megan-interesting question from your Medco. I have never (at least yet) been asked that question. However I would probably respond with yes then list the following:

1. Difficulty getting off to sleep even when I'm knackered
2. Wake up constantly in the night to urinate then rarely go back to sleep
3. Symptoms feel the worst of a night just as I'm a out to retire for the evening
4. As I doze off I jolt and have mild panic attacks - my heart rate drops (which for me is around a low 40 RHR.
5. Aches and pains I've been having all day come to the fore along with a cold sweat
6. Sleep is often punctured by waking up with cold night sweats especially around back of neck and forehead.

Did she ask why she was enquiring along this line?
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She said that with IBD etc, they're diseases and have no off switch...with stuff like IBS, it's functional and manages to lie dormant whilst you sleep. I have woken up once or twice but apparently not enough to warrant her concern. Sometime I tweak the truth a little, gets you much further in terms of tests etc!
 
I haven't had the chance to really read everything, so apologies if I have missed anything over the course of the week.

I'm not sure if mine is *truly* 24 hours. There's been occasions where I have woken up with a very sore stomach in the middle of the night. I've had night sweats - but I've attributed these to my anti-depressants I used to be on.

An update on me, my stool is finally all soft and I'm not struggling to pass anything! On a more negative note, I am going 5-6 time a day, it's rather thin, it's mucus-y, I leave orange stains on the toilet paper, and it's quite a lot. By my standards, this is not the D because it doesn't look like it, but I'm sure the volume is attributing to the fact it may be. Hey, at least I'm not 'constipated'. Seems the Laxido is keeping me at bay with that half. I'm not even eating half as much as I used to, so this volume is quite weird. Definitely weird for me.

My pain however, has been quite irritating. It's just all left-sided, from just under my rib cage, to lower down. Lower down is more painful though. Made worse when I have had a BM. It's OK, there's only a few weeks left until my 1st GI appointment. Hope everybody is doing well!
 
kellehbeans said:
I haven't had the chance to really read everything, so apologies if I have missed anything over the course of the week.

I'm not sure if mine is *truly* 24 hours. There's been occasions where I have woken up with a very sore stomach in the middle of the night. I've had night sweats - but I've attributed these to my anti-depressants I used to be on.

An update on me, my stool is finally all soft and I'm not struggling to pass anything! On a more negative note, I am going 5-6 time a day, it's rather thin, it's mucus-y, I leave orange stains on the toilet paper, and it's quite a lot. By my standards, this is not the D because it doesn't look like it, but I'm sure the volume is attributing to the fact it may be. Hey, at least I'm not 'constipated'. Seems the Laxido is keeping me at bay with that half. I'm not even eating half as much as I used to, so this volume is quite weird. Definitely weird for me.

My pain however, has been quite irritating. It's just all left-sided, from just under my rib cage, to lower down. Lower down is more painful though. Made worse when I have had a BM. It's OK, there's only a few weeks left until my 1st GI appointment. Hope everybody is doing well!
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I too have had a change in volume, if you will. I've attributed it to being on PPIs but I really don't know what it is. I too am eating less than I normally would, so it seems quite strange. My pain is also all left-sided. So we have some stuff in common there.
 
Izzie said:
I too have had a change in volume, if you will. I've attributed it to being on PPIs but I really don't know what it is. I too am eating less than I normally would, so it seems quite strange. My pain is also all left-sided. So we have some stuff in common there.
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Clean up has got hard. I need to bring some baby wipes to work. :frown:
 
Oh and now I've talked to the GI guy again for the first time in forever. Had a phone appointment. And oh god he's such an unpleasant person.

You know when doctors are just really glib and it's soooo obvious from their attitude that they don't believe you even though they don't say it outright? That's him.

The one thing I got out of the call was that he's no longer calling the pill cam the last thing he'll ever do for me, he said he "might be willing to consider" a pH test if the pill cam doesn't show anything.

He makes me feel just insane too because I swear he says a different thing every time we talk.

And he also just makes mountains out of molehills. I'm not asking for that much, I want my reflux problems treated and acknowledged while I wait for further testing to figure out what the root problem is. Is that really so difficult? I don't understand why I'm being treated like some faker for such a simple freaking request.
 
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Megan, I think what your doctor was trying to say is that there's a key difference between IBD and IBS, which is inflammation, and that doesn't go away when you sleep. So with IBS, it's thought to be a brain-gut signal misfire. Basically some people think (and you already know my thoughts on IBS) that with IBS, the brain mistakenly sends a signal to the guts to cramp, which then causes diarrhea etc. When you sleep, your brain sleeps so that signal doesn't happen and you don't get woken up with the sudden urge to "go". So no pain nor diarrhea when you have IBS and are asleep.

But of course with IBD, your guts are inflamed, and that inflammation doesn't go away when you go to sleep. So with IBD, being woken in the night with abdominal pains and/or the urgent need to run to the bathroom is pretty common. I think that's what your doctor was trying to ask, was if you ever get woken up with pain or what they call "nocturnal diarrhea". They may have also been wondering about night sweats which is also pretty common with IBD.

I've definitely had nocturnal symptoms myself when in a flare. My night sweats can soak though my pajamas, sheets, blankets - it's pretty gross. :p The first time it happened there was so much dampness that I was wondering if I wet the bed, but the wetness was all over and didn't smell like urine so I figured it must be sweat. Nowadays, if I anticipate having night sweats, I sleep on a towel so that at least I won't have to change my sheets in the middle of the night. And I've been woken up by the urge to go as well - it's like my guts give me a sharp jab and jolt me awake. It's really not pleasant! But it definitely indicates to me that I must have some type of IBD because those are clear signs of it.

Izzie, yes, I take calcium & magnesium & vitamin d every day to help combat bone loss. I'm at high risk given that I'm on both PPIs and I'm on-again off-again taking steroids which also rob bone mass, plus my mother was just diagnosed with early-onset osteoporosis (she doesn't have any IBD nor does she take PPIs, but she does over-exercise which may have been the cause of her osteoporosis). I also do weight-bearing exercise as often as I can, as that also helps combat bone loss. So yes, definitely, I would say it's a good idea to take supplements if you're concerned about bone loss, and do weight-bearing exercises if you're well enough to.
 
kellehbeans said:
@Izzie - be thankful he's considering something else - he could have just said there was no chance in hell!!!!
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I try not to have too many feelings one way or another about what he says because for all I know he'll forget he said it by the next time I speak to him :lol2:
 
Today was the first day in..I don't even know when...where I felt healthy all day. The difference in my mood, energy levels, affection, in fact EVERYTHING was astounding. No doubt it will be back to feel like crap tomorrow but to have a day without any illness was like living in a fantasy world, to imagine that this is what normal people feel like regularly makes me feel so green!
 
Nocturnal symptoms- yep. The need to jump out of bed for D, and my pain seems worse because it's harder to distract myself in bed (which is the reason for the mind-body counselor, and I meet her today).
 
