Undiagnosed Club Support Group

kellehbeans · Jul 9, 2015

gadgetninjette91 said:
Hey, if it's helping you, more power to you. Personally it made me feel a million times worse. But do stay on top of that prescription because you will become dependent on them and the withdrawals are awful.

The doctor dropped me from 150mg to 75mg when they're only meant to decrease by 37.5mg and I've been on them for over a year. She then tried to drop me from 75mg to nothing. So, I know the discontinuation syndrome FAR too well, unfortunately. She just thought maybe it was contributing to my stomach pain, but seems not to be that way, as this week has been horrendous.

gadgetninjette91 · Jul 10, 2015

kellehbeans said:
The doctor dropped me from 150mg to 75mg when they're only meant to decrease by 37.5mg and I've been on them for over a year. She then tried to drop me from 75mg to nothing. So, I know the discontinuation syndrome FAR too well, unfortunately. She just thought maybe it was contributing to my stomach pain, but seems not to be that way, as this week has been horrendous.

Oh jeez. Yeah you need to decrease your dose very slowly otherwise you end up with the brain zaps. I dealt with Luvox long before I was diagnosed with Crohn's so I really couldn't say whether it negatively affected my stomach but I know I won't go there again. But it may depend on the SSRI. Hopefully you figure out a way to be less uncomfortable. Having to deal with stomach issues is enough of a pain.

kellehbeans · Jul 10, 2015

gadgetninjette91 said:
Oh jeez. Yeah you need to decrease your dose very slowly otherwise you end up with the brain zaps. I dealt with Luvox long before I was diagnosed with Crohn's so I really couldn't say whether it negatively affected my stomach but I know I won't go there again. But it may depend on the SSRI. Hopefully you figure out a way to be less uncomfortable. Having to deal with stomach issues is enough of a pain.

Brain zaps were the norm, and were getting to be quite painful. Driving was a nightmare, and my light sensitivity was awful too, considering the sun has decided to show its face! I had been on Venlafaxine almost a year before my stomach started to flare up quite badly, I wouldn't say that it caused my stomach issues - but the doctor thought maybe it was constipating me (although, I don't really describe on what is happening to me as constipation!), so she decided to take me off it as soon as she could.

I actually may have a hope in hell, and not have to call the doctors either today on Monday, as I *think* my fissure is actually healing - it just needed some cream - it couldn't heal on its own. Only time will tell! Diet is extremely plain at the moment - however, I'd usually be bothered - except I've lost my appetite recently!

Wildmtnhoney · Jul 10, 2015

It's been awhile since I posted here, and I honestly can't remember if it was here that I posted and said I'd been put on Lotronex or not, but thought I'd update here anyway

!

So...yes, the lotronex helps, to some extent. I can only take 1/2 a pill most of the time, or else I end up constipated with watery D escaping around the rocks until the "cork" pops. And even with just .5mg often the D "catches up" to the solid stool, but I'm no longer having 5-10 episodes of D daily, so that's extremely helpful. I even have gone several days with no D at all, just "soft" stools that appear later in the day (so yeah, still multiple movements in a day).

Izzie · Jul 11, 2015

Been on my increased Omeprazole dose now for a couple days and dare I say it seems to be helping. It's not 100% better but at least I am not belching up a storm every time I take a bite of food, so, progress! Which again makes me think that stomach acid has some kind of role in this whole thing. Or it wouldn't help, right?

Sometimes I wish I wasn't such an analytical person. It's just in my nature to research things and try to find answers. Which, in this case, I can't because I'm in the social sciences and not medicine

Had a lot of wildly unhelpful "what if" moments today. What if even the pill cam shows nothing - what am I going to do just walk around with bleeding on and off forever? What if it IS just stress and I should just drop it and maybe it'll go away on its own? What if it's cancer? What if they've missed something? What it what if what if.

Uncertainty is not my forte.

Hope the rest of you are doing well.

Izzie · Jul 11, 2015

Sorry for the double post but I have a question.

I have to see a new GI guy once I move - just standard transfer stuff - before my pill cam and all. And I'll obviously have to give the whole story again.

Would it come off as very strange if I just wrote it all down? And either read it myself or just let the doctor read it?

I'm horrible at expressing myself verbally when I'm stressed, and doctor's visits stress me out. It's probably an ADHD thing. Or just a me thing. I'm sure this approach would work well for me but I'm not sure if it's too weird

UnXmas · Jul 12, 2015

I've tended to find doctors don't pay much attention to things written down.

gadgetninjette91 · Jul 13, 2015

Izzie said:
Sorry for the double post but I have a question.

I have to see a new GI guy once I move - just standard transfer stuff - before my pill cam and all. And I'll obviously have to give the whole story again.

Would it come off as very strange if I just wrote it all down? And either read it myself or just let the doctor read it?

I'm horrible at expressing myself verbally when I'm stressed, and doctor's visits stress me out. It's probably an ADHD thing. Or just a me thing. I'm sure this approach would work well for me but I'm not sure if it's too weird

I always go in with a written list of what's bothering me the most. It helps complete the picture for the doc so he knows exactly what and how I'm feeling. I make sure I don't leave out any details. If your doctor is open-minded enough they should take it as a sign that you're trying to take control of your own body and generally won't make you look like a kook. I don't actually show him my notes, I pretty much just list off the bullet points and work them into productive conversation. I used to have the same fear of bringing in the laundry list but I know how important it is to be on top of everything you're feeling so nothing goes overlooked. I personally think it's helpful as I'm not always the best communicator either when I have to work with what's at the top of my head.

As for me, my CT scan is done. Had a horrible experience with my IV, had been flaring and had to fast so it was especially hard to find my already hard-to-find veins. They were going to use the one vein they always use but it's beginning to scar and I remember how much it hurt last time so I begged them to try and find another vein. Took 3 people to find one and they had to use an ultrasound machine. I screamed in pain and cried from a needle for the first time since I was 14 years old and it did bleed a lot, thankfully that was the worst next to the barium but I got through it. Very nervous about the results though. I am guessing it'll show what the problem is particularly with the masses I've been feeling (not to mention that the CT is what found the jejunal thickening in the first place). But then there is the fear that somehow it could come back normal, after all, I wasn't expecting a clean colonoscopy and I got one. But my most rational thoughts are that this will be crucial to helping me get on the right path as CT imaging has been particularly helpful for me diagnostically speaking. Going back on Wednesday, will keep everyone posted.

Hope everyone else is doing well.

kellehbeans · Jul 13, 2015

Izzie, I'd just do bullet points too. I get a little 'tetchy', and don't want to miss a point, but a lot of doctors I reckon will just be like 'tl;dr' anyway because of the length we all may go into with our undiagnosed brains!

Ninjette, that sounds horrible. Hope you hear back soon.

Cat-a-Tonic · Jul 13, 2015

I do the same thing that Gadget does. I write down all my questions and concerns, with the most pressing/important ones at the top of the list and then the less important ones at the bottom. I am quite socially awkward and my mind tends to go blank when my GI steps into the exam room, so I find it extremely helpful to have things written down to refer to. My GI seems to appreciate it as well, he sometimes just has me read off my questions to him but at least once he's asked if he can read through my written notes himself. This way, we're both on the same page when it comes to understanding what my concerns are, and we can work something out to address my issues. At this point, I would never go to a doctor appointment without having written things down in advance.

Izzie · Jul 13, 2015

I think that will be my approach too then.

Just having been passed around between doctors so much I can never remember when I said what and who knows what and I feel like I should start things off with the new hospital/doctor being fully informed. It's a hassle moving hospitals in the middle of it all like this but it'll probably be a good thing once everything settles.

Still feeling tons better than I have, so I'm cautiously hopeful. I can't sleep though, at all, I just lay awake feeling hyper. Not sure if it's a side effect or what. I've been taking iron supplements maybe I'm just not used to my newfound energy

ETA: Might seem trivial but I've found the ultimate coffee substitute. It's a coffee flavored milk drink that my local bodega sells and YUM. It's not coffee, but it tastes close enough like coffee, and I am in heaven.

kellehbeans · Jul 14, 2015

Bit of an update on me. My stomach has literally been on fire constantly for the last 2 weeks. But, I have found out why I am nauseous and why I threw up before. Venlafaxine is the cause. Taking 37.5mg is not liked by my body at all. I spent half an hour in the toilet today, waiting for myself to be sick. Half an hour out of work, when I had plenty of stuff to be doing. When I told the pharmacist my doctor had told me to go cold turkey - she was horrified, and suggested I cut them in half instead. Every time I take one at the moment, within half an hour, I am almost doubled over, trying not to be sick.

I have been given Zantac Hopefully this will sort my pain out a little (although omeprazole did not help me), but I think my stomach is pretty much flaring up quite badly. Fissure or whatever has not healed yet, it's very sore, I probably need to go to doctor for this and actually confirm it is a fissure. The hemmy has gone though, so that's a plus. I am getting left-sided extreme pain when I try and walk or run on a treadmill. Colofac DEFINITELY doesn't help. Argh... Hope everybody else is okay. I feel like a walking disaster at the moment. I will take any relief I can and will try anything to try and numb it.

Izzie · Jul 14, 2015

kellehbeans said:
Bit of an update on me. My stomach has literally been on fire constantly for the last 2 weeks. But, I have found out why I am nauseous and why I threw up before. Venlafaxine is the cause. Taking 37.5mg is not liked by my body at all. I spent half an hour in the toilet today, waiting for myself to be sick. Half an hour out of work, when I had plenty of stuff to be doing. When I told the pharmacist my doctor had told me to go cold turkey - she was horrified, and suggested I cut them in half instead. Every time I take one at the moment, within half an hour, I am almost doubled over, trying not to be sick.

I have been given Zantac Hopefully this will sort my pain out a little (although omeprazole did not help me), but I think my stomach is pretty much flaring up quite badly. Fissure or whatever has not healed yet, it's very sore, I probably need to go to doctor for this and actually confirm it is a fissure. The hemmy has gone though, so that's a plus. I am getting left-sided extreme pain when I try and walk or run on a treadmill. Colofac DEFINITELY doesn't help. Argh... Hope everybody else is okay. I feel like a walking disaster at the moment. I will take any relief I can and will try anything to try and numb it.

For what it's worth it took me months to feel like Omeprazole was even putting a dent in my problems, it's not until now that I've been put on a higher dose that I feel like it's doing enough to be worth taking at all.

Hope it helps, and going to the doctor about your possible fissure sounds like a good idea. It always gives peace of mind to at least know for sure what it is you're dealing with.

Cat-a-Tonic · Jul 14, 2015

Kelleh, did they not give you anything for the nausea? You might want to ask about something like Zofran (ondansetron is the generic name). It's by prescription only, but it's a very effective anti-nausea med with low risk of side effects (the only side effect I get from it is mild constipation sometimes, but since I'm prone to diarrhea anyway, that's not actually so bad). With that severity of nausea and vomiting, they should really give you something besides just Zantac as I doubt that's going to do anything.

