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I guess i'm just not describing it in the right way, but either way, it feels weird and it keeps coming back throughout the day, but not for as long as before!
 
Kelleh, there are a few types of exercises I can't do or have trouble with. The two main ones are high-impact exercise, and abdominal exercises. High-impact stuff like jogging/running really makes my arthritic hips painful very quickly. I can't even jog 1/2 mile anymore, even that short of a distance now causes pain, and sometimes even walking (particularly fast walking) can also put me in some hip pain. And abdominal exercises make both my guts and my GERD angry. Even exercises that aren't specifically for the abs can affect my guts - things like riding a bike aren't always the easiest. As long as I keep my bike ride well under 10 miles then I'm usually okay. But it seems like riding a bike puts a lot of pressure on my abdomen. All that balancing and steering affects the abdomen more than you'd think, and if I'm on my road bike that means that I'm sort of crunched over forwards so that makes it even worse. So these days I mainly just ride my bike to the gym and back home. It's 3.26 miles each way from my house to the gym and back again, so a little over 6.5 miles total, and that's usually fine on my guts. But any more than that and I'd pretty quickly end up with an angry gut and/or a reflux attack. I think the worst exercise that I've come across for my specific issues is tennis (which is sad because there's a free public tennis court 1 block from my house). Tennis involves running around after the ball, so it's hard on my hips, and all that bending over to pick up the ball and tensing my abdomen when I hit the ball is really hard on my guts & GERD. The last time I played tennis, I ended up having both a reflux attack and painful hips - not good! :(

The types of exercise I find easiest - weight lifting is my #1 favorite. It's surprisingly easy on my joints, and as long as I don't do lifts specifically targeting the abdominals, I'm usually mostly okay GERD-wise and guts-wise. (I sometimes get the burps when doing weights which is my GERD warning me that I'd better wrap things up fairly soon, but typically that's it, I usually don't get anything worse than the burps and I don't even always get the burps.) I also find bike riding easy on my joints, so as long as I do short-ish rides and avoid gigantic hills then my guts are okay too. I can do kayaking just fine - you'd think that paddling would put some pressure on the guts, but I mainly feel it in my shoulders and my guts have always been fine with it. I like ice skating and snowshoeing in the winter. Snowshoeing sometimes puts pressure on my bad hips, but it's apparently the "good" kind of pressure that helps strengthen them without hurting or something along those lines. It's like, I definitely feel after snowshoeing that my hips have had a workout, but there's not pain like there would be with jogging. So I guess snowshoeing is good for me. Ice skating doesn't hurt my joints although I am very careful not to fall, because I'm scared that a fall on my bad hip would be horrible. So I'm very careful and cautious when I skate - I used to be able to skate backwards and do back crossovers, but I don't do those anymore because I'm afraid to fall.

Types of exercise I can do but don't like - yoga. :p I think we've talked about this before. I'm seriously not flexible and I feel like I need more intensity in my workout than yoga can provide. So I feel like I fail to do even the easier poses correctly because of my dire lack of flexibility, and I don't feel like I'm getting a good workout because I'm not sweating nor breathing heavily (it's a workout that encourages slow breathing which is basically the opposite of what I am looking for!). I've tried yoga, I really have, but it's just not for me. I definitely do some stretches after a weights or cardio workout, I'm not ignoring stretching altogether, but proper yoga is just not happening. It just feels like a fail all around. Heck, I'd rather play tennis. :p
 
Wildmtnhoney said:
Kelleh, no idea on the butterfly-ish feeling, sorry

Izzie, I did a barium swallow, and yeah, it gave me D :(. Not instant, but shortly after we were all done. And it's weird, because it turns your stool WHITE. So, white D for the rest of the day was what I had.
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Yikes...

I guess I'll have to take some meds and hope they help. Because a) I have a 2-hour meeting I have to go to where I basically can't get away for bathroom visits and b) it's a 1+ hour drive to get home.

There is a 5 hour window though so maybe it'll settle in that time.
 
Snowshoeing? What is that?! I've not even heard of that! I find cycling easiest, but I find I also don't put a lot of effort into it if it's on a static bike. On my own bike is a different story, but sometimes it's just hard to get the 'get-up-and-go' for it. Especially now I have nobody to really go cycling with. Also, I can't ice-skate to save my life! You really are an outgoing sports person! I was just a lazy kid/teenager. I wouldn't even do dance at school.

I find lifting does upset my stomach a bit, but I still do it. It's not as bad as some really jumpy cardio. Boy, do I miss Zumba. Those were the days.. Haha.
 
Kelleh, here's a link for you about snowshoeing:
https://en.wikipedia.org/wiki/Snowshoe

It's basically a big lightweight thing you strap to your foot which helps you walk more on top of deep snow rather than fall down into it. I'm not sure how much snow you get there in the UK, but here in the upper Midwest of the US, we get quite a lot of snow in the winter and snowshoes are really helpful especially for when I have to walk my dog on a snowy day. I got some snowshoes a few years ago and my neighbor also just got herself some snowshoes, it's a fairly common thing around here. I see a fair number of people on cross-country skiis walking their dogs while skiing in the winter as well. And yeah, we get enough cold and snow here that I can ice skate all winter long and there are free outdoor ice rinks that are maintained by my city, so it's pretty nice. We have long, cold, snowy winters here so may as well make the best of it! :)
 
We basically get next to nothing snow, and when it does snow, it is really pathetic and people panic like mad, and all our public transport basically gets shut down. It used to be awesome as a kid though, as even a light sprinkling used to mean school was closed. :p

That does look like a really fun thing to do! I love the snow.
 
Kelleh, we've had a few blizzards in recent years that have shut down our public transportation but it has to be like 18+ inches in a single snowstorm for that to happen. Schools here won't even shut down if it's less than a foot of snow that falls. Although during one really bad blizzard basically the whole city shut down, I didn't have to go to work, no buses running and cars strongly encouraged to stay off the roads, only essential vehicles like emergency vehicles and snowplows on the road - but then I did see a pizza delivery vehicle! :p Only the essential services, plowing, ambulances, and pizza. Priorities. ;) Ha ha.

Oh, and I was never really into fitness when I was in school, either. Like, I never participated in any sports at all, ever - I kind of hated sports and exercise back then. It wasn't until I got sick with this presumed IBD that I realized how important my health is, and once I got into remission I started working out and I really loved it. I used to find exercise boring and hard and tedious before I got sick, but now that I know how important my health is, I find it fun and wonderful and necessary. And I feel like fitness should be fun and I like trying new things, so the more ways I can have fun with fitness, the better. :) I'm planning to try downhill skiing for the first time ever this year. Hubby said he'll help teach me since he's been skiing in the past. So that's my upcoming fitness adventure! At least if I fall while skiing, I'll just fall on snow and hopefully won't hurt my hip. Falling on ice while skating seems much scarier than falling on snow while skiing, so I think skiing will be okay.

Izzie, for what it's worth, I had been really worried about Barrett's esophagus as well particularly when my GERD was acting up all the time and really out of control. For me it was also basically all day, every day, for quite awhile and I couldn't imagine that I was going to get away without any long-term damage. But when I had an upper endoscopy, everything (including the biopsies) looked absolutely perfect. No damage, no scar tissue, no inflammation, no Barrett's, no pre-cancerous cells, nothing at all to worry about. The only thing that scope found was my hiatal hernia, everything else looked great. So please try not to worry too much - my GI explained that you have to have GERD going nuts basically 24/7 for years and years in order to develop Barrett's esophagus - he said basically young people almost never develop Barrett's because of the amount of time it takes for Barrett's to occur. Hopefully once you have some tests and know exactly what you're dealing with in terms of your GERD, you'll be able to treat it more effectively and get it more quieted down (like mine is, for the most part anyway) and then you can stop worrying so much about that stuff. :)
 
Yeah my upper scope (in April) looked fine too. So I guess that's good. I swear some days I get so petulant about all this. I'm like a 2-year-old who doesn't want to deal with it :p I just want to feel the same way I did before and not have to take medication or change my life or do anything.

Which is childish and stupid, I know.
 
It's not childish or stupid. It's completely understandable. You went from essentially normal to having horrendous symptoms all the time - that's extremely difficult for anyone to deal with. You're facing the problem as best as you can which is all you really can do. It's totally understandable that you want to go back to a life of not having these symptoms. Believe me, I have the same thoughts! It's sort of like grieving. You need to grieve the loss of the health and life you once had and find a way to accept that things are different now and you aren't going to be able to go back to that blissful ignorance of not knowing what it is to be sick all the time. It's hard, I know. But it's not childish nor stupid, it's normal and necessary to feel that way.
 
I started having medical tests to try to figure out what was wrong with me the summer I turned 16. Nothing was found at that time and the tests continued into my junior year in high school until I asked my parents and the doctors If I could quit taking them because all my tests continued to show nothing abnormal.

After I moved into the dorms when I was 18 was when they finally found something to diagnose me with. I was relieved, but also in shock and it took awhile for me to accept that I'd been diagnosed with IBD along with the need to now regularly take medication. Even now, almost 20 years later there are times I just want to throw in the towel with this medical challenge (or give it to somebody else). But, all I can do is the best I can.

:hang: We're always here to talk to if you need it...
 
So would it be a horrible idea to take extra meds and Gaviscon and such before the x-ray? Not really in terms of drug interactions or anything like that but I'm wondering if I leave it as is they'll see more of the damage? Rather than if I make it calm down, I mean.

Combination of factors just made it kick into high gear tonight. Had a teeny tiny piece of dark chocolate at lunch. Baaaad idea. Was at the dentist and they put me reaaal low and tilted backwards in the chair for like 20 minutes which was reflux hell. Drank too much black tea, ate lasagna with tomatoes.
 
@Cat - We can get away with 0.00008 inches of snow and still get the whole of England shut down. It's really pathetic how we deal with it in this country.
Oh my gosh, I'd love to go snow skiing or snowboarding! Slightly jealous. Can't wait to hear how that goes when do you do go! I am pretty terrible at the majority of sports, so I'd probably be absolutely pants. The only real thing I do play (or am at least practicing) as I have said before, is golf. I am getting much better, especially for only playing for 2 months! It isn't always brilliant on my stomach though, as when I follow through, I seem to over-twist, and it does rile my guts up a bit. Not enough to make me get D, just some annoying pain. I know my boyfriend can't play golf when his stomach is bad. Even he says it isn't that low-key of a sport. (And here was me thinking it was!)

I went to the gym again last night! Although it does hurt, 45 minutes seems to be enough to keep me interested and also enough to make me feel better about myself.

@Izzie - You are NOT a petulant child! If you are, we all are - especially me! Look at how many times I've been close to giving up because I can't be bothered to deal with it! I think that would just make it all go away - but it doesn't! Keep on fighting. As cross-stitch gal said, we are all here for you to vent at, and we're always here to talk. Good luck with today. As for your Gaviscon taking before your pill cam, I probably wouldn't take it beforehand. Probably best to check, but I personally wouldn't. I'd just suffer and then take loooooads when I got out!

Update 2 on my Venlafaxine: Took it but got in bed before it could make me feel sick. However I woke up a stupid amount of times. Most of the times I woke up, I had my arm raised in the air and I was tickling it with the other! I feel absolutely mental! Woke up at 5:30am and that was it, I just couldn't get back to proper sleep.
 
X-ray went well. The barium was icky but not as bad as I had built it up to be. Everyone was super nice and it was fast :) So, happy about that.

However, to return to my whiny mood, I had to cancel an appointment later today (haircut) because I do kinda feel a little icky stomach-wise from the barium and all, so I emailed and said something had come up, didn't want to get into details.

Now, I had gotten this appointment on kind of short notice, but nothing I perceived to be a big deal, I didn't nag or anything it was just their first available appointment. So anyway, I emailed, apologized, offered to pay any late cancellation fee - no problem.

And got this long and angry, ranty, rude thing back saying how they had rearranged their WHOLE schedule to squeeze me in and how I'd cancelled too late and can I really not come in because they made SUCH an effort and basically making me out to be a horrible person. AND charging me not only the full fee, but the full fee AND a late cancellation fee.

...I feel like calling this person up and screaming in their ear about how they could try and deal with my stomach illness for a day before they come talking to me about effort.

Like I'm so freaking sorry that I made an appointment when I thought I'd be okay enough to show up. So freaking sorry that I put my health and well-being before other people's convenience for ONCE.

I'm super upset about this but I don't think it's worth getting worked up over in the grand scheme of things.

One thing this all has taught me is to not assume that people are trying to be difficult. Everyone has struggles we don't know anything about.
 
@Izzie - Just don't even bother going to them. If they're going to be that rude, then they've lost a customer. Don't let them win.

Did you get any notes from the radiologist like if they could see anything?
 
kellehbeans said:
@Izzie - Just don't even bother going to them. If they're going to be that rude, then they've lost a customer. Don't let them win.

Did you get any notes from the radiologist like if they could see anything?
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Nope, they didn't say anything. Just said they got good images and that I was an excellent patient :biggrin:

I get funny when I'm nervous, so the nurses had a bit of a laugh.

She said my doctor will get the results in a week, but I have a phone appointment for the 20th so I guess I'll hear about it then.