I totally understand that, Wildmtn, I have a really hard time distracting myself as well. I have a co-worker who has UC, and at one point he asked me if I ever meditate to deal with my symptoms (apparently that's helped for him). I pretty much just laughed in his face, my brain is always going 1000 miles a minute and there's no way I'd be able to clear my head and be able to meditate. And when I'm lying down to sleep, that's when my mind most likes to race, of course. So yeah, I totally understand your reasoning for the counselor. I hope it helps.

Honestly, the only time I'm really able to clear my mind is when I'm exercising, particularly lifting weights. When I'm lifting, it's like my brain capacity is full of just things related to what I'm doing. I need to focus my mind solely on my workout - how many reps I've done, how is my form looking, how are my muscles feeling, focus all my mental and physical energy on squeezing out one last rep before my muscles completely fail, etc. There's no room left in my brain for worry or sadness or any other emotion. I've said in the past, when I'm in the gym, that's the one and only time that I'm able to feel healthy and normal. And that's partly because lifting weights makes me feel awesome and strong and therefore like a healthy normal person, and it's also partly because my brain just isn't able to have any thoughts about being ill (or depressed or worried or any of the emotions that go along with being ill), and not thinking about being ill allows me to feel normal as well. It's like my own personal version of meditation or mind-body therapy I guess! :)
 
The mind-body people are going to try bio-feedback with me in October - I think that sounds cool! They hook you up to a computer, and you get to see if you are effective or not trying different calming techniques. Won't cure anything, but if it lets me calm down and sleep at night when the pain is bad, I'm all for it!

In the meantime, I am ALSO trying acupuncture, because, really, why not? I have an appt today at noon. The D isn't super bad today (er, yet at least) but the pain is there, and was fairly demanding last night, so it should be a decent trial, since I've heard/read that sometimes acupuncture can produce rapid results.
 
@Wildmtnhoney that DOES sound cool. I applaud your doctor for even suggesting it, around here it seems that the stress of being sick and in pain is something you're expected to deal with alone or with pills...
 
Hi all,

Gone from C to D, quite badly too. It's been so bad it's inflamed all of my haemorrhoids again to the point where the pain is excruciating and feels like it's burning. :( It's been happening since Friday and I am becoming scared to eat. My stomach has become more vocal and I also passed blood yesterday, but for now I am going to say that's because I have a fissure or the haemorrhoids. I have a new pain now starting on the right, which started Saturday and I just generally feel unwell. I couldn't even use the nozzle of HC ointment because the pain was just too much. New fissures as well - yay.... not.

Called doctor, so awaiting that call, going to try and get a higher dose of Pred because that seemed to help last time, but not quite as the dosage was quite low...

Hope everybody else is OK. I know I'm not! Not sure I'm going to be going to the gym this week somehow... :(
 
ouch Kelleh, I'm so sorry to hear you're feeling so ouchie!

I meant to update on acupuncture! The needles themselves for the most part didn't feel like much. There were a couple that felt like what you would imagine going in, but then they didn't feel like anything, and most I didn't notice at all. She also put some moxa cones to burn on top of some of the needles - that was warm, but not in a bad way. I slept better that night than I have in awhile that night, so that was good. I'm going back Weds, and then again Sunday - so twice a week for awhile. Because I'm already on so many meds, she didn't add any herbs for me to take. Oh! And, she worked on my arthritic knees a little, and yesterday was rainy/damp, and while they did ache a bit, it wasn't nearly as intense as it has been in the past, so that was super cool! I didn't even notice it until my husband mentioned that I was still up doing stuff in the evening after the rain, when usually I wouldn't be.

Sending well wishes to all!
 
@Wildmtnhoney - eh, I'll get over it. Just coming to terms with just having to live like this. Rather quite irritated about it all, really.

Sounds good - acupuncture is meant to do wonders for a lot of things! My mum has had it done for her osteoarthritis in her knees.
 
Kelleh, I'm glad you called the doctor and I hope they can do something to help. Any new pain is definitely something to let them know about. And no, you don't have to live like this - they should at least be giving you something for symptom relief because that sounds really horrible. Hang in there and keep us posted on what the doctor says!

Wildmtn, that sounds like some good progress! I get arthritis pains too when it rains and particularly when it snows - the more it snows, the more painful I get. A couple years ago we had a blizzard coming and the pain was pretty awful! I told my hubby it felt like a LOT of snow was coming, and sure enough, when we woke up the next morning there was a foot and a half of new snow from the blizzard (which is a lot for us, that's enough to shut down the city for a day). I see you're in Colorado so you guys probably get more snow there than we do, so 18 inches of snow might not even be that big of a deal to you, but it was a big deal both for my city and my hips. :p

I'm rambling again. Anyway! It's great that the acupuncture helped! I might look into that myself. Does your insurance cover it?

How's everyone else doing today? I had a migraine for the past few days but fortunately it finally seems to be mostly over. Kelleh, I can totally empathize with you on not going to the gym for awhile. Between the bleeding and the migraine and having a cold, I've barely been to the gym at all the past few weeks. I finally went back yesterday and it felt wonderful (even with the migraine). I hope you're able to get back to the gym soon! I know how frustrated I get when I'm unable to workout for long stretches of time so I feel for you.
 
I feel the same, pretty much. Some bad days, some better. Haven't had any visible bleeding for a while now and the switch to esomeprazole seems to have improved the GERD problems a little.

Am feeling far too tired most of the time to make it to my classes, which is unfortunate. I'm not really feeling up to anything. Not really depressed, just a little apathetic. I try to do as much as I can but I'm also just going to have to accept that this year didn't turn out like I wanted, and some things have been delayed. But that's life, isn't it?

Finally have my pill cam scheduled for the end of this month.
 
Good luck with the pill cam, Izzie. I hope it is worthwhile and gives you some answers! With the extreme tiredness that you mentioned - have you had your vitamin levels checked lately? Things like low B12, iron, or vitamin D could all contribute to low energy (and those are all pretty common vitamin deficiencies that can happen with IBD). I know your GI is difficult to work with, but maybe you could get a new GP near where you live now and have them check your vitamin levels? Just a thought for you. It might just be something as simple as supplementing vitamins to have more energy.
 
Yay @Izzie!! Well done on finally getting an appointment! Glad you've also found something to work on your GERD symptoms.

@Cat - back on pred I go unfortunately, just in time for my birthday!!! Diarrhoea has calmed down again but it's back to the 6 times a day (in basically in the course of a few hours) nothing's coming out but yucky stuff :p my doctor basically said I need to push for more tests when I meet up with the GI as he said something is seriously not right - so I guess on the plus side, I have somebody taking me seriously? Am extremely lightheaded today and not sure how to deal with that.

Hopefully we'll both get back soon! I've taken up golf so that's not so tasking although today I didn't feel right driving so couldn't take myself to go practice.
 
Cat-a-Tonic said:
Good luck with the pill cam, Izzie. I hope it is worthwhile and gives you some answers! With the extreme tiredness that you mentioned - have you had your vitamin levels checked lately? Things like low B12, iron, or vitamin D could all contribute to low energy (and those are all pretty common vitamin deficiencies that can happen with IBD). I know your GI is difficult to work with, but maybe you could get a new GP near where you live now and have them check your vitamin levels? Just a thought for you. It might just be something as simple as supplementing vitamins to have more energy.
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I have not had those checked lately, no. But I'm waiting on an appointment with my GP and hoping to tackle some of my symptoms with her rather than with my GI since he's so... the way he is :p I'll try and bring it up with her for sure.