As for the pain while walking or running - high-impact exercise does awful things to me, too. Both my joints and my guts just hate running. Can you ride a bike or do some other form of low-impact cardio instead? That should be much easier on you. And, I know this is frustrating as I'm a fitness buff myself, but maybe take a few days off from the gym when you're feeling this yucky. Let your body rest and heal, don't push it too much when it's already dealing with so much. I know it's hard to force yourself to rest when you want to be active, but sometimes rest is best, particularly when you're dealing with a flare.

kellehbeans · Jul 14, 2015

Izzie - I was on omeprazole before, but it made me worse I think, I got domperidone and that worked wonders. I probably should be going back to the doctors but I'm just being stubborn...

Cat - nope. I only went to pharmacist and she thinks I need to go rethink my meds but I honestly can't wait to get off of these tablets. She recommended the heartburn/indigestion and I can honestly say i took 2 today because I wasn't effective and I had to double dose on antacids at the gym. If I happens tomorrow when I take half a dose of my AD's, I'll call my doctor for an emergency appointment and attempt to get some antisickness pills.

Tried running today, managed it. Had pain before I went though, and before I ate, horrific pain. I haven't stood up since I've eaten so not sure if I'm still crippled over - I just have a dull pain while sat down! I had it before gym and I guess gym made it worse because I got carried away and did a long session.. I took all last week off, I feel great to be back but I honestly think I'm probably doing more harm than good with the amount of pain I'm in!

kellehbeans · Jul 15, 2015

Sorry to double post - today I have a very sharp/pinching pain in my RUQ, which is unusual for me, as it's usually in the LUQ. The RUQ is quite unbearable and is only mainly when I move, even a slow walk to get a glass of water in my office (which is about 10 paces away from my desk). I don't know if this is going to be gym related, does anybody else suffer with this? I know my abdominal muscles are a tiny bit achy because I have been doing some work on them, but it's only this section that's hurting quite badly. BM too, uncomfortable even without straining and it has not resolved my pain one little bit. Was pebbly again, but definitely not constipated any more.

Also, ninjette, you have Crohn's in your jejunum, correct? What symptoms do you have? I can't remember if you have told me before. I will be checking back the thread at lunchtime, but I just had to write this post to maybe put myself at ease a little.

I hate the pain!!

EDIT: LUQ hurts too, like stabbing/pinchy/sharp pains but it's NOTHING in comparison to the other side today!!

Cat-a-Tonic · Jul 15, 2015

Kelleh, it could be due to any number of things (overdoing it at the gym, inflammation, something you ate, partial blockage, etc) - but, my GI always says that new pain/symptoms should be taken seriously and investigated. So I think you should get it checked out, particularly if it doesn't improve or gets worse or you get new symptoms (vomiting, fever, etc). Better to be safe than sorry! Particularly since it's so bad, can you go to A&E or a walk-in clinic and have it checked out right away?

kellehbeans · Jul 15, 2015

Cat-a-Tonic said:
Kelleh, it could be due to any number of things (overdoing it at the gym, inflammation, something you ate, partial blockage, etc) - but, my GI always says that new pain/symptoms should be taken seriously and investigated. So I think you should get it checked out, particularly if it doesn't improve or gets worse or you get new symptoms (vomiting, fever, etc). Better to be safe than sorry! Particularly since it's so bad, can you go to A&E or a walk-in clinic and have it checked out right away?

I'm not sure it's overdoing it at the gym so much, it seems to have calmed a bit this afternoon. Gym pain is something I am familiar with, and it definitely wasn't that. I'm not sceptical that I have inflammation - but the doctors are because I've had no indication in tests I've had. I think, if it comes back, I will need to go to a walk-in clinic, but unfortunately I have no chance today, and I am currently stressed out with work and Boys Brigade (I am the activities manager for their annual camp, but because my stomach has become so unpredictable, I have decided to drop out and am needing to sort out some last minute things plus write up a guide so that things are easy to be carried on by somebody else), so it's not making matters there.

As I type, I have that twinge in my RUQ but it's quite weak now, it's probably just because I am thinking about it. I do need to go doctors though. Not sure why my rectum is still sore, it feels more all over now though, especially when I apply AnuSol. It feels as if my rectum has become inflamed, so I should probably get it checked out. My boyfriend went to the doctors believing he had haemorrhoids, and ended up with it being UC! Although, that's not the case in me, as although I'm sore, I've had NO bleeding whatsoever since I've had what I thought was a fissure.

Cat-a-Tonic · Jul 15, 2015

Kelleh, as I'm sure you probably know, you can still have IBD (Crohn's, microscopic colitis, etc) and have zero bleeding. Yes, with UC specifically, bleeding is very common, but with Crohn's you may or may not bleed, and with microscopic colitis I believe bleeding is not typical at all. So it can really vary! And Crohn's in particular is so tricky because the symptoms can vary so much from person to person and it can hide out in the small intestine. I hope you can get some answers soon. Remind me, when do you see a GI? Was it September?

kellehbeans · Jul 15, 2015

Yes, September 10th. Trying buscopan again. Not working, in fact my stomach feels worse. Highly tempted to book an emergency appt tomorrow with my GP and see what else they can prescribe. I can't remember who it was now, but somebody recommended me a trial of some other meds, but I can't remember. I was wondering if I would be able to get them from my GP without a diagnosis...

Cat-a-Tonic · Jul 15, 2015

A steroid trial perhaps? I had been talking about that earlier - like you, I was undiagnosed and suffering and long story short I demanded to try prednisone. It only works on inflammation, so it works on IBD but not IBS. There are risks as it's a rather harsh med, but I was only on a low dose for a short time (10 mg per day for 5 days) so not long enough for me to develop any side effects. It was however long enough for me to feel drastically better, and that was when my doctors started treating me more seriously as they realized that it was clearly something inflammatory (and therefore not "just IBS"). I'm still technically undiagnosed but my doctors treat me as though it's IBD. I will say, many doctors won't prescribe pred to an undiagnosed person, but if you wish to try it then there's no harm in asking for a short trial of pred just to see how you respond. The worst they can say is no.

Izzie · Jul 15, 2015

Man oh man I really need to get better at saying no to people in social situations. There was a family BBQ tonight and a lot of relatives insisting I just "try a bite".

Now, of course, I am miserable. So nauseated. Might actually puke even though I haven't for years. It's strange that the first thing that happens when I feel bad is the belching. And then the nausea and the pain and ughh.

gadgetninjette91 · Jul 15, 2015

kellehbeans said:
Sorry to double post - today I have a very sharp/pinching pain in my RUQ, which is unusual for me, as it's usually in the LUQ. The RUQ is quite unbearable and is only mainly when I move, even a slow walk to get a glass of water in my office (which is about 10 paces away from my desk). I don't know if this is going to be gym related, does anybody else suffer with this? I know my abdominal muscles are a tiny bit achy because I have been doing some work on them, but it's only this section that's hurting quite badly. BM too, uncomfortable even without straining and it has not resolved my pain one little bit. Was pebbly again, but definitely not constipated any more.

Also, ninjette, you have Crohn's in your jejunum, correct? What symptoms do you have? I can't remember if you have told me before. I will be checking back the thread at lunchtime, but I just had to write this post to maybe put myself at ease a little. I hate the pain!!

EDIT: LUQ hurts too, like stabbing/pinchy/sharp pains but it's NOTHING in comparison to the other side today!!

When I was at my worst, I had severe pain under my ribcage and my lower right quadrant (had jejunoileitis so both upper and lower small intestinal involvement), severe diarrhea up to 6x a day sometimes, usually 4-6, would wake me up from sleep sometimes as well. Also had fairly constant nausea and sporadic vomiting. I was sick for MONTHS straight at a time, I lost a good 5 months to Crohn's in the last year at least, but there was a definite 5-month period of being extremely sick, was my absolute worst at my time of inflammatory biopsy-positive colonoscopy, inflammation survived a lot of antibiotics so it wasn't an infectious cause, lost 42 pounds in the span of a whole year (only got to its very worst in the last year, my Crohn's is basically in baby stages and responding well to current treatment, but I've got a whole new set of problems ahead.)

So it turns out I'm in a full remission. Possibility of some low-grade microscopic inflammation or the disease having moved into my stomach though I doubt it; I guess since it at one point attacked my jejunum, it could very well have a more upward tendency so I'm going in for another upper endoscopy. Yay for more drugs and more pieces getting cut out of me and more medical bills :ybatty: So I'm not feeling perfect, but I've responded fairly well radiographically to 5-ASA treatment, he thinks it's too soon to try biologics because usually Crohn's develops resistance to 5-ASA's and he doesn't want me to become resistant to biologics too soon in the course of my disease.

But here's the frustrating part. My GI says I probably have IBS on TOP of the Crohn's which is what's probably causing my current symptoms. I didn't even know that was possible but I've read studies from credible sources that say that they can occur together. Would certainly explain why I'm about 75-85% better on my meds, at least I get a good chunk of my life back from being so constantly sick. The worst part was he ended up grilling me about some feelings from my past, I suffer from PTSD from various forms of abuse, I wanted to crawl under a rock and die right there in his office. Been kind of withdrawn and lonely-feeling lately. Too many negative memories just been flooding back today. He said that could contribute to what I'm feeling now. Not sure what kind of drugs he'll be throwing at me, not sure I'll know until after my upper scope. I guess since it's this early (in year 2 of this disease) I'm responding well to the weak meds but I have no idea what's even going to happen next. But I'm coming face to face with having to work out a lot of my trauma which is going to be excruciating and I worry about the Crohn's just spontaneously deciding it wants to come back because having to get a diagnosis like that in and of itself is stirring up a whole new battle mentally aside from all of the stuff I've been through in the past.

Sorry if I'm a little quiet lately. Been needing to process everything as best as possible and I'm kind of doing it right now as I'm typing this. But I appreciate all of your support.

kellehbeans · Jul 16, 2015

Cat - I booked an appointment with a doctor today, I managed to get somebody else's cancellation. Turns out it's going to the same doctor I've been seeing all the time, so she'll be pleased to see me again. Every time I leave that room, I say I won't be back - oh how surprised she'll be this time. :lol: I'm going to ask her about it, she seems to give people things willy-nilly and she is probably my best chance, plus she knows what she has given me and what has not worked. I've got to leave work in an hour, so I'll let you know how that goes. I've written it down on a notepad, plus I am about to write what else has been bothering me - which is including being awake most of the night with a sharp pain in my LUQ, which seems to shoot, disappear for a few minutes, then come back.

Izzie - BBQ is the best! I can't resist either - I did not on the weekend, and it was good - but like you, I was so nauseated. :-( I don't think our guts can cope with copious portions of food any more!