I did notice though that when I had to lay down for some of the images, the barium I had just swallowed came right back up :p My esophageal sphincter is just not doing its job properly.

And yeah I immediately replied that I'd pay their fees but that I won't be requiring a new appointment anytime soon... I just hate it when people are rude and make you feel guilty.
 
Did you not ask them to say if anything was wrong or should you be worried? I know I would have, I am far too impatient. I wouldn't want to wait until my phone appointment, I'd just call next week when they're in. :D

That sounds pretty awful! To me, it sounds like a hiatal hernia!

Don't let them make you feel guilty. A good salesperson (or hairdresser in this case) would never do that to their customers, otherwise they will lose money. Idiots, the lot of them.
 
I've basically already been diagnosed with a hiatal hernia from my gastro but the IDIOTS at my old hospital forgot to chart it and my GI thinks it's unnecessary to check again because he's so convinced it's just stress.

It was my GP who referred me to this x-ray.

I think that if I have a large hiatal hernia they'll see it on this x-ray, but if it's smaller they might not. So I might have to ask for a pH-test to confirm a GERD/hernia diagnosis.

But yeah it sucks and feels so worthless taking meds for since a) they don't help enough and b) it's really a mechanical issue at heart. If they do confirm that diagnosis I may just consider a LINX procedure because it sounds like the best and least radical surgical option to me.

And then there's... whatever else it is. IBD, IBS, whatever. But I suppose the rest of my gut issues could be connected to GERD too since it kind of makes the entire system go whack. It all came on at once, so. Who knows.
 
I think small or not, they may be able to see it. Let's just hope they find something. My Grandma has a large hiatal hernia, and her symptoms were terrible, she'd pass out from being sick, she couldn't go to bed because she was being sick. Eventually, they found what worked for her, which included the oral suspension Gaviscon. She is much better now, but her burping whilst eating or after tea is insane! I thought I was bad!

If you don't think something works, don't take it. Seriously, it's not worth the trouble. I was taking Buscopan cramps and I think the only thing they've done for me is numb the pain a bit, but also bunged me up by making my colon absorb all the water!

A lot of stomach issues can be tied with GERD, but let's just wait and see what happens with your results. :)
 
When I don't take PPIs I bleed, so that's not a preferrable scenario :p

But yeah, I think we're actually on to something here, so I'm hopeful something will come out of it all.

Also my burping is INSANE on bad days. INSANE. Must have something to do with acid because if my symptoms are otherwise under control the burping is managable too.
 
No, that's not the best way, and I don't think I could even try to explain why that happens. If they stop the bleeding, then they are doing something, so hold on tight to them and keep on taking them, unless they tell you to stop. Are they aware you take them?
 
Yeah. They don't want me to take a milligram over 40 a day though and it just doesn't seem to cut it.

My GI wants me to stop taking them and take Ranitidine instead but I'm not going to have more bleeding just because he's a donkey's behind in human form :p

My GP thinks I should stay on them on the current dose until further notice, basically.
 
Why do you not try what your GI has suggested? Maybe it'll help you more if you give it a chance? I think the GI will probably be the better guidance to go with as they are the specialist, whereas a GP is a jack-of-all-trades, master of none.
 
kellehbeans said:
Why do you not try what your GI has suggested? Maybe it'll help you more if you give it a chance? I think the GI will probably be the better guidance to go with as they are the specialist, whereas a GP is a jack-of-all-trades, master of none.
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Because the advice he's given me he's given with the basis of "you don't have anything anyway but if it makes you calmer to take something, take something less effective/strong"

Like, that was literally his reasoning.

I'll gladly take a GI's advice when I see one who isn't a huge bag of... well, something :p

I did try it a few months back and ended up in the ER with pain/bleeding again, so. Not doing it again :p
 
I still think you should try it, because he may not just be being a trollop for once. Obviously giving you something, he DOES know something is up and not ready to give up. In my experience, if you do what they ask you to do for a set amount of time, they'll start taking you more seriously as their suggestions have not worked. I'm pretty reluctant too, especially when my GP was being a cow, but I did it and proved her diagnosis wrong.
 
kellehbeans said:
I still think you should try it, because he may not just be being a trollop for once. Obviously giving you something, he DOES know something is up and not ready to give up. In my experience, if you do what they ask you to do for a set amount of time, they'll start taking you more seriously as their suggestions have not worked. I'm pretty reluctant too, especially when my GP was being a cow, but I did it and proved her diagnosis wrong.
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Well I did. And ended up in the ER with bleeding and shitty blood work. Which he dismissed completely when I pointed it out to him. Everything is a coincidence to this man :p

This is literally how the conversation goes
Me: I did what you said and ended up in the ER with worse anemia than before like three days later.
Him: That's probably nothing.
Me: I feel way worse though.
Him: Well you see everything is connected, when the mind is stressed then so is the body and you can imagine all kinds of things.
Me: How am I imagining anemia?
Him: Well that's a coincidence, women have periods so anemia is totally normal.
Me: Even though it literally only ever drops when I also have black stools, and pain, and stopped the PPIs, and have had periods for almost 15 years and have never been anemic before in my life.
Him: You have ADHD, so this is probably psychosomatic.

Like, I wish I was exaggerating here but I'm not :ylol2:
 
I wish you were exaggerating too, but that does sound pretty bad. Still, by standard, I would try what the doctor said and find that it doesn't work.

It's depressing. My body doesn't really respond to low-FODMAP (it did reduce pressing-down-on-my-stomach soreness, but not the pain), doesn't respond to IBS medications (although, with Buscopan cramps, it seemed to give me that weird discomfort that I mentioned yesterday, as today I do not have it, and I'm back to my normal pain & discomfort), and PPI's didn't really help with my acid reflux when that was out of control. I've just proved to them I don't respond too well to it all, but they are just stumped at me because of my symptoms but my tests come back normal. I think that's why if I get my colonoscopy back normal as well as the ultrasound (which I know is normal), that I'll be offered an MRI, which I welcome. I don't really want to go through with it, because I have SO many piercings, and some of them I can't get out alone. I'll have to go to my local piercing shop and get them to help me.

I just ate a massive lunch. It was SO good. But after I started eating it, stomach bubbling, REAAALLLY loudly happened. My manager just bought me coffee. I'm going to be in the loo in the next half an hour - I know it. Although, not worried about that, because I am back to my normal self before the diarrhoea strikes of really stupid pellet poo where I go SO many times a day.

Either way, hoping now I won't need a big dinner as I can't afford it and I'm meant to be going out tonight with some friends. :p
 
Izzie, I'm glad the test went well and I hope you get the results soon. With the contrast coming back up your esophagus like you described, surely they'll see that on the results at the very least. As for that hairdresser, how incredibly horrible of them! I really don't understand rude people, I've dealt with a somewhat similar rude email recently. I had really wanted to write back a rude reply of my own but it seemed like the best route was to just try to ignore it and move on. (My rude email was, I had some brief interest in a car that was for sale at a local dealership, but when I saw the accident history on the car it was pretty bad so I was no longer interested and I sent a very polite email to the car dealer letting him know - the car dealer got so rude and condescending and misogynistic with me in his email response, he was like, "Um, are you stupid, did you even see how low the price is? Who cares if it was in an accident! You're being stupid for not buying this car, you dumb idiot woman!" It was longer but that was the gist of it, seriously.) Sometimes rudeness is called for but most of the time people have the option to be nice or rude, and I really don't understand why they choose to be rude and not understanding. And hey, if they charged your credit card for the haircut, you can always try to contest the charges with your credit card company. If you explain your side of things and they agree with you, they may go after the hair salon to get you your money back. And I bet that bit of hassle would maybe be enough to get through to the hair salon that they shouldn't treat their customers like this.

Kelleh, don't get me wrong, I'm terrible at sports and athletics as well. Riding my bike, I'm definitely one of the slowest people out there. I used to just have a cruiser bike, and when riding that bike I was surely the slowest person in my city. Then I got my road bike which is faster, and now I'm like the 3rd slowest, ha ha. :p I still have 70+ year olds passing me regularly, I'm not fast at all. I'm not great at ice skating, either. My main goal is just to not fall, so I'm pretty good at that, but I'm not fast and I am certainly not graceful and can't do any tricks nor skate backwards or anything remotely fancy. I can go in a straight line, slowly, while not falling - that's my expertise, hah. The few times I've tried actual sports, like volleyball - I'm super terrible. I have weak, bony wrists that just aren't meant to hit a volleyball, so I just end up with horribly bruised wrists. The few times I've tried tennis, I always am amazed when I actually hit the ball in bounds somewhere in the neighborhood of where my hubby is (often I hit it way far away, out of bounds, sometimes even out of the tennis court completely, like over the fence and away off into the trees and that ball is then lost forever :p ). So yeah, I'm not really particularly skilled at anything athletic! I can lift weights, and I do try really hard to have good form. I think weight lifting is my favorite not only because I feel awesome and powerful while I'm doing it, but because it's something I'm not automatically terrible at. It's hard to be terrible at weight lifting as long as you pay attention to form. But yeah, for most of my athletic endeavors, I'm just trying to have fun and get some fitness in, if it were competitive then I'd absolutely end up in last place. :p I'm like the black sheep in my family - my mom and my brother in particular are both very athletic and it seems to come naturally to them. Me, on the other hand, I'm naturally extremely clumsy and klutzy, athletics do not come naturally to me at all and I really have to work at athletics to work my way up from horrible to mediocre. Don't get me wrong, I love fitness - but I'm pretty terrible at most sports.
 
Cat - At least you enjoy it - that's the main thing! If I'm not so good at something, I get terribly bored. I did used to play rugby (until they said it was too dangerous for women and tried to get me to play tag) and netball when I was younger. Badminton is pretty good for me, but haven't played tennis for a long time! But, I'm same with naturally non-sportiness. But that's probably due to being plonked on a computer from the age 4 - which wasn't so bad for my parents as I matured and learned very quickly and plus I stayed out of trouble. :p

Would IBS cause a pain (scratchy, stabby, crampy) in one place specifically on the large intestine? Especially when it's full? Anybody able to describe where they get their pain and how it feels?
 
Kelleh, as of this coming Friday I'll have been ill with this presumed IBD for 6 years (Oct 9, 2009 was when I first got suddenly ill and have never been the same since). And since that time, I've had a "pain spot" in my LRQ that hasn't moved one millimeter. I could pinpoint it for you, I sometimes think I should get an "x marks the spot" tattooed over my pain spot since it does not move. My pain spot is more dull than stabby, most of the time anyway. It's just sort of like a dull pain that can get sharper at times but is never super sharp. Sometimes it feels a bit throbby. And yes, it tends to be worse when I've eaten a lot, it's kind of like I can feel large food pieces sort of moving through it. Sometimes, like when I'm in remission, it's pain-free but I can still tell it's there if that makes sense. Like, I'm always aware of that spot even when it's not actively painful. Since my pain spot is in the LRQ, you'd think that it's in the right colon or the TI, but they've never found anything in that spot (not even on biopsy) so I don't really know what it is. But it's clearly not IBS causing my pain spot.

And yes, I enjoy athletics even though I'm terrible at most of them. Like, riding my bike, I may be slow, but I try to ride in beautiful places like along the lake or in the arboretum, and I take in the beautiful scenery and breathe the fresh air and soak up some sunshine. It doesn't matter how fast/slow I am as long as I can do stuff like that. And with stuff like tennis, I end up laughing so much when I hit the ball ridiculously badly that I think I end up burning more calories from laughing than I do from the actual tennis part of things. Music is a big part of my fitness needs as well - if I just have some good music with a good beat then I can do any workout. So for example, when I'm ice skating, on my headphones I put on good music with a slightly slower tempo (don't want to skate too fast!) and just sort of feel the music and get into my own head for awhile and settle into the music and the workout my own thoughts. I'm a massive introvert so workouts that are just me, my music, and my own thoughts - that's ideal for me. It's like unwinding. I can just go and shut the world out and break a sweat and feel the music and not have to talk to anybody and just be by myself for a bit, that's just perfect for me. That's how I am when lifting weights as well, being in the gym by myself with just my weights and my music, that's my happy place. Some people like working out in groups or with friends, but not me, I'm definitely a solo exerciser.
 
@Cat - That makes me feel a bit better that I'm not just crazy. I'm just sure IBS doesn't create ONE spot of pain, but it covers the whole thing. I know that when I get trapped wind. I would then say that is IBS-related pain, if that's the case.

Mine is LLQ, but not so low it's my ovaries or anything. It hurts when it gets lower down too, but that usually just causes a mild backache and a little bit of cramping. I don't think my GI is going to be one of those ones that will allow me to have a course of steroids to see if I react to it. I guess at least it'll get sorted on the scope, if there is something there. Although, I did get a pain left above my navel, but that seems to have died down in the last week or so, so kind of thankful for that. The thing is, I don't really match the symptoms for UC or CC, because I don't really bleed, unless this is just one big lead up and it developing. Who knows.