I do know that I'm anemic, and I suppose that could be a contributing factor as well.
 
An interesting development for me!

The dr from integrative medicine emailed me today, letting me know that my GI thinks that rather than bother with the hydrogen/methane breath test for SIBO, they should just treat me as if I do have it. So I have an Rx to pick up tonight, for augmentin - twice a day for 10 days, then I need to make an appt w/my regular GP as a follow-up to see if I'm doing any better at the end of that time.
 
Kelleh, for the light-headedness - particularly when you're having a lot of d, it's easy to lose sodium and that can cause you to become dizzy/light-headed. For me, I've found that having a teaspoon or two of soy sauce really helps. It's high in sodium and easily digested (not recommended of course if you're doing gluten-free or soy-free). It's a bit gross to just eat soy sauce, but for me it helps a ton when I'm experiencing dizziness. So try having something high in sodium and see if that helps any.

Izzie, anemia can definitely be a big factor. I hadn't been anemic until this year when I bled for a month straight back in March - since then, there was a noticeable difference in my energy levels. I'm finally getting back to having enough energy to make it through most days without feeling like I need a nap. So yeah, anemia could be the culprit for sure. It's still probably worthwhile to get your other vitamin levels tested with your GP just to know for sure what's going on.

Wildmtn, good luck with the antibiotics! Keep us posted on how that goes, I'll be interested to hear.

I did go to the gym today. I did 30 mins of yoga. Ugh, that was a joke. :p I did weights yesterday so I thought I'd do something different today. I'm just terrible at yoga, though. I'm not flexible whatsoever, can't touch my toes and can't do most of the poses correctly because of the basic flexibility that they require that I just don't have. Also, my belly is so chubby from the steroids, it kind of gets in the way! It's awful, I looked at myself in the mirror (fortunately I was the only one in the gym - I was doing yoga from a youtube video by myself) and I looked like an inflexible chubby idiot. I think I need to give up on yoga, it's just not for me. I feel gross and stupid and like a failure that's not the way I want to feel after a workout! :(
 
@wildmtnhoney - that's quite satisfying knowing they're treating you in a way - at least they can attribute it or cross it off the list by doing it this way! Good luck to you! How long should it be until you would be able to know if you can rule it out etc.?

@Cat - I never thought of salt. [emoji15] I did add salt to my rice, but obviously wasn't enough. But I have now stuffed my face because of sugar cravings - I ate fructose at the weekend and the binging begins again, as well as an even worse belly - but funnily enough it constipates me! But, I think I feel like this tomorrow, I'll weirdly ask somebody at work for his supply of soy sauce in his cupboard of condiments for his weird concoction of lunches! [emoji23] (They'll think me madder than i already am!)

EDIT: yoga needs loads of practice before you don't feel like a failure unfortunately. I enjoyed it, but I never felt like I worked hard enough to burn calories or whatever, so I kinda gave up.
 
I've tried yoga in the past, but I did a class, and it was not for me. I get the giggles when people are all serious and spiritual.

In other news: I have SUCH bad pain tonight for some reason. That reason being (I think) portion control issues. I tend to avoid eating because it makes me feel so shitty. And of course then I get so hungry I end up stuffing my face in one sitting and then, well, OUCH!

It's hard for me, getting into the right eating habits. I'm just not a very disciplined person, and I don't plan well. That and I still don't know what works exactly.

Commuting is just downright impossible right now though. Partly because I really need to be close to a bathroom in the mornings and then just the pain gets bad out of the blue sometimes and I hate being so far away from home when that happens. Also, belching non-stop in class? It's not fun. And when I get my little attacks it really is non-stop. I have to leave the room. It's embarrassing and I just don't want to deal with it. So I've been skipping a LOT of school.
 
Kelleh, if it makes you feel any better, I also have a stash of soy sauce in my desk drawer at work. :p And yeah, I'm sure if I practiced yoga a ton then I'd get marginally better. I don't think I'll ever be good at it, and I don't enjoy it nearly as much as I enjoy more intense exercise, so yeah. Give me weights or a bicycle any day! (My favorite workout is to ride my bike to the gym, lift weights at the gym, then ride home - it's like the perfect workout for me.) I can definitely tell that my muscles are working during yoga, but I don't get sweaty and get my heart rate up, I don't feel awesome and amazing like I do when I lift weights. I work out to get that feeling of being superwoman, you know? Feeling strong and feeling like I've pushed my body to its max. Yoga doesn't give me that feeling, it just sort of leaves me disappointed. And the fact that I'm not at all flexible, and extremely clumsy, and just sort of generally awkward - it makes for a frustrating time on the yoga mat. So yeah. I'll be doing a lot more cardio on my non-weight lifting days I think.
 
Izzie, over-eating can set things off for me as well so I feel for you. Over-eating can set off my GERD or my presumed-IBD or both - not a fun time. If you can, try eating more smaller meals throughout the day. I do that particularly on bad days - I'll have some toast, and if that goes okay then in a few hours I'll have some crackers, and in another few hours I'll have something else, etc. Just take it easy and eat what you can, when you can, and try not to stuff yourself. My 2nd ever flare-up came after Thanksgiving dinner - if you're not familiar with it, it's a traditional American holiday where you eat as much as you possibly can, get in an argument with your family, then fall asleep while watching football on TV. :p Seriously, that's pretty much it. I thought I had a tummy bug and got over it, stuffed myself silly on Thanksgiving, and then flared up - and that's when I knew I had something chronic. So yeah, I feel for you, it's really awful bringing symptoms upon yourself just because you ate too much. I've definitely learned my lesson though and I really try not to over-eat nowadays.

And yeah, yoga can definitely get silly! I just want to know what my muscles should be doing, not what my inner child should be feeling or what color my aura should be. :p Maybe that's another reason I'm so drawn to weightlifting, there's none of that silly stuff. It's all about muscles and nothing about how your chi should be flowing or whatever.
 
Cat-a-Tonic said:
Izzie, over-eating can set things off for me as well so I feel for you. Over-eating can set off my GERD or my presumed-IBD or both - not a fun time. If you can, try eating more smaller meals throughout the day. I do that particularly on bad days - I'll have some toast, and if that goes okay then in a few hours I'll have some crackers, and in another few hours I'll have something else, etc. Just take it easy and eat what you can, when you can, and try not to stuff yourself. My 2nd ever flare-up came after Thanksgiving dinner - if you're not familiar with it, it's a traditional American holiday where you eat as much as you possibly can, get in an argument with your family, then fall asleep while watching football on TV. :p Seriously, that's pretty much it. I thought I had a tummy bug and got over it, stuffed myself silly on Thanksgiving, and then flared up - and that's when I knew I had something chronic. So yeah, I feel for you, it's really awful bringing symptoms upon yourself just because you ate too much. I've definitely learned my lesson though and I really try not to over-eat nowadays.