Ninjette - Which part of your rib cage? I don't understand why your doctor had to bring back memories of your PTSD, I just don't understand. They do this to me too, but about my bulimia and anxiety. Mainly anxiety.
I'm really sorry to hear you are going through this hun, that sounds awful. It's fine if you're quiet, just remember we are all thinking of you and hoping all is OK. Just check in when you can.

kellehbeans · Jul 16, 2015

Sorry to double post (again)

Been to doctors, she was basically U-S-E-L-E-S-S. She would not give me ANY pain relief, despite contesting that no IBS meds are helping. She did, however, try to give me peppermint oil, AFTER I finished saying that peppermint flares up my GERD. She forgot to prescribe me anti-sickness pills, so I'm expecting to be in the toilet in the next 10 minutes, waiting to throw up - but she did give me some more AnuSol cream, the HC kind, which you can only use for 7 days. I have a fissure (apparently quite a bad one too, which even the medical student that was sat in the room was told to come have a look and she vocally announced 'ouch') and she had a quick feel :lol: and came to the conclusion I have a hemmy, although my pain is all over now, and not just in one spot - it's like I'm inflamed, but she did not listen to that, despite me being in ultra pain as she put a lubed finger in!!! :ybatty: I'm going to try this cream, but that'll take me up to 5 weeks of no healing.

Also, she told me to only eat 2 times a day, opposed to my usual 5 (that includes snacks), and said that was better than 3 - DESPITE, her knowing about my medical mental history, and I'd also just told her than hunger makes my pain 100x worse, and she basically told me to get over it, as most people don't have the chance to eat 5 times a day because they're busy (like I'm not as well, I just stuck to a rigid plan for my ED recovery!) or in Africa where they get nothing at all! Needless to say, I walked out almost in tears - and I never cry. I felt so useless and such a primadonna and this was all my fault.

Either way, I'm going to have 2 meals today. One is going to be KFC. I tried to explain to her, it doesn't matter what I eat, I can eat healthily and still feel the same. She just told me to keep away from tea/coffee, even decaf which made the matters worse! Also, no spice! Argh. I'll survive, I'm sure. Just a little upset/angry with this all right now.

Cat-a-Tonic · Jul 16, 2015

Gadget, my GI has told me the same thing - that when I have "breakthrough" symptoms while in remission, that it must be IBS causing those symptoms. I don't know that I believe it, though. It just seems like a convenient excuse to me. The way I feel is, I almost certainly have some form of IBD. So I have IBD all the time, even when it's in remission. The monster never goes away, it just goes to sleep for awhile - but it's still there. I feel like it's still IBD causing some of my minor symptoms when I'm in remission. Maybe I'm wrong, but that makes more sense to me than just slapping the IBS label on it. (Particularly since IBS meds either don't work for me or make me worse.)

Speaking of having symptoms, I feel AWFUL today. I don't know why. I'm supposedly in remission. I didn't eat anything that would have caused this level of awfulness. I dragged myself in to work but I think I'm going to go home sick soon I think because I just don't know how I can make it through this day. I felt okay yesterday so this just sort of came out of nowhere - I woke up exhausted and my stomach is on fire. Bleh!

Izzie, I never puke either (even though I'm frequently nauseous). I'm very stubborn, I refuse to vomit unless my body gives me no choice in the matter. I can tell you that I've vomited 5 times in the last 5 years which is not too bad considering that I've had IBD for close to 6 years - I vomited once in a bad flare, once due to colonoscopy prep, once due to a side effect of a med (the aforementioned IBS med that made me worse), and twice due to labyrinthitis (horrendous vertigo due to inflammation in my inner ear which was apparently caused by a virus - the vertigo in turn caused massive nausea and some vomiting, it was an awful time, the vertigo kicked my butt more than IBD ever has which is really saying something!).

Kelleh, that doctor sounds awful.

I'm sorry you had such a bad experience. Since she basically didn't help you at all, are you able to go to A&E or a different clinic? Her advice sounds terrible and you at least need anti-nausea meds (particularly on days like this, I don't know what I'd do without my Zofran tablets). Also, you know your body best, so if it were me I'd just ignore that doctor's dietary advice and do what works best for you.

kellehbeans · Jul 16, 2015

Sorry to hear you're feeling rubbish Cat. It's not nice when you wake up one day, thinking you're okay, then the next, without warning, you're feeling rubbish again.

It was awful. She's been helpful, but she's also been extremely unhelpful, today being one of those days. She was little more abrupt today, probably because she had a medical student with her. I think I am going to call 111 next time, they are FAR more helpful, and even can prescribe me medication. I think I am going to try the 3 meals a day thing. I've done 2 meals plus a snack today, and the KFC has given me horrific heartburn and acid reflux (not to mention the lump in my throat!), but it was worth it!!

I'm going to try it, just to go, LOOK IT'S NOT HELPING ME. It's because I told her I had two cases of 12 times a day (but ignored the fact most of the time I can be 'normal' or as normal as I am, 3-5 times a day, or I skip a day), and she said I need to stop eating so much, as there's no need to eat that many times a day, and most people don't get that time. But my work is more lenient and they know what I am like so don't mind. I'm just going to have to wait for the GI, but if things get worse, I am going to call 111 or go to the walk in clinic.

But surely a fissure so bad, and hemmy's (that are internal but HURT? I thought they weren't meant to hurt internally? 2 weeks of treatment PLUS 2 weeks of natural healing and it's got WORSE), that's not right, surely?? I'm even having trouble using AnuSol because the nozzle is actually hurting me...

gadgetninjette91 · Jul 16, 2015

kellehbeans said:
Cat - I booked an appointment with a doctor today, I managed to get somebody else's cancellation. Turns out it's going to the same doctor I've been seeing all the time, so she'll be pleased to see me again. Every time I leave that room, I say I won't be back - oh how surprised she'll be this time. :lol: I'm going to ask her about it, she seems to give people things willy-nilly and she is probably my best chance, plus she knows what she has given me and what has not worked. I've got to leave work in an hour, so I'll let you know how that goes. I've written it down on a notepad, plus I am about to write what else has been bothering me - which is including being awake most of the night with a sharp pain in my LUQ, which seems to shoot, disappear for a few minutes, then come back.

Izzie - BBQ is the best! I can't resist either - I did not on the weekend, and it was good - but like you, I was so nauseated. :-( I don't think our guts can cope with copious portions of food any more!

Ninjette - Which part of your rib cage? I don't understand why your doctor had to bring back memories of your PTSD, I just don't understand. They do this to me too, but about my bulimia and anxiety. Mainly anxiety.
I'm really sorry to hear you are going through this hun, that sounds awful. It's fine if you're quiet, just remember we are all thinking of you and hoping all is OK. Just check in when you can.

The pain I felt was mainly in a sort of five-dice pattern (best way to describe location), upper and lower quadrants on both sides and pain in the middle near my belly button). There was pain that was mainly under the surface of my ribcage and a little bit closer to the middle of my abdomen, but very prominent in the upper corners. Felt mainly like a very severe pinching feeling. Sucks because doc wanted to try me on some kind of antidepressant, of course I vehemently refused. So it just feels like I won't really get any relief, he recommended counseling to ease the underlying tension.

gadgetninjette91 · Jul 16, 2015

Cat-a-Tonic said:
Gadget, my GI has told me the same thing - that when I have "breakthrough" symptoms while in remission, that it must be IBS causing those symptoms. I don't know that I believe it, though. It just seems like a convenient excuse to me. The way I feel is, I almost certainly have some form of IBD. So I have IBD all the time, even when it's in remission. The monster never goes away, it just goes to sleep for awhile - but it's still there. I feel like it's still IBD causing some of my minor symptoms when I'm in remission. Maybe I'm wrong, but that makes more sense to me than just slapping the IBS label on it. (Particularly since IBS meds either don't work for me or make me worse.)

Speaking of having symptoms, I feel AWFUL today. I don't know why. I'm supposedly in remission. I didn't eat anything that would have caused this level of awfulness. I dragged myself in to work but I think I'm going to go home sick soon I think because I just don't know how I can make it through this day. I felt okay yesterday so this just sort of came out of nowhere - I woke up exhausted and my stomach is on fire. Bleh!

Izzie, I never puke either (even though I'm frequently nauseous). I'm very stubborn, I refuse to vomit unless my body gives me no choice in the matter. I can tell you that I've vomited 5 times in the last 5 years which is not too bad considering that I've had IBD for close to 6 years - I vomited once in a bad flare, once due to colonoscopy prep, once due to a side effect of a med (the aforementioned IBS med that made me worse), and twice due to labyrinthitis (horrendous vertigo due to inflammation in my inner ear which was apparently caused by a virus - the vertigo in turn caused massive nausea and some vomiting, it was an awful time, the vertigo kicked my butt more than IBD ever has which is really saying something!).

Kelleh, that doctor sounds awful. I'm sorry you had such a bad experience. Since she basically didn't help you at all, are you able to go to A&E or a different clinic? Her advice sounds terrible and you at least need anti-nausea meds (particularly on days like this, I don't know what I'd do without my Zofran tablets). Also, you know your body best, so if it were me I'd just ignore that doctor's dietary advice and do what works best for you.

Cat: I've read studies that say that IBS-type symptoms in IBD patients are usually caused by low-grade, subclinical inflammation, and he brought up the possibility of this as well, but he seemed very focused on my mental health history in terms of relief from some of these in-remission symptoms. I haven't necessarily noticed a link between symptoms and times of stress but my main trigger has been running on little to no sleep which is sometimes but not always caused by the PTSD, I get terrible nightmares at times and am afraid to go to sleep. But to me it seems more like subclinical inflammation. He didn't want to put me on any other meds at the moment but I'm staying on the Apriso until further notice (in other words, when the Crohn's comes back with enough of a vengeance to indicate that I'm becoming resistant to 5-ASA treatment). It's so early in the course of my disease that he's just not trying to make me resistant to biologics which I guess I can understand. But IBS meds don't work for me either. Was prescribed an antispasmodic, I just felt sped up as if I were on Ritalin.

kellehbeans · Jul 16, 2015

Oh Ninjette, I'm sending massive hugs to you. I'm really sorry you're having a horrible experience, even when you're in remission. Can you find another doctor that won't focus on this?

Izzie · Jul 16, 2015

kelleh - that doctor sounds like someone who would work at my hospital. I've never heard of a doctor suggesting someone only eat twice a day, it doesn't sound like the best idea. I have however gotten the old "you'll just have to deal with it" thing. *sigh*

Cat - I had really really bad vertigo as a child (recurring ear infections for several years), and I remember it being awful. I think I've vomited about four times - and that's four times, not four episodes of vomiting or anything - since I can remember. Since I was school-aged at least. For me it's like I couldn't make myself puke even if I want to. Before all this stomach stuff started I couldn't even burp, it was impossible. Certainly isn't anymore

Preparing for a week of dogsitting starting on Saturday. Should get me moving and out of the house a little more than usual so that's good.

kellehbeans · Jul 16, 2015

Izzie said:
kelleh - that doctor sounds like someone who would work at my hospital. I've never heard of a doctor suggesting someone only eat twice a day, it doesn't sound like the best idea. I have however gotten the old "you'll just have to deal with it" thing. *sigh*

Cat - I had really really bad vertigo as a child (recurring ear infections for several years), and I remember it being awful. I think I've vomited about four times - and that's four times, not four episodes of vomiting or anything - since I can remember. Since I was school-aged at least. For me it's like I couldn't make myself puke even if I want to. Before all this stomach stuff started I couldn't even burp, it was impossible. Certainly isn't anymore

Preparing for a week of dogsitting starting on Saturday. Should get me moving and out of the house a little more than usual so that's good.