I love cycling, we have quite a lot of cycle trails here, all by the canals. They are pretty beautiful, but not so good for a woman on her own! I also need music to workout. It's nice you have a way to leave everything behind. I can be the same, especially with music. I do enjoy working out, but sometimes it just takes more than a kick up the backside. Again, I prefer to be on my own, unless it's cycling out in the wild and of course if it's a 2-player sport!

My friend just text me to say I am going to need warmer clothes for Sweden this year. She said they've had a real mild summer and in the furthest North, they have already started to get snow. I am really hoping to see some snow when I am over there! So excited! :D
 
Kelleh, I have a feeling it's going to be a snowy winter here as well. Last winter we had relatively very little snow, and this year there's the "el nino" weather pattern thing which supposedly causes much more precipitation. I like how pretty snow is, and I like to do outdoor fitness like snowshoeing etc, but I really hate driving in it. I drive a very small car with small tires and although it's a wonderfully reliable car that gets great gas mileage, it doesn't do so great in the snow. So I'm not super jazzed about the potential for having a lot of snow this winter.

Is your area dangerous, is that why a woman on her own shouldn't go cycling? My city has a lot of bike paths, and while they can be a bit dangerous at night (there have been a handful of assaults & robberies on the bike paths but they all seem to take place at night), they are fine during the day. My city is VERY bike-friendly and everybody rides bikes here, so the bike paths always have many other cyclists, walkers, joggers, etc on them at all times. And it's nice having paths that aren't on the roads. I can ride my bike from my house to the gym over 3 miles away, and I only have to cross one road (and that's the road that my gym is on). Other than that, it's literally all bike paths the entire way from basically my front door to the gym's front door. It's super convenient! And safe for a woman by herself. :)

With UC bleeding is definitely common, but with Crohn's colitis (or other types of colitis, like microscopic colitis) you may or may not bleed. I am not a bleeder myself except for when I have internal hemmies, apparently (every time my bleeding has been investigated, it always comes back as hemmies - and my bleeding is always bright red and goes away with steroid suppositories, so hemmies makes sense). Long story short, you can still have IBD even if you're not a bleeder.
 
I missed the snow last year and I even went in December last year! I'm going slightly earlier this year, but judging by my friends comment, I am feeling quite hopeful.

It's not so much dangerous, but you can never be too careful. Especially along the canal path when you're a long way from a main road or main walkway. There's a lot of drug-smokers along our canals, especially around certain areas. It's not always the most pleasant of places. The best time to go on your own is probably during an extremely sunny weekend, where everybody is out on their bikes with their children and families. If you cycle on the road, you get a barrage of abuse as everybody seems to have a problem with cyclists. Some cyclists attitudes around here are questionable though.

Really? I thought with CC you have moreorless the same symptoms as UC. But I'm guessing, it can be patchy, so may or may not be so bleed-y (sorry, I'm not great at medical terms when I've been at work for 8 hours ;)). MC I know causes watery diarrhoea, which really isn't my case all of the time. I just have weird mush that's like fluffy when I do have it. Although, my inflammation in my haemorrhoids and rectum didn't actually respond to Pred as well as the doctor wanted. It helped a bit, but I just don't think it was a high enough dose, or I wasn't on them for enough time. I hope they can get my fissures sorted etc. I don't think my fissures are in the place for 'normal' people. They're more at a 4 o' clock position and 7 o' clock... and I think I have like a 12. HAHA, this sounds so weird talking about my butt as a clock. I just found this was the best way to describe. :lol:
 
Ah you guys are inspiring me to do more active things :D

These days I mostly do dog walks, but I want to do more.
 
Thanks Izzie, glad I can be of some inspiration! Sometimes I feel like I talk too much in here about fitness. I do keep a fitness diary in the diet & fitness section of the forum - the link is here:
http://www.crohnsforum.com/showthread.php?t=47421

(Yes, that thread is mostly just me talking to myself, but I still try to update it regularly to keep myself accountable. I get wayyy rambly in that thread, you've been warned. ;) )

I'm doing a dog walk tonight too! Really nice weather today, sunny and warm but not hot. Perfect for walking.

Kelleh, wait, so is the 12 at the front or the back? Like, would the 12 be pointing towards your navel or your bum crack? :p If the 12 is at your navel, then my latest hemmie was also at about 12 and just inside the anal sphincter. I think my fissures usually tend to be around the 12 as well. I never really thought of it as a clock but I'm totally going to do that going forward!

How are you guys doing today? I'm okay. Guts are pretty well. I'm trying to lose some weight so I've been eating a bit less this week and trying to eat healthier. So far it hasn't been going too badly. I have cut out some junk food (donuts) and have been eating healthier in the mornings (oatmeal with chia seeds soaked overnight in cashew milk - it's yummier than it sounds and I add fruit - I have even got away with eating strawberries twice so far this week!). Basically I'm just trying to eat healthier, less, less snacking, and do something active every day (on rest days I'll still walk my dog). And trying to do little things like, take the stairs instead of the elevator at work. And, if I have to use the restroom at work, I've been making myself take the stairs most of the time to get a bit more fitness in that way. My desk is on the 3rd (top) floor of the building, so when I can I walk all the way down to the basement and use the bathroom down there and then walk all the way back up the stairs. If I can get myself to do that a few times a day then I feel like I'm not just sitting at a desk all day and doing nothing active. It's just a few changes so far but so far so good. I lost 1 lb but then I ate pizza for dinner last night, oops, and I think I gained it back. Not going to let setbacks stop me, though. I already have a good handle on my fitness, I just need to walk around more since I sit at a desk all day, and I need to snack less and get a better handle on my nutrition. Baby steps!

Oh, and I think I told you guys about how my cat is on valium? I'm just not sure if it's working. She's still grooming her bald patches pretty regularly. The valium at first makes her silly, she acts like she's drunk (kind of like a playful kitten but she lands really badly when jumping off of chairs or whatever). Then she gets so sleepy that I can hardly wake her. Hubby was legitimately worried about her last night. She fell asleep on the bathroom floor and wouldn't wake up when we talked to her or even when we petted her. I picked her up and that woke her up, but it was slightly scary for a little while there. So I don't know what to do next. The vet said we could try her on kitty Prozac, but that's pretty expensive (something like $45 per month). It's only been a few days on the kitty valium - I'm not sure how much longer I want to wait before taking her off of it. What would you guys do, give it a few weeks? Or go with your gut and say it's not working now?
 
Cat: Have you considered putting a flea collar on your cat until her fur starts to grow back? It should prevent her from picking at the bald spot. My cat does NOT enjoy a flea collar--he kind of sulks around when wearing it, which isn't like him. But it seems preferable to drugs.

I'm no longer positive for h pylori, according to latest stool test. Since I'm still having symptoms, I'm guessing that wasn't the main cause behind my problems. But I already sort of knew that.

In fact, today I saw a new color in my D: a pale, white color. What that is, I couldn't say. Googling suggests it may be liver problems, but since I was tested for liver functions a month ago and everything came out fine, I'm not worried about that. But it seems like chicken-flavored Cup-a-Noodles trigger D for me. I would think that this would be safe, as it's basically chicken-flavored soup, but apparently not.
 
Cat, 12 o clock is the bit nearest to your spine I guess! I actually had to sit and picture it then, not the most brilliant thing to be thinking about at 8:40am! I think 12, 3 and 9 are all normal because of the way your butt is, or something like that. My fissures obviously aren't exactly in the correct place, and I think that's why they've taken me seriously to an extent. They do know most of my problems, or at least the ones that seem to bother me more, are left-sided, and quite low. So, that's why the sigmoid is coming. I had a huge conversation with my friends last night about it, and how I was scared. Although, my friend, bless her, is having to stay over Christmas in one of the UK's best neurology department for 8 DAYS for her epilepsy, to make her fit and watch her, so they can see what brain activity is happening, and may eventually remove a part of her brain. Now, that's scary! Although, we promised to visit her with plenty of pizza and chocolate fudge cake as she is allowed visitors. It made me feel silly for whining!

I'm VERY tired. I have barely been sleeping. If looks could kill when my alarm went off this morning, my alarm would have exploded. I ate a stupid food I know I'm not allowed yesterday, so now I am suffering for it. Stomach is just not feeling very happy, at all. It's not painful yet, just weird, but I haven't had breakfast yet.

You sound like you're eating wonderfully! I need to do the same, but last night just killed me. I am trying to fight of eating disorder thoughts today, by saying that I'm an idiot and should restrict today, and believe me, it's hard. :( I feel like a huge bloated mess. I need to go to the gym tonight, but not sure I am going to have the energy - I'm exhausted now, and I still have 9 hours of work to get through.

@CatLady42 - Have you taken any antacids or anything similar?
 
CatLady, would a flea collar help if my cat doesn't actually have fleas? My pets already get Frontline to prevent fleas & ticks and my cat doesn't have fleas, that's not the reason for her over-grooming. I did try a soft puffy collar on her (similar to those cone collars) to try to prevent her from over-grooming, but she even managed to get around that somehow. So far nothing we've tried has worked, it's getting discouraging.

As for your pale stools, were they like light sand colored? I've had pale stools that were the color of light sand and mine were from gastritis (inflammation of the stomach lining, which in turn in my case is caused by GERD/acid reflux). Pale stools can also occur as a result of gallbladder issues. Definitely mention it to your doctor and get it checked out.

Kelleh, poor thing. Not eating well and not sleeping well will put me in a horrendous mood as well so I know just what you mean. And I've had a few thoughts as well recently about restricting foods. I don't want to go down that slippery slope again. I want to eat healthily (is that a word?) and I want to lose some weight but I don't want to do it in an unhealthy way. Truth be told, I really honestly only know how to lose weight in unhealthy ways! :( Either my eating disorder starts commanding me what to do and telling me I'm fat & worthless and making me restrict food, or when my IBD is really active I lose weight no matter what I eat. Both of those are obviously quite unhealthy ways to lose weight. I don't know that I've actually lost weight properly from a healthy diet and exercise in the past. I'm trying to do that now but it's hard, it's really hard. I know I could restrict food and lose weight much more quickly but I don't want to do it that way. When my eating disorder was at its worst, I'd eat 1 small meal per day and that was it. No breakfast, no lunch, no snacks, just a small dinner. So lately I'm making sure not to do that - I make sure to have a reasonably healthy breakfast, lunch, and dinner. Preparing the meals ahead of time and packing breakfast and lunch to go with me to work seems to help. I brought my oatmeal (breakfast) and some pasta with cooked eggs for protein (lunch). Cooking and portioning things out ahead of time is helping, I think. It's just soooo slooooow losing weight when I'm doing it the "right" way. It's becoming irritating really quickly. I need to learn some patience!
 
I've eaten too much yesterday and I've already had a pack of sweets today, which probably wasn't the best idea. I just need energy, and I needed some form of concentration to do my work. I think, if I don't get any more sleep tonight, I'm going to break. I'm sick of the smell and taste of coffee right now.

To add this, I am extremely constipated in the sense it's getting stuck. It's not pleasant. I had to take Laxido yesterday and also just now. I am so sick of being tired and sick of my stomach now being this way. I just wish it'd make up its mind. Why is my colon absorbing so much DAMN water? I drink almost, if not more, 4 litres of water a day. I eat fibre both insoluble and soluble and quite a lot. I exercise regularly. SO WHY AM I THIS WAY? I can't find ANYTHING on the internet to what else I can do, but take laxatives and I do not want to start taking them regularly!!!

I know how to lose weight in healthy ways, but I can't seem to stick to it, I always end up going back to unhealthy ways and it's just so much effort. I'm also impatient like you, which is probably why we slip back into bad habits. I haven't lost weight with IBD or whatever it is, so just feel like I'm a fat hypochondriac most days!

It's hard to learn. I'm trying not to go back to disordered. I am telling myself I need to have dinner tonight despite having something more than I should have done. But its so hard, and probably will be even harder now I am so tired. I don't think I am going to make it to the gym tonight.
 
Kelleh, it's okay to have a rest day from the gym especially if you're feeling that tired and poorly. Go rest, get some sleep. It sounds like sleep will do you a lot more good than exercise will right now anyway.

Yeah, I guess I know how to lose weight "in theory" the healthy way, but in reality it's not nearly as easy as it sounds. I know that "eat healthier, eat less and move more" is such a huge over-simplification. It's so hard. When I was at the worst with my anorexia, and I'd confess to friends what I was doing, they'd usually give me the oversimplified answer, too: "Why don't you just eat more?" Really? You're missing the entire point. And I feel like I'm missing the entire point right now too with my attempts at losing weight the healthy way, if that makes sense. Like the message seems simple but in reality it's super hard.

I don't know why your colon would be absorbing that much water. Are you constantly thirsty? I know that constant thirst and drinking a lot of water can be a sign of diabetes, but it can probably be a sign of other things as well. I do get dehydrated super easily when my IBD or whatever is active - for me, it seems like my colon gets inflamed and then cannot absorb any water. So I drink water and I urinate regularly, but I still get quite dehydrated anyway because I'm not actually absorbing any water, it's all just going right through me. I also get watery d in flare-ups which doesn't help things at all. That's not super helpful, but you're not alone, I have issues with water when it comes to my colon as well.
 