And yeah, yoga can definitely get silly! I just want to know what my muscles should be doing, not what my inner child should be feeling or what color my aura should be. :p Maybe that's another reason I'm so drawn to weightlifting, there's none of that silly stuff. It's all about muscles and nothing about how your chi should be flowing or whatever.
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I KNOW, right? It was all about energy flowing out of the top of people's heads and I was like "what freaking energy what are you on about?" to the soundtrack of westernized generic "indian" music. It was pretty horrible.

And yeah, I need to learn how to deal with food better, for sure. I'm starting to really really hate having to deal with it at all. If I could just take a pill, I'd be happy.
 
sort of off-topic, but I find a nice alternative to yoga, without all the "eh" is pilates! All the focus is on what your body is doing, etc, but, surprisingly, some of the positions are very similar, it's just a very different take on how you get there, and what you focus on once you are there.
 
@Izzie - I can't do it in a class either, for that reason exactly! Doesn't help that most of the women that are in my gym's class for yoga are all old.. Not like I have anything against old people, it's just funny when they get all spiritual.

@Cat - Ah, but for us it's normal-er? Haha, I will look slightly weird pouring it onto a teaspoon and drinking it. :p But would be amusing to see how everybody reacts to it. I do like that you do weights at gym and cycle! My parents would kill me if I cycled to my gym as it goes through quite a dangerous area - and believe me, I really dislike static bikes in gyms. I just swap and change what I do for cardio, at the moment, it's running/more walking on a gradient. But weights always stays the same. I don't think I'm going to be ending up going all week this week, but hey, gonna go and play golf instead! :p
 
Kelleh, I hate stationary bikes as well. We have pretty cold & snowy winters here, so all winter long if I want to do bicycling, it has to be on the stationary bike because it's just not happening outside. Sometimes I feel like I'll go insane, it's sooo boring! Just pedaling to nowhere and being stuck in the same place, it drives me crazy - I know I need the cardio, but I just hate it. Riding my actual bike outside, though, is wonderful. I love bicycling in the fresh air with the scenery always changing around me, it's like night and day riding a real bike vs. riding a stationary bike.

I'm fortunate to live in a very bike-friendly city so we have a lot of bike paths here. When I ride my bike to the gym, I can take the bike path almost all the way from my house directly to the gym, the only traffic I have to deal with is crossing one busy road and that's the road that my gym is on. It's really nice, I hate riding my bike in traffic so being able to ride on paths made especially for bikes is wonderful. It's 3.26 miles (according to my bicycling phone app) each way from my house to the gym, so when I do a bike-gym-bike workout, I get about 6.5 miles of riding in plus a nice weights workout, it's a good amount of exercise, a good balance of weights vs cardio, and it's my favorite thing to do. I do that as often as I'm able to in the warmer months because I know I won't be able to all winter long. I also just like riding my bike around my city. We have quite a few lakes in the area and we have an arboretum, so I can ride past whatever scenery I want, forest or lakefront.
 
I've had nooo energy to work out lately. I take absurdly long walks but that's about all I can manage at the moment. Better than nothing I suppose.
 
Walking is definitely exercise, that totally counts! And yeah, it's difficult/impossible to work out when you have no energy, I definitely get that. I've had weeks or even months at a time when I haven't been able to work out due to whatever my health is throwing at me. I think the worst was when I had vertigo - it was probably a solid 6 weeks to 2 months or so that I was too dizzy and spinny to do anything other than short, slow walks with my cane. The vertigo drained my energy so much that all I could manage was one short walk a day - but I had been told that walking would help me recover, so I walked as much as I could which was not a lot. I used to be sort of an exercise snob and I felt like walking didn't "count" as working out, but I've changed my tune since having vertigo - walking totally counts and it did help me recover faster. So keep on walking and don't feel bad about not doing more, because walking counts for a lot. :)
 
I forgot to add - update about me. My co-worker might be trying to kill me. Not seriously, but she just gave me a dozen cookies as a thank you gift for some projects I helped on. It's taking all my willpower to not eat all of them. I've had two so far and I so want to eat more, they're delicious but not going to do good things for me. There are cookies staring at me, help. :p
 
Haha aww. Yeah I've definitely learned to not even have bad stuff at home. Or I will eat it. Even though I know it'll make me miserable :p

I accidentally forgot my reflux meds this evening. And couldn't for the life of me figure out why I was suddenly in the WORST PAIN EVER. It's just sooooo obvious to me that I have it and I cannot understand why my doctor refuses to acknowledge it. He even went so far as to blame my ADHD for my reflux problems last time I spoke to him. He keeps saying "everything's connected" and I'm just like DUDE. I've had ADHD my entire life. MY ENTIRE LIFE. And over night I get every single symptom of GERD, my gastroscopy doctor tells me I have a hiatus hernia - but STILL according to him it's just "stress". Honestly what the everloving-

I get so annoyed when I think about it :p

BTW, how do you determine the size of a hiatus hernia? The doctor who diagnosed me said it was probably small, but she wasn't sure. Can you tell on a scope or how does that work?
 
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Bad stuff? What's bad? Cake is surely tasty and so are cookies, so surely they're not bad? :p

I joke. I haven't eaten today so far because of some bad stomach cramps I have, probably due from the pred I'm taking, and some major reflux! Hello Mr. Reflux, I haven't seen you for a while!

I'm dead excited this morning, my golf clubs are out for delivery and I am so excited to go and try them out! (I'm sad, I'm sorry!) Early birthday present to me! -sings to self-
 
Izzie, your doctor is puzzling for sure. It absolutely sounds like GERD to me. I'm just afraid that if your doctor is denying you have GERD, what's going to happen with your pill cam? Even if it finds tons of evidence of IBD, is your doctor going to chalk that up to stress/ADHD as well?

Yeah, I'm totally a snacker, so I try to have safe and somewhat healthy snacks on hand. Rice cakes are always good, and I usually bring a couple kinds of fruit to work with me (bananas and peaches without the skin are my current go-to fruit) so that I have safe, healthy things to eat. Having cookies in front of me means I *will* eat them, though. :p

As for hiatal hernia size, my GI was clearly able to see mine on upper endoscopy. He said mine is "small and sliding" - apparently sliding means that it's not always active or something like that? Like the hernia sometimes slides open but sometimes the valve is closed, I think? In other words, he said that those characteristics of my hernia don't correlate with my severe GERD symptoms. So he doesn't think the hernia is the main or only cause of my reflux issues, and all he can tell me is that he doesn't really know why my GERD is so bad. Which, honestly, I'm glad he is able to say he doesn't know! So many docs would just make something up rather than admit they don't know. So anyway, yeah, size and features of the hernia should be able to be seen on endoscopy because my GI was able to tell those features of my hernia quite easily.

Kelleh, I find that eating can actually help my GERD symptoms sometimes. Like, if the acid in my stomach is really boiling, eating something will at least give the acid something to work on, so that it doesn't work on the lining of my stomach and cause an episode of gastritis. So at times when my reflux is going nuts, I force myself to eat something even though it seems wrong to eat when your stomach is going crazy like that, and it actually does help. So maybe give that a try, have a bit of bland food and see if that calms things down at all.