I don't understand how she can say that, my work know I have had problems and I need to stick to a routine. So, now I've got to stick to a new routine and keep it from making me slip back into my old tendencies and hope it will help. Although, I'm currently sat here, needing to go to the loo but I can't go, and I'm not even constipated in the same way as not going for days, as I went a few times yesterday! :-( I can't believe she said what she said. It upset me something chronic!!

gadgetninjette91 · Jul 16, 2015

I could, but I worry that I'll just be told the same thing. Switching doctors is exhausting but I may have to, he even said he may have to turn my care over to someone else if it becomes too complicated for him to handle. Another reason why I'm feeling so hopeless and withdrawn. Have had general feelings of being a lost cause in life in general just because of the way I've been treated sometimes. Too much abuse. So none of this really helps me, it just makes me want to withdraw from everything.

UnXmas · Jul 16, 2015

kellehbeans said:
Sorry to hear you're feeling rubbish Cat. It's not nice when you wake up one day, thinking you're okay, then the next, without warning, you're feeling rubbish again.

It was awful. She's been helpful, but she's also been extremely unhelpful, today being one of those days. She was little more abrupt today, probably because she had a medical student with her. I think I am going to call 111 next time, they are FAR more helpful, and even can prescribe me medication. I think I am going to try the 3 meals a day thing. I've done 2 meals plus a snack today, and the KFC has given me horrific heartburn and acid reflux (not to mention the lump in my throat!), but it was worth it!! I'm going to try it, just to go, LOOK IT'S NOT HELPING ME. It's because I told her I had two cases of 12 times a day (but ignored the fact most of the time I can be 'normal' or as normal as I am, 3-5 times a day, or I skip a day), and she said I need to stop eating so much, as there's no need to eat that many times a day, and most people don't get that time. But my work is more lenient and they know what I am like so don't mind. I'm just going to have to wait for the GI, but if things get worse, I am going to call 111 or go to the walk in clinic.

But surely a fissure so bad, and hemmy's (that are internal but HURT? I thought they weren't meant to hurt internally? 2 weeks of treatment PLUS 2 weeks of natural healing and it's got WORSE), that's not right, surely?? I'm even having trouble using AnuSol because the nozzle is actually hurting me...

So sorry you had such a bad appointment. But you find 111 helpful?! All they ever do is send me to A&E, and one I spoke to didn't know what a stoma is.

I agree with Cat on the concept of having IBS and IBD - I think if someone has IBD, and tests show it's in remission but they're still having symptoms, the symptoms are due to inflammation that the tests have missed, or to permanent changes (scarring, etc.) that IBD has caused in the intestine. That's my theory anyway.

Izzie · Jul 16, 2015

gadgetninjette91 said:
I could, but I worry that I'll just be told the same thing. Switching doctors is exhausting but I may have to, he even said he may have to turn my care over to someone else if it becomes too complicated for him to handle. Another reason why I'm feeling so hopeless and withdrawn. Have had general feelings of being a lost cause in life in general just because of the way I've been treated sometimes. Too much abuse. So none of this really helps me, it just makes me want to withdraw from everything.

I'm sorry you're having such a hard time. I definitely understand how it feels to have doctors treat you a certain way because of your mental health history. You're not a lost cause, shitty things happen to people who don't deserve it. I hope things get better for you soon :hug:

kellehbeans · Jul 16, 2015

Ninjette, I am completely empathising with you. I can't believe he said he may be brushing his hands of you because he's finding it too much. Surely that's pretty unprofessional to actually tell the patient that?

UnXmas, I guess I have only called them once so that is probably why - I'm guessing I have a lot of rubbish to come through!

UnXmas · Jul 16, 2015

Izzie said:
kelleh - that doctor sounds like someone who would work at my hospital. I've never heard of a doctor suggesting someone only eat twice a day, it doesn't sound like the best idea. I have however gotten the old "you'll just have to deal with it" thing. *sigh*

Cat - I had really really bad vertigo as a child (recurring ear infections for several years), and I remember it being awful. I think I've vomited about four times - and that's four times, not four episodes of vomiting or anything - since I can remember. Since I was school-aged at least. For me it's like I couldn't make myself puke even if I want to. Before all this stomach stuff started I couldn't even burp, it was impossible. Certainly isn't anymore

Preparing for a week of dogsitting starting on Saturday. Should get me moving and out of the house a little more than usual so that's good.

I'm another one who can't vomit, which I'm pleased about, I have a life long fear of seeing other people vomit, since long before I became ill myself. I've had ileus and a blocked intestine and didn't vomit with either, which actually delayed the diagnosis of the ileus, because it's almost unheard of not to vomit with it. It also meant the ileus was incredibly painful, because the bile just built up in my stomach until it looked like I was pregnant. The size of my stomach was what led a nurse to realise what was wrong, then they aspirated my stomach with an NG and finally eased the pain. With the small bowel blockage, I was glad they put the NG in right away. Another bonus - with no gag reflex, swallowing countless NG tubes is not that bad at all.

Izzie · Jul 16, 2015

UnXmas said:
I'm another one who can't vomit, which I'm pleased about, I have a life long fear of seeing other people vomit, since long before I became ill myself. I've had ileus and a blocked intestine and didn't vomit with either, which actually delayed the diagnosis of the ileus, because it's almost unheard of not to vomit with it. It also meant the ileus was incredibly painful, because the bile just built up in my stomach until it looked like I was pregnant. The size of my stomach was what led a nurse to realise what was wrong, then they aspirated my stomach with an NG and finally eased the pain. With the small bowel blockage, I was glad they put the NG in right away. Another bonus - with no gag reflux, swallowing countless NG tubes is not that bad at all.

I have the WORST gag reflex though. But I never vomit. It's the strangest thing. I can't even have a regular throat exam without gagging, but nothing ever happens

Watching other people puke is not a pleasant experience, I guess. But being the typical "mom" of my friend group it happens to me more often than I'd like :shifty:

UnXmas · Jul 16, 2015

My fear gets pretty irrational. Emetophobia - it's a real "thing" https://en.m.wikipedia.org/wiki/Emetophobia

Does not make it easy staying on gastro wards in hospital. I've been known to run from the ward and camp out in the visitors' room when another patient starts being sick. I can't even stand watching someone be sick on tv when I know it's fake.

kellehbeans · Jul 17, 2015

I don't like keep posting loads of stuff, but everything keeps changing so fast and I am so confused - so I was wondering if anybody can help me.

My bowel habits, have gone from normal, to all of a sudden, going to urinate, and suddenly my bowels opening and pebble stool appears, not watery or anything. Just pebbles. It was covered in AnuSol cream, but two looked black, but I CANNOT be sure. What do I do? I've been in so much pain today, nausea again, and then this happens! Most pain was under my ribs (all across) and a lot of sharp in my LUQ (more umbilical area). I am so scared because it's just changed? I'm also concerned I have procitis rather than haemorrhoids because last time I checked, unless they become strangulated, they do not hurt. And it's not just one area that hurts. Argh, I'm so confused and my doctors are so useless!!

UnXmas · Jul 17, 2015

Can you make an urgent GP appointment? See if your GP does same-day appointments, they probably can. Your GP won't diagnose you, but they can assess whether you need immediate medical attention, and they can do a digital rectal examination and may be able to tell you whether you have haemorrhoids. They can be painful even if they are not strangulated. Is the stomach pain new or more severe than is usual for you?

I think I said this to you before, so sorry if I'm repeating myself, but with abnormal sized bowel movements, or symptoms when emptying your bowel (e.g. not knowing when you need to go, not being able to finish going, etc.) I would recommend you see a colorectal specialist as well as a gastroenterologist, if you aren't already.

kellehbeans · Jul 17, 2015

UnXmas said:
Can you make an urgent GP appointment? See if your GP does same-day appointments, they probably can. Your GP won't diagnose you, but they can assess whether you need immediate medical attention, and they can do a digital rectal examination and may be able to tell you whether you have haemorrhoids. They can be painful even if they are not strangulated. Is the stomach pain new or more severe than is usual for you?

I think I said this to you before, so sorry if I'm repeating myself, but with abnormal sized bowel movements, or symptoms when emptying your bowel (e.g. not knowing when you need to go, not being able to finish going, etc.) I would recommend you see a colorectal specialist as well as a gastroenterologist, if you aren't already.

I made one yesterday, and that's when she diagnosed me with a fissure and an internal haemorrhoid, but when she had her fingers to have a look, I was in complete agony. I'm struggling with the thin nozzle of the AnuSol because it's so painful, but it's all the rectum that the nozzle reaches that hurts, not just one area. I'm not bleeding, it's just painful.

I've noticed a lot of stool would be too big, but it's suddenly changed back to pebbly, and it all came without straining, but definitely feels like something is still there, but I can't get it without straining, and then I don't get anything. The pain has moved from upper to lower left in the course of a few hours. As I walk, the lower left pain is quite sharp and I can barely stand up straight.

The GI appointment is September 10th, which I booked just over a month ago. Berkshire hospitals are quite hard to get into, and my doctor just wouldn't give me any more pain relief; forgot my anti-sickness pill prescription and told me to get the AnuSol with the added HC, despite me telling her I'd try letting it heal all on its own, then 2 weeks with the stuff that didn't have the HC. I'm not putting any more AnuSol in until this sudden lot of BM has finished, which I'm not entirely sure when. She told me to eat 2 meals. I've had a smoothie and a banana, but then I had a rather big lunch, and it happened after lunch, but the pain was after the smoothie, but has moved down during the course of the day. Also, if I don't apply the cream, I may be able to see whether or not the stool is black or not - I had another one since the last post, and it looked black to me again, but still was engulfed in cream, which I know is normal. Although, this cream is a little yellowy, so it's hard to tell if there's any infection or it is just the cream.

EDIT: How do you get to see a colorectal specialist on the NHS?

Izzie · Jul 17, 2015

kellehbeans said:
I made one yesterday, and that's when she diagnosed me with a fissure and an internal haemorrhoid, but when she had her fingers to have a look, I was in complete agony. I'm struggling with the thin nozzle of the AnuSol because it's so painful, but it's all the rectum that the nozzle reaches that hurts, not just one area. I'm not bleeding, it's just painful.

I've noticed a lot of stool would be too big, but it's suddenly changed back to pebbly, and it all came without straining, but definitely feels like something is still there, but I can't get it without straining, and then I don't get anything. The pain has moved from upper to lower left in the course of a few hours. As I walk, the lower left pain is quite sharp and I can barely stand up straight.