I'm not sure if I am going to be able to sleep. I'm now terrified of getting so little sleep that I spiral down into depression, and I've been having major manic spells. It's horrible, but I keep thinking, "it could be worse". I just feel like a big, bloated mess right now. No amount of coffee or sugar is saving me right now. I am terrible on little sleep. It's definitely all caught up with me now.

It really isn't that simple, it does annoy me when people try to tell me it is. I actually got really upset when somebody posted on Facebook to 'ditch your fat friends - their habits will rub off on you'. I mean, who on EARTH posts something like that? Luckily I did not know them, but WOW. Talk about body shaming, especially friends!

I know exactly what you mean. I feel like I'm missing the point too. I just wish it were simple and you could turn off that one part of your brain that just happens to malfunction when it comes to these things.

I almost feel constantly thirsty (or dry mouth), and have since my eating disorder days, because I used to drink a lot of water, and it has just stuck. I don't think I'm really thirsty. I think it's just now psychological that I need it. I don't know. Either way, it doesn't help. I know I am not diabetic as I have already been tested for that a while back, just when this sort of stuff started to happen, because I started to feel like I had low blood sugar when I hadn't eaten, and I just felt horrible. They told me that was anxiety. :lol:

It makes sense that the colon doesn't absorb the water in IBD, but nothing seems to explain why it's absorbing too much. The only explanation I can get is 'constipation'. BUT, just a few days I had diarrhoea. WORK THAT ONE OUT!!! I am so sick of this, and I can't concentrate. I'm getting so grumpy because I am so tired. :(
 
Kelleh, you've just started (or re-started) taking a medication, correct? Venlafaxine? Since you said the massive constipation and water absorption thing just started a few days ago, I wonder if there's a correlation between that and your medication? I don't know anything about that particular medication, but it might be worth googling and/or asking your doctor or pharmacist about. That's all I can think of!

Yes, I wish I could turn off that part of my brain too! I think one of my issues is, I tend to really overthink things too much. The simpler the concept is (like "eat less and exercise more"), the more I overthink it. I find myself questioning and judging myself on every single food choice. Yesterday, literally, I ate a banana as a snack but then I was really harsh on myself for snacking. For one banana! So I overthink and I overthink and I criticize myself and it all gets to be too much and then I think, screw it, I'm going to have a pizza. For me the overthinking definitely leads to bad decisions because I just fatigue myself with my thoughts. Wish I could just turn off my brain entirely for awhile. My brain is like a bad roommate that I can't move out from (my body is the other bad roommate, it's like I'm sharing a very small apartment with a couple of jerks!).

I hope you're able to get some sleep. Maybe try some relaxation exercises? Do some deep, slow breathing for a bit, sometimes that helps me. Another thing is, start down in your toes and flex those muscles. Then release them. Move up into your feet and flex those. Keep doing that, moving slowly all the way up your body. That can sometimes help me as well - at the very least it calms my wandering thoughts somewhat because I really need to focus on flexing, releasing, moving on to the next body part, etc. I'm not one for meditation, but if I have a task to focus on then it sort of shuts up my brain and I can relax better. That's part of why I like working out so much, especially weight lifting - having to count reps and focus on my form and paying attention to what my muscles feel like and feeling the beat of the music pushing me to keep going, all that stuff in my head means I essentially have no room left in my head for distracting thoughts. It helps calm me and focus me.
 
What flea collars do is prevent cats from picking at their heads and necks. So I think it would probably work even if the cat didn't have fleas.
 
CatLady, ah, I see. Unfortunately the issue isn't so much with my cat's head or neck - those are pretty much the only areas that she hasn't over-groomed. Her belly and inner thighs are the worst - completely pink and bald from over-grooming, and those are the spots where she tends to give herself wounds from over-grooming as well. She also has bald spots on her tail (both the base and the tip, and in the recent past she gave herself a big nasty wound on the base of her tail), and on her forelimbs as well. Her back, neck, and head are the only non-bald areas that she has. So I guess if I could find a really large flea collar and use it as a belt on her...
 
I forgot to vent. :p I think I'm coming down with yet another cold. There's been a nasty cold going around my area, at least one co-worker seems to have it (she told me she was just "sniffly" but then she said her daughter has an awful cold), and my immune system is basically garbage so I tend to catch any and every virus that goes around. I was feeling a bit sniffly and sneezy this morning, and have had a couple random coughing fits, but I figured it was just allergies. But I just went to the gym, and I felt quite sluggish and not quite "right" and now it sure feels like a cold is coming on. My guts always seem to act up a bit when I get any sort of cold or virus, and sure enough, I can feel a little bit of gut grumpiness coming on too. So, if you guys need me, I'll be over here eating soup and feeling sorry for myself. Bleh.

On the plus side, this does give me an excuse to get myself some really delicious ginseng chicken soup from my favorite Korean restaurant. The portions of soup are huuuuge - literally, the options are, do you want a half a chicken in your soup or a whole chicken? :p A whole chicken in my soup is wayyy too much for me (heck, half a chicken is way too much), but depending on how long this cold lasts (and I've heard healthy people on facebook saying it lasted them a few weeks so this doesn't bode well), so I might just get the whole chicken in my soup and have lots of leftovers to carry me through.
 
Yes Cat, tonight will be 4th on it. There could be a correlation, I actually never thought of that. It does actually say that's a side effect. I'm an idiot for not even thinking that! In fact I think I had constipation mostly all through the time I took this stuff! Argh. That's annoying. I don't know.

Been to gym tonight, I ate a stupid binge dinner. I only managed 25 minutes, but it was quite high intensity. I actually remembered why I don't go to the gym after dinner - acid reflux to extremes. That's why it's been so quiet for me recently, as I have been going straight from work, then having dinner once I am done. I just had to tire myself out more to ensure I sleep. I woke up a bit, but I'm starting to slip now again.

You know, the roommate thing is an excellent concept. I'm going to work on it like that. I just challenge my bad thoughts all of the time. I feel the gym tonight was compensatory for the fact I ate oodles of food last night and today. I'm trying not to beat myself up, but it is sooo hard. I sometimes do the same with snacks. I question whether I actually needed it not, and then try and talk myself out of something from my dinner plate to compensate. It's not healthy but it's not just so simple to attempt and kick those bad habits. It's got much better, but it's still there. Although, thought of purging today crossed my mind for the first time in a few months. Of course I didn't, but it appeared.

I need to take those pills in a mo. Not looking forward to it. Did go toilet when I got home, but it hurt quite a bit.

I do weight training too and it really does take me away, but unfortunately it'd wake me up more. :lol: However I've never quite done relaxation techniques before bed as I get extremely fidgety and my mind wanders so much. One of my psychology graduate friends did send me some PowerPoint slides for mindfulness meditation which is apparently very useful in therapy and even for people just wanting to relax. I've been meaning for months and months to try it.
 
Kelleh, I can't eat anything before going to the gym either! Literally I can't have anything in my stomach except for water and antacids for at least 2 hours before working out, it's that bad. I once tried drinking just a few sips of Gatorade just before hitting the gym, and I didn't even make it through my warm-up. I got so nauseated and refluxy that I had to stop less than 5 minutes in, it was awful. And that was just a small amount of a sports drink, not even actual food! So yeah, I really have to be mindful of my GERD and plan out my gym sessions in advance - I can't have a spontaneous snack or meet someone for lunch at the last minute if I want to have a workout. I have to always have a plan. Like at work, there's a little gym in the basement of the building for employees to use, so I use that gym often. I usually take a break at 11 AM and I eat my breakfast/snack at that time, and then I have to wait at least 2 hours so I tend to go to the gym at around 1:30. So after I have my breakfast/snack, I only drink water and have nothing else. Then at 1:15ish I start taking my ranitidine and Tums so that I'll be pre-medicated and ready to go work out with minimal reflux. It isn't a great system but it's been working for me and I'm pretty used to it by now. So yeah, I feel for you, working out with food in the stomach is just not a good idea!

I've actually had the "bad roommate" theory for years - when I was 11 was when I first became chronically depressed. I started middle school at that age and I only had a few friends in elementary school and they all ended up either moving away or going to a different middle school, so I was all alone with no friends in middle school and I'm super terrible at making new friends (I'm very socially awkward and was extremely shy as a child). So I got depressed and around age 12 was when I first started thinking about suicide. I didn't want to kill myself but that damn dark cloud of depression followed me everywhere, for years, and those thoughts followed with it. It was around age 15ish that I started thinking, I'm me, like I'm the personality that lives within the brain. It's the brain that's telling me these things, it's not really "me" me. It's separate from me. It's like I'm living with a bully who tells me to kill myself, but me, I don't actually want to. Once I was able to separate me from my brain, things started making more sense. And also around that time I actually managed to make a few friends and I became a little happier, so things got a lot better then (although right around that time is when the anorexia came into play, but that's a whole other rant for another day). And then of course when IBD came along just before I turned 30, it wasn't hard to make the leap from thinking that my body is just another bad roommate that I'm stuck with. So yeah, ever since then I've been mindful of the separation and it's always been me, my brain and my body as separate entities. :p We're a bunch of wacky mismatched roommates. It's like a terrible sitcom, ha ha.

Good luck with your mindfulness relaxation program - I hope it helps. I've definitely had insomnia and sometimes I cannot turn off my brain either, so I know how miserable that is. I don't think I would even get any sleep if it weren't for amitriptyline. My GI tried switching me to nortriptyline for a bit to see if that'd help my migraines/headaches, but I couldn't sleep hardly at all for like 2 weeks and I called him crying and begging to go back on ami. (Fortunately he said I could go back on it.) Sometimes even with the ami I still lie awake with my thoughts racing for hours, but for the most part it tends to knock me out and keep me asleep fairly well. I was put on ami for migraines, but it can have some benefits to the digestive system as well for some people (my GI said it might help "calm" my guts but I've been on it for like 5 years and it hasn't had any such effect on me unfortunately). If you have trouble sleeping often, you may want to ask your GP about something like amitriptyline. It's actually an anti-depressant in higher doses, but in lower doses it has other effects like preventing migraines, helping the guts, and helping with sleep. It doesn't have the scary side effects that a lot of prescription sleep aids have, either.
 
I've been so busy this past week and a half that I've had to just push through the pain and honestly? I feel better. Not physically, but being caught up doing other things makes me notice the pain and discomfort a bit less.

I've been in the kind of work-groove where you forget to eat and forget to check the time because you're just SO into what's going on. And I like it. Though a day off would be nice soon...
 
Cat, I used to HAVE to eat before I went to the gym, or I just wouldn't have enough energy. Now I can't do it at all, because BAM! Here comes all the acid and uncomfortableness until you dose yourself up with fluid antacid. Water is the only way forward I think! I couldn't imagine would it would be on something like Cola...

I like the theory because it means you can manage to kick them out, eventually. May be hard, but it is possible, that's why I like it so much! I have probably quite a few in my head, like anxiety, depression (I also tried and thought of committing suicide) and bulimia. I will make them move out because they are NOT paying any rent!

I actually struggled getting to sleep last night, but I did not do any meditation or anything! I know I probably should, but I also ended up having very disrupted sleep again. Stupid no sleep.

My GI actually said ami is the next step, but when I was searching for something to do with Venlafaxine and constipation, they actually may prescribe Ven for IBS, so they're trying to kill 2 birds with 1 stone here! Of course, it hasn't helped my stomach, and my stomach problems actually started while I was still on it, and still hurt without! Maybe they won't be able to give me Ami now, no idea. Also had a letter through yesterday for GI appointment on 14th January. Guessing they are going to be discussing my results with me!

Sorry, rambly again!
 
So here I am tearing my hair out again. The university hospital went and analyzed my biopsy from my first colonoscopy without asking me and I certainly didn't ask for their opinion. Their feeling is that the inflammation was caused by the bowel prep. That doesn't seem right to me at all. A 40-50 pound weight loss, extreme fatigue, joint pains, the works. They seem to not care about my CT scan or anything. I'm not dealing with them anymore. I can just forget about everything with them but it still bothers me that they're giving me BS input since I never asked. Oh, and I never got my money back. Instead they're charging me over $200 for expenses that insurance I guess decided not to cover. More debt ew.

My stool tests came back. My c-reactive was normal but I had a slightly elevated calprotectin level of 54. That's at least a sign of inflammation, I was coming out of a flare that had ended a good 11 days before the test. Even though it's getting much better I can't ignore that. Who knows what it could've shown had I done the test sooner? But I am much better on the Pentasa.

I also saw a naturopath yesterday afternoon. Dietary issues are a challenge but I'm experimenting with a custom-made herbal tincture that's made with chamomile, passionflower, mimosa, skullcap, jujube, lemon balm, and a zinc oxide infusion. I've been a skeptic of naturopathy but I figure it's worth a try.

Hope everyone's doing well.
 