Golf is so not my thing, but I'm glad you found a way to be active and it sounds like something you enjoy so that's great! :) Enjoy your new golf clubs! I always love buying new fitness equipment so I totally understand your excitement. Have fun golfing!

Wildmtn, that's a bummer for sure, but at least it sounds like SIBO is something you can cross of the list of potential suspects? Hopefully your doctor will have some other ideas.

How's everyone today? I'm okay except that I've just eaten 3 cookies for breakfast. :p And actually my throat is a bit sore and my neck glands feel swollen - maybe I'm not actually over the cold that I had last week? I don't know, my immune system is so weird at this point, I can't even tell if I have a cold or not. Other people at my workplace with this cold have been coughing and sniffly and miserable. I had a bit of a cough for like 2 days and I had some head congestion which made me dizzy, but that's all over with now. So I think I'm better? But I honestly have no idea anymore. Is it weird that I'm a bit jealous of normal people having a normal, straightforward cold (because at least that means their immune system is normal)? :p Hah.
 
That's my problem, eating helps mine... temporarily. Then makes them 100x worse. :D So, I've just kinda learned to live with it. It hasn't been bothering me so much lately, so I'm happy with that. If I do, I just take oral suspension, and I'm fine.

They've arrived! So, I'll be going to test them out later. Not too strenuous, but is a form of exercise, so it'll help me feel a little exerted at least! That, and I have to go buy cakes while I am out for my colleagues! I think I like just buying new things, golf or not. :p

Sounds good that you're feeling better than normal, despite the sore throat! :) I'm actually OK today, well apart from my new fissure and how sore it is, plus how inflamed everything is down below - argh! So, getting 'roid rage at the moment, and I have to be taking them over the weekend.. Nooo...!
 
@Cat-a-Tonic Honestly I'm not holding out for this GI to help me with anything. He's being ridiculous. But this is just the quickest way for me to get the test done rather than wait for a new GI and go through the whole process again. I'm DEFINITELY doing all I can to get to a different GI, but it's going to take a while.

The doctor who did my scope pretty much said the same thing to me. Small hernia, but bad symptoms, and she wasn't sure why.

But yeah, I'm concerned about him writing anything off as stress at this point. He's just decided that that's how it is and he refuses to budge. I mean ADHD doesn't cause stomach problems! If I'd been on meds, then okay, I could see his logic. But I'm not, and I never have been. And I wouldn't get sick over night if it was related to stress regarding something I've had my entire life. It's so dumb.

BTW Cat-a-Tonic - how do you find lifting with a hernia? I've been concerned about it since someone told me that heavy lifts and otherwise strenuous exercise could make the hernia bigger. Which I definitely don't want, obviously.


Otherwise, things are okay I guess. I'm learning what triggers my symptoms and what helps and that makes life a little easier, albeit slowly. I did get my hair dyed today which was great. Honestly since getting sick I don't think I've ever looked better? It's like I'm trying to compensate feeling so horrible by at the very least looking my best :rof:
 
Izzie, I think a hiatal hernia isn't quite as affected by weightlifting as a hernia down in the intestines would be. Lifting honestly doesn't seem to affect my hernia at all - I've been lifting for something like 4 years now and I've had GERD the whole time and presumably have had the hiatal hernia the whole time (have had it for at least 3 years since the endoscopy found it). I should add that I don't do a lot of abdominal work - when I lift, I focus more on arms, legs, back, etc and try to leave my abs alone. If I do too much (or sometimes, any) ab work, then my reflux gets angry very quickly. It's like, the more I squeeze my ab muscles, the more "stuff" comes up my throat - I don't think it has much to do with the hernia itself, it's just a characteristic of my GERD. The hernia probably isn't helping anything symptom-wise, but I don't think I'm making it any worse by lifting weights, no. My GI knows I lift weights and he's given me similar advice, just take it easy on my abs and focus more on arms & legs in order to avoid symptoms. So yeah, I think it's okay, my GERD has even been surprisingly quiet for the most part lately.

The sad part of that is, since I don't do much ab work, plus with being off & on steroids, I've amassed a fair bit of belly flab (whenever I'm on steroids, I gain weight, and it always seems to go straight to my belly area). My arms and legs look solid and fairly muscular, but my midsection is a sad flabby joke. I really wish I could do more ab work, but the symptoms it brings on makes me have to largely avoid it. So I feel like I look really odd, I don't like it, I wish I could work on toning my belly area more! :( With the flab and the bloat, sometimes it looks like I'm pregnant. Yuck.

I'm jealous that you got your hair dyed, I need to dye my hair again soon. I started going grey at age 29, just a few months before I got sick. It was like my body was telling me that something bad was about to happen! And nobody else in my family has started going grey that young, everyone else is in their 40s or older when they start to go grey (my dad is in his 60s and just started going grey), so I think my premature greying must have had something to do with the sh*tstorm that was brewing in my guts. Anyway, it's been a few months since I last colored my hair, and the greys are coming back and there's more of them than ever! Eek, I'm only 35, I hate that my hair is turning grey. I have a box of at-home hair dye, I just need to find the time to use it. Hopefully this coming weekend.

I can relate to what you said about looking better than ever. I'm definitely fitter than I've ever been, even if my belly isn't fit. I used to hate working out, but once I essentially lost my health and realized how important it is, ever since then I've loved working on my health & fitness and have become a gym rat. I also have cuter clothes - I've sort of amassed a large wardrobe because I need certain "fat pants" when I'm extra bloated, I need belts when I'm losing weight, I have a lot of shirts that are sort of billowy and kind of hide the flabby/bloated belly, etc. I also have a lot of cute accessories (jewelry, scarves, etc) because I don't really do makeup, but when I'm feeling bad about myself or just wanting to distract away from how pale I am or how bloated I am or much acne I have or whatever's going on that day, I can put on cute accessories which also makes me feel better about myself and it's much easier to put on some accessories than it is to put on makeup or put effort into my hair. I sort of got addicted to clothes and accessories the first year I was sick (which was when I was at my sickest). I was having a hard time eating a lot of days, so I figured if I wasn't buying food, I should still buy something to cheer myself up, and I ended up buying a lot of clothes. Fortunately I'm quite thrifty and I find a lot of cute clothes for cheap at thrift stores, but yeah, I still buy way too many clothes. My boss has commented multiple times on how I never seem to wear the same outfit twice (I totally do, but I have so many clothes that I don't have to wear the same outfit again for quite awhile once I've worn it once). I'm kind of known at work for my fashion sense which is a bit hilarious. I don't wear makeup and my hair has been falling out more lately so I usually just have it in a ponytail, so it's not like I'm looking flawless, I just have some nice clothes and accessories. But I guess that's enough to make people think I'm super fashionable, hah.

Kelleh, have fun with golfing and cakes! Are you able to eat the cakes with your fructose allergy? I hope there are still fun treats you can have. (Meanwhile I've finished off my cookies, took me less than 24 hours to eat a dozen, and ugh, I feel gross now - hopefully nobody will give me any more treats anytime soon as I clearly have no willpower to resist the deliciousness.)
 