The GI appointment is September 10th, which I booked just over a month ago. Berkshire hospitals are quite hard to get into, and my doctor just wouldn't give me any more pain relief; forgot my anti-sickness pill prescription and told me to get the AnuSol with the added HC, despite me telling her I'd try letting it heal all on its own, then 2 weeks with the stuff that didn't have the HC. I'm not putting any more AnuSol in until this sudden lot of BM has finished, which I'm not entirely sure when. She told me to eat 2 meals. I've had a smoothie and a banana, but then I had a rather big lunch, and it happened after lunch, but the pain was after the smoothie, but has moved down during the course of the day. Also, if I don't apply the cream, I may be able to see whether or not the stool is black or not - I had another one since the last post, and it looked black to me again, but still was engulfed in cream, which I know is normal. Although, this cream is a little yellowy, so it's hard to tell if there's any infection or it is just the cream.

EDIT: How do you get to see a colorectal specialist on the NHS?

Did you have any bloodwork? Maybe you could ask for a fecal occult blood test? From what I've gathered from my many doctors visits dark stool can be due to tons of things - like iron supplements or foods etc. Possibly gross fact ahead but when I've had bleeding I've always noticed that things smell... not normal. But a bloodtest would tell you if you have a lot of bleeding (you'd be anemic, most likely), and a fecal occult blood test will show for sure whether what you're seeing is blood or not.

I also was wondering whether any of you with reflux (or not, I mean I don't know what's causing this) have experienced a sort of smasping/twitching feeling in the chest?

I used to think this was my heart freaking out, but I've had EKGs that have been normal and no doctor seems to think it's my heart, and my pulse is normal immediately following these little episodes, so I'm starting to think it's my stomach/esophagus freaking out somehow.

kellehbeans · Jul 17, 2015

I have had blood-work for H. Pylori, Micronutrients, FBC x2, CRP, liver and kidney functions, thyroid - nothing ever appeared abnormal, except a low WBC (lymphocytes, specifically) but apparently it was normal for a woman my age to be at this level. I've never showed anaemia, but I've never really noticed any bleeding, apart from a few times, where it seemed to just engulf the whole toilet bowl, and sometimes in mucus and what I thought were patches in stool - but I never knew if it actually was or not.

I've never done an occult blood stool test, I have however done one for calproctectin (which came back normal, and thus apparently ruled out IBD, which I kind of believe in a way) and one for different bacteria, which was never cultured because I did not produce loose stool. But, last few times I've been in the loo, they've been pretty much black, from what I can tell. But, I'll have to update you all and myself on that next time I need to go to the toilet - which will probably be soon, as I've decided I wanted to go to the gym again tonight - even if it's doing light exercise.

In response to your question, no I haven't. It sounds possible that they could be spasming, have you had a look on the internet to see if they spasm so much like that?

Thanks for your response by the way.

UnXmas · Jul 17, 2015

How do you get to see a colorectal specialist on the NHS?

Your GP can refer you to a colorectal specialist, it works the same way as any other referral.

kellehbeans · Jul 17, 2015

UnXmas said:
Your GP can refer you to a colorectal specialist, it works the same way as any other referral.

I think I'm going to need some luck for this. Think I'll give myself another week and see if it heals. Otherwise, I'll be trying to see a different doctor to the one who has been dealing with my gut problems. I don't want to have to deal with her, ever again.

UnXmas · Jul 17, 2015

Izzie said:
I also was wondering whether any of you with reflux (or not, I mean I don't know what's causing this) have experienced a sort of smasping/twitching feeling in the chest?

I used to think this was my heart freaking out, but I've had EKGs that have been normal and no doctor seems to think it's my heart, and my pulse is normal immediately following these little episodes, so I'm starting to think it's my stomach/esophagus freaking out somehow.

I have bad reflux but haven't ever noticed any twitching.

UnXmas · Jul 17, 2015

kellehbeans said:
I think I'm going to need some luck for this. Think I'll give myself another week and see if it heals. Otherwise, I'll be trying to see a different doctor to the one who has been dealing with my gut problems. I don't want to have to deal with her, ever again.

If you've been diagnosed with a fissure and haemorrhoid, any reasonable GP (hopefully you'll find one!) should be ok with referring you to a colorectal specialist if you also explain the symptoms you're having.

kellehbeans · Jul 17, 2015

UnXmas said:
If you've been diagnosed with a fissure and haemorrhoid, any reasonable GP (hopefully you'll find one!) should be ok with referring you to a colorectal specialist if you also explain the symptoms you're having.

She just told me to get over it basically, my pain, both rectum and stomach pain. She was really unhelpful.

EDIT: Can out of hours doctors on 111 refer you?

DustyKat · Jul 18, 2015

Cat-a-Tonic said:
Kelleh, I had all that testing done through my GP, although I'm not sure if things are done differently in the UK than they are in the US. But yes, it's definitely worth asking about. Like I said, do a bit of research first, so that if/when your GP inquires as to why you're asking for certain tests, you're able to justify your requests.

Ending up at death's door is one way to get a diagnosis, but it's far from the ideal way! DustyKat hasn't been active on the forum lately so I'm not sure if she'll see this, but her daughter got diagnosed that way, with emergency surgery and everything being very touch and go. It was awful for both Dusty and her daughter. Getting a diagnosis does not and should not mean that you need to be nearly dying.

@kellehbeans, so sorry for the late reply!

I know there has been a lot of water under the bridge since Cat tagged me into this. Cat is spot on with what happened with my daughter, to say it wasn’t pleasant would be a major understatement.

There were many omissions in her care in the lead up her diagnosis and it should never have progressed to the point it did.

I will just pick up on a couple of things and since I have not read through the thread forgive me if I am asking what you have already answered.

Firstly, IBS does not cause structural changes to the bowel. So if you have changes then it is not due to IBS.

Secondly, no test is foolproof so a normal FC is not the be all and end all. It is not a diagnostic test and there is still some conjecture out there as to its sensitivity if disease is located in the small bowel. Normal bloods when flaring are far from a rare occurrence on this forum.

Have you had scopes done?
Given what I have best practice should be exercised on the docs part and scopes be done.

Perhaps push for a ASCA blood test if they are reluctant to go with scopes.

ASCA testing for Crohn's disease:

The anti-Saccharomyces cerevisiae antibody (ASCA) has over recent years been found to be a useful diagnostic marker for Crohn’s disease. Moaven and Partners Pathology is now performing this test in-house. Results will ordinarily be available within one day of request.

Important points about ASCA testing:

ASCA testing involves determination of the both the IgA and IgG class antibodies. The test is considered abnormal if either or both IgA and IgG antibodies are positive.

The ASCA test is positive in approximately 60-70% of patients with Crohn’s disease, 10-15% of patients with ulcerative colitis and only 0-5% of healthy control subjects. Therefore, the ASCA is particularly useful in helping to differentiate between these two forms of inflammatory bowel disease. Because a significant minority of Crohn’s disease patients do test negative for ASCA, a negative result does not exclude the diagnosis.

Whilst ASCA appears to be reasonably specific for Crohn’s disease, positive results have also been reported in patients with coeliac disease.

Amongst the Crohn’s disease patient population, those testing positive for ASCA appear to have a poorer prognosis than those testing negative. For example, ASCA-positive patients are more likely to develop complications (eg, internal fistulas, fibrostenosis, perianal disease) or require surgical intervention.

As for many other autoimmune disorders, positivity for ASCA may precede clinical disease manifestations by several years.

In the evaluation of patients with suspected inflammatory bowel disease, testing for ASCA is often combined with testing for ANCA. Patients with Crohn’s disease may exhibit the combination of ASCA-positive but ANCA-negative results, whereas those with ulcerative colitis may exhibit the opposing profile of ASCA-negative but ANCA-positive results. When positive in ulcerative colitis, the ANCA usually exhibits the perinuclear (pANCA) pattern.

When to order the ASCA test:

For patients with features of inflammatory bowel disease, to help differentiate Crohn’s disease from ulcerative colitis (order together with ANCA).

For patients with known Crohn’s disease, to help assess risk for disease complications and likely need for surgery.

http://www.moavenandpartners.com/doctors/information_form/asca-testing-for-crohns-disease.shtml

Dusty. xxx

kellehbeans · Jul 18, 2015

@DustyKat Don't worry, I appreciate your response! [emoji5]️

You have put my mind at ease - although, I'm sure you know with your daughter, that if you don't have any indication of inflammation from blood tests or stool tests, then they don't take you seriously. I don't know how much you've read of this thread, but I had an horrible experience of a GP appointment in the week. They just keep fobbing me off!

I've had no scopes done as of yet due to not have seen a GI yet (4 month wait, appt is 10th sept), but hoping to get them soon.

That ASCA test sounds like a good one! I will have to ask about that one - I need to sort out this 'haemorrhoid' out, but gets worse by the day. I can see that test has some failure rate, I like it when they're honest - my doctor tried to convince me all were 100%...

Thanks so much

xx

DustyKat · Jul 18, 2015

Oh yeah, I know all about being fobbed off! It sucks. :ymad:

I hope all goes well with the GI appointment and you get some much needed answers. :ghug: Shame you have to wait so long but given your symptoms and unresolved abdominal pain scopes should be done.

Did you have Faecal Occult Blood (FOB) x3 done yet? If not get the GP the order that as that is a worthwhile test while you are waiting.

Rest assured, not one test is 100% accurate and that includes imaging as well pathology.

Dusty. xxx

UnXmas · Jul 18, 2015

kellehbeans said:
She just told me to get over it basically, my pain, both rectum and stomach pain. She was really unhelpful.

EDIT: Can out of hours doctors on 111 refer you?

I don't think so, though I've never tried. It may be worth asking but I think a doctor has to see you in person to do a referral. And the people answering 111 calls aren't doctors, so I'm not sure they'd have the authority to do so.

http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx

kellehbeans · Jul 18, 2015

UnXmas said:
I don't think so, though I've never tried. It may be worth asking but I think a doctor has to see you in person to do a referral. And the people answering 111 calls aren't doctors, so I'm not sure they'd have the authority to do so.

I generally have a doctor call me back - the receptionists are pretty useless!

kellehbeans · Jul 18, 2015

DustyKat said:
Oh yeah, I know all about being fobbed off! It sucks. :ymad:

I hope all goes well with the GI appointment and you get some much needed answers. :ghug: Shame you have to wait so long but given your symptoms and unresolved abdominal pain scopes should be done.

Did you have Faecal Occult Blood (FOB) x3 done yet? If not get the GP the order that as that is a worthwhile test while you are waiting.

Rest assured, not one test is 100% accurate and that includes imaging as well pathology.

Dusty. xxx

I hope so too! Thank you.

They don't like to do scopes apparently because of risk factors. Not had FOB done, had the calprotectin and that's it, as my other was rejected for not being loose stool.

Izzie · Jul 18, 2015

kellehbeans said:
I hope so too! Thank you.

They don't like to do scopes apparently because of risk factors. Not had FOB done, had the calprotectin and that's it, as my other was rejected for not being loose stool.