SO I decided to go see my family doctor on Tues. He is not impressed with my GI at all, and he is working to get me a new one. He was also sending a letter to her, he is pissed that I can't get in to see her until Nov 13th. He gave me a new Rx for T4's for the pain and he said he hopes I can get help soon. This really sucks. I put myself on a liquid diet, seems to help some with the pain. Really missing food though :(
 
Kelleh, I'm with you today in the disrupted sleep club. I have a nasty cold now, plus my hubby was out late visiting his friend, so between me coughing and horking from the cold and me not being able to sleep because of hubby's absence (I always have a hard time sleeping when he isn't there), I felt like I didn't get much sleep at all and what little sleep I got wasn't very good quality of sleep. I'm so exhausted today! I'm coughing up a storm at my desk (at least that means my co-workers are keeping their distance). I feel like I just need to survive the workday, then I can rest all weekend. No gym for me for a few days. I actually went to the gym yesterday but I felt pretty sluggish and not quite right, and after my workout is when it became clear to me that I was coming down with a cold. Today I'm coughing a ton and exhausted so it's clear I won't be able to work out for a little while.

Gadget, it's just crazy how they're jerking you around like this! :( And more debt on top of it, I really feel for you. Medical debt is just the worst. I currently have about $1200 in medical debt and I'm paying $50 per month right now (at least there's no interest or I'd really be screwed). But it's not like it'll be paid off in 2 years because every time I go to the doctor or have another test it just adds more onto my debt. Sometimes I feel l like I'll never crawl out of the hole. I have other debts too (credit card, hubby's student loan, mortgage). The student loan will be paid off in about 7 years, and our house will be paid off in about 10, so maybe after that time I can actually tackle the credit card and medical debt. I doubt I'll ever be able to afford to retire, though. Having medical problems in this country is so crazy expensive and it really affects your whole life in so many ways!

Kero, glad to hear you have a good GP who is fighting for you. How long are you going to do the liquid diet? I hope you can get a new GI appointment soon!

Speaking of GI appointments, I see mine on Monday. I don't even know what I want to ask him. Things keep acting up, like my arthritis and then my GERD, but my guts are okay-ish for the most part, I think? It's hard to tell whether I'm in remission or not. I don't know. I need to think about that over the weekend I guess.
 
I will do the liquid diet for as long as I need to. I sell meal replacement protein type shakes that seem to go down pretty well. Pain has been much more bearable since I started.

I have to go back and see my GP on Tues. He will then update me on what's happening with the GI and he should have my stool sample results as well as the rest of the ER report.

Hoping your GI appt goes well :) I think remission for me will be no more pain and D.
 
Sorry to hear that, Cat! Colds suck, and they seem to be doing the rounds around here too. I don't want it, but I'll probably get one, just in time for me to go away again. :) Sorry about your sleeping too. I'm starting to feel the effects now, but I am determined to get to the gym tonight, especially after having such a bad two days of overeating. I have some horrific carb cravings at the moment, so I have just had to deal with mint chocolate chip sugar free gum until my snack of fruit. But, it seems to be overwhelming. Luckily I have no money on me, but either way, I don't like this feeling. This feeling occurred a lot, especially when my eating disorder was at large. I have a feeling I will be overeating again later. It's so hard to just tell yourself 'don't do that' or 'have some willpower'. *sigh* I think I'm just tired right now.

Just relax and then attempt the gym again, you don't want to make yourself more ill! I'm going to try and push myself. Last night I managed to, but that's probably because I was loaded up on carbs from the crap I ate.
 
Kelleh, yeah, I know I do very badly when I try to go to the gym when I have a cold. In the past I've tried it a couple times and it never goes well, I just end up feeling worse. Particularly with how much I'm coughing today, I know I wouldn't be able to do anything that involves heavy breathing so it's pretty clear that working out is not happening for at least the next few days. Apparently this cold is quite a bad one, my dad said he had it for a week and a friend of mine from high school said it was closer to 2 weeks for him. My cousin just got this cold too, it's apparently making the rounds in a big way around here! And it sounds like it lasts awhile which is not good. I want to get back to the gym reasonably soon!

So yeah, the good news is that I have zero weekend plans and am just going to rest the whole time. Hubby's working all weekend, too, so I'll have the TV remote to myself and can watch whatever bad shows I want, ha ha. Yesterday evening I sat on the couch and watched TV all evening and worked on my crocheting (finished the blanket I was working on) and that was it. So tonight and all weekend are probably going to be similar - I'm just going to binge-watch Netflix and do more crocheting, I think. I am working on making xmas gifts, so the blanket I finished will be a gift and I'm going to work on some scarves to give as gifts as well. I got myself a cart from Ikea which I use for my crafts, it's very handy - I just put all my supplies on it (yarn, scissors, crochet hooks, etc) and then I can wheel it over to the couch or to my chaise lounge, wherever I've decided to sit/lie down, and I can do my crocheting from there without having to get up to get any supplies. The things we do to make life easier with a chronic illness! ;) So yeah, I'm going to load up my cart with craft supplies and then just veg out all weekend. I think a couple hot baths, some mugs of hot tea, and several naps are also in my near future.
 
Hi! I am new here. :) I have been having many GI problems (nausea, vomiting, diarrhea, constipation, abnormal stools-mucus, pus, blood, green, black, white, night sweats, horrible abdominal pain, right side and other locations, weight loss (already very small)-15 pounds, weak and making it hard to live my life, loss of appetite, fatigue, low energy, shaky, dizzy, light headed, dehydration) for the past 7 months or even longer. I'm lactose-intolerant and sensitive to gluten. I just had my first colonoscopy and endoscopy on Oct 1st. The GI Dr. found from the procedure: hemorrhoids, gastritis, duodenitis, microscopic colitis, granularity, erythema, friability found. Patchy discontinuous friability and granularity in terminal ileum, proximal transverse colon, proximal ascending colon and mid rectum. In the initial consultation, he told me it could be three possibilities 1) cancer 2)inflammatory bowel disease 3)anorexia. The biopsies all came back normal. I follow up with him on Wednesday. I was told that there was inflammation noted in my colon, but the Bowel Prep caused the inflammation. That does not make sense. I better not be told that I have IBS and that I am anorexic. That will make me so mad!
 
So today I lost my voice again. Blegh. It seems to be coming back slowly but surely. Can't wait for the week after next when I'll be getting the x-ray results. Hopefully it'll be enlightning and if not, I'll hopefully get a referral to a 24 hour pH test.
 
Hi, EZanovitch, and welcome. I'm new, too, and was also recently told that the inflammation the GI saw in my rectum was due to the prep. (Unfortunately, they weren't able to complete the rest of the colonoscopy, so I'm in for a repeat in a few months.) I too am not sure how this conclusion is reached, especially when they saw so many abnormalities in your colon. Isn't microscopic colitis a form of colitis that requires treatment? Best of luck with getting an accurate diagnosis.

On Friday I had a CT enterography. It wasn't bad, though I threw up the contrast afterwards. Still tasted better than colonoscopy prep, though.

I don't know if I'm more scared of the test showing something, or of NOT showing something. It's a bit nerve-wracking to me that my GI isn't actually telling me what she suspects. I only sort of pieced it together through the reports and which tests she ordered. So at the very least I'm hoping it's NOT something like cancer.
 
Cat - Sometimes they tell you to 'sweat it out' and apparently going to the gym helps - but it totally doesn't. You just end up getting home and falling into a heap on your bed and not doing much else. :p

Welcome EZanovitch, sorry to hear you're going through all of this. I am not sure that anorexia can cause all of that, which is a stupid suggestion on his behalf. From what you have told us, that is definitely not IBS! (Or anorexia!) Are you entitled to a second opinion if you do not have any other options left?

How was everybody's weekend? It's my ToM again, so hello bad cramps in both regions. Time to push through.. Just hoping I don't fall ill like I did last month! So far, so good.
 
My weekend was busy, had work and a LOT of chest pains along with my time of the month too so I was pretty miserable to be honest.

Honestly most days I feel pretty positive and focus on other things and the stomach issues just become another minor thing I have to deal with and put up with.

But then some days in between there it just comes crashing down and I feel like well, screw this, this wasn't my life before and I want my old normal back.

I must give credit to the PPIs though because the horrible LUQ pain that I had when this all started has all but gone away. It comes back sometimes when I eat waaaay too much or cheat and have a trigger food, but overall it's just gone. In March I couldn't eat anything at all without having this crazy awful pain for hours after. At least now I can work.

Swallowing issues are still a thing, and it scares me a little. Feeling like I can't breathe is a huge anxiety trigger and though I really don't have breathing problems, feeling a lump in my throat can trigger that. I burp ALL THE TIME on bad days or if I'm not super careful with food. I'm also coughing a lot and losing my voice and I have a sore throat pretty much all the time, especially in the mornings.

But also knowing that these things are an anxiety trigger, it's possible the problems aren't as severe as they feel to me. Here's hoping...

Really my main focus right now is trying to lose weight so that I feel like I'm at a healthy place. I have a feeling that I might end up needing surgery, so I figure I might as well drop a few pounds, see if it helps with symptoms and if it doesn't - I'll be in good shape for anything I may need to have done.

I'm probably about 20-25 lbs over my ideal weight at this point, so there's work to be done there, I guess. I lost weight scary fast earlier this year when I was at my sickest but since things have improved somewhat and now I'm at a bit of a standstill.
 
Sounds pretty miserable. :( Sorry to hear you felt that way over the weekend. I understand the whole some days its worse than others though. There's been occasions where I've been so upset about my stomach that it became my major focus point and I'd end up crying myself to sleep because I was in so much pain. Other days, it's just a side problem and will get dealt with.

I am also trying to lose weight, I probably shouldn't be calorie counting etc. as I know I can get obsessive, but I don't think my current partner will let me get that far. I just want to lose a stone, or maybe a little more, but nothing too drastic. I have the gym bug at the moment - I went 6 times last week, and if I wasn't at the gym, I was playing golf or walking.

So, my doctor diagnosed me with anxiety (again) and told me to go a talking therapist. They called me today, and now I have a psychiatrist calling me up, which should have happened originally. The doctors appointment the other day was a TOTAL waste of time. He told me I couldn't possibly have BPD because I do not go around 'burning stuff'. The talking therapist took me more seriously and did refer me to where I need to be though. I am a little nervous and also a little excited, as there could possibly be a chance of being 'normal' sometime in the future. :D
 
Kelleh, yeah, I think sweating does help, but going to the gym doesn't! So what I did was put on warm pajamas and lie in bed with my warmest blankets and my electric blanket on. I am pretty sure I sweated all night long and I think it did help. But yeah, I can't exercise at all with a cold, especially if I'm coughing - it just makes the coughing about 10 times worse. I'm not much good in the gym if all I can do is cough. :p I still have this cold although it's getting better, so I didn't work out all weekend. I'm starting to get frustrated but I just hope to get better and back to the gym soon!

Hi EZanovitch, welcome to the forum. I'm confused, you said they found microscopic colitis? That is a form of IBD, as CatLady mentioned, and it requires treatment. It's also only found on biopsy, so I'm not sure how they can say your biopsies were normal if they also found microscopic colitis! If it were me, I'd definitely be asking the doctor about that. You also said they found granularity? Granulomas are something that's often found with Crohn's, so I'd be asking about that as well. It sounds to me like, if you could get a better doctor to re-interpret your results, you might be on the brink of diagnosis. Good luck and keep us posted on what happens and how you're doing!

Izzie, let us know as soon as you get those test results - I'm on pins and needles waiting to hear what the test found! It sounds like we're all trying to lose a bit of weight, and I'm similar to what you said - 6 years ago when I was so so sick, I lost about 20 lbs without trying (and I was not overweight to begin with, I went from 135 lbs down to 115, so from a healthy weight to underweight and just starting to get scary skinny). Then my GI put me on steroids and I gained it all back and then some, but at that time I was able to get back down to my healthy weight reasonably easily. I had 2 years of remission and since then I've been off & on steroids ever since, and have gained a couple lbs each time I'm on steroids. So now I'm at about 145 lbs and I'd like to lose about 10 lbs. It's actually quite difficult now to lose that weight! It doesn't help that I have all these issues with food, either. And exercise, although it helps turn some of my flab into muscle, it hasn't helped me lose any actual weight - the number on the scale doesn't change no matter how much I work out. So I have to figure out how to lose these lbs safely with a healthy diet and that's been more challenging than I thought it would be. And sometimes I just temporarily give up on diet and eat the most unhealthy things ever (yesterday I had pizza AND French fries, ugh).

I see my GI this afternoon and I'm not even sure what I want to ask him. Lately I'm not great but I'm not terrible either. I vary from okay to bad to meh to good on any given day. My bloodwork has been good lately so I guess I'm not flaring but I'm not feeling as good as I did during my 2 year remission so I think I'm in some weird grey area in between flare and remission, I don't know. My GI is very black and white on things, either you're flaring or you're not, either you're terrible or you're great. He doesn't do so well with grey areas so I'm not sure that he's going to be able/willing to do anything - and I don't even know if there's anything that can/should be done for someone in my situation. Maybe I just have to wait for either a proper flare or proper remission? I really don't know. So yeah, I am not sure how this appointment is going to go.
 
That sounds like somewhere I'd like to be right now. I feel tired, probably because I'm bored. I am trying not to eat, and trying to somehow occupy myself until it is gym time. I'm glad your cold is getting better! It seems to be doing the rounds here at work too, and I have a feeling I am going to get it, extremely soon... Just in time for my holidays!