I haven't really worn much makeup or cared all that much about how I look before. I mean, I have, but i've been very chill about it. But since I got sick and permanently kind of look like someone suckerpunched me in both eyes (crazy dark circles), and I'm pale as death, I've become a makeup person :p

It's odd, because between that and the weight loss people keep telling me I look SO great, when in fact I feel shitty. But it's nice to not have to look as miserable as I feel at times

And hey, while I too would probably be a bit miffed at going grey at 29, grey hair is pretty cool. It just automatically makes people look smart tome :ycool:

On a positive note, I think I'm far more appreciative of the ways that my body performs well/feels good than I was before all this. Partially because I take better care of myself and also just because I know what it is to not feel so great.
 
I wear glasses so I already have the "I look smart" thing going for me, the grey hairs are just super annoying to me. I'm sure when I'm significantly older, like 20+ years from now, then they grey hairs might work for me in a "growing old gracefully" kind of way, but right now I still feel like I'm way too young for this nonsense. :p Sometimes it's like my body has no idea how old I am - grey hairs and I have the start of some small wrinkles, but I also get acne breakouts fairly regularly (particularly when on steroids). So I'm part old lady and part teenager apparently!

And I'm pretty fortunate, the people around me tend not to tell me how "great" I look when I'm super ill. I dropped down to about 115 lbs (at 5'8" tall, so I was underweight by quite a bit) a few years back due to how ill I was, and then when I was on steroids and gaining my weight back and getting color back in my face, that fortunately was when people started saying how great I look. I have one co-worker in particular who said she couldn't believe how much better I looked and she could tell I was feeling a lot better just by looking at me (I have been pretty open with my colleagues about my health struggles so they pretty much all knew how ill I was). It was really nice to hear things like that, I was happy that the people around me were observant enough to know that really skinny = really sick, and not something enviable.

I have dark eye circles all the time, and I have since I was a child (I can recall being in about 1st grade and thinking it was weird that I looked tired all the time - I would have been like 6 years old at that time!). So for me it's not even a fatigue thing, it's just how I am and how I was long before IBD came into my life. I only get really pale in a flare, though, so I could see how makeup could help the paleness situation. Do you get so pale that you literally look dead? I've had flares where it seemed like I went completely white, I can recall that once I walked into the bathroom during an awful flare and I caught a glimpse out of the corner of my eye of a completely white girl in the mirror, she looked like a corpse! It took me a few seconds to realize it was me! I'm fairly pale to begin with but this was literally like I had zero blood running through my face, which is kind of what a flare feels like anyway - it feels like all the blood in my body goes down to my guts and is either causing or fighting the inflammation (maybe both). If I got that pale again, I would definitely consider wearing makeup, because scaring myself in the mirror is not a good thing!
 
I've definitely scared myself on more than one occasion.

Aaaaand tonight I'm having really scary chest pain. Ugh. Probs the GERD/hernia. It's so annoying having someone going on inside your body that you can't SEE. There's no way to really determine what's going on when you get a new kind of pain or new weird feeling.

Which is just great for someone with anxiety tendencies, really. I mean a handful of times a day I'm sure that I have a strangulated hernia. Or a perforated ulcer. Or heck, some cancer maybe. Thankfully I know my own brain and I know how my anxiety works, so I'm able to ignore those thoughts for the most part. But it takes actual work and effort to keep them at bay. Of course, now I'm afraid to breathe a word about anxiety to any doctor ever again because they'll just blame all my physical issues on that.

It's worse when it's at night though. Because I can keep myself in check when I'm anxious, but I can't sleep.
 
I'm not meant to eat cake, but I do. But I pay for it. I'm resisting so far this morning, but I'm allowing myself some black forest gateau at 11. :)
 
Speaking of sweets...my MIL sent my husband home with apple pie! I really should not indulge, but I'm going to anyway :)

I'm another one who sort of got more into make up and clothes these past couple of years. I can't use food to make me feel better, so I dress up and play with makeup instead! I'm due to get my hair colored again soon, too -- my grays are showing as well. I started with just a few around 30, and now it's a few more at 38, and I'm just not ready.

Oh, and speaking of mirrors, etc - does anyone else notice that in pictures that it is really hard to really smile? I mean, I kinda notice now that all my smiles look forced :( and in some pics, I'm clearly in pain :( I look back at previous pics and I looked so happy, and it's just sort of a bummer. Which may be a part of my depression (did I mention that I'm starting Prozac?) too.

Anyway, hope everyone has a good day and wonderful weekend! I get to dye a friend's daughter's hair some fun colors this weekend!
 
No one in my family or friend group is particularly camera-happy so really there are hardly any pictures of me after the age of 18. But I do know that when I'm depressed I have a really hard time faking it. As in it's completely impossible. So that could definitely be your depression contributing.
 
Wildmtnhoney said:
Speaking of sweets...my MIL sent my husband home with apple pie! I really should not indulge, but I'm going to anyway :)

I'm another one who sort of got more into make up and clothes these past couple of years. I can't use food to make me feel better, so I dress up and play with makeup instead! I'm due to get my hair colored again soon, too -- my grays are showing as well. I started with just a few around 30, and now it's a few more at 38, and I'm just not ready.

Oh, and speaking of mirrors, etc - does anyone else notice that in pictures that it is really hard to really smile? I mean, I kinda notice now that all my smiles look forced :( and in some pics, I'm clearly in pain :( I look back at previous pics and I looked so happy, and it's just sort of a bummer. Which may be a part of my depression (did I mention that I'm starting Prozac?) too.

Anyway, hope everyone has a good day and wonderful weekend! I get to dye a friend's daughter's hair some fun colors this weekend!
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I'm jealous! I LOVE apple pie! It's one of the main things I cannot eat though - but I do have an e-cigarette and my flavour is 'dutch apple pie' at the moment. ;) Not the same, but just as good to just at least taste it!

I know what you mean hun. I am a BPD sufferer, and certain things to trigger me off. One thing I did learn is to keep smiling, even if you feel dead inside. Literally. The more you fake something, the more real it becomes. Smiling releases happy hormones. :)
 
I'm with you, Kelleh, I also have programmed myself to smile regardless of what's going on on the inside. I've dealt with depression off and on since I was something like age 12, so from an early age I learned I had to just pretend that everything was okay. Even now, whenever someone asks me how I'm doing, I just automatically answer "okay" or "fine" even though I'm often nowhere near being fine or okay. My dad is pretty much the one and only person who sees through the façade. He's the only person who will ask me how I am, I automatically say fine, but he doesn't accept that answer at face value and then he's like, no, really, how are you doing? Everyone else, when I say I'm fine, they just accept it. Sometimes I want to scream, I'm not fine! But I just keep smiling. I'm not exactly bottling things up - I know that's bad - I'm just selective with whom I tell the truth to (basically, you guys!).
 
I was told to do in a self-esteem therapy group I did recently. I've dealt with depression and a huge list of mental health problems since the age of.. god knows how long. I can date it back to being 5. That's the furthest I can remember.