Risk factors?

I've had not one, not two - but THREE scopes done this year so far and no one's even mentioned that there's any particular risk involved. What are they, exactly?

I feel crappy today. I get this false sense of security when I stick to my dietary restrictions and take my meds properly that I'm like "oh I can have ONE bite of this thing" - and the answer is always no, no I cannot. And then I feel bad again for days

kellehbeans · Jul 18, 2015

@Izzie - Basically, I was explained that endoscopy carries a bit of a risk factor in the sense that it could go wrong and puncture the lung - which is rare of course, but can happen. That's how I was told, anyway. He was actually from a quite useful doctor. I understood, they apparently do it as a last resort.

I know the pain of that - I've just had fish & chips - oops! But I munched on 2 small bits of pizza too before I went to the fish & chip shop... Joys of being out at the pub all day drinking water, watching my dear old dad getting drunk...

Izzie · Jul 18, 2015

kellehbeans said:
@Izzie - Basically, I was explained that endoscopy carries a bit of a risk factor in the sense that it could go wrong and puncture the lung - which is rare of course, but can happen. That's how I was told, anyway. He was actually from a quite useful doctor. I understood, they apparently do it as a last resort.

I know the pain of that - I've just had fish & chips - oops! But I munched on 2 small bits of pizza too before I went to the fish & chip shop... Joys of being out at the pub all day drinking water, watching my dear old dad getting drunk...

Yikes, I'm glad I didn't know about that risk before I had mine

I think the biggest risk during mine was for the doctor. My first scope I clocked the guy in the face, kicked the nurse, grabbed the scope and threw it or something, and tried to walk off. I was sedated so I have very little recollection of this though.

Yeah, food used to be at least a little bit fun, and definitely social. Now it's just a pain...

kellehbeans · Jul 18, 2015

Izzie said:
Yikes, I'm glad I didn't know about that risk before I had mine I think the biggest risk during mine was for the doctor. My first scope I clocked the guy in the face, kicked the nurse, grabbed the scope and threw it or something, and tried to walk off. I was sedated so I have very little recollection of this though.

Yeah, food used to be at least a little bit fun, and definitely social. Now it's just a pain...

Oh gosh, I'm sat here laughing! That must've been quite scary for the staff though! Maybe we are the risk - not the scope itself!! [emoji23]

It is - I wish I could eat ice cream still.

That's my favourite social as we have some amazing dessert parlours around in my town now!

Izzie · Jul 20, 2015

kellehbeans said:
Oh gosh, I'm sat here laughing! That must've been quite scary for the staff though! Maybe we are the risk - not the scope itself!! [emoji23]

It is - I wish I could eat ice cream still. That's my favourite social as we have some amazing dessert parlours around in my town now!

I wish I could eat somewhat normal food! I basically live off lettuce and chicken atm

I'm starting to realize that moving around a lot makes my pain worse. I've had to walk a dog for a couple hours daily for a few days and the pain is not fun. This is what my GI thinks is "typical IBS pain" - left side ribs/splenic flexure area. It hurts if I lay down on that side, it hurts when I move certain ways, hurts when I eat and it's just infinitely frustrating.

SOMETHING is clearly helping though because for a few months earlier this year that pain was so bad after every meal that I had to be on pain meds and still couldn't do anything for hours after I'd eaten something. It's not that bad now, and it doesn't really get to that level unless I'm being a complete idiot and eating horribly. I attribute that to the Omeprazole, not that I know how it could help that sort of thing...

I've never had to deal with long-term pain before and it frustrates the hell out of me. I'm used to my various illnesses coming and going in a matter of weeks, and I have not come to terms with the idea that this could be like, permanent. Very depressing thought. And on days when it's worse, like today, I immediately worry that something's (more) wrong. And I also immediately start burping like a lunatic when the pain comes on?? So weird. I hate not understanding what's going on in my own body!

Still kind of contemplating anti-depressants but then I've also been told that taking SSRIs is not the best idea when you've had/still have GI bleeding. So I'm kind of shit out of luck when it comes to dealing with that too.

Can you tell I'm having an off day? :biggrin: Hope the rest of you are well!

UnXmas · Jul 20, 2015

There are antidepressants that are less likely to cause digeative issues than others, or you may not be affected by them in that way. I've been on antidepressants a long time with no apparent increases in gi inflammation or symptoms. Before my stoma, my antidepressant actually made me constipated, which could well be beneficial if you're having diarrhoea symptoms.

I didn't know there was that kind of "typical IBS" pain, IBS seems to be whatever the patient happens to be experiencing. Except I do know it's more likely to be crampy than a steady pain. Also apparently more likely to be relieved by a bowel movement, though I for one have had pain that was relieved by a bowel movement and I don't have IBS.

kellehbeans · Jul 20, 2015

That's exactly what I thought - there's no IBS-specific pain. I also did think that IBS wouldn't locate itself in one spot - I thought it was more a mid-rift/lower pain that stretched across the entire abdomen of that section. I think it's still very vague, and unfortunately, IBS will probably always be that way.

Cat-a-Tonic · Jul 20, 2015

Izzie, I am sorry but I laughed when you said you punched the doctor!

I've been awake & talking when I was supposedly sedated, and like you I recall very little of what happened - but apparently the worst I did was complain that I couldn't see what was happening on the monitor because I didn't have my glasses on (I annoyed my GI for sure, but I didn't hit him). Even so, I must have been pretty annoying, because my GI said I get to have propofol for all future scopes (anesthesia rather than sedation) so I'll be completely knocked out. I'm surprised they didn't tell you something similar, for their own well-being!

Yes, there are risks to scopes although they're generally a very safe procedure. There's a small risk of perforation but I think the risk is something like 1 in 1,000. I've had 5 total scopes so far - 2 upper endoscopies, 2 colonoscopies, and 1 flexible sigmoidoscopy, and I've never had any issues with any of my scopes aside from the previously mentioned sedation failure and me being awake and talking and annoying my GI.

Izzie · Jul 20, 2015

This is the same doctor who claimed that burping 100 times in an hour is "normal" because I'm just "thinking about it too much" so honestly I take everything he says with a grain of salt.

And yeah this pain is not the least bit crampy, it feels like something is stuck under my ribs. Usually worse if I have bad gas, tbh. I'm thinking it's some kind of inflamed/irritated area that acts up when things... pass, so to speak. It ALWAYS hurts on palpation too so that's, not very IBS-y

And UnXmas I did not know that! I should inquire further. I have no desire to have to live with full-blown clinical depression in the midst of all this so it's nice to have options should the need arise...

Izzie · Jul 20, 2015

Cat-a-Tonic said:
Izzie, I am sorry but I laughed when you said you punched the doctor! I've been awake & talking when I was supposedly sedated, and like you I recall very little of what happened - but apparently the worst I did was complain that I couldn't see what was happening on the monitor because I didn't have my glasses on (I annoyed my GI for sure, but I didn't hit him). Even so, I must have been pretty annoying, because my GI said I get to have propofol for all future scopes (anesthesia rather than sedation) so I'll be completely knocked out. I'm surprised they didn't tell you something similar, for their own well-being!

Yes, there are risks to scopes although they're generally a very safe procedure. There's a small risk of perforation but I think the risk is something like 1 in 1,000. I've had 5 total scopes so far - 2 upper endoscopies, 2 colonoscopies, and 1 flexible sigmoidoscopy, and I've never had any issues with any of my scopes aside from the previously mentioned sedation failure and me being awake and talking and annoying my GI.

Honestly the only thing I remember about that whole thing is being injected with a sedative, feeling uncomfortable, and then coming to a little only to have people holding me down and the doctor looking at me disapprovingly saying "this isn't going to work" and me being like, genuinely pissed off that he wasn't trying harder?

I remember being like "what? why? you didn't even try!"

UnXmas · Jul 20, 2015

I've heard rumours that when they sedate you, rather than full anaesthesia, you're actually awake and feel everything, but the drug just wipes your memory of it.

Izzie · Jul 20, 2015

UnXmas said:
I've heard rumours that when they sedate you, rather than full anaesthesia, you're actually awake and feel everything, but the drug just wipes your memory of it.

Yes that's the impression I've gotten as well. And I think it's true, after every one of my upper scopes I've woken up feeling agitated but not with any real recollection as to why. I know that I hate upper scopes with a passion but I can't really say why because I have no memory of the specifics of it.

Cat-a-Tonic · Jul 20, 2015

With the exception of my most recent scope, I've always woken up from scopes feeling rested and refreshed. Izzie, do they give pain meds with the sedation there? Maybe that's why, here in the US we get good pain meds with the twilight sedation. I've always had a combo of versed & fentanyl, and the fentanyl causes me to have zero pain for the whole day (sometimes I do have pain the next day, particularly if they took a lot of biopsies or if they pumped a lot of air into me then I'll have gas pains the next day). Versed & fentanyl always worked great for me up until the sedation side of things failed at my scope a couple months ago (the fentanyl still worked fine though, I wasn't in any pain even though I was awake & talking!).

Izzie · Jul 20, 2015

Cat-a-Tonic said:
With the exception of my most recent scope, I've always woken up from scopes feeling rested and refreshed. Izzie, do they give pain meds with the sedation there? Maybe that's why, here in the US we get good pain meds with the twilight sedation. I've always had a combo of versed & fentanyl, and the fentanyl causes me to have zero pain for the whole day (sometimes I do have pain the next day, particularly if they took a lot of biopsies or if they pumped a lot of air into me then I'll have gas pains the next day). Versed & fentanyl always worked great for me up until the sedation side of things failed at my scope a couple months ago (the fentanyl still worked fine though, I wasn't in any pain even though I was awake & talking!).

I have no idea, to be honest. I'm sure they've told me but I do not recall at all. Whatever they give you for colonoscopies was fun though, I loved everyone that day, I was flirting with EVERYONE and everything that moved, it was hilarious. Trying to flirt with a scope where the sun doesn't shine is... well, it's ballsy, I guess

But upper scopes - yikes. I've woken up all "fight me!" every time haha.

Izzie · Jul 21, 2015

I am freaking furious.

Called my hospital about transferring to the city hospital where I'll be living from next week. The whole pill cam thing? NOT A WORD about it in my chart. The fact that I still have bleeding? NOT A WORD. The nurse was super confused, I was pissed. I'm starting to feel insane, I had to call my mother who was with me for the GI appointment to ask if I had misunderstood something, but no, she agreed that he'd definitely said pill cam. For sure, no doubt.

But my chart says I have IBS and they're done with me, basically.

WHAT THE FRICKING FRICK IS WRONG WITH PEOPLE?!

This is the second time at this hospital that I have been told one thing by a doctor to my face only to have it not ever get put down in my chart. "You have GERD" "Nothing in the chart about that" - "We're doing a pill cam by the end of the summer" "No, you just have IBS and you're fine"

The nurse agreed with me that it was strange, and I put my foot down and said, like, excuse me but I'm not leaving it like this with bleeding and anemia that no one can explain. And she was like "no, no, I definitely agree with you".