Do you record how you have been feeling? That may be useful so you have some recollection of your time in between GI visits. Although he may not see the grey areas, you just have to probably say them, and just remember the extremely bad days and also the good ones and see what he has to say about it. Sorry, that probably wasn't exactly very helpful. However, let us know how it goes!
 
I'm just going to generally tell my GI about my grey areas. Like, the other week when my arthritis spontaneously acted up, and then my GERD started acting up the following week. Or a couple months ago when I bled a lot out my backside 5 times in one day. Sometimes I'm super fatigued, or nauseous, or having prickly abdo pains, etc. Sometimes I have migraines. I keep a log on the forum of my gym-going activities, so I always write down when I'm having some symptom that keeps me out of the gym. It hasn't been a proper flare in quite some time, but it's been all of the above. When I was in proper remission for 2 years, I hardly ever had to skip the gym. These days, I hardly ever have a full week where I can do every workout that I want to and plan to. But then sometimes the thing that keeps me out of the gym isn't IBD-related (like this cold that I have that's currently keeping me out of the gym). So I really don't know, maybe I'm making it out to be a bigger deal than it is but I'd really just like to work out really regularly without any symptoms getting in my way. My GI knows how important exercise is to me so we'll see what he says.
 
I quite like the idea of just writing down why you're not in the gym - that generally is a good rule of thumb - especially when you're an avid gym-goer/exercise-lover. I don't think you're making a bigger deal out of it, you probably don't want to miss anything out when you're talking to him, and you also probably don't want to go into too much detail that he'll just ignore. Let's just see what happens.

I'm back to my 'constipation'. 4 times a day. Dry-ish, hard to pass, but still going lots. Irritating much?
 
Weight loss is a slippery slope. You don't want to get into unhealthy behaviors, or crash diet and gain everything back the second you stop. It needs to be sustainable and healthy and that can be a tricky thing.

For me, regular meals, no mindless snacking, and fast-paced walks is what does it. And avoiding sweets and chips and the usual culprits.
 
Cat-a-Tonic said:
Megan, wow, lots of changes! It sounds like it's all for the best though, so good for you for doing what's best for you, even though I'm sure it was probably very difficult (I have a hard time with change myself so I can certainly appreciate that). You're right that that amount of change in such a short time would be stressful to anybody, let alone someone with the kinds of symptoms we deal with. I'm glad to hear that in spite of everything, you're taking care of yourself and doing relatively well. I agree that being proactive seems to help - for me, diet and exercise in particular (and I clearly haven't been so good on the diet side of things lately!). I haven't tried acupuncture yet but I've heard good things, it's definitely on my list of things to try. I'm really glad to hear it's been helping you, that's wonderful. Oh, and I can relate to disliking waking up that early! I get up at 6 AM Mon-Fri myself for work. It's pretty miserable especially now that the days are getting shorter - lately, when I wake up, it's still dark out. I hate that! It seems like it messes with my internal clock or something. It feels like I should be asleep when it's dark out and wake up when it gets light out, it's just wrong to get up when it's still pitch dark outside. Anyway, I feel for you on the whole waking up early thing! You mentioned working at a primary school - are you studying to be a teacher?

Oh, and as for the IBS thing - for what it's worth, my pillcam and basically every other test I've ever had have all come back clear/normal/inconclusive as well. That doesn't mean it's not IBD, though. Sometimes it just hides really, really well. I insisted on trying a trial of IBD meds (specifically, prednisone) and it worked really well. My GP and GI both agree that pred wouldn't work on IBS, and we've ruled out basically every other illness that would both cause these symptoms and respond to pred - so, even though I haven't had it show up on a test yet, my doctors do treat me as though it's IBD and not IBS. So long story short, keep fighting. It sounds like you're not willing to accept IBS as an answer (and I certainly don't blame you!) so keep on fighting for proper answers and treatment. Whether that means a medication trial, tests to confirm/rule out other illnesses, changing doctors, etc - don't give up. I know it's frustrating and difficult, and it's certainly okay to feel frustrated and upset. Unfortunately, presuming that it's IBD, it's difficult to diagnose and sometimes takes a long time and a lot of hurdles to jump over to get there.
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Hi Cat,sorry i have been so bad at responding. I really appreciate your lengthy response, it means a lot. I am thinking that I am 90% sure i want to be a primary teacher, my health hasnt been such an issue as of late so i feel like i can do it-its when i have another episode that i begin to doubt any goals i set for myself. What is annoying though is that i have literally just missed the courses that started in sept of this year so am going to have to wait a whole year to be placed on a teacher training course...the struggle is going to be what to do until then!:confused2:

How are you feeling? i see the topic of weight has been approached. Since i lost all that weight a few months ago when i was ill i just havent gained it back...which is so odd because i eat so much rubbish, and a lot of it. Im about 122 pounds now and was 145 before. Im a shortie though so i would say im about the right weight for my frame now, my friend even delicately put it as 'you look normal again, i can see facial definition'. friends eh?!
 
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Megan, good to hear from you. :) I definitely can relate to doubting goals. I've been up for a promotion at work for, like, a year or so. All I have to go is prove that I can do the job (which would require someone from HR sitting with me for a day and watching me do the work). It would be more money and basically the same things that I do now for work, a few added responsibilities but nothing major. But I doubt myself, I doubt that I can do any more work because I just get so exhausted these days. So I haven't been brave enough to ask for HR to sit with me just yet even though I really should have done this last year already. I keep telling myself, I'll do it when I am less exhausted...

As for what to do until you can take those classes - are there perhaps online classes that you could take at your own pace to get caught up or at least get a head start on next year? I'm not sure how online classes work, but it might be something to look into. And I would imagine you could still do your current job at the school and take online classes at the same time?

As for weight and height - I'm 5'8" and about 145 lbs, so I'm fairly tall-ish and still well within the "healthy" range for my height, but I'm feeling far more flabby at this weight than when I was in the 130s. It doesn't help that all the steroid weight goes right to my belly area, so I look fairly normal and healthy except for my tummy flab. I just hate it, I am having such a hard time losing it. But yeah, like you said, when I'm really ill I lose weight as well no matter how much or what I eat. The first year I was sick, the weight was falling off of me and I tried to counteract that by eating as many potato chips as I could manage. I'd sometimes go through 2 or 3 "family size" bags of chips per week, and if I absolutely stuffed myself like that then I'd manage to maintain my weight. If I could only manage 1 bag of chips per week, I'd still end up losing weight. I know that's not the right nor healthy way to lose weight and I don't want to go back to being that sick, so I feel like a bit of a complainer talking about needing to lose my belly flab now. I know that in the big picture, and extra 10 lbs of belly flab is not bad at all compared to how sick and thin I was a few years back.

Izzie, I have such a hard time avoiding junk food. It's like, the more I consciously avoid it, the more I want to eat it! If I just don't have it in the house, that's usually enough to get me to eat healthier but sometimes hubby and I will go out and purposely buy junk food. He and I both want to lose a bit of weight but we also enable each other to eat badly. Like, there's this ice cream shop we both like and they have this special where you can get 4 pints of ice cream for $10, so sometimes we're like, "Should we go there? I'll go there if you go there!" Same for things like buying candy, we both like the same kind of jellybeans so sometimes it's like, "do you want candy? I'll get some if you're getting some!" It's bad, I've told him to not let me do that stuff anymore but he still does.

Kelleh (and everyone else I guess), so I got back from my GI appointment a little while ago. It went better than I expected and was a bit eye-opening. A little backstory - March was the month that I just bled and bled for a month straight. I saw my GI back in June and he did some bloodwork then which showed I was somewhat anemic. Then, in August I had that one day that was really bad, with 5 bad episodes of rectal bleeding in a single day and that made me dizzy & light-headed, so I went to urgent care. At urgent care, they did some bloodwork and then told me that everything looks great and my anemia was looking much better than it had back in June. Well! It turns out that urgent care more or less lied to me! They did a CBC but didn't bother to test my iron levels - seriously! So they honestly didn't know if my anemia was bad or good, and my CBC wasn't even that great either. So, that got my GI concerned enough that he ran iron and ferritin levels today. He said if it's still not so good, that he'll have me do some iron injections (since I can't take iron pills, as even the supposedly "gentle" iron tablets really upset my stomach). I'm hoping that I can have the iron injections, because my GI said that those would likely help my fatigue/exhaustion issues. So! The issue that I've been having since March may finally be getting resolved soon. And you guys think the NHS is slow! ;) Kidding of course, I don't mean to knock the NHS. But yeah, I'm feeling somewhat optimistic. Since my CBC wasn't that great back in August, only 2 months ago, I'm hopeful that I'm still anemic enough to get the injections and I really hope that those will have me feeling more energetic.

I should get my bloodwork results back in a couple days, and my GI said he'll call me or I can call him and we'll discuss where to go from there and whether to do the iron injections. I'll keep you guys posted on what happens. I'm really hopeful that I get the injections and that they'll give me the energy I've been lacking lately. Wish me luck!
 
I can't wait to get my bloodwork results back too Cat. My doctors have been lazy about keeping track of it but my GP ordered proper bloodwork my last appointment.

I haven't seen any visible bleeding in a decent while, seems to be longer in between those episodes as time goes by, so I'm curious to see if things are looking better.
 
Izzie, I've only had one bit of visible bleeding since the episode in August (just a teeny bit, felt like a small fissure), but my GI said that women tend towards anemia anyway because of periods - I also don't eat much/any red meat (no beef, no pork, I will very rarely have a small amount of lamb or venison but that's about it) so I don't get much iron in my diet, and I can't supplement iron via tablets. So, I'm thinking that the odds are pretty good that I'm still anemic. So I think, for me anyway, that having bleeding here and there still seems to be enough to keep me on the anemic side. I guess I'll find out soon when my bloodwork comes back, anyway. Good luck with your bloodwork results, keep us posted! When do you get the results from the barium x-ray, is that next week?
 
On the subject of bleeding...I've been sort of nuts the past several weeks because I keep having light vaginal bleeding even though I'm on birth control. I did stop taking it for a few days around my colonoscopy, but that was four weeks ago so I really should be back to normal by now, I think?!! I've been on this same kind of birth control (Loryna) for a few years, so it's not like I'm just adjusting to it now.

Oddly enough, I bleed less early in the morning before I take the pill. Then afterwards I start bleeding again.

I made a women's health appointment for a few weeks. Hopefully this problem will either sort itself out or they can help me.

Has anyone ever experienced anything like this?

I'm also pretty sure that I'm having slight rectal bleeding. So at this point I'm just tired of blood coming out of me.
 
Good luck Cat, seems so stupid that they would lie to you and say everything is 'fine'! At least you have had some kind of eye-opening experience. Are you going to be having any more tests to finally get to the bottom of where your problems lie?

@CatLady42 - The only time this occurred for me was when I was on Cerazette or Micronor (these are both progesterone-only pills). I do not know what Loryna is, whether it be a POP or a regular combined pill. I was on mine for years and years, but mine kept doing what yours is doing to you and I just wanted regularity so I came off of it the end of last year.

If I were you, I wouldn't look for rectal bleeding when you know you're bleeding elsewhere, because it can get frustrating trying to tell the difference!
 
Kelleh, I'm not going to have any further tests right now, no. I've had so many tests to look for the IBD and all of them have come back normal or inconclusive, so both my GI and I agree that it's silly to do more tests right now. If/when I have another major flare up, then we'll certainly revisit the idea of testing, but for now when I'm doing relatively okay and not actively/majorly flaring, it seems pointless to do testing. My doctors (GI and GP) treat me as though I do have some form of IBD, we just don't know which one or where it's located (I think colon and TI since that's where the majority of my symptoms seem to be located, but colonoscopies and various other tests haven't found anything in the colon nor the TI). So yeah, right now it's more like we're just doing things like bloodwork and not a lot of major tests. On one hand it sucks because I'm more or less stuck in undiagnosed limbo, but on the other hand I really don't want to flare and I do get taken seriously by my doctors so I'm mostly okay with staying where I'm at diagnosis-wise right now.

CatLady, I haven't experienced anything like that myself, no. I do know that major stress (physical or mental) can affect menstruation - for me, when one of my best friends passed away, it caused my period to be late by several weeks (when typically it's always like clockwork, it's never late by even a day and certainly never late by several weeks). Possibly for you, being ill plus having the stress on your body of going through colonoscopy prep and the procedure itself was just too much stress and your menstruation is going a little nuts because of it? That's just my guess. Good luck at your appointment, I hope they can figure it out!

Oh, and if you experience anything like massive fatigue, or dizziness/light-headedness, go get checked out right away. Anemia can happen pretty quickly when you're bleeding regularly (regardless of where the bleeding is coming from).

I can definitely relate to being tired of having blood come out of you. Whenever I have rectal bleeding, I just sort of yell at my body. I'm like, "I need that blood to live! How does my body not seem to know this??" It gets really frustrating and draining (literally!). Hang in there, hopefully things will improve soon or they can figure it out at your appointment.
 
Fair enough. It seems like a nice place to be to actually come to agreement with your GP and GI though. Seems like you are at peace with yourself and being undiagnosed there too!