One thing I also learned was to pick 3 positive things before you go to bed. Then remember them the next day. You need to teach yourself to pick up on positives rather than negative. Being human enables you to learn. We were not born with the negativity, rather we've enforced that ourselves. As easy as we taught ourselves it, we can easily get out of it - if we put our minds to it of course. Our minds are extremely powerful.

Saying that, I haven't been too great lately. Lot of anxiety round my work Christmas party because I have real issues with needing positive attention, even just being looked at. It's all back due to being ignored most of my life, except at home. I'm just going to say goodbye to my 30lbs I gained, as this time of the year my weight starts decreasing rapidly the more anxious I become. Not such a bad thing, but I'll be underweight again. *sighs*

Bottling up is never the way. But I do the same. But with BPD, I always pick on one person to constantly unbottle onto and then I end up in a vicious cycle of thinking I've been stupid to tell them and it just goes on and on and I end up getting so frustrated with myself.
 
I must say I'm lucky in that I don't feel the need to sugar-coat things. For anyone, really. I'm not too fond of blurting out my personal business to everyone all the time or anything, but I'm pretty blunt with people. I'm not the type who says I'm fine when I'm not, at least not anymore. Even when I don't want to talk about it, I tend to just say "well, I feel like shit, but not really in a sharing mood so moving on".

In fact I've been thinking lately that I probably SHOULD sugar-coat things a little more. Especially for my mom, who tends to take on everything bad that happens to me as if it's happening to her as well. I feel very guilty for adding to her stress.

I've had anxiety since I was about 8, and had depression on and off in my teens. But what I know with me is that no matter how bad those things get, I always reach a point where I'm like "well, this is useless" and I'm somehow able to get up, brush myself off, and get on with things until I feel better. I rarely have a really bad patch for more than a month or so at a time. I know that's not possible for everyone so I'm not going to say that it's easy or everyone who's depressed should get on with it already. But I'm lucky that for me, that's how it goes.

Since I've had those problems from such a young age I do feel like I have them under control somewhat. Or at least know what they are and know how to separate them from "reality" so to speak. I can tell when my fears are irrational or when I'm disproportionately down about something. So then it's easier to just tough it out until it passes, I suppose.

I've noticed since getting sick that I'm actually a lot better at dealing with the real things that come up in my life than I am the things I anticipate might go wrong at some point :p
 
Hi everyone. I'm so thankful to have stumbled upon this group. After reading some of the posts, I feel less crazy! (I've always known I wasn't crazy, but after so many doctors basically tell you that you are, it's hard to always remember.) I can relate to SO many things I've read on here.

I'm been sick since January 2014. My symptoms came on suddenly, a couple weeks after the death of my mother (as you can imagine, doctors have used this as an excuse to blame my symptoms on grief, depression, anxiety, etc.) But if you research Crohn's at all, the death of a loved one is listed as a specific trigger. For reference, I'm 24 years old. Anyway, my general symptoms are frequent bowel movements, nausea, headaches, fatigue, muscle aches, bleeding.....just an overall horribly crappy feeling. The digestive issues are definitely the worst part of it. And I feel horrible every single day.

Every doctor I've seen has given up on me. So far I've had an upper endoscopy, colonoscopy, head CT, abdominal MRI, hydrogen breath tests (3), a million blood tests, and some other random tests. I've tried many diets, pills, hypnosis, acupuncture, and counseling. I've been diagnosed with small intestine bacterial overgrowth (I took medicine and it didn't work) and a stomach that doesn't stretch as much as it should (the medicine for that also didn't work). I even went to the Mayo Clinic thinking surely they would figure something out and not give up on me......I was wrong.

At this point I've seen 4 doctors and all have given up, so I'm at a loss for what to do. One of my doctors even told me that it's possible I have IBD, but it might not show up on tests for 5 years.

I've never been so miserable in my entire life. I KNOW it's not just IBS, and I know it's not because I'm depressed. The only reason I may be depressed is because I'm so sick!! Anyway, I'm thankful to have found this forum. It sucks that so many of us are experiencing the same things, but at least we're all in this together.
 
Hi akgirl, sorry to see you've been having such a rough time. I don't see a pill cam in your list of performed test, and since that's what I'm having done next it's my first thought.

I too have had an upper scope, colonoscopy and a small bowel MRI, and save for a hiatus hernia, nothing has showed up. It's still not a sure thing that I have IBD, but I know others have mentioned that a pill cam can show things that other tests might not.
 
Hi akgirl, welcome to the forum and the club. I can relate to a lot of what you've said - I've been ill for nearly 6 years myself, basically all of my tests have come back normal/inconclusive, and even though my symptoms fit IBD and I respond well to IBD medications, they claim they still don't know for sure what's wrong with me. I've had a lot of doctors also tell me that it's all in my head or I'm just depressed or need to deal with stress better or whatever lame excuse. You definitely sound like you know your body and know yourself, and I wish we were able to give you some answers.

I do have a few ideas for you. Have you and your doctors mainly been looking for IBD this whole time? You might want to explore other avenues, because there are other autoimmune illnesses which can cause similar symptoms. Have you ruled out things like Lupus, Addison's, and Behcet's? If you're not familiar with those illnesses, you may want to look into them further and see if they sound like what you have going on. At the very least, it's good to rule out things like that if nothing else.

And yes, unfortunately, sometimes IBD can hide super well and not show up on tests until years later. I don't mean to discourage or frighten you at all - but as an example, I have an aunt who was ill for at least 30 years and just finally got diagnosed with Crohn's a few years ago. She said that in her case, it took that long for scar tissue to develop, and they were only able to detect her Crohn's once they were able to see the scar tissue. I'm pretty sure that my aunt's case is an extreme example, the vast majority of people get diagnosed much quicker than that! But yes, my roundabout point was, that is correct that sometimes IBD can hide really well.

I hope you get some answers soon. Where are you at right now in your diagnostic journey - are you taking a break from testing or are you pursuing yet another opinion? Whatever you do, I wish you a lot of luck with it and please keep us updated on how you're doing.
 
Thanks for the replies! It makes me feel better just hearing from you guys, because no one is my life really understands what I'm going through.

Izzie, unfortunately I'm really bad at swallowing big pills, so I'm not sure if the pill cam would even be an option for me. The doctor I saw at the Mayo Clinic said that he's not really a fan of the pill cams, and that he thinks it would be a waste in my particular case. You should let me know how it goes for you though! I hope they find something useful.

Cat-a-Tonic, the doctors I've seen have been looking for anything and everything. I even got a TB test just in case (I hadn't had one of those since elementary school!). I'm going to research those other illnesses though.....I know my symptoms are pretty broad and general, so it could be anything. IBD just seems to be in line with all of my symptoms. One doctor told me he's 99% sure I don't have Crohn's and another told me that we can't completely rule it out. So who knows?! I've also had a doctor tell me that I just needed to exercise more. 😑 I can't imagine being ill for 30 years!! I'm glad your aunt finally got a diagnosis. I'm extremely tired of tests, but I've even more tired of feeling like this, so I'm unsure what to do next. I live in Alaska, and we don't really have that many options for healthcare providers here. I have an appointment next week with a primary care doctor, because I've never actually had a primary care doctor, and I figured it was time. So maybe she'll have some new ideas.....I doubt it, but you never know.