Cannot WAIT for this transfer. This hospital is a freaking joke. The administration seems non-existant for this to happen TWICE.

kellehbeans · Jul 21, 2015

Izzie said:
I am freaking furious.

Called my hospital about transferring to the city hospital where I'll be living from next week. The whole pill cam thing? NOT A WORD about it in my chart. The fact that I still have bleeding? NOT A WORD. The nurse was super confused, I was pissed. I'm starting to feel insane, I had to call my mother who was with me for the GI appointment to ask if I had misunderstood something, but no, she agreed that he'd definitely said pill cam. For sure, no doubt.

But my chart says I have IBS and they're done with me, basically.

WHAT THE FRICKING FRICK IS WRONG WITH PEOPLE?!

This is the second time at this hospital that I have been told one thing by a doctor to my face only to have it not ever get put down in my chart. "You have GERD" "Nothing in the chart about that" - "We're doing a pill cam by the end of the summer" "No, you just have IBS and you're fine"

The nurse agreed with me that it was strange, and I put my foot down and said, like, excuse me but I'm not leaving it like this with bleeding and anemia that no one can explain. And she was like "no, no, I definitely agree with you".

Cannot WAIT for this transfer. This hospital is a freaking joke. The administration seems non-existant for this to happen TWICE.

I actually felt angry reading this. I'm really sorry you're going through that with your hospital.

Izzie · Jul 21, 2015

kellehbeans said:
I actually felt angry reading this. I'm really sorry you're going through that with your hospital.

I mean at first I thought I was unlucky with a couple sloppy doctors but I'm starting to realize that this hospital is just a MESS. It seems to be the common opinion. It's like beating your head against a brick wall.

kellehbeans · Jul 21, 2015

@Izzie - I can understand. I'd be hitting my head against a brick wall too. That is absolutely awful, I'm so sorry you are being treated this way. I've had experience with people not writing things down, but this was just in my doctor's surgery - not hospital. How can they say you have IBS and be 'fine'? Even people with IBS are not 'fine', so the fact they said that is just infuriating.

Izzie · Jul 21, 2015

kellehbeans said:
@Izzie - I can understand. I'd be hitting my head against a brick wall too. That is absolutely awful, I'm so sorry you are being treated this way. I've had experience with people not writing things down, but this was just in my doctor's surgery - not hospital. How can they say you have IBS and be 'fine'? Even people with IBS are not 'fine', so the fact they said that is just infuriating.

Exactly. I'm SO MAD. I mean either they're just so sloppy they literally forget to put things down in charts, which is not a good sign. OR they straight up lie to their patients to temporarily placate them? Either way it's bad.

I don't know whether to cry, laugh, or punch something to be honest

kellehbeans · Jul 21, 2015

Izzie said:
Exactly. I'm SO MAD. I mean either they're just so sloppy they literally forget to put things down in charts, which is not a good sign. OR they straight up lie to their patients to temporarily placate them? Either way it's bad.

I don't know whether to cry, laugh, or punch something to be honest

When you do transfer hospitals - maybe you need to go in and explain to them how useless yours is and what they've done and what they've said and perhaps they'll listen to you?

I think you should just do all three. It'd make you feel better. Maybe go and sit in a corridor of the hospital and act like a maniac.

Izzie · Jul 21, 2015

kellehbeans said:
When you do transfer hospitals - maybe you need to go in and explain to them how useless yours is and what they've done and what they've said and perhaps they'll listen to you?

I think you should just do all three. It'd make you feel better. Maybe go and sit in a corridor of the hospital and act like a maniac.

End up locked in a psych ward, that'd be the ticket :biggrin:

Nurse just called back. "He doesn't seem to have the same view on what you've decided," she says. I said that my mother was also in that room with us and she too is of the opinion that this was all a done deal. And to that she says "well sometimes we misunderstand each other".

HOW would I have misunderstood "okay, you'll have papers sent to you about a pill cam then and we'll make sure to get that done by the end of the summer". HOW IS THAT OPEN FOR INTERPRETATION?!

So now he's going to call me tomorrow to "discuss" this. I honestly don't know if I can make it through a phonecall with this person.

Starting to wonder whether I should just ask for my charts printed out and bring them to a new doctor in the city and just go from there?? I am at a loss here, honestly.

kellehbeans · Jul 21, 2015

@Izzie - On what YOU'VE decided? Well, maybe if you misunderstand each other, things should be written down. I think you need to take notes or maybe get your nurse to write what she thinks and print it off or write it and hand it to you.

I hate the fact that they are messing you about and then making you wait a full day, which is obviously doing no good to your mental health. I really dislike this hospital you go to. Don't feel to lost, you need to get them write down when you have an appointment if you do go back to them.

Get your charts printed out though, definitely.

I've just been reminded that my doctor did not ask me if I still smoke - which should be a major question I would have thought, due to her telling me to get rid of stimulants (that only being tea and coffee), and she KNOWS I still 'smoke' according to her record, anyway. I only use an e-cigarette now, but it's still nicotine.

Izzie · Jul 21, 2015

kellehbeans said:
@Izzie - On what YOU'VE decided? Well, maybe if you misunderstand each other, things should be written down. I think you need to take notes or maybe get your nurse to write what she thinks and print it off or write it and hand it to you.

I hate the fact that they are messing you about and then making you wait a full day, which is obviously doing no good to your mental health. I really dislike this hospital you go to. Don't feel to lost, you need to get them write down when you have an appointment if you do go back to them.

Get your charts printed out though, definitely.

I've just been reminded that my doctor did not ask me if I still smoke - which should be a major question I would have thought, due to her telling me to get rid of stimulants (that only being tea and coffee), and she KNOWS I still 'smoke' according to her record, anyway. I only use an e-cigarette now, but it's still nicotine.

Honestly if TWO people in a room misunderstand you and you're a doctor? You should consider taking a class to better your darn communication skills. And it's not like the pill cam was my idea? Like, he suggested it?

It wasn't a misunderstanding, he's just a butt, excuse my language. He LITERALLY told me to wait for a letter in the mail with an appointment. I don't see how that can be misunderstood. Are doctors so stressed and overworked that they just say things and forget them in the time it takes to get to a computer to write it down?

I'm not even sure I should take that call tomorrow I'm so furious I'll just end up sounding bratty and agitated and get another "it's stress" speech.

I really don't know what to do at all. Like for someone who already has ADHD and the focus and organizational skills of a drunk hamster, this is a friggin nightmare.

UnXmas · Jul 21, 2015

I'm sorry. It doesn't surprise me though. I would just start afresh with a new doctor though. A new doctor isn't necessarily going to just follow everything written by someone else, they might think differently and want to run different tests anyway.

Izzie · Jul 21, 2015

UnXmas said:
I'm sorry. It doesn't surprise me though. I would just start afresh with a new doctor though. A new doctor isn't necessarily going to just follow everything written by someone else, they might think differently and want to run different tests anyway.

Yes that is my thought as well. I'm going to take the call tomorrow and just ask him to refer me to a specialist at my new hospital and I'll go from there. I still need him to write the referral, but I'm well within my rights to request a second opinion if the conversation doesn't go well, so.

It oddly makes me feel better that you're not surprised. Sometimes I really do feel crazy, for having this happen over and over and over.

kellehbeans · Jul 21, 2015

Izzie said:
Honestly if TWO people in a room misunderstand you and you're a doctor? You should consider taking a class to better your darn communication skills. And it's not like the pill cam was my idea? Like, he suggested it?

It wasn't a misunderstanding, he's just a butt, excuse my language. He LITERALLY told me to wait for a letter in the mail with an appointment. I don't see how that can be misunderstood. Are doctors so stressed and overworked that they just say things and forget them in the time it takes to get to a computer to write it down?

I'm not even sure I should take that call tomorrow I'm so furious I'll just end up sounding bratty and agitated and get another "it's stress" speech.

I really don't know what to do at all. Like for someone who already has ADHD and the focus and organizational skills of a drunk hamster, this is a friggin nightmare.

Butt was definitely not a word I would have called them, I can think of other, far worse words.

Maybe you need to try and calm yourself down, spend today writing down what you want to say tomorrow, and how you will respond if they say certain things, just so you have something in front of you and you can try and keep your cool.

If you can get a second opinion, you should really be pushing for that. I don't know what it's like for you in Sweden (I think that's where you said you were!), but here in the UK, according to what I have heard, if you do request a second opinion, they may start taking their selves seriously and wonder what on earth they can do to improve.

Izzie · Jul 21, 2015

kellehbeans said:
Butt was definitely not a word I would have called them, I can think of other, far worse words.

Maybe you need to try and calm yourself down, spend today writing down what you want to say tomorrow, and how you will respond if they say certain things, just so you have something in front of you and you can try and keep your cool.

If you can get a second opinion, you should really be pushing for that. I don't know what it's like for you in Sweden (I think that's where you said you were!), but here in the UK, according to what I have heard, if you do request a second opinion, they may start taking their selves seriously and wonder what on earth they can do to improve.

I took an angry nap, so I feel better

I have no idea how second opinions work here, really. But with moving and all I'll have a new doctor regardless, so...

I have no idea what to say, tbh. It's hard to disagree with doctors, feels like they have all the power. Right now I'm in my fascinating stage of belching like 6 times in a minute, so that's fun... I guess I'll just have to say that even if I DO have IBS, which doesn't sound right to me or to at least a handful of other doctors I've spoken to, I still need treatment for it.

kellehbeans · Jul 21, 2015

Izzie said:
I took an angry nap, so I feel better

I have no idea how second opinions work here, really. But with moving and all I'll have a new doctor regardless, so...

I have no idea what to say, tbh. It's hard to disagree with doctors, feels like they have all the power. Right now I'm in my fascinating stage of belching like 6 times in a minute, so that's fun... I guess I'll just have to say that even if I DO have IBS, which doesn't sound right to me or to at least a handful of other doctors I've spoken to, I still need treatment for it.

I don't know what belching can be an indicator of, but I know I'm EXACTLY the same - even after water. I amuse the guys in my office with it.

Cat-a-Tonic · Jul 21, 2015

I belch a lot during workouts - I think (for me at least) it must be a GERD thing, as my GERD is triggered by exercise. The belching for me seems to be a warning sign, it's like my body saying I better hurry up and finish my workout or worse symptoms will follow (reflux, nausea, etc). It does usually keep the creepers away from me at the gym!

If a guy is checking me out, I just unleash a wicked belch and carry on with my workout. Ha ha.

kellehbeans · Jul 21, 2015

@Cat-a-Tonic - Yep, exercise does me too! Anything makes me burp pretty much. The men call me classy in here. >.> Haha! I just yell 'IT'S A MEDICAL CONDITION!' and that has them in more fits of laughter.

Izzie · Jul 21, 2015

Haha, I too have associated it to reflux as it always seems to get worse if I eat something acidic.