Ugh. I was just saying earlier how my stomach hasn't been that painful, I've just been having twinges. But, I keep getting some really bad rectal urgency where I HAVE to go - but I pass so little. It's so annoying. Mucus is back. STOP BODY, STOP!
 
Kelleh, don't get me wrong, I absolutely had to fight to get to where I am now - had to fight for IBD meds and to get my GI to take me more seriously (my GP thought from the beginning that I must have some form of colitis and he's written in my file that I have "IBD/colitis" so he's always taken me seriously). My GI is very "by the book" and since I don't quite fit what the book says, I had to argue long and hard that I do indeed have some type of IBD. It was a lot of work - I had to try (and fail) several IBS meds, and most importantly I had to try and have success with prednisone. A different GP had prescribed me a pred trial, and although my GI was super mad at first when he heard that I tried pred (he said he would never prescribe such a harsh med to an undiagnosed person), but when I explained to him how well it worked for me, he started to come around to the idea that I might have IBD. After all, pred works on inflammatory conditions only - so it doesn't work on IBS, but it does work on IBD. I had such a fantastic reaction to pred (it seriously made me feel like a million bucks) that my GI couldn't ignore that. He still made me go through more tests at that time, to rule out several other inflammatory conditions that cause IBD-like symptoms and respond to pred, and once we did that and he was satisfied that we've ruled out pretty much every other potential suspect, that was when he got on board more fully with the IBD idea. So, it definitely took some convincing, and it didn't happen overnight, but I'm in a good place now with both my doctors.

Yeah, I've been ill for 6 years as of last week - Oct 9, 2009 was when I first got suddenly and violently ill and I haven't been the same since. I know that the average time between onset of symptoms and diagnosis is about 10 years (seriously) for IBD, so although it isn't always easy, I'm usually okay with patiently waiting. I have an aunt who got diagnosed with Crohn's fairly recently, but she had symptoms for something like 30+ years (she said she had symptoms for as long as she can remember and she's in her 50s now), and she had numerous tests over the years with no conclusive results. Finally a few years ago they found scar tissue on colonoscopy and were able to diagnose her with Crohn's based on the scar tissue. It took all those years for the scar tissue to develop. My aunt is sort of my IBD role model, she's cool and funny and awesome even though she clearly suffered for years undiagnosed with these symptoms. She travels the world and she does yoga every day and she's seriously just fun. I want to be cool and fun like she is. So, I guess even if it also takes me 30 years, I'm just going to try to model myself after my aunt and still live my life and have fun and try to have a good attitude about everything.
 
Glad to hear that you managed to fight with them about having IBD. Gives me hope, and probably others, that you can eventually come to a compromise - even with the most difficult of GI's/GP's.

Maybe you want to mention that you now have a family member with Crohn's. :) She does sound pretty awesome!
 
Kelleh, unfortunately my aunt is related by marriage, not blood, so she doesn't count towards me having family history of IBD. I do have one blood relative that I know of who had IBD - my great-grandfather (my father's mother's father) had UC. He also had tuberculosis and some type of cancer (not sure which one), all at the same time - sounds like the least fun time ever! He died pretty young, too. Unfortunately he died several decades before I was born, and my grandma has some sort of Alzheimer's or dementia so it's really hard asking her anything, so I can't get much info out of her about her father and his medical issues. So yeah, just one blood relative with IBD but no currently living blood relatives, just me.

Honestly I find it a little scary learning about blood relatives who have certain medical issues! When I had terrible vertigo last year, my doctor said it was probably a one-time thing, but they mentioned that if I have a family history of recurrent vertigo then that means I have a higher likelihood of having it recurrently as well. So my mom checked around and found that a different great-grandfather (my father's father's father) and one of my dad's cousins both have/had recurrent vertigo. That great-grandfather is also passed away, but my grandpa said that he remembers his father "got dizzy and needed to lie down on the floor for a few days once every few years", and my dad's cousin said she gets horrible vertigo attacks every few years. Great, so that makes me worried that my vertigo might come back in a few years. Having that vertigo, that was the worst I've ever felt. Worse than an IBD flare even. At least in an IBD flare, I can get myself to the bathroom, make myself some toast or whatever, get from the couch to the bed, sit up or lie down, etc. With vertigo as bas as I had it, I couldn't walk, could barely even move without vomiting. Moving my head at all gave me terrible waves of dizziness and nausea. At one point I tried getting myself to the bathroom and I just ended up puking all over. I had to have hubby help me to the bathroom, to bed, to the couch, etc. I couldn't open my eyes at all during the worst of it, as even opening my eyes made me so nauseous (it felt like everything was spinning unbelievably fast, it was like being on a carousel that was going at 120 mph and I couldn't get off). Literally, during the worst of it, I could lie perfectly still and listen to TV or music, and that was it, and even that was just barely tolerable. I couldn't move and couldn't open my eyes. Showering was out of the question for awhile so I got really gross. It was just the most horrible time I've ever had. So, sometimes family history is scary! I just really, really, really don't ever want to experience that vertigo again. It was beyond horrible and it affected me for months.
 
Ah, I see. Not really what you want to hear is it? I have only recently found out there is actually somebody in my family that is a coeliac, but that is all. Usually anything that affects my family, females anyway, are reproductive system issues, such as HPV, bad cells, polyps and cysts, but I am pretty much clear on that half.

Vertigo sounds horrible! Somebody has it at work and they can literally do nothing, and it makes them puke. It is probably one of the worst things I can think of. Let's just hope it leaves you and your family alone for some time to come!
 
Yep, I could also do nothing (except puke) when I had vertigo. I feel for your co-worker, it's just the most awful thing. The thing that I was told would help the most, was to walk as much as I could. Walking sounded like the most horrible thing when I was so spinny and nauseous and just wanted to lie down, but it really did help. Once I was able to walk short distances without barfing all over, I'd go on short slow walks with my cane for stability. It sucked, it was really hard and completely exhausted me, but it did actually help me recover. It's something along the lines of, the vertigo happens because the brain can't figure out where the body is in space (often due to inflammation in the inner ear), and walking helps the brain re-learn that as the inner ear heals. So, if your co-worker doesn't already know, let them know that although it is going to suck and will be really hard, they should try walking as much as they can. If they're still in the phase of puking then walking probably isn't the best idea, but once they can keep their stomach contents in place, walk walk walk! And as for the nausea, I couldn't eat anything for like the first week at least, but I could suck on hard candies (Jolly Ranchers were my go-to) and those didn't make me throw up. I know candy isn't the best food option, but at least I got a little bit of calories that way and wasn't completely starved. So yeah, walking and candy were my vertigo treatments. (They did give me medicine called Meclizine which is basically prescription strength Dramamine, an anti-seasickness medicine, but all it did was make me drowsy, it didn't help the vertigo or nausea at all.)
 
@Cat-a-Tonic Yeah, middle of next week or so.

I had to go to the dentist today and am now having trouble eating for that reason instead of my usual. Variation is key, I guess :p
 
Cat-a-Tonic said:
Yep, I could also do nothing (except puke) when I had vertigo. I feel for your co-worker, it's just the most awful thing. The thing that I was told would help the most, was to walk as much as I could. Walking sounded like the most horrible thing when I was so spinny and nauseous and just wanted to lie down, but it really did help. Once I was able to walk short distances without barfing all over, I'd go on short slow walks with my cane for stability. It sucked, it was really hard and completely exhausted me, but it did actually help me recover. It's something along the lines of, the vertigo happens because the brain can't figure out where the body is in space (often due to inflammation in the inner ear), and walking helps the brain re-learn that as the inner ear heals. So, if your co-worker doesn't already know, let them know that although it is going to suck and will be really hard, they should try walking as much as they can. If they're still in the phase of puking then walking probably isn't the best idea, but once they can keep their stomach contents in place, walk walk walk! And as for the nausea, I couldn't eat anything for like the first week at least, but I could suck on hard candies (Jolly Ranchers were my go-to) and those didn't make me throw up. I know candy isn't the best food option, but at least I got a little bit of calories that way and wasn't completely starved. So yeah, walking and candy were my vertigo treatments. (They did give me medicine called Meclizine which is basically prescription strength Dramamine, an anti-seasickness medicine, but all it did was make me drowsy, it didn't help the vertigo or nausea at all.)
Click to expand...

Yikes. I had really bad vertigo as a child after having repeated ear infections. No one really knew what it was at the time, but it was the scariest thing. I could just be standing up and suddenly I couldn't tell what was up and down and everything felt like it was moving and I couldn't really differentiate between where my body was and where everything outside of me was. Very very scary. I used to just flop down on the ground and cry until it passed, mine came in little episodes here and there.
 
@Cat - If vertigo is anything like when you get so drunk where you can't stand up, then count me out. That's probably one of the worst feelings I have ever experienced and I ensure that I don't drink that much to get to that stage. I just stay at a happy drunk stage. :p However, vertigo would suck harder, because you KNOW you haven't caused this yourself, and there is nothing you can do to make it better - not even drink water. :(

@Izzie - At least you're keeping it mixed up!

Apart from twinges, my stomach seems to be behaving itself. I'm not sure whether its calming down, or what. Typical, before my sigmoid scope. They're definitely not going to find anything now!
 
Kelleh, I don't suppose you could eat some trigger foods and get things really riled up just before your scope? When is your scope?

I don't know that I've ever been so drunk that I couldn't stand, but it's probably a similar feeling. Everything was just spinning, it felt like spinning all the time and any movement made it worse. It was so bad I couldn't focus my eyes on anything for awhile, I had something called nystagmus where my eyes sort of moved on their own in response to the vertigo. Here's a link about it:
https://en.wikipedia.org/wiki/Nystagmus
If you look at the gif on that page of the eye moving back and forth, that's what my eyes did and I couldn't control it. My eyes apparently felt that I was actually spinning and were trying to compensate, or something like that. It was freaky!

Izzie, I'm glad your episodes only lasted a short time, but yes, it is horrible even for short times! My vertigo lasted for about 3 months, from late August 2014 through early November or so. It was constant, never let up for a second, not even when I slept. When sleeping, if I moved or rolled over in my sleep, I'd get a wave of dizziness so strong that it'd momentarily wake me up. Any movement made the vertigo worse, even when I was asleep! It was just horrible. I'm glad you don't get those episodes anymore. Heck, I'm 35 and I would probably also throw myself on the ground and cry if my vertigo came back!

Ugh, I need to stop thinking about vertigo, it just makes me worried that it might come back. Sometimes the IBD can make me dizzy, like if my electrolytes get out of whack. And a couple months ago I caught a cold which messed with the pressure in my sinuses and ears, and that made me really dizzy. Anytime I get dizzy like that, I panic like crazy because I'm afraid the vertigo is going to come back. I'm seriously terrified of going through that again.

Anyway. How are you guys doing today? I'm okay-ish. Had my flu shot today so my arm is a bit sore but I can certainly deal with that. I'm pretty exhausted, haven't been sleeping so well lately. Still waiting on my bloodwork results, hopefully I'll get them today as my GI said it'd be about 1-2 days for the results. Mentally I'm doing okay. I'm actually feeling somewhat hopeful about my financial situation - my hubby worked 5 days last week and he's scheduled to work 6 days this week (!!!) - he normally just works 1 or 2 days per week so this is a positive development. He's also been selling more stuff on Etsy, he made some money from a freelance job, and he had a job interview, so these are all good things. For once in my life we're not struggling financially, we're actually doing okay money-wise. If things keep going this way, I might actually be able to pay off some debt (!!!!). It's weird but definitely good! I'm not rich by any means, but to be less poor than I was is a huge difference. It's a lot less stressful right now which is huge.
 
I have been eating things that are meant to rile me up, but they're not exactly making me bad. I have quite a few more twinges today, and the tenesmus is beating me. I'm passing very little, but the urgency is unbearable. I've heard that it is a red flag of IBD, but I have also seen it is in IBS (although there is little info about that on the internet, just a few sources), but who knows. It's driving me mental. Back on the Laxido I go.

Just looked at that link - that is kinda spooky! I'm sorry you had to go through that! One of the worst things I reckon to go through physically!

Hope you feel better soon. I hope your husband gets the job!
 
Kelleh, I can relate, back before I had my sigmoidoscopy this past spring, I started healing up as well and stopped bleeding. I wanted my GI to see things at their worst, so I tried eating trigger foods as well. High fiber had made me bleed in the first place, but I couldn't get fiber to cause a repeat performance. So then I remembered that my body hates Greek yogurt and that had made me bleed once, so I tried that - nope, nothing! Sometimes long bike rides give me bleeding hemmies and get my stomach all riled up, so I tried several long bike rides - also nothing. So I gave up on trying to trigger an episode and I ended up having the scope anyway, and my GI said he could see evidence of healed hemmies and areas that had previously been bleeding. Long story short, even if things are healing up, have the scope anyway - they still will likely see something. Just because things are healing doesn't mean they've completely disappeared.
 
Those of you with GERD - do you find that portion size is very important? For me, if I eat much less at a time than I usually do, and maybe even do it standing up, I tend to feel better.