It's crazy that so many of us are living undiagnosed. You'd think with all the technology today, they'd be able to figure it out!
 
I'm having an angry day.

Do you guys get this? On a day that isn't worse (but certainly not better) than any other day, and it suddenly just boils over and you're SO PISSED?

That's the day I've had. Really sick of having a sore throat 24/7. Really sick of everything that comes with this, actually. And the constant waiting isn't exactly helping either.

I treated myself to new perfume and nail polish today to curb the rage. Didn't really work, but at least now I have pretty nails and smell good while I rant and rave about the injustices of health care :p
 
Izzie,
I don't get mad so much, but I'm often told how angry I look when I'm not feeling well. Particularly at work. Makes me wonder if pain just gives me RBF.

I am exhausted today. I have slept most of the day and still feel my eyelids drooping.

Just to chime in with everyone else: all of my labs and biopsies have been normal over the course of the past year (aside from the even that started this journey, which showed I had a high WBC). It is a little frustrating because although my GI is pretty much convinced it is Crohn's, he doesn't want to label it as such because there is no pathological findings to back it up. However, I count myself lucky that he wants to treat me for Crohn's regardless. I have been on Budesonide (Entocort) for about 6 weeks now, and while I was responding splendidly for a couple of weeks there, this past week has not been great. The fatigue gets me more than anything. That and having a tender tummy and back. Makes lying around all day uncomfortable, even though I want to do nothing but that.

Hope you all get some answers soon, or at the very least some relief. Lots of hugs to all.
Jen
 
That's really great that you've gotten treatment at least. Hopefully it'll continue to be effective.

Me? I spit blood this morning. Fuuuun. I've had a constant sore throat for months now so I figure it's probably the GERD. That I don't have, you see, because I'm just "stressed"...
 
You poor thing!

It's tough even when you have a supportive GI. I constantly feel like a hypochondriac, but he at least believes me enough to listen and try and treat what I'm telling him about. Don't quit your search for a GI who meets all of your needs. I lucked out with mine, and don't I know it after hearing all of the horror stories.
 
Hi akgirl! :)

So, after this weekend, I've decided that things possibly aren't that bad, and maybe it is all in my head. My OH got up at 6 every morning in pain and needing the toilet. This doesn't happen to me often, maybe three or four in 9 months. But, I did sleep with a hot water bottle on my stomach last night, and had a new pain that felt like somebody was crushing just under my ribs! Hey-ho. Can't dwell. The GI appointment is on Thursday.

Also, I am being shipped back to Sweden by my OH as a birthday present. I'm sad he won't be coming with me, but means I get to see my best friend again! :) He said I needed it and would be beneficial. But damn Swedish food. It's too good to resist...
 
Surely your problems aren't all in your head just because your boyfriend's are worse?

As an actual swede I can honestly say I've no idea what there is to like about Swedish food xD
 
Izzie said:
Surely your problems aren't all in your head just because your boyfriend's are worse?

As an actual swede I can honestly say I've no idea what there is to like about Swedish food xD
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He's properly diagnosed Ulcerative Colitis, and I just find myself thinking that maybe mine is all in my head. That saying, my pain has got a lot worse in the last couple of days. Thank god I'm going to the GI on Thursday! I've got to start writing down everything, as I'm terrified I'm going to forget something. Of course, it's only going to be the basic outline of things. Hey, we will see. My GP is quite concerned, but let's see if the GI is going to be the same...

Why!?! I think I'm just quite a seafood-y type of person. I love the herrings in mustard, my friend kept making me eat them for breakfast on the crackerbreads - which are 100x better than English ones - they're pretty much cardboard here - no flavour, same texture...
Plus the bread. Everybody seems to pride in making bread, even in the uni campus shops. PLUS THE CAKE. And the pick and mix. However, I think I am going to have to watch my diet! Shame the chocolate milk so good.. Not sure I'm going to avoid that. ALOE VERA DRINK. Waaaaaaaaaaaaaah. I think I'm too early for the Christmas market too... I think I need to stop rambling and thinking of food and go and eat my breakfast. ;)
 
Honestly most people I know only eat herring on midsummers and Christmas because it's practically mandatory :p And I've watched too many children cough into pick and mix that I just can't eat it anymore. Aaaaaand aloe vera drink is chunky. Bread though, I'll agree on that one. We do have some kind of sandwich addiction going on.
 
Izzie said:
Honestly most people I know only eat herring on midsummers and Christmas because it's practically mandatory :p And I've watched too many children cough into pick and mix that I just can't eat it anymore. Aaaaaand aloe vera drink is chunky. Bread though, I'll agree on that one. We do have some kind of sandwich addiction going on.
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Yup! I attended a Christmas party which turned into a uni party.. and Christmas tradition is so nice! I love herrings and I don't know what you call them but they're boiled eggs with like a prawn cocktail on top and then topped with caviar.. They're served at Christmas?

Ugh, I think at the uni campus they have plastic lids, and not so many little kids around that area!

I have sandwiches today, and definitely not looking forward to it. It's only ham. :(
 
Whine ahead: I ate popcorn and paid for it :( Game of Thrones season 5 came out on Amazon, so dh and I made popcorn to watch the first episode Saturday evening...then Sunday I had pain and D and just blech.

Otherwise, I think the Prozac is making nauseated, or else it's the antibiotic. And I've gained 2 lbs in the past week, despite not eating much. Joy.

Kelleh - Have fun on your trip!! And stop comparing, your pain is yours alone.

Atgirl - hiya!

everyone else - hope you're doing well and sorry I'm not being personal!
 
@Wildmtnhoney - Good to know about GoT. Although, have to admit, I haven't finished season 3 yet, and still need to start 4. ;) It's just my OH wants it, so I may treat him to it.

Prozac/Fluxoetine will make you feel nauseous, but then so can antibiotics. Hope it clears up for you soon.

I guess you're right there, but I am becoming increasingly anxious about going to the GI on Thursday and I am totally convincing myself they're not going to find anything, and I'm just going to be told to live with it.
 
kellehbeans said:
@Wildmtnhoney - Good to know about GoT. Although, have to admit, I haven't finished season 3 yet, and still need to start 4. ;) It's just my OH wants it, so I may treat him to it.

Prozac/Fluxoetine will make you feel nauseous, but then so can antibiotics. Hope it clears up for you soon.

I guess you're right there, but I am becoming increasingly anxious about going to the GI on Thursday and I am totally convincing myself they're not going to find anything, and I'm just going to be told to live with it.
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Well if they don't find anything at your first GI appointment, that doesn't mean you're fine. Trust me, I know :p

Besides if your GP thinks something is up, and with the problems you've been having, I think it's unlikely that it's all in your head. Even those who do have physical problems that come on because of stress or whatever aren't "all in their head". They're still problems.

Make sure they hear what you're saying at the GI, is all I can tell you. And if they come up with some "diagnosis" or say it's IBS, ask them to explain why they think that's what it is instead of any number of other things it could be. Accepting what doctors say without explanation wasted a LOT of time for me at the beginning of this whole mess.
 

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