I think a LOT of my problems could be GERD-related, honestly, but doctors don't even agree on whether I actually have that or not so I'm not getting much as far as treatment options go...

kellehbeans · Jul 21, 2015

@Izzie - that sucks. I have to admit, I'm exactly the same but I have other trigger foods that are meant to help!

So after a few days of eating relatively straight forward, in the sense of no weird things and things I know trigger me in GERD and stomach - my stomach is making the worst gurgling noise EVER after eating quinoa mixed with red & white bulgar wheat. Yesterday's meal was no different today, except I had GF pasta. So here goes a stomach trigger into my list!!!

UnXmas · Jul 21, 2015

I have GERD, don't think I've ever burped in my life. I guess maybe that has something to do with my inability to vomit?

Cat-a-Tonic · Jul 21, 2015

Izzie, hopefully when you move you'll have some MUCH better doctors who can at the very least diagnose and treat the GERD because that's ridiculous that they can't even figure that part out. My GP diagnosed me with GERD right away just based on the symptoms I described to him (it was confirmed later with testing but the initial diagnosis and treatment was purely based on symptoms). I really hope your new doctors have half a brain and can at the very least figure out the GERD side of things!

Kelleh, we are such classy ladies.

I've already had the burps today and I'm heading to the gym in about 30 minutes, so that's going to be an interesting workout. At least the gym I'll be in today will likely be empty (I belong to a big paid membership gym, I have a home gym, and there's also a little gym in the basement of my workplace - I'll be heading to the little gym at work today and I'm usually the only one in there, so I can belch away and not gross out any of my colleagues).

Cat-a-Tonic · Jul 21, 2015

UnX, maybe it has something to do with your gastroparesis? I'm not sure if that would cause inability to belch/vomit. I don't seem to have gastroparesis but I definitely have GERD and I'm a champion belcher.

gadgetninjette91 · Jul 21, 2015

kellehbeans said:
@Izzie - Basically, I was explained that endoscopy carries a bit of a risk factor in the sense that it could go wrong and puncture the lung - which is rare of course, but can happen. That's how I was told, anyway. He was actually from a quite useful doctor. I understood, they apparently do it as a last resort.

I know the pain of that - I've just had fish & chips - oops! But I munched on 2 small bits of pizza too before I went to the fish & chip shop... Joys of being out at the pub all day drinking water, watching my dear old dad getting drunk...

If you're referring to upper endoscopy, you shouldn't have too much of a problem. Sedation works wonders. Your throat might feel a little sore when you wake up and if they take biopsies you could feel some pain for a few days but it's temporary. I'm either delaying or canceling my upper endoscopy for financial reasons as I don't know how necessary it really is but if you have to have one you should be just fine, I know how nerve racking it is to even think about having a tube put down your throat but you won't feel a thing I can almost promise.

As for me, I'm doing better. Trying to just enjoy my time in remission before my Crohn's decides to come back. I'm responding better physically to Apriso than Pentasa so I guess things could be worse. The worst part is not knowing when it'll come back but I know it's coming eventually...could be months, could be years. But I try to push that fear to the back of my mind. Especially with jejunoileitis, there's just much more to worry about long-term even though I'm doing ok now. I suppose I should just be grateful that the weaker meds are taking care of things this early in the disease course. Mind over matter basically.

Being dismissed or the fear of being dismissed is the biggest trigger for having traumatic memories come back and repeat themselves in my mind over and over. I re-experience every feeling of dread and insecurity and helplessness. In a nutshell, I have a stepmother who completely belittled my problems as a teenager when I was having very serious issues in school, with other people, with just being a teenager in general. She used to tell me I should stop complaining and that I was a drama queen and that I had no real problems in life and that everything I could even conceive as being a problem in life was imaginary and all in my head. I wasn't getting proper care or support from either her or my father and I had a lot of unaddressed issues that just kept building and building. Tried something irreversible a couple of times because of the way she made me feel and the way life just made me feel...and even after that she still told me I had no real problems in life and that I just wanted to start drama. That's why I'm so afraid to open my mouth sometimes and admit that I'm struggling. I just tell myself that no one wants to hear it and that I have no real problems in life. To this day I have horrible mental flashbacks to all of the feelings of helplessness and insecurity. It's part of why I can't be as open with doctors as I need to be. Was already dismissed by my first doctor who completely overlooked my diagnosis (had to see a second doc to even admit that I had Crohn's based on everything on the table). I'm just afraid of being written off which, alongside that, comes the repeated "you have no real problems in life, stop causing drama" crap that came from my awful teenage years. That's only a very small part of all of the trauma I've faced in my life but it had a significant impact, way worse than any physical trauma I have faced.

Sorry for the long post but I figure if I don't talk about what's bothering me it'll just build up again before I have another breakdown. Hope everyone is doing well.

UnXmas · Jul 21, 2015

kellehbeans said:
@Izzie - that sucks. I have to admit, I'm exactly the same but I have other trigger foods that are meant to help!

So after a few days of eating relatively straight forward, in the sense of no weird things and things I know trigger me in GERD and stomach - my stomach is making the worst gurgling noise EVER after eating quinoa mixed with red & white bulgar wheat. Yesterday's meal was no different today, except I had GF pasta. So here goes a stomach trigger into my list!!!

It may be that you'd have got the symptom whatever you ate. Sometimes just eating itself brings symptoms on, so you don't want to be cutting out foods for no reason.

Izzie · Jul 21, 2015

I couldn't even burp before all this started! Like, completely incapable. So it's a hilarious new thing for me to just suddenly make weird noise

UnXmas · Jul 21, 2015

Cat-a-Tonic said:
UnX, maybe it has something to do with your gastroparesis? I'm not sure if that would cause inability to belch/vomit. I don't seem to have gastroparesis but I definitely have GERD and I'm a champion belcher.

For some people gastroparesis causes nausea and vomiting, so I don't think that's it.

I was also diagnosed with GERD (and gastroparesis) just by symptoms, then later it was confirmed by endoscopy, which showed inflammation caused by the reflux (and gastric emptying study confirmed gastroparesis). It's usually an easy diagnosis; difficulties are usually only about ruling out morevserious causes of the symptoms.

Cat-a-Tonic · Jul 21, 2015

Gadget, that sounds awful and I'm so sorry. I wish I could say something to help, but I'm definitely here listening and sending you big virtual hugs. For what it's worth, your problems are valid and you're allowed to vent, complain, talk it out, whatever helps. We're here for you.

gadgetninjette91 · Jul 21, 2015

Cat-a-Tonic said:
Gadget, that sounds awful and I'm so sorry. I wish I could say something to help, but I'm definitely here listening and sending you big virtual hugs. For what it's worth, your problems are valid and you're allowed to vent, complain, talk it out, whatever helps. We're here for you.

Thanks, that's all I've really wanted more than anything is just a validation of my feelings. I've been made to feel like I'm not allowed to have them. So I just appreciate having a place to go and have support and support other people.

@Cat, you mentioned you had some issues with arthritis? I've recently started having pain in my knees and ankles and down my entire spine. Has any of this happened to you? Don't know if it's actually arthritis but it feels like joint pain to me, my spine in particular it's the individual vertebrae that hurt sometimes.

kellehbeans · Jul 22, 2015

Cat-a-Tonic said:
Kelleh, we are such classy ladies. I've already had the burps today and I'm heading to the gym in about 30 minutes, so that's going to be an interesting workout. At least the gym I'll be in today will likely be empty (I belong to a big paid membership gym, I have a home gym, and there's also a little gym in the basement of my workplace - I'll be heading to the little gym at work today and I'm usually the only one in there, so I can belch away and not gross out any of my colleagues).

I don't think I mind grossing out people, I'm quite a gross person I think. :ybiggrin:

@gadgetninjette91 - My Granddad is the saviour of this - everybody keeps telling me horror stories of the pain of an upper endoscopy, but my Granddad had one and he said it was a tiny bit sore, but nothing horrific. Everybody else has been trying to scare me. Unfortunately for them, I trust my Granddad pretty much more than anybody else in this world!

It's not a long post sweetheart, but I actually see myself in you a lot in your post just from different people. I can completely empathise, and you need to realise, the pain you are feeling, is there and just because somebody has told you 'it's all in your head', you know at heart it isn't - they don't know you aren't having any pain - they're not mind-readers! You have every single right to get any worries or concerns out off of your chest, without judgement.

I'm really sorry you had to go through this. I just want to send you oodles of hugs, every time you post, I can relate to you. But, as Cat said, we are here for you. If you need a vent, you can message me if you'd like.

@UnXmas - Ah, no I'm not cutting for no reason. Just massive stomach gurglings that did not happen the night before! I still have some of the pack to eat, so I'll try it again in a week or so and see if it happens again. I'm still learning - I know chocolate is the biggest trigger and that can definitely stay out of my diet - and stuff with glucose syrup and/or fructose!!

Izzie · Jul 22, 2015

@kellehbeans Finding trigger foods is so hard! Because you so rarely eat an isolated food it can be so difficult to figure out what it was in a meal that you reacted to. And when I'm having a bad few days I have an adverse reaction to anything.

I'm SO nervous about this phone call that's happening probably very soon. It'll make or break my day I think

kellehbeans · Jul 22, 2015

@Izzie - that's why they tried to get me to do the low-fodmap diet. Which, was OK, but I was still going through stages of binging and generally just ruining the fact I was trying to do it, so it made me quite depressed. I have noticed though however, that eating 3 meals a day is really controlling my need to binge etc. I think my body was expecting food constantly when I was eating 5-6 times a day. I feel much more controlled on 3 meals a day. Definitely would not go to 2 meals like a day like my jobsworth doctor told me to do.

Let us know how it goes. Just don't be nervous. Have you written down stuff yet so you know what you can say and what need to ask or say, just so you can try and keep your cool? Did they give you a time at all?

Izzie · Jul 22, 2015

kellehbeans said:
@Izzie - that's why they tried to get me to do the low-fodmap diet. Which, was OK, but I was still going through stages of binging and generally just ruining the fact I was trying to do it, so it made me quite depressed. I have noticed though however, that eating 3 meals a day is really controlling my need to binge etc. I think my body was expecting food constantly when I was eating 5-6 times a day. I feel much more controlled on 3 meals a day. Definitely would not go to 2 meals like a day like my jobsworth doctor told me to do.

Let us know how it goes. Just don't be nervous. Have you written down stuff yet so you know what you can say and what need to ask or say, just so you can try and keep your cool? Did they give you a time at all?

I can't eat more than 3 times a day either. I mean if I get really hungry I'll snack on something maybe, but the whole small meals constantly thing is a no go. Eating makes me feel horrible so if I space it out I feel horrible all the time

Aaaand it should be happening within the next hour or so. I'm not going to say much, really, I don't want to get into some emotional argument. I'll just say that I still have bleeding which doesn't add up with an IBS diagnosis (and that I have pretty bad reflux issues which I feel like I need more help with) and I'd like further contact with a GI in my new city. There's no point in trying to wrangle something else out of this guy since I'll likely not see him again.

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