I've had a couple calm days but who knows, tomorrow could be hell again :p
 
Izzie, yes, if I have a large meal or over-eat then I definitely get some reflux symptoms. If I eat a normal or small amount then I'm okay. It sort of feels like, if I eat too much, my stomach gets so full and distended and my stomach contents just sit there for awhile, not moving, so if it can't go down then it tries to come back up in the form of reflux. If I can manage to go to the bathroom and relieve some of the pressure in my stomach after over-eating, then the reflux dissipates. And usually over-eating also after a time triggers diarrhea for me, so it tends to be a self-correcting (although not super pleasant) issue.

Eating normal vs. small amounts of food, though, I don't really notice a difference for me, and I haven't noticed any difference with standing up and eating (although I hardly ever eat while standing up so I might have to test that one further).
 
I'm realizing more and more that I have a tendency to overeat because I often forget to eat actual meals and eat maybe only once or twice a day when I'm working. So yeah, need to get on that.
 
Izzie, do you work the same schedule every day, or a different schedule every day? I work the same schedule every day Mon-Fri and I find that really helps me keep my eating on track. I get to my desk at the same time every morning and I have my smoothie. I have my psyllium at the same time ever day. I take my mid-morning break at the same time every day and I have my oatmeal during my break. I have lunch at the same time every day, when I go to the gym I go at the same time every day, I get home at the same time every day. I don't even have to think about it, I'm just on autopilot for a lot of that so it's easy to just eat when it's the appropriate time to eat without having to think about it.

On the weekends is when I run into trouble, because there's no structure like there is during the work week. So I'll do whatever, whenever on the weekends, and that's when, like you said, I'll over-eat because I've forgotten to eat for a good chunk of the day. And I make bad food choices then as well - it's like, halfway through the afternoon I'll realize that I'm suddenly starving because I forgot to have lunch and I don't want to cook anything so I'll just grab a pizza. Yeah, that's bad. And I forget to do things like take my supplements and my psyllium. I have a lot of bad habits on the weekends that I don't have when I'm working. I love weekends but I honestly thrive on structure and routine.
 
My schedule is vastly different from one day to another. Sometimes I work nights, some mornings, some days not at all.
 
I hope everyone here is doing well.

CT scan came back normal. Sigh. I know that's a good thing on some level, but now I'm wondering if my GI issues are just stress and IBS. The past year has been the most stressful of my life, and that's when these problems started. So I don't know. The forum wiki suggests that CTE can only diagnose maybe 30-60% of people with CD, so I know that's hardly conclusive. And if I have UC it wouldn't show up there, most likely. But the strongest evidence pointing towards IBD is CRP and ESR, and that can be raised by a lot of things. So I don't know, but my symptoms aren't really getting better. I had four straight days of complete constipation, followed by painful D today.

I have a colonoscopy in two months but besides that no tests are coming up. I guess I'll just have to wait and see--blegh.
 
The GI Dr. found from the procedure on Oct 1: hemorrhoids, gastritis, duodenitis, microscopic colitis. Patchy discontinuous friability, erythema, and granularity in terminal ileum, proximal transverse colon, proximal ascending colon and mid rectum. Biopsy and colonoscopy/endoscopy came back "normal".

I went back to the doctor today and he said the inflammation of my colon was caused by the colonoscopy prep. He said that he does not know what is wrong with me and can't give me a diagnosis. He ruled out cancer, Inflammatory Bowel Disease, and Irritable Bowel Syndrome.

He is referring me a dietitian to help get my weight up, food allergy testing and other needs that will be addressed. He also referred me to an ob/gyn because my CT Scan was normal, except for an almost insignificant abnormality in my uterus. So we will see where this leads me. I hope for answers! I am confused and trying to be patient and strong through it all.
 
Cat-a-Tonic said:
Kelleh, I can relate, back before I had my sigmoidoscopy this past spring, I started healing up as well and stopped bleeding. I wanted my GI to see things at their worst, so I tried eating trigger foods as well. High fiber had made me bleed in the first place, but I couldn't get fiber to cause a repeat performance. So then I remembered that my body hates Greek yogurt and that had made me bleed once, so I tried that - nope, nothing! Sometimes long bike rides give me bleeding hemmies and get my stomach all riled up, so I tried several long bike rides - also nothing. So I gave up on trying to trigger an episode and I ended up having the scope anyway, and my GI said he could see evidence of healed hemmies and areas that had previously been bleeding. Long story short, even if things are healing up, have the scope anyway - they still will likely see something. Just because things are healing doesn't mean they've completely disappeared.
Click to expand...

That makes me feel a little better. I don't think I'm much of a bleeder though. Thinking of it, even if I do have ulcers, if I get one in my mouth, it only bleeds if I bite off the skin tag around it. So, in the unlikely event that I bite an ulcer in my intestines, I may not bleed. :eek:

@EZanovitch - How have they ruled out IBD if they found microscopic colitis? That is a form of IBD and I am not sure how they have ruled out IBS because they cannot see anything if somebody does have it? Also, good look with the obgyn, hopefully you'll get more insight there.

A note to all. If you have suspected fructose malabsorption or what feels like concrete coming out of your bottom, do not take dulcolax. The pain I was in last night was horrific with sharp shooting pains in my left usual spot and also on my right mid. My stomach feels weird this morning too. It may just be a coincidence between the two, but I think not.
 
Kelleh, dulcolax is pretty wicked stuff for sure! Last time I had to do colonoscopy prep, I did prepopik (also known as pico salax or picolax). It didn't clean me out enough so I panicked and started taking dulcolax in an effort to get fully emptied out. I ended up taking about 10 of them. I still didn't feel cleaned out enough... until the morning of my scope, specifically once I got to the GI clinic. They hooked me up to the heart monitor and IV and all that stuff, and that's when the dulcolax finally hit me. So I had to unhook all that stuff and make a dash for the bathroom. I had a large watery bowel movement and felt then like I was reasonably empty. So I went back to my bed, got re-hooked up to everything... and then again felt the urge that I needed to go NOW. Unhooked again, dashed to the bathroom again (thank goodness they gave me a private room with its own bathroom right there!). Repeated that process several more times. It was not fun! There was so much urgency, I was really surprised that I didn't mess myself (although if there's an ideal time and a place to mess yourself, it's in a GI clinic while wearing a hospital gown). So yeah, I'm not such a fan of dulcolax either as it hits you when you least expect it to (and it takes far longer to work than you'd expect).

CatLady, CT scans definitely can miss things, so don't get too discouraged. My GI explained it to me like this - CT gets an okay "overall" picture of things, and it sees hard/bony tissue better than soft tissue (such as intestines). MRI, on the other hand, gets a good detailed picture of one thing (like one organ) and sees soft tissue better. My CT didn't find anything either except for some nodules on my liver (which have since disappeared). And I had to go for an MRI to even determine what the nodules are - that's how undetailed CT scans are, it could see that there was "stuff" on my liver but couldn't see what it was. CT scans are not so great for finding IBD, honestly. The only time a CT scan has been useful in my experience was when my husband had kidney stones - the CT was able to clearly see the hard stones and give him a diagnosis for his pain.

Good luck with your colonoscopy! Make sure they take a lot of biopsies. Feel free to ask us any questions, many of us have had colonoscopies (I've had two myself). Oh, and out of curiosity, how high were your CRP and ESR?

EZanovitch, if it were me I'd be taking the colonoscopy results to another doctor to get a second opinion. Something just isn't right there - as Kelleh said, microscopic colitis IS an IBD (did the doctor say what type of microscopic colitis? The two main types are collagenous and lymphocytic). If it were me I'd sure be questioning that and not just accepting that the prep somehow caused it, especially with everything else you mentioned (friability and granularity don't happen in a healthy bowel and aren't going to be caused by prep either). Doctors can be wrong, they can give lazy or incorrect diagnoses - go with your gut (pun intended) and question it if it doesn't seem right to you. A second opinion wouldn't hurt.

How's everybody doing today? Fun plans for the upcoming weekend? Me, I'm exhausted, but it's a Thursday so that's expected as I often run out of steam around Wednesdays. Still waiting on my bloodwork results, getting grumpy about that as my GI made it sound like they'd be back in 1-2 days (sometimes the lab is so fast I get results back the same day, but not this time). So still no word on whether I can have iron injections and possibly get rid of some of this fatigue. Bleh. I'm a bit grumpy today. I'm still coughing too and haven't been to the gym in a week because of this cough. I got over most of the cold, I don't feel sick anymore, but the cough part of it hasn't gone away yet. So I haven't been able to exercise which is also making me grumpy and probably isn't helping my exhaustion (working out makes me feel more energetic). I wish I could rest all weekend, but no such luck. My parents are coming down for a visit on Saturday, so we'll have lunch and do some shopping. Sunday I have no plans so I will be able to rest then and I'm looking forward to it. I just have to push through the exhaustion until then. Bleh.
 
My CRP was 1.0 mg/dL, while the reference range was <.8. This seems to be a completely different scale than most people use, so I don't know how high this is, really. ESR was 52, as compared to a 0-25 mm/hr reference rate.

That's good to know about CT scans. Is that true even of scans that use contrast? (I had to ingest three bottles of that stuff, which I later threw up--blech.)
 
CatLady, that's a pretty low CRP still. The highest mine ever got to was 1.7, and my GP and GI agreed that that's still pretty low (I was actually in remission at that time, but my arthritis was acting up, so we presume my arthritis tends to raise my CRP a bit - when my guts are acting up, my CRP is frustratingly still in the normal range which can happen in about 10% of IBD patients). The UK system for CRP, they just multiply everything by 10. So in the US a normal CRP is anywhere from 0 to 1ish. In the UK anything below 10 or so is typically considered normal. (UK folks, please correct me if I'm wrong - but that's my understanding of how CRP is measured here and across the pond.)

Long story short, a CRP of 1 isn't anything to worry about, that's pretty normal. Your ESR is a bit high but not super worrying. And CRP and ESR are something to be taken with a large grain of salt. Inflammation anywhere in the body can cause those readings to rise. And as I said, they can be totally within the normal range, even in a horrible flare, in about 10% of the IBD population. (Myself seemingly included.) CRP and ESR are an okay gauge of inflammation in a general sense, but aren't very specific and don't always correlate with the actual inflammation levels in the body.
 
Yeah, I figured those numbers aren't too bad. If I do have IBD, I think I have it pretty mildly compared to most. But I have been experience joint and muscular pain, especially in the lower back. I teach college, and after an hour or more of standing my body hurts to move. That plus my GI symptoms plus autoimmune diseases running in my family has me concerned.

I guess I just kind of want answers *right now*, but I know that's not likely with intestinal stuff.
 
Every single morning I wake up with a sore throat. Sometimes I even taste blood. This cannot possibly be healthy in the long run. But I've tried sleeping raised up - only seems to make it worse, I've tried taking Gaviscon before bed - also doesn't work.

I sleep on my stomach and no matter how hard I try to prop myself up on pillows and the like so I won't, I always wake up like that. And I mean, pressure on the stomach is obviously not the best idea. I'll have to strap myself down or something :p
 
CatLady, I have joint pain as well and mine has been tentatively diagnosed as inflammatory arthritis (which in turn was likely caused by the presumed IBD). Mine was found on x-ray - I have mild arthritis in both hips. For me, physical therapy and regular exercise help (as long as it's low-impact exercise, anything high-impact like jogging just makes it feel worse). You might want to go to your GP and have them do some x-rays, see if they can find the cause of your pain. If you catch it early enough then physical therapy by itself can make a big difference sometimes.

Izzie, I feel for you. I have a chaise lounge that I've tried sleeping in on really bad GERD days, because it allows me to be more propped up like in a chair. But I can't do it, and like you I'm sometimes a stomach sleeper. I have a hard time even falling asleep while propped up or sitting up, and of course once I fall asleep my body then goes into a more comfortable position. I just sort of slide down and roll over. Sorry that's not helpful, but I definitely am similar.

Sooo. I got my test results back today, and they're not good. My GI tested a few things and none of them are within the normal ranges and I'm not even sure what it all means except that I'm still definitely anemic. I just emailed my GI to ask about iron injections (or infusions? I'm not even sure).

Here are my results: Ferritin (standard range 5 - 204 ng/mL) - my result 4 ng/mL
Iron (standard range 50 - 175 ug/dL) - my result 30 ug/dL
Total Iron binding capacity (standard range 250 - 450 mcg/dL) - my result 584 mcg/dL (I'm not even sure what this is or why it's so high?)
% Saturation (standard range 16 - 50 %) - my result 5%
Transferrin (standard range 180 - 382 mg/dL) - my result 467 mg/dL (I also have no idea what this one is or why it's so high)

So at any rate, the seemingly most important ones - iron and ferritin - are both low. I'm not sure if they're dangerously low, I don't quite know how to interpret that. I'm hoping my GI can shed some light on things for me. Hopefully he sees the email and responds soon. Sometimes he takes a while (like a week) to respond, but he also does seem to read his email on the weekends so I'm hoping I don't have to wait too long for a response. I just want to get the injections or infusions or whatever so that I can have more energy. I'm *exhausted* today. It's so hard to get through a work week lately. I just want to hibernate and sleep for several months.
 

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